The problem is that there is not a ton of research on the Apocrinal subtype so oncologists play it safe and just treat it like the normally aggressive TNBC. I will say the few scientific studies on it though suggest that chemo is not needed and doesn’t make a difference. Considering that chemo targets fast growing cells and apocrinal is not, it would make sense. But there’s a risk with skipping it although in all fairness there’s a risk with taking it. Once you go through a certain type of chemo you build up some kind of tolerance towards it. It’s best to use treatments when they’re warranted. I would see if there is someone around with more experience dealing with your tumor type and talk with them. Maybe even see if there is someone abroad. Or at least tell your oncologists to check around. Personally I’m not opposed to overkill myself but only when it definitely shows there might be benefit. The little bit I read on your tumor puts that in doubt.
Many thanks.
I have asked for a call with the oncologist and maybe a second opinion to see if either reduced cycles or something can be considered.
I’m getting a second opinion from a specialist at The Royal Marsden. I have paid into private health insurance for years and think this might be a good time to use it! I’m still booked for chemo on 9/1/24 but that is subject to my NHS consultant’s feedback on tests for Ki-67 and androgen, and to what the Royal Marsden have to say next week.
As you say my inclination is to have the chemo but not to put my body through it if it isn’t going to be beneficial.
Thank you for your thoughts and suggestions. X
Of course!! Good luck, Peony, but I’m so glad you’re going to see a specialist.
Thanks for that. I have a second opinion coming up next week and another consultation with my NHS consultant to discuss results of Ki-67 and Androgen tests. My concern isn’t about having chemo per se (although it’s not what most would choose!) it’s more about whether it will be effective for the rare Triple Negative Apocrine cancer I had and research suggests it may not be - or at least the outcome may be the same whether or not I have chemo. All very confusing. In the end I will gather whatever info I can and then decide. X
Hi I had a rare breast cancer as well .It was adenosquamous carcinoma and was very difficult to diagnose and took 3 months to finally find out the diagnosis
I had the lump removed and two nodes removed as well .
It was found to be triple negative and protein based .
I was finally informed that due to the the size 7 mm it was grade one and indolent .Unlike other triple negative types I didn’t need chemo and possibly not radio .I’m not sure what the difference is between yours and mine but it sounds very much the same so I don’t understand why they have told you to have chemo .I wish you well and hope it is sorted for you
Hi
Thank you for getting in touch and sharing your experience. It would seem that whatever the type of breast cancer the challenges are very similar for us all!
Today, I had a private video consultation with a specialist at The Royal Marsden. She was unequivocal that I should not have chemo or bisphosphonates (for osteoporosis and to prevent bone cancer) as the tumour was so small, low grade and had not spread to the lymph nodes. However, I will be having radiotherapy and annual mammograms (for the next five years at least).
It was reassuring to have someone give such unambiguous advice and I am happy with the outcome.
Good luck with your ongoing journey and thank you again for sharing.
Hi I have just been reading your post and would like to touch base with you. I was diagnosed with Secretory breast cancer on the 29th November, I was told it was a very rare cancer that they had not heard of before, I was told it didn’t respond to chemo and if lymph nodes clear no radiotherapy would be needed, so I had a mastectomy on my left breast on 7th Feb with my follow up appointment with surgeon on the 20th February when I was told the 4 lymph nodes removed all clear, at the time I had not been discussed about at the MDT meeting which was the following day. On the 26th Feb a BCN contacted me to tell me that my breast tissue and lymph nodes had gone up to London for further analysis.
Yesterday I had an appointment to see an oncologist who told me I didn’t have Secretory cancer I had Apocrine cancer with secretory features and that my next step involved 24 weeks of chemo……in my life this has been one of my worst fears
My gut is telling me I need a second opinion, so I was very interested to read your story,
I had dealt with all this pretty well up to the point of them saying I need chemo. Any comments/advice you can give me would be greatly appreciated x
Hi
Poor you! What a whirlwind. You didn’t say how big your tumour was or whether or not you have been given a KI-67 or Androgen test of the tumour material? If not, I would suggest you ask for it. I had these offered by my NHS oncologist to help determine the risks associated with a no treatment option. If the KI-67 result is high (c 30 or more) and/or the Androgen result is low or negative it is likely that chemo would be suggested. My tests results on KI-67 (10) and Androgen (8+) - both good so less chance of recurrence or spread of the cancer. Also the sentinel lymph node biopsy was negative. However, as they couldn’t say categorically I should/should not have chemo and having done my own research online I booked a 2nd opinion with a Consultant Breast Cancer Oncologist at The Royal Marsden. I did this privately and as my tumour was small (7mm + 17mm pre-cancerous cells) she told me categorically no chemo or bisphosphonates, just radiotherapy for prevention.
I am also surprised you had a mastectomy - was the tumour large (over 2.5cm)? I had a local wide excision retaining most of the breast tissue.
I can recommend the oncologist at the Royal Marsden. She said she only saw around one Apocrine breast cancer patient a year and had my tumour been large or had spread I would need chemo. She was definitive and clear on the risk of harm v benefit with chemo and her duty of care to do no harm depending on the risks to an individual patient. She also suggested I was tested against a range of 11 genetic breast cancer predispositions (available to TNBC later stage only on NHS!) which I have also done privately - I heard yesterday they were all negative! Thank goodness.
I hope this rambling précis of my situation helps but please come back to me if you need me to clarify anything or want the details of the Royal Marsden consultant oncologist and consultant geneticist.
I have just finished 10 sessions of radiotherapy - 5 to the whole breast and 5 ‘boost’ sessions to the tumour bed to ‘mop up’ any microscopic cancer cells that might have remained after surgery.
Good luck and be positive. Do your research and ask lots of questions and don’t be afraid to challenge your oncologist on chemo. I did thankfully and haven’t had to have it. Xx
So glad I found these posts! Now I’m even more confused though. Quick history -Core biopsy said TNBC grade 1 with mitotic score 1. My oncologist said we had to do the “red devil”chemo and 17RT w/lumpectomy or mastectomy and I asked if we could test more for the subtype because the mitotic score was so low and unusual for TNBC. At first he said no and then we talked it through and he sent it back for additional tests. It came back Acinic cell invasive carcinoma grade 1 w/secretory features. Oncologist now says lumpectomy w/RT or mastectomy and no chemo or RT. I opted for a double mastectomy and no other treatment. Full breast pathology comes back as acinic cell invasive carcinoma grade 2 and DCIS in a second mass found not seen on any imaging including MRI and he has talked to colleagues and he wants to do chemo even though I went with the most drastic choice to avoid it. He said he’d send my samples to Cleveland Clinic or Mayo for a second look and I told him I’d think about the chemo. Cleveland clinics results come back invasive apocrine carcinoma grade 3 no acinar or secretory features seen and DCIS aprocrine carcinoma high grade 3. I was floored as I based all my decisions on the original pathology. My oncologist ordered all my samples including the left breast and lymph node be sent to Cleveland Clinic to all be retested. I’m in limbo now.
In 2020 the World Health Organization came up with the requirements to be considered a true apocrine carcinoma it has to be AR positive, GATA 3 positive, GCDFP-15 positive, TNBC or HER 2 positive. KI67 across laboratories isn’t standardized so it could have varied results and depending on the studies it wasn’t reliable for prognosis. I’ve researched a lot of studies and because there were no true requirements for apocrine until 2020 I don’t feel confident in the results.
I definitely want to say have your results additionally tested and if possible by a different lab.
The other thing I’ve read a lot is that TNBC is often found w/DCIS that wasn’t seen on imaging (like me)so why would BCS/Lumpectomy be an option as it would be missed and your chances of it becoming invasive down the road are high? Sorry I have so many questions! Oh and if apocrine is less aggressive why am I grade 3? I’m a give it to me straight kind of girl and I’m not trying stress anyone further I just really need answers to a lot of whys and what if’s. Any insight would be appreciated and I’ll update when the results of all my samples come back from Cleveland clinic.
Just an FYI I went with a flat closure and one side is indented and the other sticks out a bit so I needed tops that would disguise it when I don’t want to wear the prosthetics and I found a lot of cute tanks on shein.com with ruching/gathering in the front that hides the differences and they’re really cute and inexpensive. I also found a 1cm (they have 3 different thicknesses available)bra insert that I can put in my old bras (I was a B before) and it gives the look of an A which I’m much more comfortable with than the flat/lopsided look. I’m really struggling with the way I look in clothes so I wanted to share.
Hi
I’ve read your email and have no answers to your questions I’m afraid. I can only talk about my experiences. Having further tests on my tumour which was very small (7mm) and the DCIS surrounding it is not possible as all the material was used for the additional KI-67 and Androgen tests.
I appreciate, as in most scientific fields, there will be differences of approach. At this stage I don’t have anything further to offer in terms of help other than to say I have just completed 10 rounds of radiotherapy - 5 to the whole breast and 5 ‘boost’ sessions to the tumour bed. The purpose of these and particularly the last 5 sessions was to make sure there were no microscopic cancer cells remaining - that would not have been visible with scans etc. The radiotherapy finished last Wednesday and so far no serious side effects - just a few sharp pains on a couple of days (nerve pain from the surgery being spiked by the radiotherapy), and a slight hot feeling in the breast. All these went overnight.
In my case (and remember we are all different and our body responses will be different), it was never suggested I have a mastectomy as an option as the tumour was very small - even smaller than the scan showed originally.
Finally, my private consultation with The Royal Marsden breast cancer consultant Dr Alicia Okines underpinned that the treatment planned (RT) was correct and that I absolutely didn’t need chemo as my tumour (even with the additional precancerous cells) was small and it hadn’t spread to the lymph glands. If you can afford it (I paid £200 for an initial online consultation) I would recommend it as money well spent. Good luck.
Thank you for your reply, life seems a bit numb and confusing at the moment, I spoke with The Royal Marsden last Friday to arrange getting a second opinion and asked for an appointment with Prof Johnston or Alicia Okines, they will arrange this for me once they have my information sent through to them from my hospital.
My tumour was originally detected at 45x20x20mm hence needing the mastectomy. Thank you for the information regarding the K1-67 and androgen test I will need to find out this information, I have been referred for genetic testing.
Many thanks for your help and wishing you good luck with your recovery xx
Good luck with Royal Marsden appointment. Dr Alicia Okines was very helpful and also referred me for genetic testing with Dr Zoe Kemp who was also very helpful. I had the negative results back last Thursday against a panel of 11 known breast cancer genetic predispositions.
I can see why you had a mastectomy given the size of your tumour and I’m sorry you are having so much confusing and contradictory advice. I do hope things become clearer for you and wish you well. Xx
I was interested to read all this. I was told my grade 2 tumour was idc, triple negative, with apocrine features. Post mastectomy and snb, it was only 8mm in breast but also found to be in 1 out of 7 lymph nodes (7mm). I was given chemo and radiotherapy too. I think not much is known about apocrine features. And perhaps that is different to an apocrine subtype.
Hi daiffodil1
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.
Hi Catyj
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.
I hope this helps.
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!
Hi Catyj
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.
Take care. Xx