The one thing I have learned though the last 6 months is that apocrine subtype TNBC is rare and because of that not much is known about the best treatment regimes. I learned from The Royal Marsden specialist that the main criteria she uses for decisions on treatment are the size of the tumour, whether or not it has spread beyond the breast (ie to lymph nodes), and whether the biopsy results show a clear margin around the area of the tumour removal - if wide local excision. However, the specialist at my local NHS Beacon Centre, never having encountered Apocrine subtype in her 20 years of practice, initially thought it should be treated like the more virulent TNBC with chemotherapy as well as radiotherapy. Clearly, you have to inform yourself as much as possible - online research is there but limited - ask questions and not be afraid to challenge. Ultimately though the decision is yours on what you feel is the right treatment regime for you based on all this.
I also have a strong positive attitude and belief in that as an important part of healing yourself. Miracles can and do happen! Take care and good luck.
Hi
I have just had the shock of learning I have this apocrine type of cancer. I had been told I had triple negative cancer and expected to have chemotherapy and then radiotherapy but am now told there is no good evidence that chemotherapy has any benefit. I do feel rather vulnerable that there is no drug to mop up any stray cells which may have escaped. Although my research show that this type of cancer only accounts up to 4% of breast cancers, that is still a lot of women. Is there any ongoing research into the best treatment regime and any research into drugs which may be effective? I would be pleased to hear what the current situation is.
I’m sorry to hear of your diagnosis. If you have read the various messages on here that I have written, you will know that it seems to depend on the grade and stage of the cancer and if it has spread beyond the breast to the lymphatic system.
My private consultation with the Royal Marsden advised definitively against chemo as the tumour was small (7mm with 17mm precancerous cells) and had not spread to the lymph nodes. I was advised to have radiotherapy though to mop up any microscopic cells that could not be detected from screening. I had five standard radiotherapy sessions to the whole breast and five boost sessions to the tumour bed area. This was done as a preventative treatment as the tumour, precancerous cells and clear margin had been surgically removed. Had any of these markers been worse I would definitely have had to have chemo.
I was also told that if you had to have a TNBC, the best one to have was the apocrine subtype! It is slow growing and not as virulent as the main TNBC.
Finally, I have read as much of the research available on apocrine subtype and the evidence (though from limited numbers as it is so rare) across many countries shows the outcomes at 5 years are pretty much the same whether or not you have chemo. Personally I was relieved.
Hi catyj
First off, so sorry you find yourself in this situation.
Peony has posted lots of helpful info on this.
The thing I’m unsure of is whether tnbc apocrine is different to tnbc with apocrine features. Mine is the latter and my team here and a second opinion in London both suggested chemo, though my cancer was already in a lymph node. Mine was grade 2. I had chemo after my mastectomy and snb and personally, I’m glad i did it. The local team here didn’t discuss apocrine features at all.
Wishing you lots of love and luck deciding what to do, please keep us posted.
xxxx
Thanks for both your replies. My tumor was 15mm and grade 2 with no lymph nodes involved. I’ve had a wide local excision and snb too. I have been told I will need 15 RT sessions which seems a lot to me, but heyho! It does seem to be that chemo with the usual drugs has no proven benefit so I won’t choose that option. However I would be interested in taking part in any research and/or drug trials. Do you know how I can find out about this? Can’t see anything on Cancer Research UK.
Thank you and good luck to all TNAC women!
I absolutely agree with the comments made previously by daffodil and that the treatment plan you choose must be your decision. It’s your body and your life and everyone - once given all relevant information - deserves the right to choose how they proceed. There are no guarantees with any option to be honest but you have to weigh the odds - the potential benefits and the potential harms.
Good luck with your RT. It was far better than I anticipated and the side effects very minimal (so far anyway) and that’s a month on from having 10 sessions.
Hi All
Thanks for all info. I also have the decision about whether to take bisphosphonates as this has been recommended. I have read the posts on this and it does seem scary! There does not seem much out there about taking it to prevent secondaries as opposed to treating secondaries. Is it licensed for this? Also there are ‘hints’ in some papers that it can/may prevent secondaries to places other than the bones. Any thoughts on this? I notice that the Royal Marsden advises against it.
Good luck everyone!
To be honest I made a decision early on not to have bisphosphonates once I knew that the cancer had not spread from then breast tissue. However, having this confirmed by the Royal Marsden and then the further info from my acupuncturist about how bisphosphonates are made (by product of bleach production) I stopped researching. I do know about the potential for jaw damage and bone breaks and that put me off from the start.
Having said all of the above, everyone is different and I’m sure there will be others that say something different. Sadly this means you have to keep asking questions and researching from different sources and then make an informed decision. I wish you well with that and send you hugs x
Hi Catyj! There is no real debate anymore whether bisphosphonates reduce the risk for metastases to the bone. They most definitely do - Bisphosphonates and breast cancer – From cautious palliation to saving lives - ScienceDirect. However like any other medication they can have side effects and one must decide whether the risks are higher than the rewards. For me, I decided the rewards were potentially greater so I went on them last December. I had my first infusion out of four when my ALP number started rising and considering I had osteopenia in my first dexa scan we decided that wasn’t a good thing for me. Anyway I just had my blood work redone last week and after only one infusion my ALP numbers fell 35 points so we now know my bone loss is stabilizing. So considering that along with the protection from secondaries, I am fine completing my further infusions. My side effects were minimal and only lasted the first few days. Considering your first round is supposed to be the worst I am hoping for no symptoms next time. Just had my teeth looked at this week, too, and no problems there.
Hi I have just joined the forum as I haven’t been able to find any answers to my Qs. I was diagnosed with Apocrine TNBC in December 2023. I had to go private ( long story) and my surgeon removed my breast ( mastectomy rather than lumpectomy at my request). My lymph nodes clear and my tumour was 1.9cm. I was told I did not need chemo. I have only had physio for the healing which has been fine. I have concerns maybe Chemo should have been an option but I was told from the MDT no chemo required for my apocrine BC even though it was TN. I didn’t get to talk to an oncologist. I’d like to reach out as it is so difficult to find info on Apocrine and I’ve not come across anyone else who has had it. I am 51 so maybe a similar age to yourself? Any info you find out would be great to hear from you and likewise if I do I will share with you too. I feel quite alone although I feel somewhat fortunate but lacking in confidence as no knowledge. Did you not have chemo in the end after all?? Your daughters wedding must be very soon so hope you are well and looking forward to it.
I feel for you as I was in a similar position last October when I was diagnosed with TNBC. It was only after my wide local excision surgery and sentinel node biopsy that I was advised it was Apocrine. Initially I was told I needed adjuvant chemo, then radiotherapy, then bisphosphonates. However, the oncology team admitted that as apocrine TNBC subtype is very rare (and my NHS consultant had not encountered it in her 20 years in oncology) and little is known if chemo is helpful if the tumour is small and/or hasn’t spread outside the breast.
I, therefore, did my own research online and found some research from USA/China and other in Europe. Both these research projects were based on a limited number of cases (eg USA/China around 40 cases over 10-12 years) as it’s so rare. However, it showed the outcome over 5 years roughly the same with or without chemo. My oncologist then offered to do two more tests on the tumour for K-67 and androgen response. My results were such that the risks of spread would be low and it was my decision if I wanted chemo or not. So I decided to get a second opinion privately at The Royal Marsden. The response was unequivocal given the small tumour 7mm (+17mm precancerous cells) and that it hadn’t spread - no chemo, no bisphosphonates (as no osteoporosis), but that I should have radiotherapy.
I completed my radiotherapy in early March (5 rounds each of whole breast and boost to the tumour bed area). I felt well during and after this treatment. A little local discomfort but otherwise all good, helped by loads of moisturiser!!
I have my review meeting with my NHS oncologist on Monday 29/4/23 and hopefully thereafter it’s annual mammograms for five years starting in October. The rest is down to fate, and God willing I’m all good. Btw I’m 68.
My daughter’s wedding is in June and I’m hoping the years ahead bring good health, joy and happiness to us all! Meantime, I wish you well and hope some of the above is helpful but please come back to me if you have any other questions if you think I can be of any help. Xx
Hello thanks so much for your response. I don’t have as much info as yourself and I haven’t seen an oncologist to ask these questions. A trip to my GP tomorrow to see if I can see an oncologist I think is best. Thanks so much as it’s so helpful to know I’m not alone. I too tried to find research online and found info on chemo not necessarily making a difference over time on case studies. I think like you it’s good to hear that specifically for yourself and to have some confidence moving forward. Thanks so much again it’s help so much and also the invite to ask you any Qs. It’s so good to share and not feel alone.
Sorry I forgot to ask and I hope you don’t mind me asking…… did you have a lumpectomy or mastectomy? I assumed from your tumour size it would have likely been lumpectomy. I chose a mastectomy as my tumour was hard to detect and I have very dense breast tissue and my tumour was 1.9cm. I was told by my surgeon I didn’t need radiotherapy as I’d had a mastectomy and margins clear and nothing in my nodes. Wondering if you had radiotherapy due to having a lumpectomy or partial breast tissue removal. Thanks so much again for kindly responding it’s really helping me feel less alone.
Of course I don’t mind you asking. I had what is called a wide local excision - it’s the same thing as a lumpectomy! It was never suggested I needed a mastectomy as the size of the tumour was below 2.0cm. Like you my tumour was deeply embedded in the breast and was undetectable from external feel - either by me or a doctor. I too have been told in the past that I have dense breast tissue.
I had to question and challenge everything as they were unsure what treatment plan to follow for Apocrine TNBC and admitted they would follow the path for the more aggressive TNBC in the absence of anything more clear due to its rarity. Hence the follow up Ki-67 and androgen tests and my second opinion at the Royal Marsden. I was lined up for everything. Chemo, RT and then bisphosphonate treatment. The Royal Marsden said I didn’t need chemo or bisphosphonate as the potential harm outweighed the potential benefit - due to small tumour size, good dexa scan about 18 months ago and clear sentinel node biopsy. I was, however, advised to have RT, including boost sessions to make sure any microscopic cancer cells were not left behind (even though clear margins) post surgery.
I hope that helps and please ask away if there’s anything else. Xx
Hi. That all makes perfect sense. My surgeon a Professor gave me much confidence it would just be good to speak to an oncologist as I haven’t been given as much info re some of the things you have mentioned. I chose mastectomy for many reasons and was told this is why I didn’t need RT as no tissue left for any cells - guess that makes sense. It’s so good to share and it has helped me so much chatting to you on here. I’m so grateful. I’m still so fearful but also feel grateful I don’t have an aggressive TNBC as I initially thought before full
pathology results . I’m not sure if these messages are published or if they are private. I may contact Royal Marsden like you, if I can’t see an oncologist relatively quickly on nhs. Although I’m not wealthy it feels like money well spent for advice and just to have more conclusive answers. Thanks so so much. You’ve massively helped me. If this is private and you don’t mind answering it would be good to know who you saw at the RM and also approx costs. I assume they had access to your full pathology report. I totally understand if you don’t wish to give this info and I’m so grateful for your chat and help this far. You meet the kindest of people on this journey x
I saw Dr Alicia Okines (recommended to me by a friend of a relative who is an oncology professor in urinary cancers). If you call the Royal Marsden and ask to speak to Dr Okines Secretary she will sort you out. I initially was going to use private medical insurance as I have been paying for years but as the excess was £500 I was advised to just pay privately and not risk putting up my premiums so much. I’m not wealthy either but felt it was money well spent. The fee I was charged was £200 for the consultation (online) and would have been double had I gone via insurance!
I asked my NHS consultant to send through all my details, pathology, scans etc and this was done, helpfully. The Royal Marsden consultant also advised me to have genetic testing as I have a daughter and granddaughter and was referred to Dr Zoe Kemp for this. Same consultancy fee but the test (against a panel of 11 different breast cancer predispositions) was £400. They offered a broad spectrum cancer genetic test but as there is so little cancer in my family thankfully I felt the breast cancer one was most relevant. All were negative - phew!
I hope this helps and please ask again if you have anything else you need to know.
Thank you so much that’s all so helpful. You have been so kind. I too had a genetic test I paid for and it came back negative. I will contact the oncologists secretary like you said. Sounds very reassuring and like the best option for me. Huge thanks x
Hi Karyno, sorry to hear you find yourself here too. I’m interested to know where you’re being treated, I was treated at Southampton. Re biphosphonates, I’m taking them …
I’d be very interested to hear what progress you make.
One question I haven’t had answered yet is whether having apocrine features is the same as having an apocrine tumour…
Hello again all, just to echo I also have dense breasts, and my cancer also did not show on a mammogram, the GP felt a lump but the surgeon could only feel a thickening of tissue…I’m hoping to have ultrasound or mri for follow up of other breast too xx
Hi there, I hope this message gets to you as I’m still fathoming out the forum and he to access etc. I’m very new to TNBC Apocrine so I don’t have answers to much but am learning along the way from those who have maybe been diagnosed longer ago than me or have been told more by their oncologists. I was seen in Oxford and a fantastic surgeon. Mines a bit complicated as I was diagnosed abroad very abruptly and without any support so I came back to the uk. Thanks for reaching out as sharing information on our progress is so helpful and helps to know what questions to ask.
I don’t know anything about biphosphonates it’s the first I’ve heard of them here on this thread/ forum! Everyone’s diagnosis is so different I guess. I’m going to speak to an oncologist as I hadn’t been referred so it is just for some conclusion really - I hope. Sorry I can’t help anymore than that at the mo but if I’m doubt I’d always say no harm in asking for another opinion if you are concerned. So good to have this on here to share info etc. I just need to make sure I can find the thread and follow comments etc.
it’s help so much and also the invite to ask you any Qs. It’s so good to share and not feel alone.