Calling all triple negative breast cancer patients in the UK
Comments
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Hello to the person who sent me a private message. I am answering here so that everyone can benefit.
You did not give any details, except that you are a 9 year survivor. Congratulations on that.
I am now a 14 year survivor as of June 20th 2019.
You asked about bitter apricot kernels and said that you were taking them. I have been taking them regularly for 14 years. Whether they have helped or not I do not know, but as far as I know they have not done me any harm.
They are very controversial.
I have also been drinking lots of green tea for 14 years and this is said to help cancer patients.
You will probably find more information on some of the threads in the Alternative Medicine forum, in the thread Raw Apricot Kernels. You need to read pages 1 and 2 and then you will have a lot of information about them.
I hope this helps.
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Hello everyone,
We have had many discussions on the thread over the years about stress, its effect on the body and a possible connection with the development of cancer. I think we have to analyse in a way our own bodies and feel how stressed affects us. I do know that stress causes us to produce lots of the stress hormone Cortisol which is not good for us.
I have had quite a lot of stress in my life and I do not think it did me any good. I can feel my body reacting negatively when under stress.
As we know there are many risk factors in the development of breast cancer.
I do hope you are all having a good weekend.
Best wishes
Sylvia xxxx
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Hello Sylvia,
You did a great deal of posting at the end of last week - hope you had a restful weekend after all that.
I was interested to read about Beta blockers offering extra time for cancer patients. I took Beta blockers many years ago for cluster headaches. They worked well for me but the side effect, extreme exhaustion was difficult to live with, I could hardly climb the stairs or keep my eyes open. Fortunately I only needed them for a few weeks. The side effects, (there are many), are probably worth putting up with for a serious amount or extra time.
There's no doubt that poverty is becoming worse in the UK. Today's politicians have no idea of the sheer everyday grind and indignity of being poor, both for adults and for children. It's outrageous that so many people work long hours and are so poorly paid that they cannot afford a reasonable quality of life. Those who cannot work for health reasons are routinely deprived of the benefits to which they are entitled. Meanwhile the rich get richer and Tory politicians continue to feather their own nests. I fear for the poor, the sick and the disenfranchised. Why on earth do people keep voting for more of the same?
I was measured for my prosthesis last Wednesday. It was all very quick and dignified. Fortunately I have a fairly small bust, as the prosthesis is quite heavy, but does prevent the problem of my bra riding up on the mastectomy side. I'll be offered a new one every three years. At home I don't bother with anything as it's not really noticeable. I do think that for women with larger breasts a prosthesis might be too heavy.
I expect most people here know that Marks & Spencer have a range of well made, supportive post surgery bras at very reasonable prices. There's also a discount given at checkout and this goes to a breast cancer charity. My prosthesis fitter asked me if I was wearing an M&S bra as soon as I arrived. It's obviously the most popular and seemed to be approved of, though she did give me a small catalogue of alternatives.
Cool wet weather over the weekend but today is sunny and not too warm.
Enjoy your day.
Love,
Gill X
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hi guys! I’m wondering who here in this thread is 5+ year survivor? Thanks in advance. Looking for en
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Hello ucfknights,
Sylvia, Mary and adagio spring to mind, but there are certainly others. I'm sure someone else will be able to come up with more examples of 5+ years survivors.
Gill X
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Hi everyone,
I am Hassina , I am new to this forum, I am older TNBC cancer patient
I was diagnosed with triple negative breast cancer in August 2018.stage three 26cm mobile tumer.I was devastated so was my husband , my son and daughter .
At the time I was 67 . I was adamant to have mastectomy immediately . I was not prepared to have chemo at all , as I know chemo can make you very ill
and I did not want to keep the tumer in my body any longer then I can help it..
So I told my breast surgeon that I don't want any chemo neoadjuvent or adjuvant .
My surgeon ( who is an excellent doctor) explained very patiently the advantages of having neoadjuvent chemo for TNBC. He spent 45 mins stating that neoadjuvent chemo would shrink the tumer to a small size
For a successful lumpectomy.
On his very persuasive advice I started chemo on 9th November,21 neoadjuvent chemo,12 weekly paxataxol and 4 weekly carboplatin.
Followed by three, 3 weekly FEC . The oncologist and surgeon were happy with the size the tumer had shrunk to .
I had all the side effects that goes with chemo, worst one being with 3 wheely FEC,
Throughout 21weeks of chemo I escaped having infection or be netrophinic until I had completed all the chemotherapy.
After the very last chemo I had developed infection for which I spent two separate week in two different hospital. I also became netrophinic.
Two weeks infection delayed the surgery.
On 23rd May I had surgery to remove the tumer which had shrunk substantially.
Although I was very anxious and worried, the surgery was a complete success.
After almost two months from the op I have began radiotherapy on 18th July.
I am due to have 15 radiotherapy. So far so good except for holding the breath to the green area.
I am due for an anniversary mammogram in August,
I am not sure how I feel, I am a born worrier, I worried before chemo, worried for the op then
For radiotherapy.
But I know I am also a fighter, I keep on fighting.
I can see the light at the end of the tunnel.
Thank for listening,
I am not very good with online forum.
My first try.
Hope to get a few response.
Lots of love
Hassina
I
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Hi Hassina,
I've only been on the forum since September 2018 so their are others on the thread with much more experience of TNBC than me. I was diagnosed at the age of 63 and had a mastectomy followed by 3 cycles of FEC and after that, 3 cycles of Paxlitaxel. My oncologist held back on radiotherapy.
I think everyone is worried about how they're going to cope with chemotherapy. Some people just sail through it with very few side effects while others hit a whole range of complications. Congratulations on getting through everything despite your concerns. Now you're onto the last part of your treatment and can finally see light at the end of the tunnel. Hope your radiotherapy goes smoothly and that you'll soon be out and free from all the hospital appointments that dominate our lives after diagnosis.
I don't think many of us are ever completely free of worry once we've been diagnosed with breast cancer, but I no longer think about it as much as I did and I certainly won't let it ruin the rest of my life. We both have a lot of living to do after all.
Your online forum skills are just fine.
Take good care of yourself.
Love,
Gill X
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Hello Gill,
Thank you for your post. Raymond and I did manage to have a restful weekend after a very busy week. However, today has been very hectic but at least we have had some rain and it is a lot cooler now.
I have done a lot of research about beta-blockers because so many people around me seem to be on them that I get the feeling they are becoming prescribed as frequently as anti-hypertensive drugs and statins. I know that there are non-selective beta-blockers and cardio-selective beta-blockers and that they have nasty side effects. From my reading I assume that you probably had the non-selective ones for your cluster headaches. All that exhaustion must have been very stressful and you were lucky not to have to take them long term. Do you have to go back on them if you get another cluster headache?
I do not know what to say about the non-specific beta-blocker Propranolol for cancer treatment. I just know that the drug name is very familiar to me as it is one people have mentioned to me.
I was interested to know about your prosthesis fitting. There are light weight prosthesis and I have had one like that since I finished treatment in 2006. I have been buying an ordinary bra, mainly cotton, since I had the prosthesis and I buy cotton flaps that I sew in. I phone up and order them from Amoena. I did not like the M&S mastectomy bras because they were heavy and not mostly cotton. I also have small breasts so I would be interested to know the details of the one you bought recently. I have kept to the bra that I was wearing before the mastectomy.
I think it is shameful that those in power seem to ignore all the poverty and inequality in this country. We are being ruled by a bunch of over-privileged Tory toffs who live like aristocrats. I have been doing a lot of reading about Boris Johnson and was so angry to read that his favourite wine costs £180 a bottle! He should be ashamed of himself. What concept does he have of ordinary people and their struggles to survive the stresses of everyday life? I recently bought the latest edition of the New European. It is a weekly newspaper and is well written.
We finally had some rain this afternoon but not nearly enough, it now feels like it is blowing up for a storm.
That is all for now and many thanks for the great effort you put into the thread. I hope all is well with you and your husband Michael.
Love.
Sylvia xxxx
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Hi Gill,
Your reply is very comforting ,supporting and reassuring. Thank you.
I am very fortunate to have had an excellent surgeon and brilliant oncologist throughout
my chemo and surgery.
Today I had 8th radiotherapy feeling a little tired. I guess it's to be expected.
I would like to be in touch as we are o/60 TNBC. If it's ok with you.
Take care
Love
Hassina
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Hello Hassina,
Welcome to our thread. We are a friendly informed group of women and only too willing to help and support everyone going through their cancer journey.
Thank you for giving us all the details of what you have been going through.
I was not surprised to read that your consultant was keen for you to have neoadjuvant chemotherapy to shrink the tumour. This is quite common with large tumours and is done to make surgery easier. I had a large tumour 6 cms + and had chemotherapy before surgery to shrink it a bit before having a mastectomy. I was also older when diagnosed as I was approaching my 63rd birthday.
Your chemotherapy treatment of about six months is quite standard. I had six months as well but did not have all of the drugs that you had. I also had the chemotherapy every three weeks and had epirubicin and cyclophosphamide for three months (EC) and then a taxane like you but I had docetaxel (Taxotere) and had that for three months.
I was lucky enough to get through it all very smoothly and was not ill during the treatment, but for long term side effects I have lymphoedema in the right arm and neuropathy in the feet. They do not bother me too much.
I was sorry to read that you had neutropenia and that you had to be in hospital.
I was glad to read that your surgery for a lumpectomy was successful.
I do hope all will go well during your 15 sessions of radiotherapy and I also hope that you have good news from your mammogram in August.
Going through cancer treatment is a stressful journey and we all get worried and anxious. You have got this far and the worst is behind you. Try not to worry and tell yourself that you are going to be fine and get back to a normal life.
I do hope you will stay with us and that you will tell us a little bit about yourself. It is good to be a fighter and it is good that you can see the light at the end of the tunnel.
You have done very well with your first post here.
Love.
Sylvia xxxx
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thank you Sylvia for your kind reply. Its very reassuring.
Very soon I will leave for radiotherapy, I am lucky,the hospital is only half hour by underground.
I hope to be in touch, if I can find the thread.
Best wishes
Love
Hassina xx
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Hello Hassina
I just wanted to say that I wish you good luck for your radiotherapy.
Please stay with us and let us know how you get on.
What is the problem with finding our thread?
It is good for us to know if patients are having trouble locating forums or threads, so that we can inform the modertors because it should be easy. My thread is in the forum Triple Negative Breast Cancer and the thread is Calling all triple negative breast cancer patients in the UK.
Love.
Sylvia xxxx
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Hello everyone,
I thought you might enjoy these photographs that I took in brother's garden this week. I really like the deep blue hydrangeas that he has grown.
The other one is a very tall lily in a pot but the photograph for some reason does not show the height.
This is a beautiful rose in full bloom.
This bird caught my attention as it looks really life-like.
A bird standing guard on the roof of our building. I am not sure what this one is but recently we have had peregrine falcons flying around.
Our faithful seagull that comes in every morning.
Best wishes
Sylvia xxxx
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Hello Mary,
I have missed you on the thread these past few days and I wanted to say that I do hope all is going well with you and that you are just taking a break.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia,
I haven't had cluster headaches for some years, though I was warned that they could return. I believe that more effective medication is now available. Cluster headaches are very persistent and completely disabling so I hope no one here has them.
You asked about my Marks & Spencer bra. I wear, (excuse the flowery language), the post surgery 'sumptuously soft padded full cup bra'. It comes in A - E cup sizes. Only the pockets are cotton, other materials are polyester, polyamide and elastane. They provide good support, the straps stay in place and they give a smooth line. They also give me some shape. I was originally given a soft lightweight prosthesis, but found that my bra rode up on the mastectomy side.
Your brother's rose is beautifully marked around the petal edges. He probably has the bluest hydrangea I've ever seen. I'm glad your seagull seems like the friendly sort. The gulls along much of the Norfolk and Suffolk coast are brazen thieves. All sandwiches , ice creams, fish and chip lunches and the people eating them are considered fair game.
Weather here is cool with low cloud and a high chance of rain. Michael had put today aside for weeding around the village hall, but I doubt he'll get very far.
Hope you and Raymond find time to relax at some point today.
Love,
Gill X
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Hello everyone,
A few pictures of my garden, the dry (drained) side. The marsh has it's own charm, but is too wild to be photogenic so no pictures of that. The blocked lane is a Summer hazard as farmers are all rushed off their feet. No idea which farmer lost all the hay, he didn't return to pick it up.
Gill X
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HI Sylvia,
I have returned. You are right, I have been dealing with a problem, with my shoulder of course. Is this ever going to end??
About 3 weeks ago I told you that I had done something to my shoulder while doing some gentle therapy at home. Then I did the week-long dose of steroid pills, when the pills were gone my stiffness and pain returned. The following week I had my scheduled visit with surgeon, she listened to me and moved my arm about and said something like, "Well, you know that 20% of these surgeries don't succeed." I told her that if there was something to do about this, and Medicare didn't want to pay for it, I would pay myself because I have only one right arm! She then ordered an MRI. and said we would check out all options from there. I had MRI on Friday, and on Saturday morning the results showed up in my inbox, the Radiology Unit at the Hospital had sent it to me. So I read it and truthfully, it all sounded bad. I spent a miserable weekend worrying about it, so diverted myself with sis-in-law's birthday and time with family. I called doc's office on Tuesday and got in to see her that day.
I was waiting for her in room, and she stuck her head in and called me out to where she looks at scan reports. She wanted to show me my MRI pics. Quite interesting. When she fastened down my torn rotator tendon to the bone of the shoulder, she used an "anchor", which looks like a screw but is made of an absorbable material that dissolves into the bone, eventually. It turns out a piece of this "anchor" broke off and is floating in the recess under my shoulder bone (scapularis). It has caused a very large mass of effusion (fluid) to form in area, this is what is causing the pain and stiffness in my arm. The doctor said she has never seen this happen, and has never heard of this happening. She could not find any info on how long it would take for this "anchor" to absorb into soft tissue. So she put a large steroid injection into the shoulder to get rid of the swelling and soreness, and she will see me in a month and see how things are. She said it is possible she will have to go into the shoulder again and remove the offending piece of material.
The good news in all this is that my rotator tendon seems to be okay. Leave it to me to have something weird happen, I guess a normal recovery is too much to hope for. This all makes me wonder if that is what happened 3 weeks ago when I had the tearing sounds in my shoulder, the anchor breaking off??
I hope you are well, and Raymond too. I am tired, this is my 3rd day that is following a night of short sleep because of steroid's effect, I wanted to let you know where I've been. I see we have some new posters, I wonder where they live?
I will talk to you soon, love
Mary
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Hello Gill,
Thank you for the photographs. Your garden looks really lovely, very colourful and I am sure it must give you a lot of pleasure.
I do hope the farmer came back for his hay!
Another weekend is upon us and we are now in August so summer is fast disappearing.
I heard this week on the news that we have 14,000,000 people living in poverty in this country and 4,000,000 living in dire poverty. I do not suppose they will get much help from Boris Johnson!
I do hope you have a nice weekend.
Love.
Sylvia xxxx
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Hello Mary,
I was so glad to hear from you but very sorry to learn that you are having problems with your shoulder. It is not very encouraging when your consultant tells you that 20% of these surgeries do not succeed. Did she tell you this before the surgery?
I was sorry to read that the news from the Radiology Unit all sounded bad and that it made you feel so miserable. It was a good idea to get it off your mind by involving yourself with your sister-in-law's birthday party.
I was sorry to read all that about the anchor and how a bit has broken off. I do hope the steroid injection will last long enough to alleviate the pain while you are waiting for a month to pass. That sounds like a long time. I do hope you will not have to have more surgery.
I can understand that you are feeling tired and I hope you will be able to pick up during the weekend and that the weekend will be peaceful and relaxing. I have found that strong chamomile tea is very good for getting a good night's sleep.
I just try to keep on going but I do sometimes feel quite tired towards the evening. Raymond has a few problems with atrial fibrillation and some angina. Very reluctantly he is taking low dose aspirin and a cardiovascular selective beta blocker called bisoprolol fumarate, 1.25 mg. They seem to make him very tired.
I have looked back at the posts for July and there are a few new posts but I do not know whether they will develop into strong posters. There was a post from Hassina, from ucfknights in the US and she is posting for her mother, worriedasworriedascanbe popped in, but that is all. The strong regular posters are you, Gill, and Susie. Someone did post a PM about bitter apricot kernels and I did reply on the thread without mentioning a name and I referred her to a detailed post I put on the Alternative medicine thread in the forum Raw apricot kernels.
It seems difficult to build up the kind of groups that we used to have. It is probably because there is so much information out there now.
I do not really have time to deal with PMs. My duties here where I live take up a lot of my time and I am dedicated to the thread, so that I have to try to squeeze in some 'me' time in between all this.
I am a great admirer of the writer Albert Camus and I am trying to find time to read in French a book about him and his time as a journalist before he was a novelist. He died in a car accident many years ago and before his time. He did win the Nobel Prize for Literature. His books, along with those of Jean Paul Sartre and Simone de Beauvoir had a great influence on me in my younger days.
I must end now as I am waiting for the electrician who is going to deal with some lights in our communal areas.
Thinking of you and sending healing thoughts your way.
Love.
Sylvia xxxx
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Hello everybody,
I just wanted to say hello and round off the week.
Many thanks to Mary, Gill and Susie for all the effort they put in. thank you, Susie, for your latest post with the link that I shall have a look at later.
Fond hellos to Kath, Helenlouise, adagio, 53Nancy, Marias, Flora, viewfinder and Jags56. I hope you are all doing well and making the most of each day.
Best wishes.
Sylvia xxxx
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Hello again, everyone,
I am posting my story again, especially for the benefit of any newcomers. I want to say that if I can get this far, so can you. All newcomers are welcome to post about anything that is bothering them and we shall try to help.
I have now gone past 14 years since diagnosis and if I can do it so can you.
Sylvia xxxx
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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 marvellous service.
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Gill the last photo of your garden is incredibly beautiful! So much going on in all that green!
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Thank you. My garden keeps me happy. Gardens are such quiet healing places. Mine is absolutely full of butterflies this Summer. I just wish that everyone could have a garden.
Gill X
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Hello Susie,
Thank you for posting the link, which makes interesting reading. I did in fact find an article in the i paper yesterday about the same test. It was on page 13 under the heading Science and was entitled Breakthrough blood test could spot early return of breast cancer by Paul Gallagher, Health correspondent.
I would be interested to know what you think of this blood test.
In the article in the paper I noticed the following:
"UK trials are taking place to assess new treatments alongside the test in triple negative breast cancer, and see whether they could slow the spread to other parts of the body."
Reading the paper article and your link, I ask myself the following question:-
Would I, 14 years on since diagnosis, subject myself to this blood test to find out whether i might be heading towards relapse and spread? I do not think I would do this, especially if they wanted to put me on lethal drugs to help or delay this spread. I would not want to be taking drugs and would be wondering whether it is a way of drug companies making money by frightening patients.
I do not think i would want all the anxiety and health problems.
I think I would carry on as i have done for 14 years doing my own thing.
When I was first diagnosed I was told it was poor prognosis because it was not hormonal and the anti-hormonal drugs would be no good. I chose to ignore all this.
This is, of course, my own personal opinion and attitude.
I hope you are having a good weekend.
Love.
Sylvia xxxx
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Hwllo Sylvia,
I suppose the point is that a recurring cancer can be detected much earlier this way, maybe preventing a spread, maybe just making it easier to treat. I think I would be prepared to have it done.
Susie
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Hi, Gill
I love, love your garden pics, I especially love the bright colors all together, very nice. Everything looks like it is well-watered too. No wonder the butterflies love it! Here it is now dry as a bone, and things look dry and dusty.
RE: your comments on breast prosthetic. I have one for missing right breast, I was surprised how heavy it is, it is bigger than my other breast so I have to wear a small filler in that side of bra when I wear it. But at least I fill out my clothes.
Talk later, love, Mary
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Hi, Sylvia
I am very sorry to hear that Raymond has problems with his heart. I have heard that the beta-blockers can cause fatigue, my husband was prescribed one of that type of drug too, along with other drugs. The low-dose aspirin is probably not too bad, I have read in a few places that it can be quite beneficial.
I did notice a couple of new posters, but I think you are right. There is a lot of information around, and people are used to instant information, and when someone posts here it might take a bit before someone answers. But often the poster has already moved on and never comes back, I suppose. We can only hope they are finding what they are looking for somewhere.
I have not read Camus in a very long time, and he did die too young. I also looked up quotes from Simone de Beauvoir to jiggle my brain a little. One of these quotes really struck me, "To lose confidence in one's body is to lose confidence in oneself." I think that is what has happened to me since the cancer and chemo rode roughshod over my body. I used to feel quite strong and resilient and now I feel as if I am a bit fragile. I don't like it and do what I can to stay as strong as possible, but it is not easy.
Thanks for your healing thoughts; when I started out with this shoulder surgery last spring, I did not think I would still be struggling with it by now. They say it takes 6 months to fully heal from this surgery, but I have had an extra, and unusual, setback so now not sure what will happen next. I am thinking of taking the MRI disc to another surgeon just to get another opinion to see if I am on the right track.
Talk to you soon! Love, Mary
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Hello all Namaste
Mary hope your shoulder problem gets better soon. I really agree that once you lose confidence in your body you lose confidence in oneself. Before I had the disease I was really outspoken and full of ideas but now I have become somewhat introvert and prefer to keep quiet. I don't like to travel alone even going to the market alone makes me nervous. Maybe after few years I might get the confidence back.
I hope I am not sounding negative. You all are indeed brave and guiding each other especially Sylvia who welcomes everyone.
Here we shall be celebrating Rakhi on the 15th. It's also our independence day. On Rakhi we tie a thread on our brothers hand and wish for their long life. They in turn give us a gift and promise to protect us. It is a festival of love of brother and sister.
Greetings to all
Love
Jags56
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HI, Jags
So nice to see you here. What a wonderful idea, to have a celebration of the closeness of brothers and sisters. I do have a strong bond with my brothers, and don't know what I would do without them. We have already lost 2 brothers and those were very hard experiences. Happy Rakhi on the 15th! I will tell my brothers about this day and see what they say, they are the strong and silent type and will probably just laugh at me!
I am sorry you also feel you have lost some of your confidence out in the world. I think it is the feeling of not knowing what will happen next, and fearing it. The truth is that the possibility of bad things happening was always there, but we felt strong and able to overcome it. Now we know our bodies have betrayed us before, and could again. At least, that is how I feel at times.
I looked at your history and you are 3 years past your diagnosis and that is a very good place to be. I hope you get all your strength and confidence back in the coming years.
Have a great day, here I am wishing for rain to wash away all the hot, dry dust. Earlier in spring we had floods, and now the opposite.
Stay in touch, it's always good to hear from you!
Love, Mary
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