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Topic: Calling all triple negative breast cancer patients in the UK

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: Sep 12, 2010 08:43AM - edited Jan 23, 2021 05:23AM by sylviaexmouthuk

sylviaexmouthuk wrote:

With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.

I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 15 years and 07 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!

I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 27, 2020 10:15AM sylviaexmouthuk wrote:

Hello Gill,

I thought you might like to know about The Chancellor. "The money that appears to have been splashed out on the Chancellor's flat above No. 10 Downing Street – Boris Johnson nabbed the bigger pad over No. 11 – and his office looks a shade insensitive as he readies the middle classes for tax rises help with the costs of the coronavirus and a potential no-deal Brexit.

"The Treasury has admitted to an outlay for the first two quarters of this year of £374,577 on the rooms that he uses. The figures, which are released as part of the drive towards greater transparency, somewhat mystifyingly as 'cleaning office and common areas' including the 'Chancellor's office'.

"Clearly all that money could not have been spent on cleaning alone. The transaction description was given as 'sale of fees and charges – No. 10 Flat Recharge Q1 and Q2 20/21' in the official documents."

What do you make of that, Gill? It boggles the mind.

I found this in The New European newspaper of November 25th 2020, on page 5 under Mandrake – Tim Walker.

What a farce it is when we are told that we are all in this together. What hypocrisy. What wastefulness.

We have all this when we have children going hungry, people living on the streets, people not being paid enough to live on, in what we are told is the fourth richest country in the world!

I do hope you will have a good weekend. Do not forget to plant a nice money tree for the Spring!

Best wishes to you and all of the group who are very quiet at the moment.

Keep safe.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 28, 2020 09:18AM Rosiecat wrote:

Hello Sylvia,

Thank you for asking about Michael's back. It's much less painful than it was, though he has to keep it very straight, no picking things up, reaching or sudden movements. The reflexology table was supposed to be portable and I was able to move it and even put it in the boot of the car twenty years ago. Now it's a case of the spirit is willing but the flesh is weak. I trained as a reflexologist as it was a useful skill to have whilst volunteering at the hospice. Reflexology is probably one of the best complementary therapies for achieving deep relaxation. I didn't use oils as there are safety issues.

I read the article you pointed out in the New European. I'm extremely disappointed in the Chancellor Rishi Sunak. He has married into great wealth, (his wife has more money than the Queen), yet still feels the need to have his flat refurbished at the expense of taxpayers. On top of that, to explain away his extravagance he claims the money was needed for cleaning expenses. So much for transparency. I see that he also failed to mention companies owned by his wife and her billionaire parents. This information should be in the ministerial register. This is the most corrupt government we have seen in my lifetime.

My daughter is beyond angry about the decision to allow family gatherings over Christmas. She lives in a tier 3 area and the hospitals there simply won't be able to cope with the extra patients when Covid infection rates rise after Christmas. Cancer patients must be dismayed. I'm due to have my Zoledronic acid infusion on 9th December, I'll try to find out what is happening with cancer surgery waiting times.

I was interested to hear that the Royal Devon and Exeter had begun using the Nightingale Hospital. I wonder how they're managing to staff it? I suspect that staff will simply be moved across from the main hospital. You're probably right about students causing the spike in Exeter. It seems that Universities were unwilling to send them home because they needed the rent from student accommodation.

On another matter and one that should concern our UK posters and browsers - from what I'm able to gather from Operation Yellowhammer, the NHS at present receives 37 million drug packages from the EU every month. The supply chain isn't always reliable and there are sometimes shortages, that's before Brexit. The Government has put a contact worth just over 20 million in place to help ensure we still have supplies post Brexit. This will be a drop in the Ocean. We should also consider that many drugs need to be kept below a specific temperature, so long waits in a lorry park in Kent will be disastrous. I don't know what this will mean for cancer patients. As a member of the EU Britain shared access to drugs with other member states. We will now have to compete in bidding for meds with the rest of the world and are very unlikely to have the wherewithal to outbid large pharmaceutical companies or wealthier countries with a larger populations. I've been concerned about access to cancer treatment from the time of my own diagnosis. I'm afraid that life for NHS cancer patients post Brexit might be more difficult. If the NHS is forced to buy drugs from America it will bankrupt us and our health service will collapse.

That doesn't seem a very cheerful note to end with. This alarming aspect of Brexit appears to have been buried by Covid but could be an even greater disaster for many of us.

I do Wish we had heard back from Marias. Hoping we have more posters next week.

Wishing you both a happy and peaceful weekend.

Love,

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Nov 30, 2020 01:27AM adagio wrote:

Hello Sylvia, Gill, and everyone else,

I finally got a phone call yesterday (Saturday) from the new surgeon's secretary and I am scheduled for a phone consult this coming Friday December 4th - she did tell me that he is on call that day and if there is an emergency - my consult will be cancelled. Also - no time given to me - I have to be available between 8am and 4pm - so at least I know I have a file with them and have not fallen through the cracks. I will let you know what he says.

I am saddened to hear how awful things are in the UK - both politically and covid wise.

Unfortunately things are not that much better here - we have a prime minister who doles out money like there is no tomorrow and our economy is in a bad way and can only get worse. Sylvia - you will probably recall that each province here is responsible for its own health initiatives so each province has different covid protocols and varying levels of "lockdown". In British Columbia where I live - we are having a surge in cases and so we are to stick rigidly to our own little bubble - but like in the UK - not everyone complies with this mandate. In Quebec where our eldest son lives - they have been very strict for several months - but for 4 days over the Christmas period - all restrictions are lifted - which I think is ridiculous.

These are very challenging times in many ways and my husband and I have decided to do what is best to protect ourselves - fortunately we can still see our grandchildren and our children (only once a week) since they have been in our bubble all along and - so we feel blessed in that regard. Other than this family - we do not meet with anyone else for the time being - except of course for grocery shopping.

Keep safe and stay calm. We must remain hopeful in spite of our current situation worldwide.

Thanks for the continued support !

Dx 8/21/2012, IDC, 2cm, Stage II, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 9/24/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 11/19/2012 AC + T (Taxol) Radiation Therapy 3/24/2013 Breast
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Nov 30, 2020 05:30AM sylviaexmouthuk wrote:

Hello Gill and adagio,

Thank you for your recent posts. I found them very interesting. I shall sit down later today and answer them. For the moment I just want to say thank you, Gill, for your dedication to the thread. To adagio, thank you for taking the time to keep in touch with us all and I am so glad to read that things are progressing, if only slowly, for you.

I shall write much more later.

Love and best wishes to you both.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 30, 2020 09:20AM sylviaexmouthuk wrote:

Hello Gill,

At last I have found a bit of time to myself, so I am catching up with our thread.

I was glad to read that Michael is doing better. We all have to be careful about lifting things. I was most impressed that you had trained as a reflexologist when you were volunteering at the hospice. I have never has reflexology but I can see how it would be relaxing. Raymond did have some reflexology at our local Hospiscare centre in Exmouth when I had the nurses there visiting me during my breast cancer treatment. He also tried the Indian head massage at FORCE which was located in the grounds of the RD&E hospital. It was a relaxing place to go after breast cancer appointments. It was a lovely modern house and totally non-clinical. It was actually founded by my oncologist.

I was glad to know that you had read that article in the New European. It certainly disgusted me. It shows complete greed and contempt for the hard-earned tax money that we ordinary people have to pay out. There is certainly one rule for them and another for us. They tell us there is no magic money tree but they certainly behave as if there is one, but it is only for them. You are right when you say that this is the most corrupt government during our lifetime. I think that the Clement Atlee government of 1945 is the best one we have ever had and that one of the greatest achievements was the NHS of 1948, which is being systematically dismantled.

In that same paper there is an interesting article about how that same government set the foundation of the federal system of government in Germany and how well it has worked. We in this country have stayed buried in a mediaeval and outdated system.

I was very interested in what you had to say about Operation Yellowhammer. I shall keep an eye on this because I already get the feeling that some drugs are in short supply. I do share your concern about the state of the NHS post Brexit and what will happen when American companies get their hands on our NHS.

I do wonder where we are going with cancer treatments of all kinds. We do not have a very good reputation for cancer diagnosis, treatment and long term recovery.

I have had a difficult year this year and it does seem to be ending in the same way that it started. On January 25th there was the shock of Raymond being admitted to A&E and all that has followed. I had to fight his corner. Now I am very concerned about a close cousin, who had to be admitted to A&E after I was concerned about him and got in touch with his GP surgery. They saw him and sent him by ambulance to his hospital in London. He is very unwell with what is being described as a rare infection which they are trying to identify. He is making progress.

It is another sunless day here in Exmouth and not very motivating, but we have to plod on under Covid.

I see that the Prime Minister is once gain on his jam tomorrow journey. Let us wait for his next boring speech. I do feel strongly that he and other politicians should not be writing articles in the newspapers, or, indeed, on Facebook or Twitter. All that writing in the newspapers is biased and remunerative. They already earn too much, and are greedy for more. They should stick to working for us, which is what they overpaid for! They should be paid the National Average wage!

As you say, we would all like to hear from Marias, but I do not think it is going to happen. I have seen a couple of programmes on the television about Colombia and it is a beautiful country, but such an unsafe, violent one in which to live.

We also need to hear from Mary, Paula, Kath, Helenlouise, and Jags52. We are a strong and informed little group. I do wonder what has happened to PeterandLiz.

I must now post to adagio. It is so good that amid all of her problems she does find the time to keep us informed.

That is all for now. Love and best wishes and above all keep safe and keep the flag of common sense flying high.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Nov 30, 2020 11:28AM sylviaexmouthuk wrote:

Hello adagio,

I was so glad to see you back on the thread. I have been wondering how you are.

Reading through what is happening to you, it sounds as though your health care system is very similar to ours. I see that it is all a bit bureaucratic and that the phone consultations are very much in vogue in both countries. I am absolutely against these and think they are fraught with problems. When we phone our GP surgery we get a long-winded automated speech from the senior doctor and then a succession of buttons to press. If you manage to get a phone consultation, you will be told a doctor will be in touch at some time. As a result of that phone consultation it will be decided whether you will be accorded a face-to-face consultation with a doctor, not necessarily the one with whom you have registered. You may be asked on the phone consultation to submit photographs if your symptoms show!! This is not what the NHS was supposed to be like. Admittedly we are in the Covid-19 world but I think that, when and if things get back to normal, this procedure will stay. It was going like this a bit before the pandemic.

It is the same impersonal procedure if you phone the hospital. I have made quite a few phone calls on behalf of Raymond and you get nothing but automated responses. Sometimes you can leave a message and the last time I did this, they obviously knew I was not pleased and I did get a person phoning me back. At least I think it was a person, but it could have been a robot! I get the impression that the system is for the staff and not the patient, although I do have nothing but respect for the frontline people.

I do hope that your consultation will not be cancelled. I think it is a bit much that you have to be available between 8am and 4pm. That is too long and vague a period. You do have a life, after all. I went through all of this with Raymond, so in the end I went to the PALS system in the hospital which deals with patients complaints and comments. Within 48 hours Raymond was taken up to London for his bypass surgery.

At least, as you say, you have a file. However, your valve condition requires major surgery and should have been dealt with by now. I know you will stick up for yourself.

It looks as though both countries have useless Prime Ministers. Your one got elected on his father's name. Everything seems to have dumbed down since the days of Pierre Trudeau and Rene Leveque. Those were interesting times, whatever your politics. I think Canada should be a republic, as well as Australia and New Zealand. As they are they are treated too much like colonies. The present Trudeau has taken so much tax from our Canadian pensions that it has been quite a struggle. My good friend in Ottawa tells me that the money he has taken from us is being frittered away.

I do remember the different health systems in each province in Canada. Remember we lived in both the Province of Quebec and the Province of Ontario. We found the health service really good during the time we were there, but we know it has changed dramatically since then.

The ins and outs of lock-down are ridiculous. You have it with the different provinces and we have it with the four nations that make up the so-called United Kingdom. It is anything but united! I think that Scotland will probably separate in the not too distant future. As for Northern Ireland, it is so obviously part of the land mass of the island of Ireland and needs to be reunited.

Like you, I am against the opening up of lock-down for five days at Christmas. It goes against all common sense. In normal times Christmas here usually goes on for two weeks!

Raymond and I keep ourselves mainly to ourselves. We do not have a car now so have our main shopping delivered and for the rest we usually walk to the local shops or into town if we have an important appointment.

I cannot see the end in sight to the coronavirus and there are plenty more around. Here in the UK, especially in England, we are overpopulated, have overcrowded cities and too many people living in poverty.

Please keep in touch and let us know how you get on on Friday December 4th. We shall be thinking of you.

I do hope you are not suffering too much with your valve problem. I do hope your husband is alright. I remember that he has had serious problems in the past.

Look after yourself, keep safe, keep strong.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 1, 2020 07:07AM sylviaexmouthuk wrote:

Hello everyone,

The thread is very quiet so I thought I would post once again my story that I posted sometime ago talking about my experiences of cancer treatment. I am now 15 years and 5 months since diagnosis. When I have the time I hope to be able to post a second part to this saying how I feel at this time, all those years on. I last posted this two years ago.

It would be good to have some posts from the newly diagnosed or recently diagnosed expressing their own stories as a person with breast cancer with TNBC receptors at this strange time of Covid-19 and how it has affected your treatment and your feelings.

Best wishes to all.

Sylvia


I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.

I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.

I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.

That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.

Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.

The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.

At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.

In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.

I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.

Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.

Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.

I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.

When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.

Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.

Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.

As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.

Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.

I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.

I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.

Most hospitals here have charities offering all kinds of support to cancer patients.

I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.

Breastcancer.org is a wonderful forum and providing a marvelous service.

--sylviaexmouthuk, United Kingdom


Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 1, 2020 07:34AM - edited Dec 1, 2020 07:37AM by Rosiecat

Hello adagio,

I'll keep my fingers crossed that your consultant doesn't have any emergencies to deal with on Friday. Waiting for a phone consultation is quite stressful, my GP does this and I'm not even told whether it will be am or pm. It also means that no one else can phone in or out, as that's bound to engage the line at the very moment he calls.

Your latest news is at least a step in the right direction, but with a surge in Covid infections an early date for surgery is probably unlikely. When you first told us about your heart problems I'd hoped that you would be well on the road to recovery by Christmas and looking forward to a happier 2021. I'm still hoping.

It's sad that your health care system has deteriorated in much the same way as ours. Although scientists couldn't predict when the next pandemic would happen or what form the virus would take, they were very clear that health services needed to be prepared. NHS Trusts throughout most of the UK underwent exercises to assess how they would cope in the event of a health crisis like coronavirus. Trusts reported that they they would be seriously short of equipment, staff, hospital space, labs and so on. The Government sat on this information and no preparations were made. Even basic personal protection like masks, aprons, and gloves ran out within weeks. Covid was the priority, everything else was put on hold. It seems that it's not much different in British Columbia.

I agree with you that being taken out of restrictions for four days over Christmas is madness. Scientists are banging their heads against a brick wall when it comes to offering advice to the Prime Minister.

Keep well adagio. Hoping that both you your family stay safe within their bubbles.

Love,

Gill xxx



Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 1, 2020 09:44AM Rosiecat wrote:

Hello Sylvia,

All in all 2020 hasn't been a good year for you at all - and that's aside from Covid. Your cousin was fortunate that you intervened on his behalf. I'm wondering if his infection has been identified yet. Most labs will be short-staffed as so many people have been assigned to work on Covid, though a serious infection would surely be a priority.

Collecting cat food from the vet yesterday I heard a story. A previous customer that day had said that her father had just died from coronavirus. Apparently, he was in his 70s and had been admitted to the Norfolk and Norwich Hospital for treatment and whilst there had caught the virus. Of course, I don't know what condition he was in beforehand. However, it did make me wonder if patients who were dying from coronavirus in hospitals were admitted to hospital with Covid and then died because they had an underlying illness as is usually stated, or whether they were in hospital for treatment for a condition and then caught Covid and died. I don't think we have all the facts.

As our grandchildren won't be visiting Santa Claus this Christmas, mask or no mask, Michael has been asked to play Santa on Skype. His outfit arrived yesterday and with any luck will be convincing enough to impress a 4 and 2 year old. We were horrified that Johnson has decreed that visiting Santa will go ahead, no sitting on his knee and masks must be worn. All these older men meeting all these young children and their parents - what could possibly go wrong? Couldn't all this wait until we know whether the vaccine is working?

Large freezers are being sent to vaccination centres across the country, so it looks as though we'll be offered the Pfizer vaccine. The Oxford vaccine only needs to be kept in a fridge, but there seems to be a question mark over whether it's sufficiently effective in the over 55s. 'Good' celebrities will be used to promote the benefits of vaccination! My concern is that the vaccination is given in two doses three weeks apart. It's inevitable that many people won't bother going for the second jab. What does this mean for those who only have the first dose and presumably don't build up sufficient immunity to fight off a Covid infection if and when they come into contact with it? I know nothing about viruses or immunity but wonder what the consequences of failing to administer the vaccine in the correct dose would be?

After yesterday's cold wet weather, today we have sunshine and blue skies. Large parts of the country may have snow next week and temperatures are likely to fall below -6. I usually enjoy snow, but don't feel much like it this year.

Another Prime Minister's Questions tomorrow. I'm not sure I can really be bothered to watch any more tantrums or name calling from someone with all the gravitas of a toddler.

That's all for now. I'll keep looking out for any breast cancer news. As you say, we really need some new posters to keep us up to date. Protocols and accessibility to services/treatment does vary from area to area. Central London is well ahead of Norwich for example.

Keep well both of you.

Love,

Gill xxx





Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 2, 2020 06:53AM sylviaexmouthuk wrote:

Hello Gill,

Once again thank you for the time you are devoting to the thread. I do hope others will come forward to post because you and I are doing more than our fair share. Thee are plenty of people viewing but not making the effort to post.

It is true that this year has not been a good one for Raymond and me. Raymond is still not fully recovered and now we are trying to support a very unwell cousin on my side of the family. I am finding it very difficult getting information from the hospital and invariably when I phone direct to the ward no one answers and if they do they seem to know nothing. It was just last week that I was told that he had sepsis when he was admitted but originally they said he had a rare infection and that it was in the blood and also in a mass at the bottom if his neck near the spine. They were treating everything with extra strong antibiotics and getting his bloods and diabetes steady. I have not been told the results of the blood culture and I would like to know whether these two infections which they say are not the same, are in addition to the other two. If everything is sepsis, then this is not a rare infection. It is serious but it is not rare. I shall let you know if I find out anything, but as things stand I am not at all impressed with the hospital. It sounds like chaos.

I do not think we shall ever know what is really put on death certificates but I do think the government will do everything to keep the death rates from Covid appearing high, which I think they are. We have to remember they took about three thousand deaths off the list so the 59,000 deaths which now appears is very hard to believe.

Apparently everyone admitted to hospital is tested for Covid and is then tested again about a week later, so you can be negative on admittance, but be positive a week later, with the high probability that you have caught it in the hospital. I certainly agree that we do not have all the facts.

I do agree with you, as well, that it is foolhardy to have children and their parents visiting Santa Claus. I cannot believe what is going on. They are calling today, first day of the tiers, Wild Wednesday, and encouraging people to get out and shop! Apparently a queue started at a Primark shop at 7 am this morning!

I have just looked at the news and am in disbelief that the government is starting to roll out the Pfizer BioNtech vaccine today. We had the grinning cat Hancock on the television news full of boasting. There is no end to the arrogance and stupidity! PMQs should be interesting.

I have just read with great concern on another forum, a post from someone who has caught sepsis through the installation of a port for her chemotherapy treatment. I was shocked. I then read the longer post by someone who had created a thread dedicated to the subject of ports and sepsis and all the other dreadful things it had caused her to suffer. Please try to read it and tell me what you think. It is in the forum Chemotherapy – Before, During, and After – Topic Sepsis from Chemo port-will my chemo be postponed?

I felt so upset about what I read. I had all my chemotherapy done through a cannula and all went well. My oncologist persuaded me after chemotherapy and when I had my surgery, mastectomy, to have a port installed, because she thought I would need more chemotherapy. I had it done reluctantly and did not need any more chemotherapy anyway. She did not tell me about monthly visits to the hospital for flushing out. The port developed a kink and I had to go into hospital to have it removed. I did not have it replaced!

To all patients viewing, decide for yourself what you will and will not do. We can talk about this further and about choices. There seem to be three – cannulas, PIC lines and ports. Be fully informed.

I shall write more later, Gill.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 2, 2020 07:21AM helenlouise wrote:

Hi there, I have a port. I have not read the tread on ports and hope that I don’t develop sepsis. Any sign of infection and I seek help ASAP. This has only happened once not long after it was placed. The area became red and I went to the hospital. They gave me antibiotics whilst they did blood cultures. All worked out fine. My port is very superficial and I have to be careful not to break the skin, so I watch what I wear and cover it if I think it might get sore from rubbing of clothing. I am glad I have the port because my veins are now very problematic. My first line of treatment I got a pic line halfway through because accessing my veins had become an issue after three rounds. As I am now on three weekly IV treatment indefinitely I could not imagine not having the port. The routine blood draws are still taken from my veins. Had one today. The techs aren’t qualified to access the port :( so three attempts two bad bruises and finally got blood from a vein in the back of my hand. Sure I don’t like having a port but it has worked well for me thus far. Fingers crossed. Hopefully I will have results of my biopsy tomorrow. All for now xx

Ps. I note the website has been very quiet of late, not just our thread.

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Dec 2, 2020 10:22AM maryna8 wrote:

Hello Sylvia and all

Greetings to all. Here it is now cold, my fingers are cold as I type. We had the Thanksgiving holiday, I did go to my niece's and ate a lot. Other than that, about half the adults in the room have highly stressful jobs so it was not an especially jolly day. The Covid is certainly taking its' toll even on people who have jobs not directly related to it. Although 2 of my nieces do have jobs directly related to Covid. As of this post, nobody in my immediate family has had the virus except my stepson. He had 2 days of fever, another day of malaise, and then felt okay from there on. He said he thought the worst symptom was the loss of taste and smell, which lasted about 2 weeks.

My neighbor lady, also youngish, had the Virus, her case involved her lungs and lasted much longer. After several weeks she still had trouble taking a deep breath.

My pup had troubles too. He seemed off for a couple of days, and then one night he began coughing incessantly. I took him to doctor early next morning and he was diagnosed with Kennel Cough and severe inflammation of the Trachea. So he's been on pills and opioid cough syrup. Yesterday was the first day he didn't cough in a week. So hopefully things are on the up and up. We were outside earlier and he was back to digging holes in the yard and being generally obnoxious, I guess that's a good sign. Wouldn't you know, there is one vaccine that he needed since he's around other dogs frequently. It is not included in the general vaccines, so I am getting it for him Monday.

One of my nieces works for the State Dept. that handles Health for our State. She will be involved with planning the Vaccine dispersement. This will apparently start very soon here for HealthCare workers first. I am hearing too about the large super-cold freezers for the Pfizer vaccine. I'm hoping by the time I can get the Vaccine I can have the Moderna shot, it only requires one injection instead of two. And it doesn't have to be super-cold.

Adagio, I'm sorry about your being subjected to waiting by the phone by your surgeon, I do hope he will call in a timely fashion.

Helen, I also had a port for my chemo, and it worked very well. It became quite comfortable after a while, but it was never comfortable with the seat belt in my car. A good friend of mine did have a port that became infected, and they gave her chemo with it, and she ended up with a raging infection. Fortunately this happened a few months before Covid took over the Hospitals. I also wanted to tell you I was invited to go to Australia and New Zealand a year from now. It sounds wonderful and it's a very good deal. My problem is I haven't found anyone to share my room, since we would be gone over Christmas, without that person I would have a pay the double occupancy. So it's probably not going to happen, this time.

I cannot tell you the pleasure I took in just going over the travel itineray and so on, it's been wonderful just thinking about travel. I am not upset if it doesn't work out, I will just go later.

Gill, we are finally having a Christmas Choir practice tonight. It might be the only one we get this year. I also really like reflexology, Michael is very lucky to have you ministering to him.

Sylvia, I am sorry about your cousin, and that you are having such trouble finding anything out about him. It does sound like a good idea if you can find one of the Patient Advocates to go through.

I have to go for now, be back later.

Love, Mary

Dx 2/2014, IDC, 2cm, Stage IIA, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 2/20/2014 Mastectomy: Right Chemotherapy 3/18/2014 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 3, 2020 06:28AM Rosiecat wrote:

Hi Helenlouise,

When I had my PICC line I was told that ports were safer as they were far less likely to become infected. PICC lines need to be flushed and the dressing changed every week, so very disruptive and the dressing must be kept completely dry so showers are a nightmare.

Good luck with the biopsy result, I have everything crossed for you.

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 3, 2020 07:13AM Rosiecat wrote:

Hi Mary,

Good to hear from you and know that everything is well - apart from this dratted Covid hanging over us all.

I'm sorry that the Thanksgiving holiday was a bit flat, inevitable really. I'm not expecting Christmas to be much better. We shall spent it at home this year as my daughter, who's in a a high infection area, feels that the four of them pose a risk to us. Her husband's family also felt it was safer to cancel. So, it will be a quiet Christmas spent watching old films for us.

During England's second lockdown the Cathedral choir sang at Solemn Mass. I'm not sure if that was allowed under the (very confusing) restrictions, but went ahead anyway. The public, socially distanced, were allowed back into services last Tuesday. We have to book our place for Christmas, Michael and I will be going to the vigil Mass on Christmas Eve at 2 pm. Masses will be running regularly throughout Christmas Eve and Christmas Day, which will be exhausting for the priests and servers.

If your puppy is back to being obnoxious he must be feeling much better, a bit like children.

Stay well and keep warm now that the cold weather is with you.

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 3, 2020 07:29AM helenlouise wrote:

hello again,

Mary let me know when your coming down under. Hopefully not too far away but these days who knows what will happen next. If at all a chance to catch up when you do get to comewe must try and make it happen.

Gill I too have had a PICC line and prefer the port. A port also requires flushing if not being accessed regularly. it’s amazing what they can do medically. I am always stunned by the scans, medicines and operations. It amazing what the body can tolerate. Thankfully.

Biopsy clear so WOOHOO!! Such a relief. Thank you for well wishes xx

Dx 1/2013, DCIS, Left, <1cm, Stage 0, Grade 3, ER+/PR+ Surgery 2/3/2013 Lumpectomy: Left Surgery 2/10/2013 Lumpectomy: Left Radiation Therapy 3/1/2013 Whole-breast: Breast Dx 2/2018, IDC, Left, 2cm, Stage IIIB, Grade 3, 1/8 nodes, ER-/PR-, HER2- Chemotherapy 2/25/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 7/23/2018 Mastectomy: Left; Prophylactic mastectomy: Right Radiation Therapy 8/27/2018 Chemotherapy 8/28/2018 Xeloda (capecitabine) Dx 4/2/2019, IDC, Left, 2cm, Stage IIIC, Grade 3, 1/8 nodes, ER-/PR-, HER2- Dx 4/16/2019, IDC, Left, 2cm, Stage IV, metastasized to other, Grade 3, 1/8 nodes, ER-/PR-, HER2- (DUAL) Dx 3/2020, IDC, Left, Stage IV, metastasized to other, ER-/PR-, HER2+ (DUAL) Chemotherapy 3/18/2020 Taxol (paclitaxel) Targeted Therapy 3/19/2020 Perjeta (pertuzumab) Targeted Therapy 3/19/2020 Herceptin (trastuzumab)
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Dec 3, 2020 08:18AM - edited Dec 3, 2020 08:37AM by sylviaexmouthuk

Hello Helenlouise,

Thank you for your latest post and for your comments on your experience with ports. I was glad to read how careful and vigilant you are with your port and I am sure that all will be fine.

I can understand how patients may prefer a port as the other two options are not without their problems. It seems to be quite common that patients have problems with PICC lines and also with veins when having cannulas. I know that with cannulas hardening of veins and problems taking blood can become a problem. I was very lucky during my six months of chemotherapy treatment. I do remember a bit of bruising on the back of my hand.

I do hope the results of your biopsy tomorrow will be good. You have been so courageous throughout all of your treatment.

I think you are right about bc.org being quiet at the moment and not just our thread. I think everyone is consumed by Covid. I regularly read the section on active topics and am surprised that the active pages barely reach three and a lot of the topics that are active are to do with ways of switching off etc.

Sending you love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 3, 2020 08:35AM sylviaexmouthuk wrote:

Hello Mary,

Thank you for your post and it was nice to see you back on the thread. We do miss you.

I have read your post carefully and have caught up with your news.

It looks as though Covid is still taking a big toll. I heard on the news this morning that things are very bad now in Los Angeles and residents have been told to stay home. I think it also said that there are 100,000 people in hospital with it in the US. All this in and out of lock-down (which is never really lock-down because of exceptions) seems to be letting it drag on. Here in England we have gone from lock-down back to the tier system but then everything is relaxed over Christmas for five days, which makes no sense. In Jersey, the Channel Islands, they are now locking down for a month. The four parts of the UK are never in harmony.

Your pup has been very poorly. Was he tested for Covid? He seems to keep you very busy.

All the talk is about vaccines now and in the UK the government is boasting that we are the first country in the world to start vaccinating with the Pfizer/BioNtech vaccine. I think we have been too hasty and we are now being told all the problems of actually delivering the vaccine throughout the country because of the very cold temperature requirement (-70C) and logistics. Watch this space!

I am still spending a lot of time dealing with my very unwell cousin, but am making progress.

Raymond and I continue our routine of taking care to obey all the instructions that are given about Covid.

Keep well, Mary and keep safe.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 3, 2020 08:56AM Rosiecat wrote:

Hello Sylvia,

A very wet miserable day here in South Norfolk. Nowhere near cold enough for snow, but there's still a possibility that it might be with us next week.

Now that the weather is much cooler I wonder if Raymond's ankle and leg is less swollen? I remember that his surgery was on February 14th. Were you given any idea about how long it would take him to fully recover? I do find that surgeons are far more interested in the surgery and the immediate outcome than the longer term side effects.

Supporting your cousin in addition to your concerns with Raymond's health must be stressful. The hospital is making it more difficult than it needs to be. Not answering the telephone or stating that they don't know how your cousin is or whether the infections have been identified is unhelpful to say the least. If the person answering the phone doesn't know, he/she should find someone who does. I had a similar problem with the Norfolk and Norwich. My daughter was given the same treatment as you when she telephoned during one of my longer sepsis stays. Telling them that she was doctor made no difference at all, except that the nurse said the registrar would call her back - he didn't. I doubt if he was ever given the message. I could scream when the public demands that hospitals bring back matrons. In Norwich the hospital is full of highly ineffective matrons, just another layer of management.

I do take a look at the chemotherapy Before, During and After comments from time to time. I feel that newly diagnosed patients who are about to have chemotherapy get a much more honest picture of the process, including permanent side effects, than they ever get from oncologists. There's always a risk of infection from PICCs and ports, but there's really no alternative when your veins fail. Mine weren't much good before chemotherapy, but are absolutely hopeless now. I dread my six monthly Zoledronic acid as finding a vein to cannulate is so difficult and very painful.

I risked watching PMQs after all. Johnson failed to answer questions as usual, but became braver at the end and managed to call Keir Starmer both Captain Hindsight and General Indecision in the same sentence and then chortled at the cleverness of his own wit. Toddler was pleased. Meanwhile, the Education Secretary has offended most of Europe and America by stating that the UK was rolling out the Covid vaccinations before anywhere else because we have the best scientists and we are the best country. Young Matty Hancock had already said the same but added the huge fib that we couldn't have been first if we'd still been in the EU. Since the Covid vaccine we're rolling out next week was the work of a scientist whose father was a Turkish immigrant and her scientist husband who runs a German biotech company, these statements are a complete embarrassment.

Unless the Tories can find some grown-ups to run the country I fear that the NHS will collapse a lot sooner than we thought. I think it's high time the Opposition started to address growing waiting lists for life-threatening conditions and present the PM with a few hard facts about what has happened with cancer patients since last March.

I hope that you'll have some good news about your cousin very soon.

That's all for now. Keep safe.

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 7, 2020 07:05AM Rosiecat wrote:

Hello Sylvia,

I'm wondering if everything is well? It's not like you to go for four days without posting. I know that your cousin is ill in hospital and you will probably be dealing with that, or with one of the many other calls on your time.

Please don't rush to answer this, the thread can wait!

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 7, 2020 02:02PM sylviaexmouthuk wrote:

Hello Gill,

I am responding to your post sent on December 3rd and I am very sorry that I have not been able to respond until now.

Raymond is doing very well but he still has a swollen foot and ankle on the leg where the vein was removed. It is not that bad and I think it is more lymphoedema than anything else. The lymph system has probably been damaged through the surgery, just like my arm was with surgery and the taxane drugs. I do measure the swelling and there is not much difference between the normal left leg and the operated on right one. His compression stockings help a lot as does keeping on the move or keeping his legs raised when sitting.

It has been a very difficult few weeks for me and Raymond with the added worry of my cousin in London, who will have been in hospital for three weeks on Wednesday. It is difficult keeping in touch as his mobile phone does not appear to be working and it is so difficult getting an answer on the hospital ward phone. I have managed to have a few meaningful conversation on the phone with different doctors. He has been very ill with blood sugar problems with his diabetes, several different bacterial infections and sepsis. He is making progress but contracted Covid in the hospital and is also being treated for that. It all does seem a bit of a muddle.

I am sure that new patients do get a lot of information and support from this forum because the patients giving that support and information have been through it and that is the only way to know what it is about. I think knowing the probable permanent side effects from chemotherapy is very important.

I do hope all will go well with your six-monthly zoledronic acid and that there will be no problems with the vein when you have to cannulate. There seem to be a lot of women having all different sorts of treatment for osteoporosis. I do hope the staff give regular bone checks to see how things are going.

I agree with you about PMQs etc. It is all a joke, but at our expense!

It looks as though there is now great excitement with the expected roll out of a Covid vaccination tomorrow. It all sounds to me that there could be a big mess up, so I shall wait to see if all goes in a straightforward organised manner. The powers that be seem to have changed the priority groups somewhat since the great excitement began. Apparently the vaccination hub here is Derriford Hospital in Plymouth, and the RD&E does not seem to be in the picture. Then again, there is talk of vaccinating anyone over eighty in various hospitals throughout the country. Watch this space.

Like you, I think the opposition should be addressing the growing waiting lists for life-threatening conditions, such as cancer and not putting up with the juvenile antics of the Prime Minister.

That is about all for now.

Take care, Gill. I do hope the thread will wake up soon, but I think everyone's attention is on Covid and Brexit (not to mention Christmas). There never should have been an opening up for this.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 7, 2020 02:11PM sylviaexmouthuk wrote:

Hello Gill,

I am responding to your last post.

It has been a very difficult and stressful week and weekend.

It is so frustrating trying to phone the hospital to get updates. They never seem to answer the phone.

It has been a very cold but sunny day and Raymond and I walked to our local Co-Op to get a few items.

Have you been listening to all the news about outbreaks of avian flu on turkey farms etc.? Apparently a lot of this comes from wild birds but I do think there is overpopulation on these farms, just like there is in our country with humans! This planet is overcrowded on all levels. We need to remember what happened in Wuhan in China – from fleas on bats to pangolins to humans, not to mention the mink farms everywhere.

Last night I was able to switch off a bit and watched Sky Arts with Il Divo in concert in Japan, and a beautiful concert with the Three Tenors.

That is all for now. I do hope we shall hear from others.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 7, 2020 03:05PM pkville wrote:

Hello Sylvia, Gill, Mary and all who are touching base from time to time-

I haven't felt very well lately, I fell kind of... I was squatting down getting something out of my pantry and when I went to get up I lost my balance. I didn't fall completely but I grabbed the opening of the pantry door to catch my self and when I did I guess I twisted around against the door jam. I have been having back pain and off and on my stomach has been bothering me. Of course my worries are at a high right now, not feeling well makes everything seem like it has come back. I don't even like saying the word, I just call it "it". I feel like a very weak person because I am afraid to have any tests run to find out why my stomach hurts and my back is hurting. I had xrays a couple years ago and the scans (ct and MRI ) that I had run when I was going through treatment they noted that I had thorasic spinal degeneration and a small hiatal hernia. I feel like I am rambling, I am just a mess worrying about if it was the fall I took or if there is something going on. My back has hurt ever since I went through treatment. My stomach has started hurting in the last month or so and has gotten worse since about two weeks ago. I went to see my primary care physician last week and she thought that my stomach was hurting because of the ibuprofen I had been taking for my back. Anyway she wanted me to take prilosec and pepcid to keep the acid down in my stomach for two weeks and to stop taking the ibuprofen for pain and just use a topical anagelsic cream on my back. She also said she didn't think that having a small hiatal hernia would really be causing me much of a problem. I guess I will keep taking the pepcid for another week and see or if it gets any better. I just wanted to vent some of my emotions to people who might understand how I feel.

I hope everyone is doing well! I did get up some christmas decorations even though I didn't feel like doing it.

Paula

Chemotherapy 9/18/2017 AC + T (Taxol) Surgery 1/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel Dx IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Radiation Therapy Breast, Lymph nodes
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Dec 8, 2020 05:32AM Rosiecat wrote:

Hello Sylvia,

Good to hear that Raymond is doing well. It seems that our lymphatic system is more easily damaged as we become older. I was in my mid fifties when the over enthusiastic use of an exercise bike caused damage to my left leg, leaving my lower leg, ankle and foot swollen for months. Eventually the swelling remained in the ankle only and is hardly noticeable during Winter but returns with the hot weather.

I'm trying to read some of Chris Woollams' latest newsletter. The article concerning flu vaccinations is interesting. Researchers at The London School of Hygiene and Tropical Medicine have analysed the records of 630,000 people in the UK, including over 100,000 survivors of different cancers and found that people who have or have had cancer are more likely to be admitted to hospital with seasonal flu and are more likely to die from flu than the general population. This still applies a decade after diagnosis. I think we all realised that we were vulnerable to any virus or infection during active treatment such as chemotherapy or immunotherapy, but might be surprised to learn that we remain vulnerable for years after treatment. To put this in perspective, only 1 in a 1000 people are ever hospitalised with flu each year. The researchers concluded that cancer patients and cancer survivors should be prioritised for annual flu jabs.

I'm not looking forward to my Zoledronic acid infusion tomorrow. I'm expecting a call from a chemotherapy nurse this morning for a Covid check, I had one yesterday before being allowed in for my blood test and will have another tomorrow. I have never been offered any checks for bone density and osteoporosis hasn't been mentioned. I'm given Zoledronic acid purely to help give me some protection from the possible spread of breast to the bones.

I do agree that opening up Christmas is a mistake. Cases are rising again already so heaven knows how it will be after Christmas. I haven't ordered a turkey for Christmas dinner, but bird flu has affected at least two huge farms in Norfolk and all turkeys are being culled, the traditional Norfolk turkey may well be off the menu. Sadly, many swans are also infected.

Lovely clear, bright and frosty day here.

Take care both of you.

Love,

Gill xxx


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 8, 2020 06:14AM Rosiecat wrote:

Hello Paula,

I think everyone reading your post will recognise your anxiety, I certainly do! The fear of cancer silently spreading to other parts of the body probably never really leaves us. Your accident sounds painful, twisting the back is never good, but you have to add spinal degeneration to the mix. It sounds as though you think this is the most likely cause of your pain, but there's always the 'what ifs' to consider. Pain at the front of my lower leg caused me to go for and mri scan just a couple of months ago. I didn't have bone mets, thank heavens, but the mri ended my anxiety..... until the next time.

I always thought that Ibuprofen was meant to be taken short term only. I know that longer term use might result in stomach problems. I do think you need some peace of mind and wonder if you may benefit from biting the bullet and perhaps having some tests. I dread any kind of testing too, I think we all do after what we've already been through. Stress and anxiety won't be doing your stomach any good at all.

My thoughts are with you, you're in pain, you don't want to have tests but are extremely worried and anxious. It's a horrible situation, you need to talk to your doctor again and discuss a way forward.

with love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 8, 2020 12:47PM sylviaexmouthuk wrote:

Hello Paula,

I was so sorry to read that you have not been feeling very well lately.

When you were squatting down, then getting up, lost your balance, you may have had a moment of low blood pressure. I have read this is quite common when you get up from having been sitting down. Perhaps you should have your blood pressure checked.

As for the back pain, my very useful big BMA medical book says that if it does not go away within 48 hours, it should be checked by a doctor. I would think that if your back pain had occurred without any reason, then you should get it checked.

It sounds as though you need to get a good check up with your stomach as well. Are you taking any probiotics to keep your gut healthy? If you want to read more about all that, you might want to sign up to receive Chris Woollams regular email:- https://www.canceractive.com/article/e-newsletter-sign-up

Just because you are not feeling well does not mean that your cancer has come back. We are all afraid of tests but you have to decide whether you prefer to live with the constant stress and anxiety of not knowing what is going on or decide to face up to getting checked out and go from there.

You said that you have had x-rays and scans (CT & MRI) and that you had been told that you had thoracic spinal degeneration and a small hiatus hernia. These two things may be the source of your pain and problems. Did you get any kind of treatment for these things?

I note that you have seen your primary physician and that she said she thought that the ibuprofen was the reason your stomach was hurting. I am not a doctor but I would think that taking too much ibuprofen would have a bad effect on your stomach. Ibuprofen is not something that gets a good write-up. You might want to look at the side effects on the leaflet that goes with them. Why not try some different analgesic cream on your bad back? If it were me I would probably try arnica gel (not the arnica cream for bruises). You can also buy a product that in this country is called BioFreeze.

Remember, as we all remember in this group, that it is your body you are dealing with and that you make the decisions. You may decide that you want your primary care doctor to refer you to a consultant.

It cannot do any harm to get your hiatus hernia checked out. It may have deteriorated in two years. A friend of mine is in a lot of pain with a hiatus hernia for which he has been awaiting treatment for a year.

We can all understand how you are feeling. Part of our post breast cancer treatment is having to live with knowing that it can come back. We somehow do this but continue life in a normal way and make sure that we eat healthily, exercise our bodies, physically and mentally, try to avoid stress, live each day and hope for the best.

Keep in touch, Paula, and let us know how you get on.

Thinking of you.

Love.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 8, 2020 12:53PM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

I have not time to do your excellent post justice, so I shall answer tomorrow. It seems this is becoming a routine for me these past months, as I seem to be on the go from the time I get up until after supper/dinner in the early evening. I then feel like a bit of relaxation.

I have just printed off the Chris Woollams latest newsletter but I have not read it yet. I am sure that I shall be interested in the article about flu vaccinations.

How do you feel about having the coronavirus vaccination?

Thinking of you.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 8, 2020 10:28PM NancyJGH wrote:

Hi everyone, I was told my initial diagnosis yesterday (12/7/20) - Triple Negative, but don't have my full diagnosis yet. I was told about this website and forum by the woman who was my radiologist a few days earlier.

To read that someone on this forum has been alive for 15 years + is so very comforting. I now look forward to a long life!!

Thank you Community! You're wonderful and I'm eager to read and learn more.

Nancy

(Philadelphia, soon to be at Abramson Cancer Center)



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Dec 9, 2020 03:39AM Rosiecat wrote:

Hi Nancy,

Welcome to the thread - though I'm sorry that you have breast cancer. I've always found this forum to be the most sensible and informative and I did my research before joining, so I looked at a few.

You're probably still in a state of shock and bewilderment after your diagnosis, I know I was. However, I want to reassure you that most people do survive triple negative breast cancer. Sylvia, who began the thread, is fifteen years out and many others have reached five years, some just drop in occasionally. Naturally, most people leave the thread at some point as they're just getting on with their lives and just don't have enough time to contribute. We're very quiet at the moment as are other threads - the Covid effect!

Nancy, you will get through this and will probably feel much more positive once you have a treatment plan and can just get on with it. Chemotherapy is particularly effective with triple negative cancer and TN has the great advantage of not requiring you to take unpleasant drugs for years after your treatment is completed.

Let us know when you have your full diagnosis and ask your surgeon for a copy.

No doubt Sylvia will respond to you soon. In the meantime, keep looking forward.

Love,

Gill xxx

Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/17/2018 Mastectomy: Left Chemotherapy 10/21/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Dec 9, 2020 09:26AM sylviaexmouthuk wrote:

Hello Nancy,

I wanted to say welcome to our group and that we can give you all our support. I saw that you were diagnosed just this week, so give yourself plenty of time to absorb this. Tell yourself that you will get through this and do it one day at a time.

I have noted that you have only been told the receptor status of your tumour, and that it is triple negative, which means it is negative for oestrogen, negative for progesterone and negative for HER2. Be positive about that receptor status diagnosis.

Decide that throughout you will be in charge of your body and make informed decisions.

You should ask what kind of breast cancer you have, since there are many different ones. The most common one is Invasive Ductal Carcinoma (IDC) but there are rarer ones such as Metaplastic breast cancer, Lobular breast cancer, and Inflammatory breast cancer.

You will be told what stage of the cancer you are at and the grade that are at. The stage depends on the size of the cancer. Most, but not all, TNBC cancers are grade 3. Some are grade 2.

you will be told what your cancer treatment will be. It is usually a mixture of surgery (lumpectomy or mastectomy), chemotherapy and radiotherapy.

I had an ECG, a CT scan and a bone density scan, both before and after treatment but it will be your oncologist and breast cancer surgeon who will talk to you about all this.

It is a good idea to have someone with you at all your appointments to take notes and it is a good idea, also, to have written questions for which you want answers before going for appointments.

I think that is enough to be going on with for the moment and remember we are here for you.

Take care.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast
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Dec 9, 2020 09:52AM sylviaexmouthuk wrote:

Hello Gill,

I was very interested in what you had to say about flu vaccinations. I do not really know what to say about these statistics from The London School of Hygiene and Tropical Medicine. I think statements like this would be frightening and not very encouraging to cancer patients. I think a lot of what happens to cancer patients depends on their general state of health before treatment and how well they look after themselves afterwards, especially when it comes to their diets.

I can only speak from my own experience. I was not having any flu jabs before my cancer diagnosis and only had one on diagnosis on 2005 because my oncologist said I needed one because of what I was facing. I also had to have the once in a lifetime pneumonia jab. She also recommended that Raymond have them. From 2005 I did not have another flu jab until 2017 and I do not really know why I decided to have one. A couple of days later I had the lymphoedema flare up in my surgery arm. I did not have one afterwards until this year when Raymond and I decided to have one because of the coronavirus. Neither of us has had any serious flu, just colds really.

I do hope all will go well with your zoledronic infusion. There seem to be so many people having some kind of bisphosphonate for osteoporosis or as a preventive in those with metastatic breast cancer to the bone.

I have always refused all bisphosphonates.

I find lately that I cannot stand the word Christmas. It is supposed to be a religious festival and not an all you can eat and drink occasion!

I am following all the news about avian flu and the outbreaks on the turkey farms. We have them in Devon. Again, I think a lot of it is due to the overcrowding of turkey and chickens on these farms. I think that humans and animals are getting far too close.

It is a dry, cold day here and very, very quiet, but I think there will be masses of people on the seafront and raiding the meagre shops that we have left in Exmouth.

That is about all for today. I do hope Mary, Paula, Kath, HelenLouise, Jags 56 and adagio will pop in to welcome NancyJGH. The name suddenly reminded me that we have not heard in a long time from Canadian Nancy in Manitoba.

Love and best wishes.

Sylvia xxxx

Let your food be your medicine and your medicine be your food - Hippocrates B.C. 390 Preadjuvant chemo 3 months epirubicin, cyclophosphamide, 3 months docetaxel. Mastectomy RB Sentinel node pos Radiotherapy 3 weeks + boosters Dx 6/20/2005, IDC, 6cm+, Grade 3, 1/7 nodes, ER-/PR-, HER2- Chemotherapy 10/31/2005 Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxotere (docetaxel) Surgery 5/16/2006 Lymph node removal: Right; Mastectomy: Right Radiation Therapy 6/14/2006 Breast

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