Triple Negative Apocrine cancer treatment

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101

Finally I found someone with the same TNBC with apocrine cells. I was diagnosed last week with Invasive ductal carcinoma STAGE 1B with apocrine. My tumor is 6mm so caught early. Monday the nurse liason called and said chemo for 6 months (I have 3 major trips planned along with my kids gathering for my 70th birthday). Needless to say I was devastated. Three days later I met with the breast surgeon who said bc it is so small our plan is:

  1. Lumpectomy
  2. Radiation 5 days a week for 6 weeks
  3. All activities are still on the table!!
    She also said that Apocrine BC is very rare and this is a good thing! YAY.
    Please let me know how things are progressing for those of you who have this type of BC and any advice you can tell me.
102

Hi Boilergirl

Welcome to this rare but beautiful group but I’m sorry you joined the club!

If you can bare to read through this now very long thread you will see that we have contributed lots of info between us. Like you my tumour was small (7mm with a further 17mm precancerous cells) removed with local wide excision (lumpectomy) and one of the sentinel nodes for biopsy (all clear). I had to challenge the recommended chemo, radiotherapy and bisphosphonate treatments as my research suggested chemo had no better outcome than without. A second (private) opinion at The Royal Marsden confirmed that as the tumour was small, hadn’t spread and my other markers were good I should definitely not have chemo or bisphosphonate treatments just 5 days of radiotherapy whole breast and 5 days of boost radiotherapy to the tumour bed. 14 months on from surgery and I’m all good and annual scan was clear.

One thing the ladies in this group have found is that recommended treatments vary from hospital to hospital. However, a key component appears to be if the cancer shows signs of having spread outside the breast - chemo is the definitely advised. Your recommended radiotherapy does seem to be a lot longer than any so far advised but hey, I guess they must have their reasons - might be worth asking about through.

I wish you the best of luck and send you hugs for your journey. Keep positive and know you can handle this. Xx

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103

Hello, and welcome! (to this small, but available group)

My cancer was 8mm in size, with no lymph node involvement. I was given the option of chemo (although at a reduced strength) due to ambiguity surrounding this type of cancer - however much as Peonyviolet-4 and my medical oncologist said, it seemed to be overkill considering my specific cancer profile (but seems to be very on par with a few of the girls in this group). Treatment included a wide local excision and sentinel node biopsy, with 3 weeks of radiation including additional boosters to the tumour bed. Radiation only finished 4 weeks ago, however am truly feeling pretty good and am back to exercising/everyday stuff without fatigue.
I have another MRI in 2 months, and then annually after that for monitoring but feel very (quietly) confident that it’s all done and dusted!
Seems to be that the apocrine type is slower progressing and not as aggressive from what I have read, which tends to be in our favour when caught early.
Wish you all the best, and hopefully the radiation doesn’t tire you out too much just continue to listen to your body. x

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104

Thanks ladies! My surgery is scheduled for March 14. I also have Primary Parathyroidism which means one of my parathyroid glands is wreaking havoc on my calcium blood levels so I am having that taken out by the endocrinologist surgeon right after the breast surgeon does her thing. Thank goodness I will be under general anesthesia and that they can tag team to get both things taken care of at the same time. Do you all have what they call a SAVI SCOUT implanted at the mass site? My surgeon is having me get one put in (it’s the size of a rice grain) before surgery. It’s relatively new and it helps guide her to the mass easily. She is going through my areola vs a side incision so I am wondering (and internet searching) if recovery from that is easier than the side incision. I can’t wait to feel normal again and not have these things growing inside me. I’ll let you know how surgery goes.

105

That sounds like a rough situation, but sounds like you have a good team! You have got this!
I had a magseed (sounds quite similar from google) inserted before surgery in one of the lumps, was a pain and didn’t want to insert into the lump but they eventually got it. I also had a local so didn’t feel a thing.
I had two lumps removed, one being a side incision (not my fav scar) and the other was around the areola (can hardly even see it now 5 months later) - both healed fine and have had no issues, however I found the incision on the areola was sooo itchy during healing and continued for a couple weeks!
are you have a sentinel lymph node biopsy? That I found was harder healing and felt quite irritated during the process, but still manageable. They should give you exercises to help support the healing process, just stick to them and you will be fine :slight_smile:

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106

Thank you poppy94 for your perspective. This is what I wanted to hear! Yes, I am getting the sentinel lymph node biopsy. Did you have to take any strong medication afterward? I just want to get this all behind me and pray for the best outcome.
How are you doing now, after 5 months?
One question I forgot to ask my doctor. After surgery what kind of bra should I wear? I would think the over the head kind would be hard to get on but I feel I need support so my stitches don’t pull. Suggestions?

107

They did supply me with some stronger medication if needed, and I did take 1 the first night because I dreaded waking up in the middle of night in pain, but I found the next day I didn’t need to take anymore and only took regular pain relief when needed.
I also had surgery coming into the Australian summer which was half the battle, my bandages just got sticky and sweaty and the site felt irritated in general. I am feeling good now, and finished radiation about 4 weeks ago and my energy levels are back and am honestly just very grateful we live in a day and age where modern medicine and scientific research has come so far.
It’s a mental challenge and a slog to go through, but we have no option other than to come out on the other side and you absolutely will too.
My hospital provided a post surgery bra, it has a zipper up the front and fits quite snug. I would say anything that enables you access to take it on/off from the front would be good.
How are you feeling about it all now? It’s a lot to wrap your head around without becoming upset, but reading the above stories and seeing how well everyone is doing post treatment really feeds positivity.

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108

Hello @boilergirl . I am so sorry that you have had this diagnosis . I am pleased that you found this group because it has been really helpful to me In the last year .

My tumour was 6mm in my left breast, but it had spread to one of my lymph nodes. I also had some DCIS in my right breast .

My diagnosis and treatment is different from yours , but I will try and help answer some of your questions

Because of the lymph node involvement , I did have chemotherapy . I was initially very scared , but I found that it wasn’t quite as bad as I expected it would be . I managed to do most things that I had planned throughout 2024 .

In January I had a double mastectomy with reconstruction . This was my choice and something that I pushed extremely hard for…. Not the usual recommend surgery and I appreciate that this wouldn’t be the choice for many women

I did have a little radioactive seed injected before the operation . It was over very quickly and I hardly felt it . I am not aware that they gave me a local anaesthetic.

I am recovering well from surgery and I am delighted with the results of the reconstruction .

The pathology following surgery confirmed that the tumour was as tiny as it was seen on the scans . and that there was only the 1 lymph node involved. It was decided that I didn’t need any radiotherapy . It was also confirmed to be grade 2 tumour , so not as aggressive as most triple negative breast cancers .

My response to chemo was good … with 2/3 of the tumour killed . The fact that it was not completely killed means that I will now take an oral chemo for 6 months ( capeicitabine )

Regarding a post surgery bra . …. Marks and Spencer’s do an excellent post surgery range with front fastening and super soft fabric . I was advised to sleep in a bra for a few weeks , but obviously my surgery was very different to yours

Ask your medical team if you are likely to have a drain fitted . They will do this to drain away any fluid following surgery . It’s probably unlikely if your surgery is a lumpectomy, but better to be prepared . I found the drains were cumbersome and limited movement etc . But they were removed after a week . If you are likely to need one , then you can purchase a handy waist belt that holds your drain bottle . I got mine from Amazon .

I want to send a huge hug and good luck vibes for your operation on the 14th xxx

I have read everything I can find on this rare type of breast cancer . In summary I think I have learned that this apocrine subtype is less aggressive than others , it is unlikely to be completely killed by chemo, but if lymph nodes are involved , then chemo is recommended.

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109

Just came back from getting the Savi Scout put in. It was just like the biopsy only a lot shorter. I hate that lidocaine needle but after that it was ok. The same technician that almost broke my rib trying to get a mammogram picture last time had to do another to make sure the Scout was in the correct position. I told her she bruised me last time so she was extra careful this time. The mass is so far back against my chest wall it’s hard to get a picture. Lorna even said that whoever read my first mammogram must have been on his game bc it was barely seen it was so far back.
I ordered a bra that opens in the front so I don’t have to raise my arms too much.
Thanks for all your help and I will keep you posted.
Hugs from North Carolina, USA

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110

Surgery completed on March 14. Surgeon went through the lower fold of my breast versus the areola which was a change from the original plan. She said it was easier to go through the fold. Had the Sentinel Lymph Node dye - no one told me I would have methylene blue dye all over my white shirt that I brought to wear home - but at least the dye came out in the wash. I told my grandkids my pee was blue and my 3 year old said, but mine is yellow! So cute.
I did take some pain meds the next two days but part of that pain was from the parathyroid surgery I had done at the same time. That feels worse than the lumpectomy, I guess because I have to hold my head up and move my neck a bit so my neck is somewhat swollen. No stitches but he just glued my neck closed, but it sure does itch.
The pathology reports should be back by Wednesday and hoping for some clear nodes. The breast surgeon said the nodes looked good to her but you never know what is going on microscopically.
Oncologist visit on April 3, once we get the pathology back we can decide on a plan of attack. Fingers crossed for radiation and not chemo.
Hugs from North Carolina, USA

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111

so interesting how everyone has different treatments! I had the radioactive tracer (which im assuming is different) and no blue dye, but have heard that likes to stick around for awhile haha! fingers crossed for good results for you! x

112

Great news today! The lymph nodes are clear and negative for the margins surrounding the mass! I have a post-op appointment with the doctor on Monday and I guess she have news regarding radiation at that time but it looks like chemo is off the table!
Feeling relief right now,
hugs from North Carolina, USA

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113

Thats fabulous news @boilergirl congratulations xx

114

Great news. I’m so pleased for you! It’s such a relief - I know!! Xxx

115

The best news, very happy for you! X

116

Saw the surgeon on Monday and she mentioned having chemo along with radiation. The last time I saw her for the pre-op she suggested no chemo so this was a bit of a shock. Nothing has changed, she got the mass (6 mm) and the 2 mm margins around were all clear, and the one lymph node was clear. My feeling is that she is saying chemo just because that is what the going standard of care is for triple negative. I started out STAGE 1B and now I am STAGE 0.
I see the oncologist April 3 and she will have the plan - hopefully it will be less than the M-F for 5 weeks radiation plan and chemo that the breast surgeon suggested. I did have blood drawn for a genetic panel but those results will be back around April 17. Reminder that I have no family history of any cancer.
Here are my thoughts:
No Chemo, radiation for 5 weeks, mammograms to monitor
If genetics come back positive then I would do chemo and radiation
Any experiences you might share???
Hugs,
from North Carolina

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117

Hi boilergirl

I feel for you! I went through something similar as explained at vacuous points in this thread. If your TNBC is the Apocrine type it is now accepted by many oncologists that chemo has little or no impact IF the cancer hasn’t spread outside the breast and the tumour is small (usually below 2cm). If the TNBC is the more virulent main type and/or it has spread outside the breast then chemo is advocated.

It sounds like your tumour was tiny, hasn’t spread to the lymphatic system and I think is Apocrine? If so I would challenge having chemo. If you check back through this thread there are some links I posted to research from China/USA and elsewhere supporting this view. Also I had a private second opinion from the Royal Marsden hospital in London that confirmed, given my details/results, I should definitely NOT have chemo or bisphosphate treatment (as my bone density is good and no history of osteoporosis) but should have radiotherapy - 5 days whole breast and 5 days to the cancer bed. I would definitely challenge chemo as it can do more harm than good in some cases. Either way, I wish you the very best of luck and send you hugs xxx

118

Peonyviolet, I had you in my mind when I visited the oncologist April 3. She recommended the double infusion every 3 weeks times 4 = 12 weeks of going through chemo. I kept pressing her for outcome data that would differentiate the APOCRINE type from regular TNBC but she had none. She just kept saying this is what we do for TNBC, standard procedure, and that I was young (70 years old) and healthy and that my body would take the chemo very well. I told her I would reconsider chemo if my BRACA test came back positive and that I would then have a double mastectomy and chemo but at this point I don’t see any positives for such a drastic measure. She wants me to attend a “Chemo Seminar” to hear what the others have to say.
I have my mind made up that I will just do radiation which my breast surgeon said would be 5 weeks for 5 times a week = 25 sessions.
I am recovering well from the lumpectomy though I am still swollen and hard (I feel like I have my young perky breast back from my younger days LOL) and as the swelling goes down I can see that my breasts definitely won’t match up in size or shape but that doesn’t bother me. The steri strips are off now so I can get a good look at the scars. I was surprised now neatly the one was done under my breast fold compared to the lymph node one where she just whip stitched it. I am now putting Mederma/silicone gel on the scars.
My parathyroid scar is the one that is more bothersome than the other two. The endocrinologist surgeon removed two lymph nodes from my neck “just to check them” but they were clear. That wasn’t the plan and I was seriously annoyed that he took them out which caused more of a scar and swelling on my neck than I anticipated. I have a lump under the neck scar which he said will resolve in a few months, my voice is wavering when I talk, and it’s hard to swallow like I have something in my throat, all of which he said will “resolve in a few months”. Can you tell how annoyed I am with him?
I can’t tell you how appreciative I am for all of your counsel!
Hugs,
from North Carolina, USA

119

Hi Boilergirl

Oh how your report back reminds me of my own experiences. My oncologist had never had an Apocrine TNBC in her 20 years of practice but still said it’s the protocol we follow for all TNBC as the Apocrine subtype is so rare - and little research to suggest otherwise.

I did my own research and I agree there is little out there (I linked what I found in the early parts of this thread). However, I asked for two more tests which she agreed to somewhat reluctantly (KI67 and Androgen) and as the results of these were both favourable she was inclined to agree if I so chose not to have chemo. It was then I sought a second opinion from the Royal Marsden hospital. Whilst that consultant was unequivocal about no chemo or bisphosphonate she said this was because:
a) the tumour was very small with clear margins;
b) there was no spread to the sentinel lymph nodes, and
c) Apocrine is the least aggressive and slow growing of the cancers.
She did say if it had spread to the lymphatic system she would advise chemo. As it was, just 5 + 5 rounds of radiotherapy.

I do hope your wounds and scars heal well and quickly - my underarm sentinel node scar was by far more sore and took longer to heal. I’m still working on the scar tissue with stretches and massage now and that’s 18 months later - probably due to radiotherapy I understand.

Btw - our ages are similar as I was 68 when I had the surgery so will be 70 in October! I feel 35 so can’t understand how I reached (almost) 70. I am grateful each day though that I was diagnosed early and for life itself!

Good luck to you and I’m sending you a warm hug to help you through the next few weeks or so. It does get better and you will hopefully soon feel more like yourself again.
Annie xx

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Hi Boilergirl, I hope that you are continuing to recover from your operation .

I feel your uncertainty about chemotherapy in your case . I was exactly the same, I had read that it was less aggressive than other TNBC’s and also that the response to chemo might not be as good as other TNBC’s . I did have the chemo and it was because I did have a single lymph node involved .

I felt a bit frustrated that my oncologist had just put me in the TNBC bucket and didn’t seem interested in discussing the unique characteristics of this apocrine type . Eventually I requested a meeting to discuss things and he explained to me that the rarity of this type means that he would feel uncomfortable making decisions based on just a hand full of women who had been studied . That made sense to me . He also said that there wasn’t any treatment available that targeted the androgen receptor ( which I think is a feature of this cancer ) … in short we had to treat it as aggressive Tnbc because there’s nothing else .

I felt happier after the discussion

I completed 16 rounds of chemo … it wasn’t the best time … but I got through it . The tumour removed during surgery showed that the chemo had killed about 2/3 of the cancer … not a full response . This was what I expected to be honest after what I had read .

My advice is to wait until you get the results of the lymph nodes before you make a decision . Not sure you have had them yet ?

I hope that sharing our experiences and the advice we were given helps you to make your decision . Sending love . You got this !:heart: