Hey Tulip , how is the chemo going ?… I hope you are coping ok x
Hi Mrs_p1,
Thank you so much for thinking about me and for your message! I had the first infusion last Monday - for now, the side effects for me are tiredness especially on days 3,4 and ovarian/pelvic pain which started on day 3 - something strange that I will report to the nurse today and hope to get medication in case will start again. I am at menopause for 3 years now so it is strange to experience this. Other than this, there is tiredness but not same intensity every day. I will have now only Paclitaxel for three weeks so I am waiting to see how it will go. I assume the chemotherapy effect is cumulative and will get worse in time but for the time being was no so bad. Will keep you posted. I wish you all the best.
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Hi all so pleased to have found this!!! I had a small cyst Aug 2025 which was drained and I thought this had refilled end Jan 2026 .. referral to breast clinic then scan and mammogram I was advised 8 days later I had breast cancer. 2 days later private MRI scan (thank you work private healthcare) then 10 days later that I had TNBC and was facing a gruelling 18 week intensive chemo plan starting the following week due to aggressive nature of TNBC. The consultant chemo appointment was 36 hours later and I was informed the plan has changed as it is apocrine subtype. There is now a plan for surgery first followed by reassessment.
I literally feel I can’t keep up it’s all happened so quick! I’m 49 working mum of 3 children in a new relationship and it just feels A LOT!
I am positive I have no chemo plan and happy in the hands of the team but it’s a rollercoaster! I just can’t find much info on this. I feel contaminated and am really wanting removal of all tissue and false boobs .. anyone had this?!
Also what is everyone’s long term outcomes I guess .. with surgery what followed and how are your futures looking? I think I’m spiralling today with shock but also educated and not used to all this uncertainty… I can manage work crisis and others really well .. not so much my own especially given the ripple effect on my children 
Hi all so pleased to have found this!!! I had a small cyst Aug 2025 which was drained and I thought this had refilled end Jan 2026 .. referral to breast clinic then scan and mammogram I was advised 8 days later I had breast cancer. 2 days later private MRI scan (thank you work private healthcare) then 10 days later that I had TNBC and was facing a gruelling 18 week intensive chemo plan starting the following week due to aggressive nature of TNBC. The consultant chemo appointment was 36 hours later and I was informed the plan has changed as it is apocrine subtype. There is now a plan for surgery first followed by reassessment.
I literally feel I can’t keep up it’s all happened so quick! I’m 49 working mum of 3 children in a new relationship and it just feels A LOT!
I am positive I have no chemo plan and happy in the hands of the team but it’s a rollercoaster! I just can’t find much info on this. I feel contaminated and am really wanting removal of all tissue and false boobs .. anyone had this?!
Also what is everyone’s long term outcomes I guess .. with surgery what followed and how are your futures looking? I think I’m spiralling today with shock but also educated and not used to all this uncertainty… I can manage work crisis and others really well .. not so much my own especially given the ripple effect on my children
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Hi frankiepugface3
Welcome to the forum and specifically to this rare, but thankfully less aggressive Apocrine TNBC club! When I first joined this forum in December 2023 having just been diagnosed and in the same space as you are right now I hoped for someone else who had this thing!! They didn’t (initially) but a few have joined the ‘club’ of rarities since. I did a lot of research, asked lots of questions of my cancer specialists (with no clear answers as they just didn’t know the answers) though I did get some additional tests done (KI67 and androgen) and then got a second opinion from a recommended specialist at The Royal Marsden in London. Best thing I did to settle my mind. If you haven’t already read this long thread from the beginning, it might be helpful to do so. If you have anything you’d like to ask me, please fire away. Meantime, I wish you peace of mind and a great outcome. Sending hugs. Xx
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Hey Frankie , I’m so sorry you are going through this … but glad you found this group, and I hope we can help
I understand the shock and how overwhelming everything is right now …. But it sounds like you are in good hands , given that they recognised that a different plan was needed re the apocrine diagnosis .
Yes I did have a double mastectomy… I did have to push the Drs hard for this .. they were adamant I only needed a lumpectomy… but I felt that I just wanted all risk removed etc.
I had a bilateral mastectomy with silicone implants . I will never regret this .. I feel completely empowered by my decision. My mental health is better and I have a fantastic cosmetic result .. way beyond my expectation.
The downside is the reduced sensation, but this really doesn’t bother me
Obviously this is a huge decision… maybe take some time to really think it through.. it won’t be right for everyone and your medical team may not agree to it .
I did have quite a battle with the Dr to get him to agree to the surgery.. I think it helped that I was extremely clear that this was what I wanted and I kept telling him this repeatedly over several visits
Hi ladies
Those of you who have read or commented on this thread since it started with my first post over two years ago will have seen me mention Dr Alicia Okines - a breast cancer specialist at The Royal Marsden Hospital. I thought you might be interested in this article in today’s Daily Telegraph about spotting unusual cancer symptoms early. The breast cancer section features Dr Alicia Okines! The screenshots of the relevant section are below to pass on to friends and family should you wish to do so. The article also has similar sections on prostate, lung and bowel cancers by other specialists.
I hope all the ladies on this thread, who definitely feel like sisters, are feeling well, or managing to cope with treatments. Sending love and hugs. Annie x
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Thank you so much for replying are you all clear now? Did you have surgery and then other treatment?
I think I will contact the RM just for peace of mind .. I am feeling more positive today and my girlfriends arranged an afternoon tea today which was lovely 
Thank you so much for replying I feel like I would like to enquire about this route so I will definitely ask the questions! I am so pleased you were happy with the results! Are you all clear now?
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I am all done with treatment now . I am having a full body scan every 6 months … to monitor for any reoccurrences … of course because I no longer have any breast tissue , I won’t have a reoccurrence in my breast … we are monitoring the rest of my body . I’ve had 2 scans so far … and all clear . I’m doing really well . I have a very scary week waiting for scan results… when I would say my mental health is a bit ‘off’ … but outside of this all is well
Hi Frankie
I had surgery (wide local excision or lumpectomy) and removal of one sentinel node for testing to see if the cancer had spread out of the breast - thankfully it hadn’t. I was then primed for chemotherapy but as Apocrine TNBC is rare it made me have doubts about its effectiveness from the research I did (see my posts earlier in this thread). I then sought a second opinion from Dr Alicia Okines of the Royal Marsden to find out her advice. Emphatically no chemo or bisphosphonates as the tumour was small, hadn’t migrated out of the breast and my bone density was good. I then had 10 sessions of radiotherapy. That’s was it for me as no hormones involved so no ongoing medication
I have now had two annual screenings and all good. I am vigilant and have had a couple of checks where my breast felt hard or sore but thankfully all good and nothing to worry about. I genuinely don’t think about cancer 99.9% of the time. I get reminders when I receive posts on the forum or hear of others who have just been diagnosed (like a friend of mine just a few weeks ago) but I don’t get into a tail spin, I just offer to be a listener.
Please ask away if you have any questions.
Annie xx
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Hi Annie and this wonderful community,
I am so grateful to have found this group and the incredibly useful information shared here.
I was diagnosed with TNBC (Grade 1) early this year. Based on the initial biopsy, I did my own research and learned that Grade 1 tumors are often less responsive to chemotherapy. Given my small breast size and the tumor’s margins, I decided to proceed with a mastectomy.
My post-surgery pathology report has now confirmed TNBC with apocrine features (Stage I, clear margins, and no lymph node involvement). I continued digging into medical papers and asked my oncologist to test for the AR (Androgen Receptor), which came back strongly positive.
Now, I am trying to determine if chemotherapy is truly necessary for me. While my doctor strongly recommends the standard care (chemo) simply because it is classified as TNBC, my research suggests that for the apocrine subtype, the 5-year survival rate is nearly the same with or without it (with only about a 1% difference). Based on a couple of the latest medical papers I’ve read, the 5-year survival rate for TNBC with apocrine features is around 90-92% even without chemotherapy.
Reading your comments has given me so much confidence. Putting all this information together, I feel more certain that chemotherapy may not be the right path for me. Thank you all for sharing your stories.
I do have a couple of questions for the group:
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If you opted for no chemo and no radiation (due to mastectomy), are there any oral medications available to inhibit AR levels? Or do you mainly focus on regular follow-ups (every 3–6 months) with U/S, blood work, and tumor markers?
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Are there any supplements you are considering to support the immune system or manage androgen levels?
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What are you doing for self-care and recovery after surgery?
I look forward to hearing your experiences. Thank you again for being such a light in this journey!
Hi Lavendermoon
First of all I can only speak for myself and I’m sure others will have different perspectives. However, like you I did a lot of research most of which is shared on here. The clear conclusion I drew given both your and my own results (TNBC apocrine 7mm tumour with surrounding precancerous cells all removed and no spread to lymph nodes) was that chemo would not make a huge difference to the prognosis and I chose not to put my body through what I deduced would be unnecessary trauma. My clearest advice to you is to get a second opinion from Dr Alice Okines or one of her colleagues at The Royal Marsden hospital in London (contact details of her secretary in this thread somewhere but I can send to you if you can’t find it). She studied my pathology and told me emphatically NOT to have chemo but to have radiotherapy. I didn’t have a mastectomy (I had local wide excision) so she felt I needed to make sure the tumour base was radiotherapy zapped for prevention purposes. That was over two years ago and all good so far and I keep good checks and follow up on any concerns.
As for supplements - I keep my immune system well stocked, including daily Turkey tail mushroom extract (and a load more), and also a herbal parasite cleanse every couple of months (clove, black walnut and wormwood). Again I have listed all this somewhere else in the thread but let me know if you need me to resend direct to you.
I think having a breast cancer diagnosis makes us all more health conscious and vigilant but I can honestly say that I don’t think about it day to day. I live my life in the moment and as I would have before the diagnosis. Thankfully my early detection made that possible and I realise that is not true for everyone.
Wishing you the very best and let me know if you have any further questions.
Annie xx
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Thank you, Annie, for your input. I was already considering a second opinion, so I contacted the hospital’s international team since I don’t live in the UK. I have received the information and will now proceed with the request. Thank you for creating this community. I am so glad I found it
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I wish you all the very best and I’m sure that Dr Okines will give you an honest and full opinion with the options available to you. You can then take that information to your own hospital team to discuss.
I started this thread just after my own diagnosis 2.5 years ago. I hoped to find information from others that was lacking in my own medical/oncology department regarding treatment options for Apocrine TNBC. I’m pleased my own experience and research has been helpful to others facing the same information vacuum.
Sending you love and hugs and I look forward to hearing how you get on.
Annie x
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Hi Annie,
Hope you are doing well.
I am still in the process of getting a second opinion from the Royal Marsden Hospital. They have accepted all of my medical records and the review is currently pending. They seem to be very busy with a high volume of second opinion requests, so there might be a delay.
In the meantime, Yes! Could you please share your previous threads about supplements? I would really appreciate it. After everything I’ve been through, I am finally in the mindset of focusing on how to take care of myself.
Also, did Dr. Okines happen to mention anything about the Androgen receptor/hormone, which is so characteristic of apocrine TNBC?
Thank you so much.
Hi and I hope you’re keeping well?
I looked back through the thread and took a couple of screenshots that may be helpful(attached below) and also noted the supplements list was in thread 81 and some more in 82 from another lady
I hope this helps - meantime enjoy the sun while it’s here!! Take care Annie xx
Dear Annie,
I hope you are doing well and having a wonderful time!
Thank you so much for your kind email, and for taking the time to look back through the thread and even send me those screenshots. It is incredibly helpful.
I have a small question regarding your supplement list if you don’t mind. I noticed you mentioned taking Turkey Tail mushroom tincture rather than the capsule form.
Is there a specific reason you prefer the tincture? (better or faster absorption for the immune system?) I am very keen to learn from your experience, as your deep research is a huge guide for me. I am actually taking AHCC (the Kinoko mushroom extract in capsule form) right now, but ever since I learned about Turkey Tail from you and read so many good things about it online, I really want to try it too!
Thank you again for always being so supportive.
Hi lavendermoon
I understand that the tincture is more bio-available than tablets or capsules and, as a result, likely to be more efficiently used by the body. I use a tincture that is produced by a local company based near Bristol in SW England. I can highly recommend them and have mine on a subscription. It is called the Bristol Fungarium. Here’s an intro link to get you a discount: Bristol Fungarium | UK-Grown Organic Medicinal Mushrooms – bristolfungarium
NB - it says it’s for dogs but ignore that as they have had to do this as the UK gov is treating this as a novel product (even though it’s been sold for several years safely) but until it has been given the formal ok they can only say it’s for dogs!! Ridiculous nonsense and something that affected my daughter’s first business making soft drinks!!
if you need any further info please just shout
Annie xx
Dear Annie,
I hope you are keeping well! Thank you so much for the wonderful extra information about the Turkey Tail tincture. It makes perfect sense.
I am writing to share some incredible news with you. I finally received the official second opinion written report from The Royal Marsden Hospital.
The specialist reviewed all my data (early stage, clear margins from my mastectomy, negative lymph nodes, and over 95% AR expression).
The doctor explained that because everything points to a “Favorable Histology,” omitting chemotherapy is a completely reasonable option, and the evidence shows that the 5-year survival rate is very good. To be honest, because my tumor size was larger than yours and my Ki67 was higher, I was so anxious. But reading the report and having all my questions so thoroughly explained has given me true peace of mind.
Since there were so many things I didn’t understand about the apocrine features at the beginning, I spent a lot of time searching the internet and reading research papers. But now, I feel like a chapter has closed. Reading this report has helped me understand the apocrine features, and I am so happy to get back to my normal life and enjoy and appreciate every single moment.
I truly hope this androgen LAR subtype will be recognized more in the medical field in the future, leading to better, more tailored treatment options. I want to keep studying this subtype and see how future treatments develop, but for now, I am much more confident in my decision to stay away from chemotherapy.
Finding your thread in the forum was pure destiny. If I hadn’t learned about your journey and The Royal Marsden, I would still be lost in fear. You gave me the courage to take this step.
Thank you from the bottom of my heart, Annie. I hope this thread continues to be a source of hope for other patients with apocrine TNBC.
With all my love and gratitude,
Lavendermoon
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