Calling all triple negative breast cancer patients in the UK
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hi everyone
Getting warmer here which helps my mood no end! Feeling ok but still have aches and pains which I’m putting down to arthritis post taxol and my hyper vigilance. Mammogram coming up on 21st September and I’m terrified! I have just started my second semester at uni which is very intense! It is a pharmacology unit which will allow me to prescribe medications as a nurse practitioner. I will upload a pick of the centre of Broken Hill from our new office block . The building is amazing with a view of the line of lode. It has been the richest silver deposit the world has ever had and still has a functioning mine today. Stay well everyone!
Much love
Kath
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Got the appointment for my CT scan today to plan my radiotherapy. Next Wednesday at 11am.
They called, at last, while I was having a lovely day out with my nephew, visiting the Model Village at Beaconsfield (the world's oldest (and best)) and having lunch by the Thames.
Back to Aquacise last night -- first time in months. Arms got tired quickly but I carried on. Has to be good for keeping the lymphatic system moving, doesn't it?
Susie
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The Model Village.
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Hello Sylvia,
Went in for the rest of my results today. I have a very rare spindle cell cancer. No DCIS or lymphovascular invasion, features are those of metoplastic carcinoma. Grade 2. I was relying on chemotherapy to zap this before surgery, but chemotherapy won't work in my case, so it's just surgery followed by radiotherapy. Don't know how I feel now. The surgery isn't scheduled until October 10th which seems a long way off. Wonder if I should pay for it myself before it spreads. I was hoping for better news.
Thank you for your support, it's really helped and yes, the very negative reporting of TN breast cancer makes me very angry too. It's so damaging to women who have already been hit very hard by a cancer diagnosis.
Keep up the (very) good work.
Gill
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Susie, I just had to message to say I love the model village at Beaconsfield! We go there quite a bit with the children, although the oldest is getting a bit too "cool" and teenagery about it now sadly!
Gill, welcome to the forum. I'm here as a supporter for my mother who has TNBC and is currently two weeks into chemo. Despite a scary few days at the beginning, when she had an allergic reaction to one of the anti-sickness meds, she hasn't found it too bad so far. I hope you can find out more about your rare type of cancer. I don't know anything about spindle cell or metaplastic cancers, but I presume that Grade 2 is better than Grade 3, which most Triple Negative cancers are?
Anyway, sorry you have been diagnosed but glad you have found some support here.
Ellen, when does your mother start chemo? If that's still the decision?
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Hi Flora,
My nephew's 42; he loved the model village.
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Hello Susie,
To put in you details, you have to go to the top of the page and click on My Profile, go to My Treatments and fill in the information. When you close this your details should then appear under your posts each time. Try it out.
Best wishes.
Sylvia xxxx
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Hello Kath,
Thank you for your post. Let us know how you get on when you have your mammogram on September 21st. While waiting try to switch off and not worry.
I was interested to know that you are back at university and doing a pharmacological cause in order to become a nurse practitioner and be able to prescribe medication. We have these here now but I am not sure what they are allowed to do.
Thank you for your most interesting photograph of the line of lode.
Take care.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your latest post letting us know about your CT scan to plan your radiotherapy next Wednesday at 11 am. Let us know how you get on.
Fond thoughts.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. Try not to worry about the rest of your results and just concentrate on getting your treatment.
I have heard of metaplastic carcinoma and that it is a rare cancer. We once had someone with this kind of cancer posting on here, named Dulcie but she stopped posting as people often do, so I do not know what happened to her.
Concentrate on the fact that the tumour is grade 2 and not the usual grade 3 for triple negative breast cancer.
Did you ask your oncologist what spindle cell cancer means? I think she should have explained that to you.
Do not worry too much about not having chemotherapy, which is very toxic and certainly undermines the body and results in long term side effects. If with surgery and radiotherapy you can be brought into no evidence of disease (NED), that will be all for the better.
I am sure that you must be feeling very confused at the moment but I think you will start to feel better when the treatment starts.
I agree with you that October 10th is a long time to wait. That is about five weeks and that is a long time to be feeling anxious and concerned. If that were me I would be asking for the surgery to be brought forward and I am saying that as someone who delayed my own treatment for many months, but I would not advise anyone to do the same. The NHS seems to be overwhelmed and there seems to be a lot of waiting, so if you can afford it and it would give you peace of mind, it is an option.
You might be interested in signing up for the newsletter from Chris Woollams of Cancer Active. I have been receiving his emails for a long time. His latest ones are August 24th and September 4th. He has lots of information and numbers the topics in his email and you can click on these to get further details. There is one article in the September one that might be of interest to you. It is number 5. the link is:
I am going to be reading the link as well, as I have not yet read it but the heading on the email is "Most women diagnosed with breast cancer do not need the chemo".
Try to concentrate on the positive parts of the diagnosis and on the fact that there is treatment.
Take great care of yourself and make sure you get plenty of support and make sure you get an explanation of what spindle cell cancer means. Concentrate on the fact that it looks as though it has not gone to the lymph nodes.
Keep in close touch.
Love.
Sylvia xxxx
It would help if you could put your details under your post. Have a look at my post to Susie with details on how to do this.
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Hello Mary (travelling in Alaska),
I just wanted to wish you a happy birthday for yesterday September 5th. I do hope your holiday is going well.
Love.
Sylvia xxxx
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Morning Susie,
Tried to respond to your latest news earlier, but text would suddenly disappear, I know not where.
Sorry your day out was interrupted, but guess you'll be pleased to get the radiotherapy sorted, so good luck.
Never been to the Model Village, sounds fun, but not as much fun as lunch by the Thames on a sunny day perhaps. Glass of wine allowed now?
Gill X
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Any spindle cell BC patients anywhere? If so, please send me any good news, new treatments, types of chemotherapy that might work on the nasty little beast?
Love to all on the site,
Gill X
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Sorry to hear about your Mum's bad reaction.Hope she has fully recovered and feels confident as she continues with her chemo.
Don't know much about spindle cell, the little research I've read is not at all encouraging. Problem is that spindle cell is so rare, it doesn't attract much funding for research.
Gill X
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Thanks for getting back. I have a surgeon at the Norfolk and Norwich University Hospital who seemed quite positive when he gave me the bad news yesterday. We asked if the cancer could spread before surgery and he said it wae highly unlikely. Not the same as an unequivocal 'no' is it? I asked for an earlier time and was told that his operating list was full. I wonder how much quicker private surgery would be? Offered a wide excision, though could have gone for a mastectomy. Surgeon said there was no difference in regard to risk of cancer returning.
Haven't been offered an Oncologist. I thought this came after surgery? Really, I'm so ignorant, which is quite shocking as I've worked on the wards of our local hospice for over 20 years. All end of life patients nowdays, so I probably won't be going back.
I too have read about chemotherapy no longer being thought essential for the treatment of breast cancer. Interesting.
Any information from anyone out there gratefully received. Anyone recently had wide excision as a private patient? Or mastectomy v wide excision for tripple negative?
Gill X
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Hello, Gill
I was referred by the surgeon to an oncologist after my operation and saw her a couple of weeks later. This is just a sort of process they have. The oncologist then writes to the surgeon thanking him/her for the referral. Funny little ways they have.
I had a lumpectomy -- quite a large one -- and was told that it would be just as effective as a mastectomy. That said, I met women during my four months of chemo who had had a mastectomy, so I don't know who makes the final decision and whether some surgeons still prefer a mastectomy. I have large breasts and my wound took a while to heal as it was in the underside fold of the breast but I'm quite glad I didn't have a mastectomy.
Susie
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Hello Susie,
Yes, I thought that the Oncologist came along after the surgery was completed. However, as my cancer is so rare, I think I'll probably pay privately so I can get a fuller picture, as Sylvia says, it's important to gather as much information as possible. As if being triple negative isn't bad enough, spindle cell is dire. Shouldn't have googled. Why is so much information on the more complex and unusual cancers so depressing ? It's as though scientists and medics seek out only the bad news. Some sites are plain irresponsible.
Still undecided about mastectomy v wide excision. The choice is entirely my own and my surgeon says that I can phone him the day before surgery to change my mind if I like.The thing is, spindle cell cancer doesn't respond well to chemotherapy, sometimes radiotherapy doesn't work well either. Any advice or thoughts? You seem pleased with your choice. But it's a bit disconcerting to find that other women had surgeons who went for mastectomy over lumpectomy. Recent thinking is that the results are the same. Seems to be the more modern approach with older surgeons unwilling to move with the times.
Also wonder what you or anyone reading this thinks about implants v reconstruction ?
Envy you seeing the light at the end of the tunnel now. It probably seemed an impossibly difficult way forward just a few months ago. Your experience and those of others on the site have really helped me.
Love,
Gill X
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Hello Gill,
It is rotten luck to have such a rare cancer so you have few people to offer their own experiences. But, you know, a couple of days ago you were having trouble getting out of bed and now you are ready to start taking decisions about your treatment. So, progress!
I read in The Times just this week that cancer researchers had been telling surgeons for years that lumpectomy was as good as mastectomy, only for the surgeons to ignore them. They do finally seem to be coming round to it but I take your point about how you might think a mastectomy safer if you're not having chemo.
Can't comment on reconstruction as I still have a breast, although smaller than the healthy one. I've been told I can have the healthy one reduced to match when I'm ready.
Take care.
Love
Susie
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Good morning Susie,
Still do have trouble getting out of bed, but no longer hiding from the truth. Doing some useful research instead. Really need to understand what's happening. Through this site I've met an inspirational survivor from Canada. She's really taken control of her life and her treatment. Her experience is helping to inform my next step, questions I should be asking the medics and so on. Felt a bit isolated before this.
Still sticking with the TN site as I'm TN, but with a more challenging journey ahead.
Fingers crossed that your radiotherapy gets underway very soon. I was going to add, 'and then you can put all this behind you', but I doubt any of us here will quite do that. Everyday living will certainly take on a rosier glow though.
Curious to visit the model village now, sounds like my husband's thing and he could do with cheering up too.
Anyone here seek a second opinion? I like and trust my surgeon, but just want a slightly different perspective and to go over the pathology report more closely. Is this move likely to cause problems in the doctor/patient relationship?
Hope it's sunny where you are.
Gill X
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Hello Gill,
I have been reading your latest posts and had a few things to add.
I think it is probable that the different hospitals may have slightly different ways of working. I had all my treatment at the RD&E Hospital in Exeter and the different doctors involved in my treatment worked as a team. I was told that the breast cancer consultant, the oncologist, breast cancer care nurse and the pathologist had meetings together in which patients' cases were discussed and decisions made. It makes sense that the patient sees the breast cancer consultant first. This is what happened to me and she did an examination of my breast and a fine needle aspiration. She told me that just by the breast it looked like breast cancer, but that she had to prove it. The fine needle aspiration would look at the cells from the tumour. From there she arranged another appointment at her clinic, during which I had a mammogram, an ultrasound and a biopsy. Later the same day I saw the breast cancer consultant again and she told me I had breast cancer. She told me about the possible options and I had to see her again in two weeks. It was then that I was told it was non hormonal and that, because of this, the prognosis was not good because they could not give me tamoxifen or other such drugs. At that time non hormonal was not mentioned as triple negative. I then did a lot of research and I actually asked about triple negative.
At that appointment I was told about surgery, chemotherapy and radiotherapy. I decided to delay everything, but that is another story.
When I felt ready I went back to see the breast cancer consultant and told her that I was ready to go ahead. It was at this point that I saw the oncologist. She told me that it would be best to have six months of chemotherapy before surgery to try to shrink the tumour a bit to make surgery easier. She further said that after that I would need a mastectomy. I was fine with that because I would have asked for a mastectomy anyway.
Of the people around me here most have had hormonal breast cancer and had lumpectomies. Those people have told me that the procedure was to have a lumpectomy, check there were good margins and if not they would a second lumpectomy and, if there were still doubts about the margin, they would do a mastectomy. One of these women decided to have a mastectomy for her own peace of mind and in fact that woman just had surgery and nothing else, so she found her cancer journey quite easy.
With triple negative it may be different and a mastectomy may be advised, but remember that different hospitals and different consultants may have different ways of working.
It is up to you to decide whether you want a lumpectomy or a mastectomy, because you have to be comfortable with your treatment. If you cannot decide, it seems to me that you can get a second opinion. It cannot do any harm.
My breast cancer consultant told me that a mastectomy was not considered major surgery and that it would take about 45 minutes to perform. She said that major surgery would be something like a hip operation.
With reference to reconstruction, which I was not offered, but I had already said that it was not something that I would want, because, if done at the same time as the surgery, it made it a lot longer and more complicated. Reconstruction can be done after all this, of course, but again it is not something I would have wanted, but that was my own personal choice.
As I have said before, it is not good to go looking on the internet. If that were me and needed help making a decision, I think I would opt for a second opinion about the whole situation with this metaplastic breast cancer and spindle cell. I was wondering whether you could try getting in touch with someone at the Royal Marsden Hospital, as they are supposed to be the best cancer hospital in the country.
There is also a well-known cancer consultant called Karol Sikora. I am not sure where he is working now but he has been at the Marsden. I emailed him once about the connection between an over-active parathyroid gland and getting breast cancer. I had a very friendly response to my email.
Remember that on the thread we are not doctors and that we are not supposed to give advice. We can support you and relate our own experiences and give tips on how we dealt with different aspects of our cancer journey. We can possibly say what we think we might do ourselves in certain situations. We have to remember that we are all different, our cases are different and we react differently.
I found that being positive helped me a lot. Talk to your medical team and be guided by what they say when making a decision. Once you have decided about the surgery you will probably feel relieved.
I do wish you all the very best and I will try to help you all I can. Remember to make use of your cancer care nurse. You should have been given one as a first point of contact for help if needed.
Sending you fond thoughts.
Sylvia xxxx
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Hello everyone,
It is the end of the week and I have just been looking through the last few pages of the thread and noticed we have not heard from some of you for quite some time.
I just wanted to say hello to Mary, Val and Monica in the US and say I hope all is well.
I have been wondering about 53Nancy in Canada as well as adagio.
To Moth in Canada how is the radiotherapy going?
To Helenlouise (Helen) in Australia, have you recovered from your surgery and are you onto the next part of your journey?
The thread has been very busy with SusieW5 and Rosiecat (Gill) and I, as we try to help Gill who is going through a very difficult time after a diagnosis of TNBC and a rare type of breast cancer, metaplastic, with spindle cell type. If there is anyone viewing with this same diagnosis, it would be very helpful to hear from you.
To Cocooncat in Australia, how are things going?
Hello to Kath in Australia. What is happening with the flu vaccines this year?
Hello Ellewebs (Ellen) and Flora, how are your mums doing?
DLJ46 in the US, how are you doing?
We are being told it is end of summer here but it is still mild and the rain will just not pour over Exmouth!
Best wishes to everyone.
Sylvia xxxx
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Hello Gill,
I know that you have been looking on the internet for information about your TNBC and the rare metaplastic breast cancer. Because of this I decided to have a look on the internet to see if I could find anything useful. I read one article that I thought might be useful to you. The link is:
https://www.hindawi.com/journals/isrn/2012/706162/
I found this article orderly and quite easy to understand. Try to have a look at it and let me know what you think.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Thanks for the report. Much of the information about radiotherapy prior to surgery is now outdated.Radiotherapy doesn't work well in many cases and getting on with cutting the tumour out is now standard treatment. In much of the UK. Radiotherapy is offered post operatively - but not always.
The Norfolk and Norwich University Hospital have a full multidisciplinary team working on my case and I've just asked a breast surgeon working privately and within the NHS, for a second opinion..My BC nurse telephoned earlier and she told me that many women do this, just because getting a diagnosis s such a shock in those early days and absorbing information can be difficult.
Just hope I can do this.
Love,
Gill X
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Ellen got a second opinion for her mother, as I recall.
Gill, glad you've been allocated a Breast Nurse. I don't think any other type of cancer has this sort of specialism. I use my BC as a first contact for getting info to the consultant or, earlier, the surgeon.
Susie
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Hello Gill,
I did say that the report I read was 2012 and I really have not heard of having radiotherapy before other treatment. For a very long time standard procedure is surgery, chemotherapy and ending with radiotherapy. If the tumour is large, then neoadjuvant chemotherapy is suggested to shrink the tumour to make surgery easier. After surgery, radiotherapy is used, in the words of my oncologist, to mop up any stray cancer cells.
From what I have been reading lately, metaplastic breast cancer is very complicated and has lots of mutation hot-spots. This kind of cancer represents less than 1% of cancer patients and so research on it is sparse.
I do hope you manage to sort something out with your own medical team and with a second opinion, if necessary.
There is a more recent paper on the internet, dated 2016 entitled Prognostic factors in the myoepithelial-like spindle cell type of metaplastic breast cancer. It is 26 pages long and quite difficult to read. The very short bit I read carefully was giving percentages of various aspects of this subset of MBC.
As I have said to many patients, reading too much on the internet leads to a lot of confusion and anxiety. It is always best to work with your medical team.
I cannot see anything wrong with getting a second opinion if that is what the patient wants and will give some peace of mind. There is a saying that two heads are better than one.
I do hope everything will work out for you.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia, thank you for thinking of me!
Gill - welcome. Sorry you find yourself here but we're all here for you to cheer you on and bring you virtual tea & cookies in bed on the days you're hiding under your quilt! Fwiw, since you appear to have a very rare form of cancer, I definitely think a second opinion is warranted; and also perhaps seeking out the oncologist now, before surgery, so you can get a bit picture of what the whole treatment plan looks like.
I'm doing really well. I have 3 more radiation boosts and then I'll be done. Radiation has really been easy for me so far. The skin irritation is there but it's not impeding me in any way, and I'm not experiencing any fatigue. I wear a fitbit so I know my activity levels and I've been increasing my steps and cardio levels every week since chemo ended and radiation has not slowed that down at all. I know not everyone finds rads easy but honestly for me, they've been a breeze.
I just finished the first week of school and I've been so excited to be there! The program is great and I've met some nice people already. It's a cohort program - we'll all be going through it together for 36 months so it's important that we all get along and hopefully form fond friendships. I wore my new wig all week & by the end I was kind of sick of it because it itches! But I like how it looks so vanity is prevailing so far LOL (if you're curious, I posted a pic of me in my wig on the Feb2018 chemo thread; it's at the bottom of the page. Not sure how long I'll leave it up but it's there now
https://community.breastcancer.org/forum/69/topics...Alas, my time to visit this board & my other social media sites will be severely curtailed from now on. I'm going to have to be really disciplined and limit myself to brief visits since on top of all the school work, I do still also have my family and my dogs and exercise and my creative work and self-care and sleep (!!!) to fit in. I will check in as much as I can!
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Hi Sylvia and company,
I have just finished week 2 of radiation with 4 to go. Plus I am in my second week of Xeloda and looking at 6 months if I can tolerate it! I am disappointed to be doing more chemotherapy but my oncologist advised the latest research shows up to a 10% increase in 5 year survival rate for TNBC patients who did not achieve a full pathological response to Neo adjuvant chemotherapy.
So far the peripheral neuropathy in both my hands and feet seems to have worsened with some swelling. My chest is still producing fluid and had my fourth aspiration on Thursday. Thankfully the amount of fluid has dramatically decreased so that maybe the last time I have to have it done. Unpleasant procedure. I still have AA size mounds both sides! Ironic for a BMX warrior. The underarm stickiness seems to have passed. My chest is still sore (that sunburn feeling) but I think the worst side effect I have at the moment is the cording from the level 2 lymph node dissection. Physio and exercise hasn't resolved or improved it yet. Luckily it's only painful only when I attempt to move into certain positions, straighten my arm or weight bear.
I apologise for this not so happy post and I must say I am tiring of treatment. Last time radiation was relatively easy and I hoped this time it would be the same but the process is more involved, takes longer and hurts (holding my arms up). So bring on 05/10 when rads will be done. Stave off any further sides effects from Xeloda and fingers crossed I can further embrace Spring! The weather here is just beautiful for the next month or so.
Wishing you all the best. Xxx0 -
Hello Sylvia,
Almost everything written about metaplastic carcinoma is grim. But as it's so rare, most of the information is very dated. Unusual cancers attract less funding for research and many statistics go for averages, which is very unhelpful. Once patients are over the first 4 - 5 years, this cancer often gives up. It isn't the smartest of cancers and doesn't seem to be able to keep up the momentum. This doesn't really help me at the moment though!
I absolutely agree that two heads are better than one. This is a serious fight, after all, so any extra input from a medic with experience in this very specialised field is welcome.
Googling metaplastic carcinoma was a mistake on my part. It was depressing and unhelpful. Also, since very little is known, some infomation is just speculative. For example, there are even rarer categaries within this already rare cancer, with my squamous and spindle cell being more common and with better outcomes. With this in mind, I've gone from hiding under the duvet to really believing that full recovery is actually achievable.
Chemotherapy is not an option in my case. But you mentioned earlier, chemotherapy isn't always necessary to achieving good results.
As I said just a few days ago, thank heavens for this site. I tried a few others, but this is definitely the most helpful.
Love,
Gill X
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Hi Moth,
Glad to hear that you've been okay with the radiotherapy. I have my CT scan next week to plan mine so should be starting it by the end of the month. Hope I'm as lucky as you! Mind you, my wig doesn't itch, so there's that.
Good luck with your studies.
Susie
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