Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
I shall never know why I had an overactive parathyroid gland or whether it caused my breast cancer. All I know is that my breast cancer surgeon/endocrinologist told me that it had preceded the breast cancer.
I was glad to know that you are feeling better about your brother's situation.
It is true that there are a lot of risk factors for lymphoedema. I would think all surgery makes you vulnerable as there are lymph nodes in various places and the lymph system goes throughout the body. They follow the blood vessels. Lymphoedema can happen at any age, I would think. I have just been reading, in the latest book on breast cancer that I mentioned, that surgery is already available where with lymphoedema lymph nodes can be taken from the groin and transplanted to the missing ones under the arm, for example. The book says it will soon be available in the UK. It makes no sense to me. What happens about the missing ones in the groin? What happens if the transplanted ones do not work? The problem has then been made worse. This is how orthodox medicine works! It is either pills or surgery.
I am very interested in your visits to your vein doctor. My own view is that with problems with veins, and remember some are visible veins (varicose) that appear in the immune response to inflammation and some are hidden but they are not a disease. The disease is venous reflux and the veins appear as the immune system tries to deal with it. The problem is valves that do not close and blood goes to the ankles instead of being pushed to the heart and we have venous eczema and venous ulcers. Unless there is a way to deal with the valves there is no solution. Cutting out veins does not solve the problem and that is why the varicose veins come back. I think my only question to your doctor would be to ask whether malfunctioning valves can be repaired? I would also ask how to treat the staining to stop it developing into ulcers.
I do hope you will be able to read that latest book The Complete Guide to Breast Cancer – How to Feel Empowered and Take Control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan – Expert doctors and cancer survivors, published a few days ago by Penguin. I pre-ordered it and it cost just £10.49. I thought that was good for a book of 295 pages and 24 chapters. It is highly readable and covers all aspects of what happens when you get a breast cancer diagnosis.
I agree with you about these compression sleeves, stockings and other compression garments. I do not wear my compression sleeve.
I think you are right to be wary of treatment of veins. I think they can mess up both the nerves and the lymph system.
That is about all for now. It is a calm, sunny day here and I need to have a good inspection of the grounds and write off instructions to the gardeners we employ to cut the grass etc.
Take great care.
Love.
Sylvia xxxx
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Hello Kath,
Thank you for your post and for letting me know that there is no immune booster in the trivalent strong vaccine. I have a friend who is going to quiz her doctor about all this. I think the wording here may be to encourage the over 65s to get the vaccination. I read that last year this age group did not take up the vaccination in great numbers. Apparently surgeries here do get paid for each person that has the vaccine.
Thank you for the links. I shall read them later on today.
I did not know that we were heading for a cold snap. It was pretty cold last winter. I suppose we shall have the usual chaos, especially if it snows! We still need rain, but there is no sign of it today.
Love.
Sylvia xxxx
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Hello Flora,
I was sorry to read your last post and learn that your mother had once again been admitted to hospital because of low neutrophils and a high temperature. As difficult as it may be for both of you, the hospital is the best place for her to be in these circumstances.
Did your mother have Neupogen injections after her chemotherapy treatment? This seems to be standard procedure now. Neupogen is one of the brand names for filgrastim, which is a synthetic form of G-CSF (granulocyte-colony stimulating factor) a naturally occurring protein responsible for the manufacture of white blood cells which fight infection.
The main side effect of this is bone and muscle pain.
When I had my chemotherapy treatment anti-sickness medication went into the chemotherapy drip and I think it is made up of anti-histamines and steroids, I did not have these before chemotherapy treatment. After chemotherapy I was given anti-sickness pills to take for three days, but I think I did not take them and I did not have any sickness. At that time in 2005/6, there was no mention of Neupogen injections but it now seems to be standard after chemotherapy and at home.
I do hope your mum is recovering well and that she will be back at home and given time to recover from all of this.
Please let us know how you get on with the oncologist on Friday.
I look forward to hearing from you about the Healthy Eating Workshop you went to at a Maggie's centre.
Has your mum lost weight during chemotherapy?
We have not heard from Ellen about her mum recently. I remember she is 81 and I do hope she is alright.
That is all for now.
Love.
Sylvia xxxx
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Hello Flora,
I have just remembered that the steroid that I had with my chemotherapy infusions is called dexamethasone (brand names Dexsol, Maxidex, Ozurdex). I always tend to use the generic name, thus dexamethasone.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
Firstly, Flora, what an appalling experience you and your mother have had. I do hope that there is no long term impact and she is fully rested before her treatment is continued. I noted that Mary had a difficult time with her chemotherapy too. It's so good to share these experiences with each other and to be forewarned that treatment can be really tough and frightenening sometimes. Wishing you and your mother a smoother journey from now on.
Yesterday afternoon, I was given the results of my surgery. Partial clearance of lymph nodes showed that all were clear. The final tumour size was 2.4 cms and I remained grade 2. I was elated by this until being told that that was the end of my treatment. I had originally been informed that I would follow the usual treatment path for triple negative. However, the hospital is adhering to National Guidelines, which now indicate that following a mastectomy, with clear nodes, no chemotherapy or CT scan or MRI is needed. However, Metaplastic cancer rarely travels via lymph nodes, preferring the blood stream where mets are often found in distant areas. Chemotherapy is used as a matter of course in the USA and Canada, and most other developed countries - couldn't find anything about European treatment. It's true, that it takes time to find the Chemotherapy that will be effective on my subtype, as it can be resistant to mant treatments. Other countries also check for mets via CT or MRI. I feel that I've just fallen back into the last century, or may the one before. No wonder the prognosis is so poor for metaplastic cancer patients. Subtypes dictate what will work and what won't, yet is all I hear from the hospital is that there's too little research to know what to do. Very low today as this feels like a death sentence. Also very very angry at the apathy and that once again, I will have to fund a second opinion myself. All the staff have been so kind, but kindness doesn't kill off cancer cells. I realise that chemotherapy is expensive, as are MRI scans, but so is diep reconstruction which I've been offered. To be blunt, being flat one side is difficult, but it won't kill me!
Sorry for the rant, I just needed to let off steam.
Love to all of you,
Gill X
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Hi, Flora
I'm so sorry your mom has to be in hospital again, but at least there she will be given enough antibiotics to ward off the sepsis. I did not progress to sepsis when I had the neutropenia, I was admitted to the hospital for 5 days with 2 bags of antibiotics going in, and on the third day they started giving me the neupogen to build up white cells. My white cells were down to .03%, and once they started building up I felt better. Then started to have uncontrollable diarrhea, not sure where that came from. I remember I was in a sterile room so people did not come in very often; once I felt better I kept getting up and changing my own bed and my own gown. Somebody had to do it, even the staff wasn't in there unless they had to be, nobody likes putting on the mask and gloves. I really feel for your mom, I remember well how weak and out-of-it I was.
Sometimes it's hard to figure out which drug bothers you, because they give you several at once. Perhaps it is methotrexate as Sylvia mentioned, although I thought that was a steroid too. I was given Benadryl before infusions too, they would usually drip it, once the nurse came with a syringe and just injected it into the line and when it hit home my legs started moving uncontrollably. There was nothing we could do about it, it had to wear off.
As far as platins go, they also have their own side effects; I believe neuropathy is one of them. You might look into foot icing if your mother decides to take that route. I did try that, but I was too late with it since my neuropathy started after my first dose of Taxotere.
I also hope your mom has no long-term heart damage, what she is going through now will be quite a lot to recover from without that. Good for you for trying to get her to eat, that is a challenge. I remember I could eat eggs and yogurt with enjoyment. But many other things just didn't appeal. I remember Sylvia recommending mashed potatoes, applesauce would be good too. Probably right now nothing at all tastes good to her.
Take care, Flora. Heartfelt best wishes to your mom and you, love
Mary
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Hello Mary and Flora,
I have just read Mary's post to you and felt that I should pop in to correct something, as we do not want patients absorbing wrong information.
I did not say that methotrexate was a steroid. I know that methotrexate is a cancer drug and is used in some chemotherapy regimens, such as CMF (cyclophosphomide, methotrexate and fluorouracil). It is an anticancer drug. I mentioned that the steroid that I had in my chemotherapy infusion was dexamethasone, which, as I told Flora, is a steroid. It is a potent and long acting one.
I hope this clears up any confusion.
When thinking about treatment, remember that all drugs have side effects. There are no exceptions.
I do hope your mum is feeling better, Flora. As Mary said, I did indeed have mashed potatoes quite a lot during my treatment. I did not put any dairy products in the mash, just warm soy milk.
Best wishes to both of you.
Sylvia xxxx
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Hello Gill,
I shall answer in more detail later. I did start this thread back in 2010 because I thought we were indeed in the Dark Ages with cancer treatment. I think all the news we get today is that we are not doing as well as other countries, such as the US, Canada, France and Germany.
Fight your corner and get what you want.
Talk to you again soon.
Love.
Sylvia xxxx
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HI, Gill
I read a couple of articles on Metaplastic TNBC, and like you, I am puzzled as to why they don't suggest chemo when it is always suggested to TNBC. Just from casual reading, it seems Metaplastic is a form of TNBC, I'm not sure that's the right way to say it. We have the option to have chemo or not, do you think you will pursue another opinion? Nancy52 who posts here, has TNBC but opted not to do chemo, she seems to be doing well, but another opinion sounds like something I would do too.
Is radiation for you not even mentioned by doctors? I did not have radiation, but that was decision made by doctors and me together, as you can see most people who post here do have radiation.
Sorry these docs were not more helpful, but glad you have the resources to push on further. It's very strange how this disease can take all these twists and turns.
Talk to you soon, love
Mary
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Sylvia,
Thanks for correction. I realize now that I have always confused methotrexate with dexamethasone, even typing the two words together is hard for me! I guess I never wanted to learn all this lingo.
I have been having a lot of leg pain, of course the vein doc blames my varicose veins; but when I have a massage my massage therapist says it is very tight muscles. She recommends stretching, and I do that, but it is painful too. Standing for an extended period of time has become a real no-no. I attended a wedding reception Saturday where I stood for about an hour and was in pain. last night we had choir practice and I cannot sing sitting down, so it was painful too. I came home and massaged a mint massage cream into my legs, which helped. Walking is good, it does hurt my knee, but at this time the legs hurt more, so walk I will! I have upped my mineral intake, and am not sure what is going on. I don't think it's all vein problem, and I really don't want to subject myself to more of that at this time. I also have leg cramps. I will see my acupuncture doc next week, he usually has some ideas.
Flora and her mom are going through such a lot right now, I hope her mom feels well enough soon so she can really start recovering while she figures out what to do next.
Hope you are well, and we have a very chilly morning. Now I can believe fall is here!
Love, Mary
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Hello Sylvia and Mary,
Thank you for your responses. I agree with you Sylvia, we do seem to be falling well behind in cancer treatment and research. I feel for the hospital staff and have no complaints about them at all. It's largely due to the goodwill and dedication of doctors, nurses and other clinical staff that the NHS continues to function as well as it does and that won't last forever.Sometimes, during the Winter months it's barely able to limp along at all.
Yes, I'll be fighting my corner Sylvia, none of us should have to though.
Mary, you've got the right idea about metaplastic. It's nearly always triple negative, but unlike triple negative it travels mainly via the bloodsteam, so the lymph nodes often remain clear. Chemotherapy might not be effective at all or might only have a partial response, while on some people it's very effective, so it's a question of working out which combination will stand the best chance of working. Problem is that metaplastic cancers have a reputation for being chemotherapy resistant, many combinations are effective, and the USA and Canada appear to routinely offer it and many patients do benefit from it either fully or to some extent. It should be the patient's choice.
I was thinking today, just a few short weeks ago, I'd never heard of metaplastic breast cancer, Now, suddenly I find myself devouring any research I can lay hands on, reading it over and over again until it all sinks in and becoming, (in a small way), an expert on my cancer. I think many of us here are probably the same. Thank goodness for the internet - though sometimes I know I ought to be outside doing something more productive.
Love,
Gill X
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Gill,
I can see why radiation is not an option, if metaplastic travels through bloodstream that would be a hard target. Just thinking about it, it seems like chemo should have an effect, since it also travels through bloodstream. But then the experts apparently say it doesn't have enough of an effect?
I believe you when you say you are reading everything you can find on the subject, I think that's completely normal. It's kind of like a patchwork quilt, we get some information from the surgeon, some from the oncologists, some from the nurses and techs, and more from our research. Sometimes it ties in with what we think we know, and sometimes not. Our quilt may be quite a jumble! I hope yours turns out very well.
Talk to you soon, love, Mary
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Hello Gill,
Sorry that you have had such an upset. Have they not given you an appointment with an oncologist following surgery? Maybe he or she can reassure you that surgery was sufficient and they now expect a full recovery? It's certainly worth seeing one privately if it helps set your mind at rest or, alternatively, if he or she recommends that you try chemotherapy.
Love, Susie
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Hello Gill,
I agree with you about the hospital staff. They do their very best and are not working in good conditions. I am not surprised that many doctors and nurses are leaving the NHS. I cannot see it has much of a future if it does not get more support from the present government. We certainly need to pull our socks up when it comes to cancer treatment.
On the front page of the i paper yesterday I was concerned with the headline "Breast cancer warning for British women" and it said that the number of people who die from the disease in the UK is set to rise within four years, reversing three decades of progress. It further said that survival rates are still improving in Britain, but obesity and an ageing population will reverse the overall trend for women. It further said about a plea for fair funding to prevent 1,000 deaths a year from postcode lottery. There is a full article on page 6 of the newspaper. I still do not think there is enough emphasis on prevention. There is too much demand on the NHS now and our country is overpopulated. There are too many young women getting breast cancer.
I have read that surgery is the most important part of breast cancer treatment.
In the latest book on breast cancer, that I mentioned in previous posts, I was surprised that in the second chapter – Breast cancer: An overview – under TYPES OF BREAST CANCER, I could find no mention of metaplastic breast cancer. There is mention of Ductal Carcinoma in Situ (DCIS), Invasive Ductal Carcinoma (IDC) and this represents 80% of all breast cancers worldwide and develops from the breast ducts. It is also known as breast cancers of no special type (NST). There is mention of Invasive Lobular Cancer which represents 15% of all breast cancers worldwide and develops from the breast lobules. There are two types of lobular cancer. The book states that classic lobular cancer is the most common type and is slow growing. The other type is pleomorphic lobular cancers that are faster growing and can have a worse prognosis.
There is mention of invasive mixed cancer, a mixture of ductal and lobular cancer cells and is usually treated like invasive ductal carcinoma.
Other types mentioned are inflammatory breast cancer, which is said to be an aggressive form of breast cancer that looks like a breast infection (mastitis). The other two mentioned are Paget's disease of the nipple, another rare cancer, and Phyllodes tumour, a very rare cancer. Apparently most of these Phyllodes tumours are non-cancerous but a small number can be cancerous. The book states that it rarely spreads to other parts of the body and it is unlikely a patient will need any further treatment after surgery.
If you want to know more about all the information in this 2018 book, The Complete Guide to Breast Cancer, it is easy to read and full of useful information and advice.
I was wondering if you know the percentage of women getting metaplastic breast cancer?
Have you had any thoughts about getting an opinion on your situation from the Royal Marsden Hospital?
I think it is important to remember to know your type of cancer, because this will affect prognosis, rather than the receptor status. Even so, when all is said and done, it will be surgery, chemotherapy and radiotherapy, with anti-hormonals where applicable. Early diagnosis is important as at this stage only surgery may be necessary.
I do hope you will be able to get some peace of mind on all of this.
Love.
Sylvia xxxx
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Hello Mary,
I was sorry to read that you are having a lot of leg pain. Do you think this is caused by the venous reflux and the inflammation involved rather than the varicose veins, which appear as the immune system tries to cope with the inflammation?
I do know that with this kind of problem, standing for long periods of time is the worst thing a person can do. It appears that you have to keep on the move as much as possible and elevate your legs when sitting down. The problem with just sitting down and elevating your legs is that as soon as you stand up the blood goes back to the ankles and feet.
There is a good product here for muscle pain, called Biofreeze, and it works well.
I do hope you get some good ideas from your acupuncturist.
That is all for now.
Love.
Sylvia xxxx
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Hello Kath,
I just wanted to let you know that I did look up the links that you sent. I read with great interest the one entitled 2018 seasonal influenza vaccines from the Australian Government Department of Health. I could not obtain the other link (page not found).
I was surprised that children from age 6 months are being vaccinated.
I have simplified it in my head to the vaccine for the 6 months to 64 will be
A (H1N1)
A (H3N2)
B (Phuket)
B (Brisbane)
and that for 65 and over it will be the same except for not including B (Brisbane) and that the three included will be stronger.
I do hope all is going well with you and that you have banished any dark thoughts along with the darkness of autumn and winter.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
I forgot to mention that I have just received a new email from Chris Woollams, dated September 24th and I was wondering whther you have received yours.
These are the headings in the email:
1. My 2018 speech – talking about your cancerous
2. New research shows gut bacteria links to immune system prove
3. Can't sleep? Read this
4. The weed that kills cancerous
5. Childhood cancer is on the increase
6. Another way to reduce blood pressure naturally
7. Heal you gut – heal your body
8. Cancer of the month – pancreatic cancer
There are the usual subheadings within these headings to click on. I have not read much in great detail, but hops to do some soon.
If any new people want to sign up you need to go to the Cancer Active website.
Mary, I have also just received the autumn edition of LymphLine magazine, which I have yet to read in detail. Included with the magazine was a lengthy questionnaire about patients and lymphoedema, which I faithfully completed and sent back.
I noticed when I did a bit of shopping in my local natural food store yesterday that the October edition of the magazine What Doctors Don't Tell You was on sale. I decided I would buy it later on as I am feeling a bit overwhelmed with reading at the moment.
Finally, I read an October 2012 blog by Binney4 entitled My Fat Arms. I thought it was most interesting, talented and had a sense of humour in it. I shall try to find the link again.
Love.
Sylvia xxxx
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Hello Mary,
The link to Binney's blog is
http://www.literarymama.com/columns/seniormama/archives/2012/10/my-fat-arms.html
Love.
Sylvia xxxx
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Hi Sylvia,
I hope you are doing well. I need to catch up on reading this thread and checking how everyone is doing.
September has been a rough month for me. I was hoping that, now that treatment is over, I would begin to rest and recuperate. At the beginning of the month I had my annual GYN appointment. I explained to her that I had a clearscreening mammogram on my non-cancer left breast in July, but was concerned about a lump I had been feeling for months. I had pointed this lump out to my oncologist during treatment, and he felt it was a Fibroadenoma. I also explained to my GYN about my dense breast tissue and having fibrocystic breasts. She is a new doctor for me and this was the first time visiting her. I asked her if she thought an MRI would work better for me because of my extremely dense breast tissue.
After a physical exam of my lumpy left breast, she ordered a diagnostic mammogram and ultrasound. Apparently she also called my breast surgeon to discuss an MRI, because he called me to set up an appointment with him so he could explain why he feels a diagnostic mammogram and ultrasound is better in my situation that an MRI.
After the appointment with the breast surgeon, I had the mammogram/ultrasound. Then the radiologist doctor came into the room saying she wanted to do a biopsy- birad 4. This caught me by surprise as I was just expecting a confirmation that the lump was a cyst or a Fibroadenoma. To hear “suspicion of malignancy” sent me into a tailspin. I mean, how could this be? I JUST finished six months of harsh chemo pumped into my body.
Meanwhile, in between these appointments, I fractured my little toe. (The day before my birthday-ugh!) The scary part is, because of neuropathy, I didn’t even feel it. I bumped my toe on something, looked down, and it was sticking straight out to the side. No pain. But I taped it to the toe next to it and drove to the hospital. X-rays showed a “bad break” and bone had to be reset. I will be in a walking boot for a month. But it was so disconcerting to not feel any pain due to neuropathy. I guess my days of going barefoot around the house, or wearing flip-flops, are over. That makes me sad.
It took a long time to get my pathology news back from the biopsy, but yesterday got the call that it is benign! Yay! They want a 6 month follow up. The nurse calling had no other information, so I will call next week requesting a written report with details of the ultrasound and biopsy findings.
I’m hoping October brings a calmer month. My family has had plans for months to go on a trip to Disneyland. I hope I am able to hobble around there and keep up. We are bringing our 20 month old granddaughter for the first time so I’m thinking it will be a slow, relaxing visit.
I’m sorry it has been so long since my last post and that THIS post is so long. I think of the women here often.
Monica
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Hello, Monica,
I'm so glad to hear that it was a false alarm. I can think of few things worse than getting through cancer treatment then being told that your other breast has succumbed too.
The toe thing sounds nasty but it must be so strange to do yourself that much damage and not feel it!
best wishes,
Susie
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Hello Monica,
Thank you for your post to me and for asking after me. All is well, thank you.
I have just read your post and I can see what a really rough month September has been for you, but I was so glad to read that all has ended well with good news about your left breast. You must have been so afraid with all that.
I know from my own hospital that when there is concern about anything, it is standard to do an ultrasound to check on things. I remember that during my check ups I had the check up with a new doctor. She thought that my left breast felt strange and because the breast was dense sent me off for a mammogram and an ultrasound. I remember the anxiety and then the relief when all is well.
The situation must have been worse for you coming so soon after treatment.
How awful for you to have fractured your little toe and just before your birthday. This numbness is an awful problem with peripheral neuropathy. I am so sorry that you will be wearing a walking boot for a month.
I do sincerely hope that October will be a better month for you and that you and your family will have an enjoyable time in Disneyland. Your granddaughter will probably take your mind off everything!
Take care of yourself and catch up on the posts as you can.
I love to read long detailed posts, as I think it helps to get to know a person better. You have no need to apologise and I hope writing it has helped you to get it all off your mind.
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
A patchwork Quilt is an excellent analogy. Unfortunately, in my case, I have been offered no information at all. My surgeon simply said there was insufficient research on metaplastic cancer. When I tried to explain that recent reasearch was available it was like hitting a brick wall.This won't be taken into account. I was told that in 6 months I would be offered an ultrasound scan and that was it and I could have a second opinion privately. I did get him to grant me a meeting with an oncologist, but was told that would take weeks. The multidisciplinary team had made their decision.
My hospital is on 'special measures' and is a failing hospital on the grounds of the quality of care.
So, I have a huge fight on my hands, which is something I really didn't expect or need.
In the meantime, it doesn't sound as though you're having an easy time of it either. Let's just hope that 2019 turns out to be a better year for all of us here.
Love,
Gill
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Hi Susie,
Hope your radiotherapy is underway and going well.
I've had to be very insistent about seeing an oncologist and was told that the team had made their decision. No further discussion allowed, or so it appears.
It's the wrong treatment for my cancer and to be denied chemotherapy is unheard of in the USA and Canada. This doesn't just impact on me, triple negatives with mastectomy and clear lymph nodes will also be denied chemotherapy. I remember Flora writing that her mum had been denied chemotherapy initially. Flora had to take her mum to Guys for a second opinion before chemotherapy was granted.
Sadly, not all hospitals put quality of patient care first. My hospital is a PFI, so paying off the loan for the building plus the truly horrific interest rate to the investors is a legal priority. The hospital owes many billions. Morality and decency plays no part in the PFI scheme.
Enjoy the rest of your weekend, hope the weather is as good as it is in Norfolk.
Love,
Gill X
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Hi Monica,
What a terrifying thing to happen. Thank heavens that it was a false alarm. Even so, the shock you felt initially must have rocked you to the core.
So sorry to hear about your toe. I hadn't realised how easy it would be to injure yourself without realising, once the feeling is lost. I guess the toes are especially vulnerable too. I wonder if a little sensation will be restored over time. Really hope so.
Gill
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Hello Sylvia,
Yes, the full meaning of 'postcode lottery' certainly hits home when it involves yourself. The simple fact is, that the hospital's PFI status is bleeding it dry. Funding is taken up in feeding the ever growing monster of a loan.Thus, the rich get richer - it was ever thus, but to steal a person's health is wicked. So many are suffering.
Agree wholeheartedly about the obesity problem and this is very relevant to oestrogen fed tumours. I'm always saddened and angered in equal measure, to see young people gorging on unhealthy, fat- laden food and sugary fizzy drinks.
Metaplastic is rarely included in data. The Institute of Cancer Research in London, estimates that it accounts for 0.2 - 5% of breast cancers. I think that it should be read as between 0.2% and 0.5% as globally it stands at 1%, with some countries having a higher percentage than others. African Americans are more at risk, for example.
The book you recommend seems to be a good souce of up to date information.
I'll certainly be getting a second opinion and the wheels are already in motion. I shouldn't have to though. Flora found herself having to do the same for her mum.
I do know my subtype - spindle cell with features of adenosquamous carcinoma.Piece of advice for everyone here. Ask for your histology report. There will be one after the core biopsy and angerednother following surgery. The data is yours and cannot be withheld - in the UK at least.
Chemotherapy is standard for metaplastic cancers elsewhere and despite the difficulty in getting a complete response, it is used to clear the bloodstream of any leftover cells and help prevent a recurrence, often very quick to happen in metaplastic cancers.
Sylvia, it seems to be that this thread is always very active. Full of support and good advice.I'm always learning something new.
Enjoy what's left of the weekend.
Love,
Gill X
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Hello again everyone,
Just remembered.something.
I was told that not offering me chemotherapy or a scan was in full accordance with National Guidelines. This is only partly true. NICE National Guidelines go on to state:
' When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients and service users.
The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient in consultation with the patient...'
Thought this might be useful to any of us being denied access to treatment, an Oncologist, or a part in the decision making process.
Love,
Gill X
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Hi Gill,
Thank you for your kind words. I am sorry you are having such a difficult time getting the treatment you need.
When I was first diagnosed with IDC ER/PR negative back in December it was determined by the tumor board at my hospital that the first course of action would be a lumpectomy to remove the 8mm tumor and to have a sentinel node biopsy done.
My surgery pathology listed 0/9 nodes positive and my tumor was triple negative. The report also said “IDC with metaplastic features”. I had no idea what that meant at the time but after some research, I agreed with my medical team to go forward with 6 months of strong Chemotherapy followed by 3 weeks of radiation therapy.
On follow up visits with the breast surgeon I asked specifically about the metaplastic features in my pathology. He said that, in my case, they were treating the IDC as it was the dominate dx. He said that, often, IDC might have some “lobular” features (for example) but is still treated medically as IDC. Or ILC might have some “ductal” features on pathology, but still treated as ILC.
It seems like the more advanced technology and pathology becomes, the more is being discovered about different types of breast cancer. But more discoveries often lead to more questions than answers it seems. If you were to ask my aunt about the kind of breast cancer she had over 30 years ago, she would tell you-she had a lump. They took it out. They gave her chemo. She worried for 5 years. Now at 85 years old, she doesn’t worry anymore. I’m not even sure her doctors and breast surgeon knew much more than that.
I hope you are able to get the Chemotherapy treatment you are asking for. And I hope you find an oncologist who is willing to fight for your right to appropriate treatment.
Xoxo
Monica
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Hi Monica,
That made for an interesting read. I wonder what having some metaplastic features means? I had thought it either was or wasn't metaplastic, it's obviously a lot more complex. Fortunately, your team offered you a strong chemotherapy anyway and treated your main cancer type. As mine is triple negative I'm asking for the same treatment, surgery, chemotherapy and radiotherapy. I guess that the money ran out at my heavily in debt hospital and after a mastectomy with clear nodes, the TN patients will no longer be offered further treatment or a meeting with an Oncologist.
The UK has begun to fall behind many other countries in research. This is heartbreaking, as we were so often at the forefront. My daughter's brother-in- law was a research scientist at Cambridge and moved to New York where research is properly funded.
I guess the more we know abour cancer sub-types, the more complex and expensive treatment will be.
Glad to hear that your aunt is well. Nothing complicated about breast cancer then. Surgery followed by chemotherapy does seem to be key, then and now. Hoping for the day when something is found to replace chemotherapy and it's sometimes appalling side-effects. It will happen.
Keep well.
Gill X
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Hello all,
As ever, thanks for all the clear and helpful advice- and for the sympathy regarding my mother's experiences.
Monica, glad you got the all-clear on your other breast.
Gill - I'm rather appalled to hear what you're having to fight for at your hospital, but, as you say, funding is a huge issue for the poor, over-stretched NHS and maybe it is the case that the smaller non-spread TN cancers in older women are getting shoved more and more into the "no further treatment" bracket. Despite the fact that the most experienced oncologists don't think that's generally in the patient's best interests.
My mother has had the most awful time on chemo BUT I am still pleased that we pushed to try it. 2 out of the 3 doctors we spoke to said she should absolutely try it and were perplexed by the initial suggestion - "over 70, no chemo". And I'm "pleased" that my mother has at least had two cycles' worth of benefit.
The latest on that:
Following another period of neutropenia and infection, and another 4 days in hospital, we had a really good consultation with Dr L on Friday. She said it would be dangerous to continue with the AC. Both cycles have been far too "eventful" for my poor mother, and the heart episode a really serious side-effect (again, we're hoping this may get better with time but haven't explored this further). For this reason, she's going to stop the AC and give my mother two weeks to get a little bit better, put on weight (she's lost half a stone) and get to a better place, physically and psychologically.
Then they will probably start on pacliotaxel, but will proceed very cautiously, and may well stop this early too.
She said it is not necessarily my mother's age that has led to all these problems, but just something about her physical make-up. She says she has had to have similar conversations with 40 and 50 year olds before.
Anyway, to us it seems like an eminently sensible decision. We are of course disappointed that she was not able to complete the suggested course of AC but completely agree that doing so in her case would be foolish.
Dr L also said that 2 "kosher" doses of AC would have already reduced the risk of the cancer coming back.
My mum is already feeling a little less bruised and battered, and is enjoying being back at home, pottering around and soaking up the Autumn sun.
Gill again - it sounds as though you are working on a second opinion , but, if you do need a recommendation, the consultant we saw at Guys is part of the London Institute of Cancer Research team. They are working exclusively on breast cancer and are particularly interested in Triple Negative in all its forms. I initially contacted Professor Andrew Tutt , who seems to be one of the UK experts, and he put me onto Dr Harries, who is the clinical "arm" of the team. He was brilliant.
Anyway, good luck with your searches. I personally feel better for having sought several opinions with my mother. And I think with a particularly rare sort of breast cancer, the case for doing so is even stronger. The more triple negative breast cancers a doctor has seen, they more of your type they will have seen- even if that's 10 rather than 1!
Anyway, hello to everyone else.
Sylvia, FYI my mother's allergies were not to the dexamethasone (that was one of the few things she wasn't allergic to, along with the chemo actually!) but to metaclopramide and ondansetron (sp?)
Next time I check in, I'll try to include a bit on the healthy-eating workshop. Suffice to say for now that the dietician particularly recommended purple fruits and veg for their anthocyanin content- including purple sweet potatoes and purple sprouting broccoli. And blackcurrants are apparently even higher in the antioxidant anthocyanin than blueberries!
Right, better go for now. So much to do before the children come back from school!
Flora x
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Hi all,
First session of radiotherapy this morning. Inevitably a long one as they checked all the figures from the CT scan and moved me about tiny bits. The arms were getting very numb again by the time the machine had done its brief work. I assumed that my appointments would all be at the same time, but no, a wide variety mostly clustered around the middle of the day. I got them to move one as I have a theatre ticket booked for that afternoon. Lunchtime appointment tomorrow, hopefully shorter.
I can't say that I envy the radiographers their job. At Hammersmith they are in a dingy basement and a lot of their work seems to be calling out numbers to each other and listening to me whingeing about my arms.
Susie
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