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 Jul 21, 2022 06:17AM by sylviaexmouthuk

Posted on: Sep 12, 2010 08:43AM - edited Jul 21, 2022 06:17AM 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 17 years and 01 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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Jul 31, 2022 09:29AM sylviaexmouthuk wrote:

Hello Sue,

I have just been reading the posts that you and Gill have written and was glad to see you communicating. It is true that we all experience chemotherapy in different ways and I realise that my journey was fairly easy compared to a lot of others. Feeling more tired than usual was what I remember most of all. Apart from that, I continued very much as usual. My husband, Raymond, was a rock for me and I was so glad to have him by my side while I was going through the infusions.

I was very careful about what I was doing and took the advice given by my all-women medical team. I did not eat any sea-food or raw salad food for fear of infection. I kept away from crowded places and was careful about visitors. I also avoided public transport and tried to keep physically active. I did gardening but was very careful not to get any cuts or bites.

I do not know what it would have been like teaching 11 to 18s whilst undergoing chemotherapy. I would probably have had to take sick leave!

I was glad to read that you have had such a lot of support. That is essential.

I shall be thinking of you on Tuesday when you have your surgery. Tell yourself it will soon be over and you are going to be fine

you said that you still have eight doses of Keytruda. Will this carry on while you are recovering from surgery or will you have some kind of break?

I was glad to know that you are eating, walking and riding your exercise bike. Do not worry about brain fog. I am sure it will pass.

Take care of yourself and be strong and optimistic.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Aug 1, 2022 06:43AM rosiecat wrote:

Hello Sylvia,

I'm becoming more concerned about monkey pox. Infections aren't usually too serious and people recover, but people are now dying and it's spreading with frightening speed. We have no Government, no plans, no guidance has come from the Health Secretary and hospitals will be left to plan and cope without any extra funding again. Cancer is increasing, covid is by no means over, monkey pox, rapid climate change. Maybe we should have looked after our planet, we've been given enough warning. The human race was never going to survive forever, successful though it was, all things end. Pessimistic? I hope so. We're living through interesting times, no denying that.

Sue's recovering well from chemotherapy and will be pleased to have her surgery out of the way tomorrow. I do wonder how helenlouise is coping, it's nearly 3 months since she last posted. I was also thinking about Peter and Liz, Flora's mother and viewfinder's sister. Adagio has also had a lot to cope with since her heart surgery. Adagio and Raymond both know how difficult serious heart surgery is to recover from and the additional health issues it can create. Psychological damage must also be a factor and I doubt if many hospitals have the wherewithal to deal with it. I remember the excellent oncology registrar telling me that ideally I should have been referred to an onco-psychologist after the trauma of sepsis and c-difficile. Some of the London hospitals offer this, but mental health is very low on the agenda in most areas. Surely mental wellbeing is part and parcel of our physical recovery?

I don't usually watch football, but did watch the England women's final yesterday and I'm very glad that I did. The stadium was packed, the fans extremely good natured, no threatening the referee and no play acting from 'injured' players on the pitch. Of course, there was no Prime Minister to cheer them on as he'd been partying through the night at a Tory donors Cotswold pile. I hope he realises that public sector workers are legally bound to register gifts? I doubt if the donor will want anything in return!

The weather is sunny, but not too hot here today. Yesterday brought several prolonged showers, but not enough to make much difference to the garden. Harvest began early this year in the fields near us, farmers working through the night.

Wishing you and Raymond a safe and peaceful week.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Aug 1, 2022 07:15AM rosiecat wrote:

Hi Sue,

I'll be thinking of you tomorrow. Remember that this surgery is very quick, modern anaesthetics are very safe and recovery is very quick and nausea free - unlike the anaesthetics of our childhood.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Aug 1, 2022 10:18AM - edited Aug 1, 2022 10:19AM by sylviaexmouthuk

Hello Gill,

I think we should all be concerned about monkeypox. We are such a mixed up world that all viruses etc. will spread rapidly and we may not be able to cope as well with these as the countries from which they have spread. There is another nasty virus in Sudan, so with everyone darting around the planet, how long before it is in the UK?

Like you, I am glad that Sue is recovering well. Like you, I also wonder about how past posters are getting on. I do hope HelenLouise is coping as she has been through such a lot. Peter and Liz always had interesting posts and it would be nice to hear from Flora's mother and viewfinder's sister, not to mention adagio.

I do agree with all that you said about the importance of mental health and it is very much neglected here in the UK.

It is unbelievable that the Prime Minister cannot see how immoral it is to be having extravagant parties in such hard times. What a shambles our parliament is. I doubt whether I shall ever vote again. Our two main parties need clearing out and we need two new ones.

I have bumped up the two forums and certain threads within them to refresh about parathyroid disease and breast cancer and high calcium levels. It was on these threads that I first posted when I was looking for information about hyperparathyroidism and breast cancer. Have a look at them. They should be on the first page oof Active Topics. The two forums are as follows.

Not Diagnosed with Recurrence or Metastases but Concerned (Forum) Thread – High Blood Calcium Levels.

IDC invasive ductal carcinoma (Forum) Thread – Parathyroid Disease and Breast Cancer.

There are just a few hundred posts in each thread so it is easy to read them completely.

The weather is cloudy here but no rain.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Aug 1, 2022 01:30PM rosiecat wrote:

Hello Sylvia,

When collecting my last prescription a couple of weeks ago, there was a note attached asking me to book my annual blood test with a care assistant. You can probably guess what I'm going to say. The online forms for requesting an appointment with a nurse or healthcare assistant are no longer available. GP appointments are closed, phone calls are for patients who need to see a GP urgently and if the problem looks like an emergency, call an ambulance (which will take hours to arrive and leave you waiting in a queue outside A&E as there are no beds available). There's no air conditioning in ambulances here. Just asked a friend if she would recommend her surgery which is in a small town only 4 miles outside the village. Definitely not, problems exactly the same. I have a dental checkup tomorrow afternoon and will call at the GP surgery in person to see what's going on. This is assuming that I can locate a human being. I really don't want to blame people working at the surgery as I know that many GPs and nurses have simply had enough and left the health service.

Some are reporting that Johnson didn't attend the women's football final yesterday in case he was booed. You'd think he'd be used to that by now. The continued extravagant behaviour of this Prime Minister and his Eton cohorts will lead to riots if he's not careful. Ordinary working people and those who are unable to work through no fault of their own have a right to adequate housing, healthcare, food and heating. This country is rapidly heading towards pre war levels of poverty. It's a wonder that Rees- Mogg hasn't reintroduced workhouses and pre school age chimney sweeps. Privatising essential services is stealing from the public, it needs to stop and sometimes taking to the streets is the only solution.

I often read through other threads just to see if there's anything new or something that could be of wider benefit. The whole site is much quieter than when I first joined and many regular posters have disappeared.

I've just booked a cruise for 2024. We've never been on one before but we both needed something to look forward to. Sincerely hope this Government will be out by then.

Keep safe and well.

Love,

Gill xxx


Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Aug 3, 2022 06:13AM 22lumos wrote:

Hi Sylvia and Gill,

Surgery went well yesterday. I had a pre-procedure where they inserted a wire to help the surgeon locate the mass during surgery. The also inserted a blue dye to evaluate the lymph nodes. Then I went back to a room to wait for surgery. I was only there for a few minutes until the anesthesiologist came in to explain what she was going to do. She gave me a "relaxation" drug and I remember being wheeled into the hallway, but nothing else until I woke up in recovery.

The surgeon said she was very happy with how things went and would give me details in the follow-up appointment next week. That was fine because I couldn't remember much that people were telling me after surgery. I came home after that and took it easy the rest of the day.

The surgeon called to check up on my last night but I was already asleep. 9:30 has been generally when I've just gone to sleep. I woke up around 4 a.m. and needed ice and some Tylenol, but other than that, I'm doing okay.

I'll keep this one short. But I do wish there was a way to search posts on this site using keywords. That might be helpful for applicable posts to read. Oh well.

Stay safe and cool!

Love, Sue

Round 1: Keytruda, Taxol, Carboplatin Round 2: (every 3 weeks) Keytruda, Cytoxan, Doxorubicin Chemotherapy 2/2/2022 Other Chemotherapy 2/2/2022 Other Dx IDC, Right, 3cm, Grade 3, ER-/PR-, HER2- Surgery
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Aug 3, 2022 08:11AM rosiecat wrote:

Hi Sue,

Well that's over! You were certainly treated well and everything was done in a timely way, without fuss. I expect that you'll be given some exercises to do in a few days. For now you should avoid lifting , carrying, stretching - easier than it sounds. I was up at 7 am the day after my mastectomy and immediately stood up and stretched both arms over my head, opening the wound. No pain, so just forgot that I'd had surgery.

When you click on the hamburger to go to 'community', just continue to scroll up and you'll see 'search', click onto it and there's an option to search keywords.

Rest today, remember that you've had a general anaesthetic and your body needs time to adjust and heal.

Love,

Gill xxx

Surgery 9/18/2018 Mastectomy; Mastectomy (Left) Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
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Aug 4, 2022 07:07AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post.

It is very frustrating dealing with any aspect of our health service these insane days. Having pushed and pushed people to go online, it now looks as though they want to keep us away. Raymond received a message on his email informing him that he now cannot order repeat prescriptions online and that a batch of medication, lasting about six months, will be sent to the pharmacy who deals with them and that he has to phone the pharmacist to do this. He phoned the pharmacist on Monday and was told that the pharmacist would now have to contact the GP surgery to get approved and then the surgery would send it back to the pharmacist!! The pharmacist told him it would take two days to do this. This morning there was a buzz to our apartment and lo and behold it was the pharmacy delivery service with his repeat prescription. In addition, Raymond decided to request some other medication to deal with his heavy leg, went online to the surgery and ordered it without any problem. That medication, ordered yesterday, was in the medication pack delivered today!!!

We also had fun and games trying to book our flu jabs online. Raymond could not get anywhere. I decided to phone and eventually was able to book them but it took a long time and they are not until September. I seem not to exist for the health service in all of this as I could not be found on records. This seems to be because I am not on any medication. It seems that if you want to be known you have to put yourself on some medication. By your pills are ye known!

As you say, you cannot get a face to face appointment unless it is urgent and if it is urgent you have to phone 111 (or even 999)!

I have a brother here in Exmouth who has been harassed several times with phone calls from the surgery, no proper message, just call the surgery. He was then told to go in and it was all about trying to force him to take pills he does not want to take. This is hardly good use of face to face appointments!

I share your frustration about lack of humans on the phone. It drives you up the wall.

I do wish the leadership nonsense could come to an end. It is useless. There is a group of Boris Johnson's supporters who are trying to get his name on the leadership ballot. It is beyond belief and Boris is blaming the red wall MPs for his downfall. He has said that they have spent too much time on Twitter. At the weekend there was the big wedding celebration on some big country estate. Talk about living it up when others cannot feed themselves. There was also an article about Boris Johnson and his father, with photographs, at some huge French castle where they were getting to know their French cousins! He does not even say "Let them eat cake" like Marie Antoinette! He is too busy eating cake himself!

The less I say about Rees-Mogg the better. He is an anachronism.

Like you, I ofent read other threads and often go to the Active Topics. I do not recognise many names these days, so I think that most people do not stay on for long. It is a pity because it would be good to know what happens to them. I did read one post from someone who had had breast cancer three times and had suffered from radiation induced morphea. I had not heard of this. Apparently it is an autoimmune disorder of the skin. The person had also had chemo-induced heart failure. I remember I had ECGs before and after treatment and was told all was OK. However, you do not really know what will happen long-term to your heart ot anything else.

I do hope we shall get some more posts about all the aspects of breast cancer. I would be quite interested to know whether breast cancers such as lobular, inflammatory, and, indeed, your own metaplastic breast cancer, are more likely to be hormonal tumour status or negative.

Reading the different threads I realise that having hormonal tumour status is no picnic because of the years you have to spend on anti-hormonal medication with all the nasty side effects.

It is good to know that Sue has got through her surgery.

I was interested to know that you have booked a cruise for 2024. Where are you going? Raymond and I have never been on one.

That is about all for now. I am beginning to despair of ever getting any rain. I am sure there will be measures over water use everywhere.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Aug 4, 2022 11:34AM sylviaexmouthuk wrote:

Hello Sue,

I was glad to read that your surgery had gone well. It is good news that your surgeon said that everything had gone well. It will be very interesting to get the details.

Take care and do not overdo things.

There is a search box where you can fill in key words to lead you to whatever information you are looking for. If you go to the index you will find a list of different words that lead you to different subjects. The list starts with:

All topics

Active topics

My favorites

Private messages

Dashboard

Find members

Search.

This is pretty easy to do.

I often look at Active topics. There are usually about ten short pages. The shortness of Active topics shows me that the whole forum is a lot less active than it used to be.

I hope this helps.

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; Lymph node removal (Right); Mastectomy; Mastectomy (Right) Radiation Therapy 6/14/2006 Breast
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Aug 5, 2022 07:14AM moderators wrote:

Hi Sue, and thank you, Silvia for your help!

Just chiming in to share our FAQ section, that has detailed instructions on how to use the search function and explains everything on how to make the best use of our forums.

Hope this helps!

The Mods



To send a PM to the Mods: community.breastcancer.org/my/...

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