Calling all triple negative breast cancer patients in the UK
Comments
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CocoonCat
I am very sorry to read your news, that is a vile shock indeed. I hope you don't blame yourself too much for not finding the cancer sooner, it is the nature of this disease to grow slowly and quietly, or sometimes quickly and silently, in my opinion. I have no wisdom to offer about Xeloda, it was something that was never mentioned to me when I was diagnosed and I didn't hear of it so often as I do now. The radiation you are about to start may clear up the residual cancer, I hope that is the case. The second opinion that RosieCat mentioned could be of value too. I thought insurance would usually pay for that, I suppose it depends where you are.
I know your instinct is to pull inward, sometimes it's hard to share the not-so-good news. Remember there is always someone around here to listen, and to share your hopes and fears. In fact, that's why we all came here. To find support, and to offer support, and share news of our lives, both good and bad.
Thinking of you, Mary
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Hello CocoonCat,
Do you realise how much more positive your second post was? Yep, we're all pretty much in panic mode when we first hear that our bodies have let us down.You've also had another shock as you'd all assumed the histology would show a much better result. That was cruel and you're understandably down, but the new treatment path that your team has planned for you looks very powerful.This is doable.
As for staging, my consultant said that he doesn't take much notice as all cancers are unique, a lot of posters seem to be grade 3, or high grade. A close friend and survivor of TN was stage 3. I don't know my stage yet.
Don't ever blame yourself. None of this is your fault. Cancers are sneaky and very good at hiding. Be angry with it, never yourself.
Radiotherapy doesn't always work on metaplasic BC, and chemotherapy isn't much help to a lot of patients, so I'm going for mastectomy, though the surgeon's preference was for wide local excision. I just wouldn't trust the 'thing' not to let me down again! My surgery is on Tuesday afternoon.and after that I'll want to have a shot at chemotherapy as it might just work.
Pleased that you have a strong advocate. Like you, I hear a lot of negative information and tend not to trust the more upbeat stuff. On the other hand, I'm so utterly tired of people telling me that a friend/relative had breast cancer years ago, just a lumpectomy, a little radiotherapy and a few years of Tamoxifen!!!.I've lost the will to explain the difference.
TN is really hard work, but you can do this. Also remember that many posters disappear from the site simply because they've had their treatment and are leading busy lives again. I'm grateful to those who are well again but stay part of the community.
Be really kind to yourself.
Love,
Gill X
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So sorry to hear your news, Cocooncat. Our bodies are so complex that it's perhaps amazing that they don't let us down more often. I heard only a few months ago that breast density is an important rismk factor and had been intending to ask what mine was at my next routine mammogram -- which would have been about six weeks after I was diagnosed with breast cancer!
Keeping my fingers crossed for you.
Susie
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Thanks Mary for your post,
This thread and those who frequent it (you and Sylvia in particular) provide another source of support that makes life much more bearable.
Xx
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CocoonCat
I am so sorry you have to go through all this at your age, it's never a good time actually but 30s and 40s are when I felt the best of my life. Like you, I felt very well too when I got my diagnosis at 61. My husband was ill, but I felt capable of taking care of him and everything else that came my way.
I do also understand how you feel about the people you will meet who had other types of BC; I think I know a dozen women, including my DIL, who had surgery only with some having radiation and some taking a pill. My DIL had surgery and reconstruction and that's it. This all makes me wonder if these tumors would have even progressed to anything, it almost seems like possible over-diagnosis. And then you have people like us. The tumor I had did not show up on mammogram, was not felt at my annual gyno hands-on exam, and was sizeable and malignant a month later when I found it myself! The tumor you have might have been the same, you might have done everything within the standards of care, (which don't include mammograms at a young age) and still not found it any earlier.
You are right, people don't understand about the different types of BC, I did not either. There's no preparation for it, it's suddenly in our face and we have to deal with it. Your story of having residual cancer in breast, and more cancer in nodes, and faulty or misread scans is difficult to face too, it's too harsh when we can't trust any of the sysems that are supposed to be in place to save us. MRI is supposed to be the gold standard when looking for results, but I was told at one point that it all depends on who is reading the results. How can we control that, it's impossible. I think your decision to seek another opinion and go forward is a good one, hopefully that will give you the confidence in your choices that you need right now.
As for now, you are going ahead with the Xeloda, I certainly do hear a lot about it these days; makes me wish there was just one magic pill that took care of everything!
Talk to you again soon, love, Mary
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Hi, Sylvia
My brother is home from the Therapy Hospital now, and I hope all will go well. The main thing for him now is to do his therapy, and to be careful not to fall and re-injure himself while things are still not healed. It is quite difficult for everyone, since everyone in the family depended on him for so many things. he is just a very capable person who quietly went about and helped us all, and just loved being busy. Now he is going to have to just rest, do his program and let things heal up. I live about 12 miles from him.
I will post some pics, it has been hard to find enough spare moments; I have been exhausted fairly early every night and am finally feeling a bit caught up on sleep. The last few days of the trip were wonderful and exciting, but so full it was hard to get much rest, usually it just involved falling into bed for a while and then we were up again early the next morning.
So far the only Chris Woollams message I can find in my inbox is the one that emphasized Childhood Cancers. I did go to CancerActive website and saw that he has a link there, I will try and find the posts when I can.
So true about the unpredictability of life, just when we think we have life in hand it shows us that we are not in charge.
We did get some more rain while I was gone, everything is green again and hot; it should be more autumnal here but not quite yet.
I will talk to you again soon, love,
Mary
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Hi Cooncat,
Sorry to hear your frustration and angst. I get it. I knew I did not gave a complete response to chemo as I could still feel tumour. Pathology post surgery confirmed that. In fact the pathology said no response at all but I felt the tumour change size. Anyway I too am doing radiation and Xeloda. My medical oncologist said it was up to the radiation oncologist as to when I could start the Xeloda and i started the day after I started radiation. He said if I start to burn we will stop the chemo. I am a tad red and I am day 14 of 28. I expect my skin to react as this is my second lot of rads on this side. I am in my week off the Xeloda (2 weeks on 1 off - 2000 mg morning and night). Will have bloods tomorrow and see the MO for clearance to start next round. Same same they want 6 months of Xeloda. I have notice an increase in my neuropathy and I am tired. I have also developed a cough so hoping that's a cold or hay fever... I am glad to start now. I am desperate to finish treatment. Xeloda is given to metastatic BC patients, so I wonder what they will prescribe after Xeloda, if more treatment is required. Fingers crossed Inever find out!
MO says this Xeloda is additional insurance.
I do believe you do whatever you can do whilst you can do it.
Good luck with your treatment.
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Helenlouise,
What you are going through sounds grueling, hoping things keep getting better for you. I did not have radiation after chemo, in my case I had a rt. shoulder injury while on chemo, and constant flaring pain. They decided the radiation on rt. side breast area might make things worse so passed on it. Sometimes I think I should have insisted, but in truth I was done in by the time I finished chemo. The neuropathy kept progressing and I had many other unpleasant side effects, at times I had the feeling my onco didn't know what to do with me. I may have done him in too, he retired on my last day of chemo.
I hope the things you are doing with the lymphedema therapist keep it away, Sylvia has made us all aware of the problems of that side effect, and I feel much more informed there. I'm sure you know more about it than you ever wanted to learn!
Thanks for kind words, I feel such a kinship here with the women I have come to know and our shared experiences.
Talk to you later, love, Mary
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Hi, Susie
I wonder if the reason breast density is assumed to be a higher risk for BC is because the denser the breast, the harder it is to get a good reading with mammogram. That's how the docs explained my lack of diagnosis with mammogram 2 months before the tumor was found. Although they couldn't explain the gyno full-body exam that found nothing one month before I found the tumor I had. It may be much more complex than that, it does make me wish I had removed both breasts while I was at it, since I have dense breasts too.
In reference to your comment on BC perhaps being more common because of Western lifestyle, and not as many people having 6 children and lots of breast-feeding; I had 2 aunts with BC, one had 8 children and one had 5. Both died many years later of other causes, of course I don't know what type BC they had, I don't think either one had chemo. That is just anecdotal of course, I have heard too that it's not healthy for women to be childless and never breastfeed. I am a childless woman, that probably made me more vulnerable, maybe? I'm sure the Western Diet can be blamed for many illnesses. We have many dreadfully overweight people here with all the problems that can bring.
I too, am always questioning definitive causes, it seems like the answer should be out there somewhere.
Talk to you soon, love, Mary
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hi all
Some views from Alaska
This is part of Alaska Range with Denali the tallest peak
I will try to post more later, technical difficulties.
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Hello CocoonCat,
I have just read your post and I can understand how upset you are. I am going to try to be the voice of calm for you.
From your details you have not put the dates of your two treatments, but I am assuming from your post today that you had five months of chemotherapy and then a lumpectomy and axillary lymph node dissection. Chemotherapy is not given to get a complete response. It is given to shrink the tumour in order to make surgery easier and it is given before surgery when tumours are large.
I can speak only from my own personal experience but I had a CT scan and a bone nuclide scan before my treatment began and I was told exactly what that treatment would be. It would be surgery, a mastectomy, after six months of chemotherapy to shrink the tumour to make surgery easier. During chemotherapy treatment the tumour was measured by the oncologist before I had each infusion. The tumour shrank a bit but it certainly did not disappear. I had the mastectomy and after a few weeks I had three weeks of radiotherapy with boosters included. The radiotherapy was given to mop up any stray cancer cells. After the radiotherapy I had a CT scan and a bone nuclide scan to complete the treatment. I then had an appointment with the breast cancer consultant and the oncologist and I was told I had an excellent pathology report and that I was NED (no evidence of disease).
I do not think that it makes any sense to get a final verdict on where you stand until you have finished all your treatment. It seems as though you have been getting information before having any radiotherapy.
Try to settle down and go through your six weeks of radiotherapy and then ask what the situation is before starting the capecitabine (Xeloda) for six months.
I do not know why capecitabine is now being used as extra chemotherapy. What is the benefit of it? What are the side effects? Your immune system will already be weakened by your treatment so far and you still have six weeks of radiotherapy to go through. You then need to recover from your radiotherapy. This treatment may seem easy but it still takes a toll on you. I would think the radiotherapy would mop up cancer cells in the lymph nodes and in that general area around the chest.
I do hope you will be able to change to a more optimistic mood and focus on the fact that six weeks of radiotherapy will mop up those stray cells. Focus on getting strong by healthy eating and some short relaxing walks to heal your mind and body. Tell yourself you are going to get through this and focus on that.
I remember clearly that at my first hospital appointment when I saw the breast cancer consultant, she did the fine needle aspiration and I saw her the next day, had a mammogram, biopsy etc. and was told latter that day that I did not have hormonal breast cancer, that tamoxifen would be no good for me, and that the prognosis was not good. I chose to ignore it, got through the standard treatment, ended up with no evidence of disease. I then did my own thing while going through regular appointments for check ups. Here I am, over thirteen years since diagnosis, and doing fine. I was always glad that I did not have hormonal breast cancer and that I did not have to face ten years on tamoxifen and drugs such as Arimidex, to control oestrogen. I was always positive about this and have just lived normally on a healthy diet and keeping active, mentally and physically.
If I can do this you can do it. Think positive!
I can understand you are in shock but you will come to terms with the situation and will be kept busy with your radiotherapy for the next six weeks.
Please stay with us and let us help you all we can. Be determined to get through this. There are no guarantees in life and each day brings its risks.
Take great care and come and talk to us whenever you need.
Sending you all my love.
Sylvia xxxx
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I hope they give us buttons or other features that allow us to tag posts in the thread without having to write a response when they upgrade the site. Sometimes all I want to do is tag "like" or "smiley face" or "sad face".
So till then I'll say: I like your picture Mary
thanks for sharing. 0 -
Hello CocoonCat,
I was just looking at your post to Gill. As for the stage of a cancer, it could be that not everyone is told about the stage. My information has always been that it depends on the size of the tumour. My tumour was in the group 6cms+ but I was not told the stage. Your tumour was quite small so I cannot see that it would be stage III, but different countries may have different charts. Unless you are stage IV, you are considered to have primary breast cancer and will get the standard treatment of a mixture of surgery, chemotherapy and radiotherapy. If you are stage IV it is metastatic and means it has spread to far organs in the body, brain, liver, lungs or bones.
As for the grade, lots of TN tumours are grade 3 but some are grade 2.
I was glad to know that you have your other half to go with you for your appointments.
Do you think you will get a second opinion?
Thinking of you.
Love.
Sylvia xxxx
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I asked my consultant what my stage was when I saw her last in August and she said that they didn't really bother with that any more. Unless it's stage four, then I doubt it makes much difference to the outcome.
Susie
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Hello Mary,
Thank you for your post. I was glad to know that your brother is home.
Thank you for lovely photograph.
I can understand that you are feeling tired but rest whenever you need it and you will gradually pick up.
As for Chris Woollams, I think there were two previous emails but I have deleted them. There was one sent on August 28th. From our point of view, the most interesting part was number 4, the Surprising cause of breast and pancreatic disease and a section within it entitled Gum disease and breast cancer. I think we have already been through this on the thread. I am convinced that my supposedly genetic gum disease has played a role in my breast cancer. You will remember we went through all that in the book about it and how the mouth problems travel to the gut and how an unhealthy gut is the cause of so many ailments.
Number 8 was interesting, entitled More women than men now develop lung cancer.
The other email was dated September 4th. Number 5 was of interest here. It was entitled Most women diagnosed with breast cancer do not need the chemo and there was a section to click on about this.
I think that most of the other information is about things with which we are familiar, such as the benefits of green tea, curcumin, fermented foods etc. and the harmful effects of sugar, dairy foods and junk foods etc. We know these are the enemy for breast cancer patients.
Here in Exmouth, we had a little rain yesterday but we need weeks of it. The grass is in a mess and we have birds pecking into it and doing what looks like a natural de-thatching or scarification!
It is mild here but it feels like autumn now.
I am trying to get more time to myself, but it never seems to work out. I am so fed up with all the mess up with Brexit! I cannot believe that two years down the road from the referendum the government is still messing around and not running the country properly.
I look forward to more photographs and wish you all the best.
Love.
Sylvia xxxx
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Hello Helen,
I do hope all goes well with your treatment. It is interesting to know that you are getting the same treatment as CocoonCat. It looks as though the drug companies have been successful in getting patients with triple negative breast cancer on more drugs instead of leaving them, after standard treatment, to get their bodies stronger through healthy eating and mental and physical exercise.
I do hope your neuropathy will not get any worse and I am not surprised you are tired.
I think that neuropathy and lymphoedema are the most common long term side effects of each stage of our breast cancer treatment. Surgery can cause lymphoedema, chemotherapy can cause lymphoedema and neuropathy, especially the taxane drugs, and radiotherapy can cause lymphoedema. Our bodies are completely messed up and it takes time to build them up again, but lymphoedema and neuropathy are chronic side effects of our treatment.
I would not like to see the bc.org forum change to imitate Facebook. What would be the point in that? The forum is for support and is run by a charity and the posts are monitored and that is all for the good.
I would not be interested in this forum if it turned into Facebook. I started this particular thread as something serious and professional. I have declined all invitations to join Facebook. That is my opinion. On this thread we have had all kinds of photographs that are useful and interesting, but that does not mean they should be rated.
Good luck with your treatment.
Fond thoughts.
Sylvia xxxx
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Sylvia and all
The view of Denali is taken from a river that runs past a village called Talkeetna, it is the starting point for people who are going to attempt the climb to summit of Denali. We were told that many climbers use Denali climbing as a practice run to climb Everest; although people have died in the attempt on Denali as well. One of the guides said this is a very happy year, because no climber has died on Denali so far.
Personally, not sure why anyone wants to do that, but to each their own.
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Sam? Sam from chat room years ago?
It’s me Kosh from Canada......
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Fall colors in Denali National Park
grizzly bear feeding on berries, they seem almost oblivious to the Park buses but we were told to be quiet and keep all body parts inside bus0 -
Sylvia,
I started having phone problems on trip, not helped by spilling water on it while in bus traveling in Park. My pictures became fuzzy and dark, my phone still doesn't know what time it is here, and I can't seem to pull up my Glacier pics to post on this thread. Or some other ones I would like to share. Sigh, I do know it's time for a new phone, the battery is shot and I should do it before it dies completely.
Mary
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Hello Mary,
Thank you for the photographs. They are very interesting and it is always enjoyable to have meaningful photographs from the holidays from the group that we have formed here.
I do think it would be useful for people joining to start reading from the beginning of the thread so that they realise everything that we have covered. They can do it as time allows and skip where necessary. This thread is full of information.
I do hope Monday is going well for you. Please tell me how you got such a close up of that bear!
Love.
Sylvia xxxx
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Hello Koshka1,
I saw your post on our thread and wondered whether you were talking about sam52 from London, UK.
Although she was not triple negative but had the same tumour receptor status, she did post here from time to time, but I have not heard from her in ages. I got to know her when I posted on the High Calcium thread and we became great friends. We had both been diagnosed with an over active parathyroid gland and we did research together and actually went through surgery together to remove a benign adenoma on one of the parathyroid glands. We did a lot of research about a connection between breast cancer and an over active parathyroid gland.
Sam 52 actually created a thread about this but she stopped posting on it. I have tried to revive it from time to time.
I know that Sam joined bc.org about 2001 when she was diagnosed with breast cancer. She was going to move from London to Gloucestershire with her son. I would love to find a way to get back in touch with her.
If this is the Sam you are looking for, please let me know.
I see that you are from Vancouver. I lived in Canada for seventeen years.
Wishing you all the very best.
Sylvia xxxx
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Hello everyone,
Some years ago the Moderators asked me to write my breast cancer story, as they wanted to put it on a thread that was about peoples' stories from around the world. from time to time when we h=get new posters, I put my story on this thread to motives new patients.
Wishing everybody all the very best and telling you can get through your treatment.
Best wishes
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 marvelous service."
--sylviaexmouthuk, United Kingdom
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Hi, Sylvia
It's nice to see the tale of your journey again, you are such a success story!
The grizzly bears that we saw showed no fright because they were so busy feeding on the berry bushes we drove through, the guide told us they get used to the buses in the summer, and in fact some of the female bears who still have cubs seem to like the proximity of the road. Mainly because the males will actually kill the cubs if they have a chance. The bears are extremely protected in the park, and we were told the park is ours but it's the bear's home and we must be respectful. I learned quite a bit about grizzly bears and how to behave around them, but still don't want to be facing down a mama bear with her babies! The bears are not as tolerant of individuals as they are of the school buses. The people there are very diligent with their trash disposal, and with being careful to not allow the bears to have human food, and there are Park Rangers to watch over things. In the winter the Rangers can only get around the Park with dog teams.
The Denali National Park is 2 million acres and supports only about 350 grizzlies, I thought it was amazing we saw as many as we did, I think we saw 7 or 8. We also saw caribou, moose, fox, snowshoe rabbits, owls. I wanted to see a wolf but we did not, nor did we see a lynx. Amazingly, there are only about 80 wolves offically in the Park. How they do these counts of animals I don't know, it is what we were told. While we were in the Bay of Alaska we saw humpback and orca whales, and dolphins and later near the Glaciers saw many sea otters. I did not see seals, but many people did, apparently.
My pic of bear is from after water got in phone camera, it's fuzzy. After that it got worse, that night I took it apart as much as possible and dried it out so the camera works again, but I am missing pictures.
I do barely remember Sam52, I think she left about the time I found this place. I wonder what happened to her? I also wonder if Hanieh is in Turkey now, and has managed to have her daughter and husband there too? She was planning a big move to Canada, but I have no idea what has happened there.
Talk to you later, love, Mary
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Hello Mary,
Thank you for your last post yesterday.
I was very interested in what you had to say about the bears. I do not think I would feel very easy even in the bus. The idea of bears frightens me. When Raymond and I were in Vancouver out in the countryside, we stopped the car to put some rubbish in a bin and there in the bin was a bear cub. On the other side of the road, busily eating off a shrub, was what must have been the mother bear. We quickly got back into our car and drove away! Outside of Vancouver, British Columbia, can be very wild indeed.
I am not sure when sam52 stopped posting here. I know she was diagnosed with breast cancer in 2001 and that we were in contact for a long time after I discovered breastcancer.org in 2009, when I was facing surgery to remove the adenoma on my lower right parathyroid gland. It is a pity that the thread she started, Breast cancer and hyperparathyroidism, is so inactive. We actually met on the High Calcium thread in the forum Not worried but concerned. We did really become good friends. I like to think she has now moved as she wanted from London and is happily settled in Gloucestershire.
I am very disappointed that we have not heard from Hanieh or Marias. I do hope Hanieh is alright. I do follow all the world news and things do not look good in Iran. However, I am not sure what is going to happen in Turkey, either. The world seems to be in turmoil and a proxy war seems to be ongoing in Syria, where everyone seems to think they have a right to throw bombs.
How is everything with you, both health-wise and in your everyday life?
We have a strong wind blowing here in Exmouth today and leaves are everywhere. There is still no rain and we have problems with the lawns here. I have been watching three black birds scarify the lawn. I got someone in to have a look and it appears we have red ants and leather jackets beginning to emerge, but the lawn cannot be treated until we get some rain.
I thought you would be interested in a leaflet that I picked up when I went to see my podiatrist last week. She shares premises with an alternative therapist who is also a lymphoedema specialist. This leaflet is all about breast cancer related lymphoedema. It is published by BSN Medical – www.bsnmedical.co.uk. It is actually more than a leaflet, it is more a glossy booklet and is a very complete picture of breast cancer related lymphoedema. I shall try to print some information a bit later, but you might like to have a look at it and I think others would gain from looking at it. It has got so much useful information in it.
I do not quite know what to make of the thread at the moment. Some of the long-time posters who have finished treatment may have left.
Look forward to hearing from you.
Love.
Sylvia xxxx
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Hello Mary,
I did a bit of looking to see if I could find out about sam52 and I saw that she last posted on a thread about how damaging can calcium supplements be? She last posted on our thread January last year. I was surprised at how many times she actually posted.
I have also bee looking at the thread where we met and it was in 2009 on the forum Not diagnosed with a recurrence or metastases but concerned, on the thread High blood calcium levels. There are some interesting posts on there. Sam then created her own thread Parathyroid disease and breast cancer in the forum IDC (invasive ductal carcinoma). That was back in 2012.
I do hope she will appear again, just like Peter and Lou.
I have also been looking up on the forum Lymphoedema. There are so many threads that it gets confusing. I have decided that the most up-to-date thread and probably the most useful is Questions about lymphoedema and how it affects your life. I have picked up on the name Binny4. She has been on bc.org since 2004 and has posted a lot on lymphoedema. I have not read anything there but I may have missed something about how chemotherapy can cause lymphoedema and that the taxane drugs are the cause.
I have also been checking out BSN Medical and found it very useful and interesting. It deals with lymphoedema as well as chronic venous disease, so obviously I found it useful. It looks as though the answer is just compression stockings. It makes me wonder about any kind of surgery on the veins, since the cause of venous eczema seems to be valves that do not close.
Strangely enough, I got to speak to a friend of mine who leads a very busy life as a senior nurse to cardiovascular consultant at Barts Hospital in London. She sees cases of venous eczema and the day before she had dealt with a patient who had it. She did confirm that the NHS does not treat it unless you get venous ulcers.
Thank you for kind words about my pasting my story again. I do it to try to motivate everyone. I feel as though it needs a follow up, entitled something like My story part 2, 13 years on since since diagnosis and still surviving despite chronic side effects! It is just a matter of finding the energy!
That is all for now.
Love.
Sylvia xxxx
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Hello everyone,
Had my surgery on Tuesday afternoon, left mastectomy and removal of some suspicious lymph nodes. I paid privately, as the NHS were leaving surgery for 62 days from referral by GP to the operation. Had expected lymph nodes to be clear as metaplastic breast cancers rarely use this mode of transport. Hope no-one minds my staying on this forum. I'm triple negative, and my treatment will be the same as any other TN, but might not respond as well.
Must say that whilst I'm extremely grateful to have the NHS and my treatment will be transferred there from now on, Spire Hospital was amazing. Nurses had time to sit and talk, physio, pharmacist, breast care nurse all arrived yesterday morning and again, had time to talk. NHS staff are so stretched and under resourced that the pressure must be unbearable. All the staff I spoke to at Spire Hospital said they'd left the NHS just so they could have more time for their patients and to enjoy nursing again.
My histology results will be back either this Wednesday, or next Wednesday. Hoping that they don't throw up anything worse.
Just want to say to anyone who has just been diagnosed with triple negative breast cancer and has yet to undergo surgery and sentinel lymp node biopsy. I'm still amazed at how painless it was. Mastectomy only took an hour and a quarter, would imagine wide excision would be no longer. Modern anaesthetics are amazing, no nausea and I woke up pain free and remained that way. I'd been very nervous about the injection into the breast, in NHS nuclear radiology department prior to sentinel lymph node removal during surgery. Absolutely painless, used Emla cream two hours before and was completely numb. It's an extremely quick injection. Don't know if that will help anyone, but none of this is easy, so at least be reassured about the surgery.
Loved the photo of the bear. Don't think I'd want to be too close though.
Cocooncat, I think you're absolutely right to go for a second opinion, my doctor didn't mind at all and who knows if another look might bring some new ideas.
Love to everyone,
Gill X
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Hi Gill,
Glad you've got that hurdle over. We have so much technical wizardry now, like the nuclear radiology, and women were surviving breast cancer long before these marvels came in. You were quite right to have it done privately given the long delay offered. I had surgery only 13 days after diagnosis. I think being in London helps as we have more capacity.
Do you know what the next phase of treatment will be?
Susie
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Hi Susie,
My first surgeon thought that having a mastectomy or wide excision would be enough. I would never have agreed with that, as this cancer prefers to use the bloodstream to travel, rather than lymph nodes. When I see the Oncologist, which I hope is soon, I'm going to ask for everything to be thrown at it. Radiotherapy and chemotherapy often don't work well on metaplastic BC, but I'll ask them to keep trying until something does work. Being just one percent of all BC means that there isn't much research. Worried about the suspicious lymph nodes though, hadn't expected any at all.
Your surgery was very quick, guess you're right about having so many hospitals in London. Hope the radiotherapy goes well, despite the long journey time. Agree with Sylvia, no idea why the NHS keeps these old Victorian hospitals.
Love,
Gill X
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Gill
I think that was a good thing to do, go off on your own to a different hospital. These TN tumors (and metaplastic, probably) are quite fast-growing, that would have been a nerve-wracking 2 months! Spire sounds like a wonderful place, where medical staff would actually spend time with you and not have one hand on the doorknob at all times.
I agree with you, mastectomy and lymph node removal was not very painful; the arm-stretching afterwards was more so. I read somewhere later that mastectomy was considered minor surgery, I'm not sure I'd go that far, but I suppose because a breast is not something necessary for life.
I'm not sure what the injection was that you had? Something with radiology?
Glad you have come through all that so well, talk to you soon
Mary
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