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Going my way: Decided to stop cancer treatments
Breast Cancer | Last Active: 3 hours ago | Replies (100)Comment receiving replies
@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
Replies to "@mir123 I am so glad you mentioned your experience with NET tumors! This is the first..."
@jardinera25 Dear Patty, I posted about the type of BC that runs in my family. It is rare. It has been in two generations so far, so I've always paid for the best medical supplimental insurance I could find, just in case.
I never in my wildest dreams thought I would have lung cancer - NETs.
I found it interesting that (if I understood you correctly) you mentioned to your doctor your having flushing etc., and it was ignored. I also had that experience. Makes me wonder how long I may have had the actual cancer.
I saw my GP this last week after finding I now have a heart condition. Upon research, I read 50% of NETs pts. have cardio involvement at some point. That seems hugh to me, so I am going to bring it up to a cardiologist, as soon as I am given a new one.
If you are asking about the shots, I also posted some where in here, I was on the self-administered 3xs a day version. It relieved the flushing and the phlegm in my throat, but made me tired. My NETs specialist doc. said that could not be true. "Many many people on the shot with no complaints of fatigue." He is wrong. It is listed in the PDR as one of first side effects. He then put me on the once a month version. I could not tolerate what it did to my intestinal track, and it made me bed ridden with fatigue. I'm off of both right now until my oncologist can review my last PET scan. He was not convinced I had DIPNECH. I will say however, off the shots, the flushing and phlegm have returned...🤒
Also after asking a few questions, I have come to realize my GP knew absolutely nothing about NETs, DIPNECH, or the symptoms involved. It explains why she brushed off my initial symptoms, and did not send me to OSHU right here in Portland to begin with. It can be a very disheartening journey because of ignorance on some peoples part. She saw my initial biopsy. It would have been nice if she had done further research before referring me to "just any" surgeon.
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@jardinera25 I'm sorry to hear of your difficult and complicated situation. No oncologist would treat the NET tumor as anything other than "ordinary breast cancer." I had hoped it could be treated as a NET, but it cannot. I was turned down as a NET patient at University of Utah and at UNM was referred back to breast cancer department. So this was a learning experience for me--NET in breast is not treated by NET specialist. The tumor was estrogen positive, so I have been on letrozole going on four years with no ill effects, thank goodness. It has been very confusing. Has the tumor in breast been biopsied? NET should show up on biopsy.