PS yes I’ve been told MRI ( unfortunately have to pay for as not available on nhs even though Mammogram and U/S didn’t show it) is best for me every year. I may choose to have the other breast taken away as my breasts are so dense and lumpy. Everyone’s choices different for them.
Hi daffodil1
I’m sure you will have done your research on Apocrine TNBC but thought I would send you this link as it might be helpful.
There are also a few (albeit limited value) descriptors of Apocrine in relation to breast cancer that might also be of interest. Here are a couple of screenshots.
I’m not sure if this helps - probably not - but thought I would copy to you just in case. Xx
1 Like
Hi Karyno, really hope you get to chat to the oncologist soon and that it’s helpful. It’s lovely to connect with others with a potentially similar diagnosis xx
1 Like
Hi there peony
This is very helpful, thank you.
I’m going to chat to my oncologist about this when I (hopefully) see him in June.
Again, so good to share info!
Thank you
xxx
1 Like
Hi Karyno
Just wondering how you got on with the oncologist?
X
Hi unfortunately I haven’t seen or spoken to one yet. I’m seeing my surgeon end of next week and requesting I am put into nhs system so I have the specialist breast care nurses as a point of contact and also make sure I don’t miss out on any screening etc. I’m wishing to have the other breast removed ( individual reasons) so will be good to hopefully speak to an oncologist regarding my reasons. I’m so grateful for all the support we have here in UK. I’ll update you in a few weeks - it can sometimes feel a bit of stress with the bits that shouldn’t be. Thanks for keeping in touch and messaging. I hope this makes sense as I don’t have my glasses on! 
Thank you that’s so kind. xx I’ve spoken to my surgeon recently and she has reassured me I have a good prognosis due to size of the tumour and I chose to have masectomy due to very dense breast tissue, and the margins clear, also Lymph nodes were clear so I feel more confident moving on. Now taking time to decide whether to stay flat or implant but my instinct is to just stay flat and no more surgery. I’m young ish and fit so carrying on with life is so important. It’s given me a different perspective on life which I see as a positive. Thanks so much for the screen shots it’s so kind and supportive. Hope you are also doing well xx
2 Likes
I’m so pleased you have managed to get some reassurance from your surgeon. As I have said before, it is important to keep asking questions until you feel you have sufficient information to make informed decisions about your proposed treatments.
I’m good and was able to enjoy my daughter’s wedding in mid June. I felt well and hope to do so for many, many years to come.
I wish you well and hope you heal and stay well for decades! Sending hugs xxx
1 Like
Hi all
I have also been recently diagnosed with triple negative apocrine breast cancer. It is 34mm grade 2 and unfortunately has already spread to one lymph node. I am 69 and I had surgery a few weeks ago to remove it and an auxiliary clearance. I am currently trying to decide whether to have the chemotherapy that is being offered. I have done as much research as I can about apocrine cancers, but it is so rare there’s not an awful lot out there so I was really interested to read this thread. My oncologist is treating it as a TNBC and used the Predict tool to demonstrate the benefits of chemotherapy. But there is a more up to date version of Predict issued in March 2024 which givers very different outcomes for the same cancer. My oncologist said this hasn’t been properly validated yet, but it’s results are hard to ignore. The old version has 45 women surviving with surgery alone with 11 benefiting from chemo, but the new 2024 version has 72 women surviving with just surgery and only 4 benefiting from chemotherapy. That’s quite a big difference. I’m also aware there is some evidence apocrine cancers may not benefit from chemotherapy. I’m in a quandary now. I had decided to go with chemo until I saw the huge difference in the old and latest Predict tests. I’m just wondering if the new Predict version is robust enough to base a decision on. I’m also wondering about going the route Annie did and getting a second opinion from the RM. I thought I’d made my decision now I’m all mixed up about it again. I don’t want to have chemotherapy if it’s unnecessary, but obviously would if there’s a clear benefit. I’m not sure there is anymore.
Apologies for the long post, and Annie, I’m so glad you got to enjoy your daughter’s wedding.
Valx
2 Likes
Hi Val
First of all I’m so sorry to hear of your diagnosis and truly hope that you can remain positive - this is key in my books as to how your body responds.
As to what you should do vis a vis chemotherapy, I can totally understand your confusion. I didn’t have the test you mentioned and have no experience of the old or newer versions so can’t really comment. However, in your shoes I would definitely be asking lots of questions and challenge the TNBC treatment plan for Apocrine TNBC.
Personally, I would go for a second opinion with the Royal Marsden, if £200 or so is affordable for you. Likewise the genetic testing which you might be eligible for under the NHS as the cancer went to your sentinel node. I promised my daughter I would follow the advice of the RM consultant and in my case she advised against chemo - quite emphatically. However, she did say that had the cancer tumour been more than 25mm and/or spread to the lymph nodes she would have advised to have chemo. The tumour I had was 7mm with 17mm of precancerous cells, and there was no trace in the sentinel node. I was advised to have radiotherapy - 5 x standard and 5 x boost to the tumour bed area.
I think pursuing your doubts on the proposed treatment plan will help to put your mind at rest. If that means ultimately the proposal to have chemo then the decision is still yours, and yours alone.
Good luck with your decision and I wish you well. Annie xx
PS. My daughter’s wedding was fabulous even though the weather wasn’t particularly good! It was lovely to feel fit and well to enjoy the day. X
1 Like
Hi Annie
Thanks for your reply. I’m glad your daughter’s wedding went well and you were able to enjoy it. It’s been hard to find two sunny days together over this summer.
I’m swinging like a pendulum now. Two weeks ago I’d decided to go for the chemo on offer and to stop trying to research it all. But then I looked at the new Predict and it seems to say the outcomes from surgery alone are pretty good. So I was back in doubt and full research mode. 
Predict is available online and is very simple to use as long as you know some of the details about your cancer if you wanted to give it a go.
Going by what the oncologist at the Royal Marsden said to you she probably would recommend chemotherapy for me. Although I had two tumours of only 10mm each, after surgery they found evidence of cancer inbetween them so are counting it all as one, 34mm. Before surgery I named them, Bonnie and Clyde! Plus it is in my first lymph node and was quite big and actually beginning to spread outside of it. Extracapsular spread I think it’s called. So the RM oncologist would likely recommend chemotherapy for me. Also my ki 67 is high. So there are quite a few red lights flashing on the dashboard that even I, with little prior knowledge of cancer, can see.
The chemo my oncologist suggested is, according to her, is a more gentle one, if any chemotherapy can be called gentle. Maybe not quite so harsh! Four doses of TC every 21 days. This is partly because of my age and also because I have MS. In a way I’m getting fed up with worrying should I shouldn’t and trying to research everything and am becoming more inclined just to go for it. But I think I will do as you suggest and try and get a second opinion from the doctor you saw. Just to make sure we’re on the right track for an apocrine cancer and mine specifically which does seem to be more aggressive.
Also, I don’t fit the criteria for genetic testing on the NHS but would like to have that done too, perhaps also arranged through the RM.
I’m still waiting for a start date for chemo so in the meantime I’ll see if I can get an appointment with Dr Okines.
Thank you for your support and advice. I’ll let you know how it goes! Keep well!
Best wishes
Val
3 Likes
Hi Val
The one thing I have learned with any type of breast cancer, but particularly with the Apocrine TNBC, is that rarely are things straight forward. We are all different and our bodies all respond differently to the same or very similar diagnosis and treatments. That is why the decision on the way forward for you has to be yours alone once you have satisfied yourself that you have all available information. That’s a tough call as nothing is 100% certain, unfortunately. I know how challenging it is making that decision when the information available is less researched given the rare nature of the apocrine type.
It was reassuring to me to have the firm advice not to have chemo by the RM but even that was based on best information available and probabilities. I was prepared to have chemo if they too advised it and either way it would have given me peace of mind.
As to genetic testing, I’m surprised you can’t get it on the NHS but Dr Zoe Kemp at the RM sorted mine. It’s not cheap £200 consultation and £400 for the genetic testing. Having a daughter and granddaughter, as well as for myself, it was worth it. If you speak to Dr Okines she can advise you on this and refer you to Dr Kemp.
Keep your spirits up, try to remain positive and do what you need to do to give you some peace of mind. That is priceless. Wishing you all the very best and please let us know how you get on.
Take care, Annie x
Good Morning, Thank you for sharing your experience. I was diagnosed with Apocrine triple Negative breast Cancer in May this year. I have had a lumpectomy and axillary node removal, this week. I am waiting for the next stage of treatment. I was originally planned to have chemo before surgery as normal TNBC treatment; but that was cancelled due to Apocrine features.This has delayed my treatment; so surgery only undertaken 3 weeks ago. It is interesting to read that chemo is not always necessary after surgery. I have 35mm grade 2 with high grade DCIS. After lumpectomy it was 49mm with clear margins.
I also had macrometastic disease in one sentinel node; hence the axillary lymph node clearance. I have been tested for BRCA but it has come back negative. I am going to ask for a second opinion at the Royal Marsden. I feel much better after reading your post, as there is so little information out there. I will update as the progresses, if there is anyone with the same, feel free to reach out for moral support.
2 Likes
Hi Starra
I am so sorry that you too are going through this thing! This forum will at least help you to feel you are definitely not alone.
When I was diagnosed in October last year there was no-one on this site (or indeed in my local hospital’s Cancer Beacon Centre) who had experience of apocrine TNBC. Whilst that was a bit bewildering at first, it spurred me on to question the proposed treatment plan for the more aggressive TNBC. I did my research and asked lots of questions, got more tests done that were not routinely offered (KI-67 and androgen) to help assess my risks. That information gave me confidence to challenge and seek a second opinion with The Royal Marsden. I did promise my daughter to accept the advice of the RM consultant and thankfully that meant I didn’t need to have chemo. I know that that advice was based on my particular circumstances (small tumour 7mm and surrounding precancerous cells 17mm and no spread to sentinel lymph nodes). Had the rumour been bigger and/or it had spread I would have been advised to have chemo.
As I have said elsewhere on this thread, it is your body, your life and your choice how you proceed with treatment options but I would definitely recommend getting an second opinion with a RM consultant.
I wish you good luck and please let me know how you get on. Sending hugs xx
Thank you for the reply, so good to know I am not alone. Could I ask, how did you get the extra test please? Many Thanks x
1 Like
I spoke to my NHS consultant about it having read online about the KI-67 and androgen tests as indicators that would help to determine my body’s response to the cancer. The consultant said given the rarity of the Apocrine type of TNBC she would order the tests on the remaining cancerous tissue removed during surgery. x
Hi Starra It sounds as though your situation is very similar to mine. I was diagnosed in April with TNBC Apocrine breast cancer. They found two tumours approximately 10 mm each plus it looked like it was in my lymph nodes. I had surgery about five weeks ago to remove them, and an auxiliary clearance. The histology report found the two small tumours had a few cancer cells between them so they are now counting it as one tumour of 34mm. My consultant was very cagey about it, but I don’t think she has dealt with apocrine cancer before. The trouble is, there is so little information out there, no Breast Cancer Now or Macmillan leaflets explaining it, you are on your own. I did loads of research but most of what’s out there are academic or medical research papers, very difficult for a lay person to decipher. But one thing my whole breast cancer team keeps telling me is that it’s so rare there is no real evidence either way about what is the best way to treat it, and so no NICE guidelines or NHS protocols, that I could find anyway. So it is treated as TNBC. I’ve come to accept that although I am going to seek a second opinion from the RM. Unlike Annie’s, my cancer shows more signs of aggression in that it is larger and has spread to my lymph nodes and there is extracapsular spread which means it was already outside the first lymph node. So I’m resigned to the fact I will likely need chemo and indeed, given I can see it’s an aggressive one, think I want to have it. The chemo that’s been offered is, they say, a relatively ‘gentle’ one, TC. So, like you, I’m waiting for the next stage in this strange journey. Hugs and best wishes, Val
Hi Annie Bit of a bad patch the last week or so but I’m back on track again now. The funny thing is I wasn’t even thinking much about my cancer, just feeling physically and mentally very low. I guess it comes out in different ways.
I was surprised I couldn’t get genetic testing on the NHS but I don’t fit the NHS protocols which are very narrow and although my oncologist could have ordered it, she clearly didn’t want to and bumped it back to asking my GP to refer me. So I’ll probably end up going the private route too because I do want to know.
I wondered if I could ask you what the relevance of Ki 67 and androgen tests are to apocrine cancer treatment as you had extra tests done? My histology report didn’t mention Ki 67 but something called the proliferation factor which is apparently the same thing, and that was >30, so high and not so good. My histology report also mentioned an androgen receptor quick score of 5+3= 8 and I have no idea what that means. I tried researching and couldn’t find out anything meaningful and asked my oncologist and she said we don’t use that, so I’m none the wiser. I wondered why your oncologist ordered extra tests and what their significance is in respect to apocrine cancer treatment. Is my androgen score good or bad? It’s so frustrating when all this information isn’t easily accessible.
Thanks for all your advice and support Annie, you’re our trailblazer for apocrine breast cancer! Valx
1 Like
Morning Val,
Thank you so much for sharing your story; it is good to know that there are others out there in the same boat and we can share stories and support each other. I spoke to the breast nurse and I have another 2 weeks for my histology to come back. I did mention this thread and PeonyViolets story. She has asked me to let her have the extra test information. As discussed above. Reach out any time and I will keep you posted on how I get on, sending you lots of healing, Sharn
Thank you so much for the response; it means so much to know that I am not the only person going through this, and I have been reassured to read your posts. Thank you and best wishes S