I have been taking various supplements for quite a few years (since menopause really) to help with various things. Since Covid I have focussed a good deal on my immune system and then getting a breast cancer diagnosis last year even more so.
For the immune system, I take daily Vit C, D (1000 iu), Zinc, probiotic and Quercetin. I also take Turkey Tail mushroom tincture as this helps to boost immunity specifically related to cancer cells. I do a herbal parasite cleanse for around two weeks (Wormwood and Black Walnut capsules) every couple of months. There is significant interest in the role of parasites in contributing to cell mutation leading to things like cancer.
As far as the hot flushes and other post HRT symptoms are concerned, the combination of acupuncture and a grounding sheet have helped significantly. The joint pain is sporadic and I’m hoping the grounding sheet will help more with that over time together with Chondroitin and Glucosamine and magnesium supplements.
I have taken black cohosh and other herbal menopause treatments before I went onto HRT and they didn’t do very much to help unfortunately.
I know that doctors are cautious about alternatives to pharmaceuticals but to be honest my faith in pharma has been severely rocked since the untested Covid jab outcomes!
I think we all have to make the choices that are right for us as individuals and ask lots of questions to be sure we are making the right ones for us.
Good luck to you both on your chemo journeys - I’m so sorry you are both going through it and will be for a while. I shall be sending you both very positive vibes and virtual hugs. I may not have met either of you but we have all been touched by this shitty disease. Think positively ladies as the mind is very powerful. Love and hugs. Xxx
Hi Annie, thank you for your good wishes and the list of what you are taking. Prior to being on apixaban, a blood thinner, I used to take so many supplements I’m sure I rattled! These days I’ve had to cut them right back because they all seem to clash. So many supplements also thin the blood so it’s not considered safe to take them together. I take vitamin d and am interested in quercetin supplements too, but need to check first if I can. Just before I had surgery I bought a reishi mushroom powder but then didn’t take it because I read it’s not advisable before major surgery and I haven’t started it up again yet. I haven’t heard of Turkey Tail tincture and will certainly investigate that and the herbal parasite cleanse which again I hadn’t heard of.
Like you I share a mistrust of modern pharma and it’s ready dismissal of alternatives. But I have been following the development of scientific investigations into the role of the gut microbiome and it’s relation to the immune system quite closely. I got into making my own probiotics a few years ago and it’s really simple and, I think, better than tablets because you never know how many bacteria actually survive in those.
I know chemo strips the gut microbiome so each time, as soon as I feel ready to eat a normal diet again, I try and eat as much fresh fruit and veg and wholemeal grains as I can, and I also take inulin as well as having my kefir and kombucha and sauerkraut. I buy an unfermented sauerkraut because it’s quite a faff to make. I think of it as rebuilding my guts! At each blood test I’ve had after chemo my white blood cells and neutrophils have held up well, and I like to think that’s why. It isn’t generally advised to take probiotics when you’re on chemo, but I was lucky with the NHS dietician I spoke to as she has been making kefir herself, so knew what it entailed, and she cautiously advised me to go ahead. But it is very much at my own risk.
One last thing. There has been research and some evidence that a good quality extra virgin olive oil has anti cancer properties, specifically for breast cancer. Dr Tim Spector recommended four tablespoons a day, which I think is overly excessive. But in smaller quantities it’s a very easy and pleasant thing to add to your diet, and might help. I know it’s expensive now, but so are supplements. It helps me to think of it as a supplement rather than food, and so spend a bit more on it than I would have normally. It’s also supposed to help with heart disease.
Yes it’s a horrible disease but I think it helps to think positively and to try to be proactive in your own health. Not just during treatment but after as well to try and stay disease free. For me that means diet, pre and probiotics and supplements. And hopefully more exercise too once I get past the fatigue! I do think it helps you to feel you are taking back some control and to feel more empowered when dealing with something so potentially awful.
Hi ladies
It’s really nice to connect with some other women who also have TNBC with apocrine features and I’m reading all the posts with interest.
I think I also should ideally have had chemo and immunotherapy prior to surgery, but this didn’t happen because we didn’t know the cancer was in a lymph node until post surgery, even though I had breast MRI pre surgery.
I’m also interested as it seems quite a few of us had macro in one lymph node only, and quite a few of us have dense breasts. Were you all grade 2? Seems we have lots in common. The bit I don’t understand is why if it’s less aggressive it seems to have ended up in the lymph node for a few of us. I had a lot of pain in my breast for some time before diagnosis but googled it and pain was not a red flag. Which meant I was not too concerned. Also lots of seem a bit older than is usual for the standard TNBC. I was 52 at diagnosis, now 54.
It makes me frustrated and a little cross that so little is known about this and we’ve all ended up with different treatments and it’s all been very stressful for us and we’ve found out most about this on this forum! Thank you for all your input! At some point I’m going to have a chat about this with my oncologist. I haven’t yet as the ongoing pain in my axilla has been the focus now.
Best wishes to each and every one of you.
xxxx
I feel as frustrated as you in terms of the lack of knowledge and variety of treatment propositions for the Apocrine TNBC! I have asked Cancer Research UK and Breast Cancer Now about research into this type of breast cancer (I support both these charities financially - the latter on a monthly basis for six months before I was diagnosed!). Nothing back. Maybe we should start lobbying these charities?
I too think the age profile is an interesting common feature (post menopausal). As it is less aggressive than it’s big sister TNBC but maybe not as detectable (?) the importance of regular screening is paramount. I thank God for my screen last October which detected early that I had BC. When I asked the oncology team why we only then had annual screening for five years the answer was ‘diminishing returns as screening can lead to unnecessary surgery!’ I wonder if the necessity or not of surgery is more associated with an aging patient and the costs!! Makes me angry. I for one will be self referring after five years which apparently you can do.
Anyway rant over. Let’s all keep in touch and supporting each other. Take care of yourselves and here’s my hug to you all xx
Good to hear from you. I know what you mean about alternate universe.
I am having 4 x AC - A-doxorubicin and C-cyclophoshamide, these are every 14 days. I am then going straight into 12 x weekly of Carboplatine and Paclitaxel. I had an appointment with Prof Schmidt who worked on the original immunotherapy trials for TNBC and he stated that I should have been given this with chemo before surgery. He told me that the Apocrine sub type should not be factored into the diagnosis only TNBC. This is totally at odds with my first oncologist, (very strongly pointing out that I had apocrine TNBC and he was going to deescalte) ;who was not even sure if I should even have any chemo full stop!
Unfotunately you cannot have immunotherapy if you have already had surgery, so I am now on a very strong chemo regime. I am very happy that I am now being treated at St Barts and they have been amazing; but I find it absolutely shocking that the standard of care and prescribed treatment can vary.
Writing to you; but also writing this down, so maybe someone else will read this and have the knowledge to advocate for all the treatments that are available. I was diagnosed in May so the window for successful chemo response has decreased; but I am trying to stay positive. Look after yourself, sending you my very best wishes, Sharn
Hi everyone! 30yo with TN apocrine carcinoma here, with no family history of BC.
I am from Australia, however this is one of two forums I can find discussing this cancer at all, which is wild! Found a 4cm lump back in the beginning of 2024, had an ultrasound, mammogram and biopsy all done which confirmed it was a fibroadenoma but due to size and vascularity they decided to put me on the waitlist and remove it anyway.
5 months later and had the surgery, and surprise surprise there was a 8mm cancer hiding within.
MRI came back clean, but have surgery booked tomorrow to take our clearer margins and undergo a sentinel node biopsy (honestly recovery for that terrifies me). I have been given a very good outlook and my surgical oncologist believes that it should all come back clear but would like to be certain.
A second lump was also found in the other breast which they will remove during surgery anyway, fingers crossed it is a true fibroadenoma.
Everywhere I read it seems that TN apocrine carcinomas are very slow growing and not aggressive compared to ductal TN, making chemo neither here nor there for it.
Am very much new to all this information, and just pottering around on what I can seem to find.
Wishing you all the best with your treatments x
Welcome to the forum although that is said with sadness that you needed to join the forum in the first place.
I was diagnosed with Apocrine TNBC last October via a routine mammogram. The tumour was deep in dense breast tissue and could not be felt so I thank goodness for routine mammograms! You may have read my history already if you’ve ploughed through this thread but suffice to say no one else at that time had had this rare type of TNBC on this forum. My oncologist had not had a patient with this type of cancer in her 20 years of practice. So I did my own research online for potential treatments and prognosis. As you have found there is little there. However, it convinced me to pay for a second opinion from the Royal Marsden hospital in London on the proposed treatment plan - to include chemo and bisphosphonates. I had surgery to remove 7mm tumour and further DCIS of around 15mm and one sentinel node. All clear and good prognosis and around 10-11 weeks later I had 5 x full breast and underarm radiotherapy and then 5 x boost radiotherapy to the tumour bed.
I am due for my annual mammogram at the end of November and hope all is good! I can honestly say that I don’t give cancer a thought and am positive in my outlook. I can also say that I am a little anxious about the mammogram as I felt well when I was diagnosed - you just don’t know what’s going on inside you!!
Anyway, I intend to continue being positive as I’m convinced this helps your body to resist cell mutations. Also keeping your immune system well supported. I hope you can remain positive and that your journey is entirely positive too.
At last, I’ve found you all. I was diagnosed March ‘24.
3 tumours in right breast and 3 nodes
My treatment was based on the Keynote 522 Trial.
I had 12 weekly sessions of carboplatin and paclitaxol chemo with immunotherapy every 3rd week.
I then 4 sessions of Epirubicin and Cyclophosphamide chemo every 3 weeks along with immunotherapy.
Mid way scans showed the tumour reducing and lymph nodes normalised.
6 week break then smx (with immediate recon using tummy) and sentinel and tracer nodes removed - 10 hour operation.
Results 3 weeks later ( on 11 Nov) show up to 50% tumour is dead tissue, however 6 lymph nodes are positive.
I now need a full axillary clearance, I managed to get a CT for tonight, but surgery isn’t until 24 Nov !
I’m worried as that means the nodes won’t be removed until 3 months after last chemo.
I know apocrine is slower and I’m Grade 2. A CT in April showed no spread of disease, but would the 6 lymph nodes not show up on that if they were positive then ?
It also seems like chemo worked a bit on the tumour but not at all on the lymph nodes?
Anyone else experienced this ?
Hello! sorry have only just checked back on this forum and have since seen your story.
Firstly, goodluck for your surgery tomorrow and wish you the speediest recovery!
I have a discussion next week with my medical oncologist regarding chemo now, so to hear everyones stories of positive responses is very uplifting.
As for the lymph nodes my understanding is they can be positive and still be missed on scans, however I am quite new to all of this so I really am not sure.
I have also been told that while triple negative, the apocrine type does seem to be less angry than the usual type but never the less is still a very scary and shitty situation to be in.
Hi Sharn
Sorry about taking so long to get back to you, I’ve been in something of a chemo fog, but it’s gradually clearing now. How are you doing? That sounds like a pretty gruelling course of treatment and I expect it’s taking its toll. I found mine tough and it was only four sessions over twelve weeks. I’ve finished my last one now and I’m waiting for radiotherapy. I asked my oncologist why someone like you, with a very similar cancer, is getting a much tougher regime and he implied that my age and because I have multiple sclerosis were factored in the decision to offer me TC. But I do agree with you that individual oncologists can have very different ideas about how Apocrine TNBC is treated. My surgeon said this is because it’s so rare there has been very little research and so there are no protocols for it. But nevertheless we are all here and desperately searching for answers about our treatment and if we have made the right decisions. It’s not right that our treatment rests on individual oncologists own opinions and experience rather than research and science and so treatment of TNBC can vary so wildly. Your previous oncologist seemed to take the view Apocrine cancer’s need less intensive treatment whereas your current one seems to be throwing everything at it. My oncologist took the middle view that chemo was necessary but a less intensive one. Who is right? There really should be an established treatment plan for Apocrine cancers rather than depending on what individual oncologists think. There may not be so many of us, but we deserve answers as much as anyone else with cancer.
Anyway Sharn, I hope you are coping okay with your chemo regime. It’s tough, I know. But the one thing I found helped was to try remember that no matter how crappy you feel, it does have an end to it. But if you need to talk you can always message me directly. Take care now, Valx
Hi everyone. I’m so pleased I have found this forum and I’m so grateful for all your posts so far
I was diagnosed with TNBC with apocrine features in may . I am 55 years old
It seems I have such a lot in common with you all . My tumour is 5mm grade 2 with androgen receptor. I have 1 lymph node involved.
This was found by a routine mammogram, I can’t feel the tumour or the lymph node … zero symptoms . Thank heavens for the mammogram !
I am having neoaduvant chemo at the moment , along with immunotherapy . I am nearly through chemo- just one more session to go
My surgery is planned for mid January 2025
I did really struggle to accept the treatment plan (6months of chemo ) after the things I read online about apocrine subset of TNBC . I was concerned that the chemo may not be entirely effective . I also struggled with the NHS predict tool that showed very small additional benefit to having the chemo .
I discussed everything with my oncologist and he told me that this subset is rare . He told me he hadn’t seen one in 20 years. He told me that the available research and studies are based on so few women, that he wasn’t comfortable making decisions based on them
After lots of soul searching , I have come to be grateful for the option of the chemo . My hubby keeps reminding me that if I wasn’t having the chemo, I’d probably be stressing about not having it
I know that you have all struggled with the same questions I have .
Please reach out if you want to discuss or share experiences
Finally , I’m interested in hearing about anyone’s experience regarding success of neoaduvant chemo for this apocrine subset . What % response was shown in the pathology after surgery etc
Sending love to you all … I’m so grateful to find this forum
Hi Annie
Have you had your annual mammogram yet? I hope it wasn’t bad news as you are talking about possible chemotherapy now. I’ve finished my chemo and I’m currently waiting for radiotherapy. It’s a long haul.
I saw your post about not getting any response from the cancer charities. Everyone seems to act as if apocrine doesn’t really exist in its own right and so treatments and opinions vary wildly, depending on the opinion of individual oncologists. It’s so very hard to get any concrete information about it except that it mainly affects post menopausal women, and is potentially less aggressive than regular TNBC. We may be fewer in numbers, but we are here and deserve answers and science and research based treatment as much as anyone. It’s very frustrating.
Best wishes, Valx
It’s good to hear from you. I’m having my annual mammogram on Wednesday 27 Nov (this coming Wednesday). So fingers crossed!
As to chemo, it was suggested a year ago post surgery but then I had the KI-67 and androgen tests and subsequent second opinion at The Royal Marsden and chemo was a definite no. This was because the tumour was small 7mm + 17mm precancerous with clear margins and no evidence of spread to the sentinel lymph node.
I agree with you and others that have said it’s neither fair nor helpful that there is so little research. My NHS oncologist also had never had a patient with Apocrine TNBC in her 20 years prior to me.
Anyway I’ll let you and the Forum know how my mammogram goes after Wednesday. I’m trying not to think about it to be honest as I’m positive and want to keep it that way!!
I wish you and all on this forum the best of luck and to keep positive - easier said than done sometimes - but I’m sure it helps!
I too am thankful for routine mammograms that discovered my cancer as neither I nor my surgeon could feel it. I didn’t have neo adjuvant chemo I think because initially they thought I had two smallish lumps of 10mm. It was only after surgery they discovered some cancer cells in-between so it was reclassified as one 35mm lump, stage two… Maybe if that had been known before I would have been offered neo adjuvant therapy. It was also obvious from a biopsy that at least one lymph node was positive. I had the breast lumps removed at surgery also a full auxiliary clearance and fortunately it was just in one lymph node. After surgery I was offered TC chemotherapy, Docetaxel and Cyclophosphamide, which I’ve just finished, and I’m waiting for radiotherapy.
I also read that chemotherapy for apocrine cancer may not be effective. I thought long and hard before going for it. I got a written second opinion from the Royal Marsden recommending chemo but by then I had decided anyway that I wanted to do everything I can to stop it coming back, and I would have worried if I didn’t have it, always wondering if I’d made the right decision.
You are the first person on this thread that has used the NHS predict tool! I think it gave me about a 14% better survival rate with chemotherapy. But have you looked at the new version that hasn’t been ratified for use by the NHS? That gave a much higher survival rate from surgery alone, and I think about 4% more with chemotherapy. I asked my oncologist about the new one and he said generally oncologists are very unhappy with it. I was surprised how much it differed from the one currently being used by the NHS. You end up not knowing what to believe.
Have you finished your course of chemo now? I’ve just finished mine and it’s quite a relief. I lost most of my hair so I’m hoping it will start growing back soon! Meanwhile I’ve bought plenty of beanie hats to wear as I prefer them to the traditional turban. I have a few strands of hair that does a decent enough comb over that under a hat gives the impression of a fringe! Also, fortunately, for some strange reason, I haven’t lost my eyebrows or eyelashes. For indoors I got some small skull cap like beanies that work really well.
I hope you’re recovering well from your chemotherapy and building up your strength for surgery in January. Take care and best wishes, Valx
Thanks Val … it’s so good to hear about your experiences.
My last chemo is in 2 weeks . I started in June and I have coped pretty well . I’ve managed to work part time throughout and meet friends etc .
I have lost every hair … eyelashes included . But I have an amazing wig and I’ve mastered a new skill of applying fake eyelashes ( never dreamed I would add this to my skill set )
I do joke that the chemo version of me is actually better than the pre chemo version… my natural hair and lashes never looked this good !
Seems that we have all been told that this subset is super rare … but there’s a few of us who have found each other via this forum . I’m wondering if it’s not quite as rare as we are being told … I’m intrigued.
I have had dozens of genetic tests … all negative …no genetic predisposition to cancer. I think that is common with this too
I did read that rhesus negative blood might be a factor … and interestingly someone on this forum has mentioned this . I am RH negative
@annie All the very best of luck for your mammogram on the 27th. I’m having a pre surgery MRI on that day too … I’ll be thinking of you and sending sending good luck vibes x
Yes I have looked at the original and the new version of the predict tool. But like you , I have read that the uk NHS oncologists don’t yet endorse the new version
I have found the predict tool super useful , factual experience based data … instead of some of the out of date content that you read on the internet
I have found that google / social media has been extremely unhelpful and caused me tonnes of anxiety . Everyone says don’t look … but it’s impossible not to
My takeaway is that much of the content you will find is several years old and doesn’t take into account recent advances in drugs and immunotherapy … so it’s really not helpful.
Social media accounts that dramatise chemo etc … they are designed to get hits … so don’t show that you will have tonnes of good days when you can get on with your life … avoid them
I do wonder if the new predict tool should also factor in immunotherapy (prembo ) to fully predict
xx
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