Connect
← Return to Going my way: Decided to stop cancer treatments
Discussion
Going my way: Decided to stop cancer treatments
Breast Cancer | Last Active: 7 hours ago | Replies (100)Comment receiving replies
@nannybb The original diagnosis was a neuroendocrine tumor in the breast. But there were four conflicting pathology reports. My oncologist and I both decided to go with Mayo's assessment of NET. It was aggressive, rated a 3, estrogen positive and human growth positive. A NET specialist said it could not be treated as a NET but as ordinary breast cancer (the general consensus). It was never staged. My oncologist had never seen this, but the radiologist had seen something similar so I did do radiation along with lumpectomy and now letrozole--which I find totally fine (many do not). I didn't do chemo or immunotherapy due to co-morbities and as my nephrologist would not sign off on most of the suggested infusions. It's been a great four years! I don't consider myself "cured" but am content for now.
Replies to "@nannybb The original diagnosis was a neuroendocrine tumor in the breast. But there were four conflicting..."
@mir123 I am so glad you mentioned your experience with NET tumors! This is the first time I've seen anyone write about having breast cancer along with Neuroendocrine Tumors, & had "conflicting pathologies." I was found to have NET tumors after 10 years of facial flushing that no doctor diagnosed when asked about it. So I went in for a PET Dotatate scan in early 2023 which showed numerous NETS in various places; but it also showed a "shadow" in my rib cage, which a breast MRI said was a recurrence of BC from when I was 43. Not small, 9cm, but it hasn't metastasized elsewhere. So I've been getting Octreotide shots since then to stop any new NETS. I've tried 4 different hormone blockers, & it seems one of them shrunk it to 7cm, but side effects from them were too much to bear. I cannot have radiation unless it shrinks to about 3 cm., and chemo sounds horrible (again.....had it at 43). I'm now wondering if that tumor could really be a NET tumor! If so, I could skip the H-blockers, that have totally messed up my blood pressure & leg circulation. Anyway, I'd love to know if you also are on Octreotide or other NET drugs? Also, I see @nannybb has a similar story with lung NETS, so would love to hear from her.
Thanks to you both for adding these details to your BC story! ~ Patty
Connect
@mir123 I'm with you on the "conflicting pathology reports." I had the same problem, but for lung NETs. Do you happen to know if your doctor ever mentioned the drug tamoxifen? I looked up the med. you are taking and it seems quite similar, at least in how it works and possible side effects. The breast cancer that runs in my family is rare but obviously in the family gene pool. (two generations so far) I am trying to stay current with information on all new protocols for breast cancer because of the obvious. Thank you for any information. Blessings 💕