Apocrine cancer

Hi AppleBlossom and welcome to the community. I see you have joined and put up a post in the Triple negative breast cancer support group….. I put apocrine cancer into the search tool near the top and found a few hits n the TNBC group.

Hi Apple blossom, I have had triple negative breast cancer twice, the first time I had it was in 1989 I was 38 years old. The second time was in 2000 and it was a new primary and in the other breast. At first people told me that it’s a tough cancer to beat and I had 4 things against me. I got my first cancer before the age of 40, I had triple negative cancer two times and I went on to have a new primary in the opposite breast so I had bilateral cancer. But I refused to believe all the statistics and I went on to live for 34 years though I was told I was very high risk because I knew life was more complicated than that and I believed I wasn't just a statistic. I was a unique human being. I now have a bone cancer MDS at the ripe old age of 73 diagnosed just a couple of months ago. It has nothing to do with my previous breast cancer. I got this from a chromosome 5q deletion. We never know where life is going to take us and what strengths we have to draw on when we need it. It says in the Bible that we are appointed once to die and only God knows when that will be. Good luck to you AppleBlossom. CathyB24. 

Thank you Mike

I had tried that but got no hits so I tried again and this time I did. There are some interesting stories but the trouble is it's so rare there aren't many and most of the posts are from a long time ago. I'll see if I can follow any of them up.

Best wishes 

Val

Dear Cathy

Wow, you've been through a lot. Thank you for sharing your story. You're right, we are all different and our cancers are all different too and react in different ways. My  breast cancer is also an apocrine cancer which is very rare, less than 1% of breast cancers in women. Because of that there's hardly any information out there about it. Macmillan has no leaflets or info on it so I've been scrabbling about on the internet trying to find out about it. I've only managed to find a few medical research papers which are largely beyond me and hard to take in. One thing that did come up is that it may be less aggressive with better outcomes. But mine has already spread to one lymph node so I think it is quite aggressive. I'm deciding on chemo at the moment.

I think you have a lot of strength to fight your bone cancer MDS. I wish you well and good luck.

Valx

Thank you so much. I’ll see if I can dig up some info. Both my cancers were medullary triple neg cancers. I was a transcriptionist in large USA hospital for 32 years and NEVER have heard doctors say the words apocrine breast cancer. You’re a very unique lady. I wish you the best. 

Hi Appleblossom, I found your post  whilst searching for more information about TNBC with apocrine features. I was diagnosed in May and I have struggled to find information about this subset . Currently having chemo and immunotherapy, with surgery planned in early 2025 . 

Hi Amber's mum

I'm so sorry about taking so long to get back to you. I'm having chemo and it's really sapping my energy and I find it difficult to find the wherewithal to engage my brain! I did loads of research but it's very difficult to find any information about apocrine breast cancer because I don't think it's actually out there. The main thing seems to be that it is very rare but that outcomes might be better than other TNBCs. It's so rare there are no protocols about how it should be treated so it's usually treated as a regular TNBC. I didn't have chemo pre surgery, but am now having it, TC on a 21 day cycle for four cycles.