Triple Negative Apocrine cancer treatment

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Dear Lavendermoon

First of all, I’m so, so pleased that your report from your Royal Marsden specialist was so positive! I really felt the relief in your words and truly know how difficult it is when faced with such stark options. We all know this is our lives we are talking about, and for sure nothing is certain whatever choice we make. However, having the information we all deserve and, hopefully, future research, we can make those decisions in an informed way and less fearfully.

I am so touched by your words of gratitude to me (made me tear up) but honestly I am just happy to help anyone with any info I have who is going through this journey. We all know what this feels like, we all know the serious nature of decisions taken, we all know waiting is brutal. My hope is that we can all look to our inner strength and find the depth of resource we all carry to be positive and self healing in how we approach this thing called cancer. Like you I wish this charity, other research organisations and CRUK can find the time and resources to research better and more tailored treatments for Apocrine TNBC.

Sending you the biggest hug and lots of love - go and LIVE, Annie xx

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Hi everyone. I hope everyone is ok. Really pleased to find this group. I was diagnosed with Diagnosed with Stage 2a (no apparent lymph node involvement), 2.8cm Grade 2 Aprocrine cell type TNBC back in February this year. I have had 24 weeks of chemotherapy and then a bilateral surgery to remove the tumour from he right breast and make the second a similar size. The lump itself did shrink a little (a few mm) but not loads and the surgeon also took two lymph nodes and he thinks enough margin. I’m not expecting a zero residual cancer but am a little worried about what to expect from he pathology report. it feels like there has been lots of decisions - and now I’m hoping I made the right decisions (I was guided by Doctors btw). Thankyou for this community as I was told this was quite a rare cancer type and my Oncologist had only ever had one other person in his career with this type.

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My wife was diagnosed with Apocrine TNBC. She has had a lumpectomy, clear margins second time around, clear lymph nodes. We were told chemotherapy and radiotherapy were essential after surgery as an insurance to clear up stray cells. We were also told the plan was to hit it hard with paclitaxel/carboplatin for 12 weeks and them epirubicin/cyclophosphamide. We were really worried about this and sought a second opinion as others have done. As Ki-67 was in the grey area of 28 we were told chemotherapy was still advised, but a de-escalated regime of paclitaxel and cyclophosphamide was best. Our own oncologist has now suggested paclitaxel and carboplatin. The two sides disagree with respect to cyclophosphamide and carboplatin. We worry carboplatin is too aggressive, but can find very little information to help us make a clear decision. Does anybody have any experience or advice that will help us?

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Hi there .. I’m sorry that you and your wife find yourselves in this position of uncertainty ..I do understand .

I’m not medically trained so can’t give you advice , but I can share with you what I learned along my journey with apocrine Tnbc . I hope it helps

This is quite rare . There’s not a lot of detailed studies on this type of cancer.

All the oncologists seems to group it into the Tnbc category , even though there may be some evidence that it should have its own treatment path that’s recognises it differences .

I had long and difficult conversations with my oncologist .. I did have chemotherapy and immunotherapy. I was worried that I could be being over treated . My oncologist explained that the current uk guidance was to treat it as TNBC and this has a standard treatment pathway that includes chemotherapy, immunotherapy and radiotherapy. He told me that he wasn’t prepared to take a different approach whilst there hasn’t been enough women with it to fully study it . This made perfect sense to me .

I did lots of soul searching before I made my decision to have the chemo . In the end it came down to something my husband said .. He said … if you don’t have the chemo and the cancer comes back , you will always regret it and wish you could turn the clock back .. you will also spend the next few years worrying about reoccurrence , knowing that you went against their advice .

I made my decision with a very strong hunch that I was being overtreated , but knowing that I didn’t want any regrets .

Also to say that Chemo wasn’t anywhere near as bad as I thought it would be . I was looked after so well .. the anti nausea meds etc made it all really bearable .. I never vomitted once throughout my treatment .

To help make your decision , maybe ask whether the tumour is grade 3 or grade 2… how large was it ?

Do you know what receptors the cancer has . Mine was strongly androgen receptor . Ask about this .. and ask about any new treatments that target the androgen receptor ..

My chemo was 2 years ago . My oncologist and I discussed the androgen receptor at length .. there were some trials ongoing around a targeted treatment … maybe there’s something available now

All the very best of luck with your decision and your subsequent treatment .. sending love x

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Hi Jemery

First of all, I am so sorry your wife is going through this. As others on this thread will attest, there is relatively little known about the Apocrine TNBC because it is so rare. Notwithstanding that, and faced with a ‘well the plan is to treat it as the same aggressive TNBC, even though is it much less aggressive, slow growing and relatively unresearched’, formula for my treatment, I did my own research and then asked for a second opinion. I had a private online consultation with a consultant at The Royal Marsden Hospital in London.

To explain, mine is the first entry in this thread - no one on this forum had spoken about having this rare type of TNBC. I was looking for answers and there were none. As and when I received them I documented it all on here for others in the hope that they would benefit in some small way and not feel as I did, like I was the only person with ATNBC. That was three years ago - I was diagnosed on 6/10/2023.

Everyone’s experience is going to be different, not least because we are all different and the cancer can be more or less in size, it can have involved lymph nodes, the histology post surgery can present other factors that indicate how to deal with the cancer and/or the risk of any residual cells. To that end, it has to be an individual’s choice how to proceed BUT armed with the best available data.

In my own case, my oncologist had pressed for the same pattern of treatment as your wife initially - she had never encountered Apocrine TNBC in her 20+ years in oncology. The Royal Marsden consultant said the exact opposite - in my case the tumour was small (7mm + 17mm precancerous), clean margins, no lymph node involvement and caught early. She was emphatic about no chemo and only radiotherapy to mop up any microscopic cells that might remain undetected. She also said no to bisphosphonate treatment down the line - again not necessary, and would do more harm than good. It reassured me as she said she saw about one patient a year with this type of cancer and clearly was across how to deal with it effectively - not ruling out chemo etc for more advanced tumours.

So, with apologies for this long message, my advice would be to seek expert opinion from The Royal Marsden if you can (my 1hr online appointment was £200 in Dec 2023). The consultant I saw was Dr Alicia Okines. Please be fully informed and then make your decision and whatever that decision is, it will be the right one for you and your wife . Above all else, remain positive (difficult I know) as your body responds well to being positive!

The very best of luck to you and especially your wife. Your support and positivity will be invaluable to her. If you have any other questions about any of the above please feel free to reach out. Sending you both a big hug and lots of love :heart:

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I’m so grateful for this forum xx it’s the one place where we all have the same uncertainty and concerns .. we share and support

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Many thanks both. It is stage 1a, grade 2, AR positive, 16mm, clear lymph nodes, post lumpectomy. Had a consultation with the Royal Marsden and the opinion is the polar opposite of our oncologist, ours strongly wants carboplatin (and is against cyclophosphamide) and Royal Marsden equally strongly advocates cyclophosphamide as a de-escalated approach. Both oncologists are top of their tree, it is impossible to decide what is best. KI-67 is 28, which is close enough to 30 to make chemotherapy viable. Apologies I had to delete a couple of entries due to typing errors.

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Hi Jemery

Oh my goodness, I don’t envy you and your wife! As I am not a medical person I don’t feel qualified to add anything other than you have to ask any remaining questions, do your research on what is advocated by both and then make a decision. It is a lottery and whatever you decide it will be your decision and the right one for your wife.

As an aside, I have been a regular donor to Breast Cancer Now since well before I was diagnosed. I have asked them twice now - once by email and once via a member survey - to research treatments for Apocrine TNBC. So far, no response, which is disappointing to say the least.

My wish is for everyone on this thread and their relatives and friends to lobby Breast Cancer Now to do research into specific treatments for the increasing number of women being diagnosed with Apocrine TNBC. I for one have offered my medical history to help them, if required. Let’s all lobby for this so that those diagnosed in the future , as well those presently dealing with ATNBC, can have greater confidence in the treatments offered.

Take care of yourself and your wife Jemery and the best of luck x