Carcinoid tumor in stomach

Ola Rdrunner -

My sister had a carcinoid in her lung (non-smoker) - she had one of the lobes of her lung removed. That was the treatment. She shaved off all her hair, went in for her post op appointment & ask when chemo would start. The surgeon looked at her and broke it to her that there wasn't going to be any chemo, but appreciated the "take the bull by the horns stance" she took by shaving her head!

I will think positive thoughts and prayers for you and your family getting through another stressful time (how old are your children?) & HOPE the job situation works out for you.

Post so we know how you are -

Patty

Ola!

It must have been non secreting, she didn't have any treatment other than follow up

As far as your kids, mine were older when I had surgery & chemo - 24 & 26. It was VERY stressful for them . I can't imagine how they would have handled it around high school age.

I am 2 years out from chemo (this month) & they went with me to my check up yesterday. We went to lunch to celebrate and had a wonderful time & very touching conversations.

It is so hard (for me) to take care of yourself & take care of your sweet kids & try to navigate in between your terror (that they don't know about) & them understanding what was going on and what was happening and them needing to do all those normal developmental phases they need to grow through all at the same time.

I wish you and your family the very best -Patty

I think you are taking the right path.

My sister had a carcinoid cancer, from her upper intestine, which had spread to her liver. She had a real big need to have control of situations, so of course, whenever she asked me my opinion, and I gave my opinion (I am a pharmacist), she would do 180 degrees the opposite, so I guess that would give her some sense of control over her situation. (For example, before she was diagnosed with cancer, she was over 50 and asked if she should have yearly or every-other-year mammograms. I said yes, so she decided not to get them because I had suggested it might be helpful. She did not have breast cancer, and we have mild family history of breast cancer. She did not want to make responsibility for herself or her financial or medical issues, such as not getting any health insurance or saving up anything for retirement.) So I learned to try to refrain from giving my opinion, or to give a very vague or guarded recommendations, so there was some hope she might make a path that might be more helpful for her.

I tried to suggest to her that it might be good to consider getting a surgical consult in addition to a medical oncologist; as you say, from the little I understand, chemotherapy is usually not the first line or initially recommended treatment for many types of carcinoid cancer. I do not know if her medical oncologist suggested surgery. I tried to tell her that if she was a candidate for surgery, that a medical oncologist would not do surgery on her. She opted to continue to only see a medical oncologist for years and got several courses of chemotherapy. (She was one of the ?majority that did NOT have any carcinoid crises.) She did end up getting surgery, but only years and years later, as a palliative measure, when it was certainly much too late to curing or removing the carcinoid cancer. I guess she just had a huge need to 'do it her way', and I had to respect her decisions because it was her life and not my decision.

I would only support your ideas to explore all the recommended treatment modalities with all the appropriate specialists (such as seeing a surgeon for possible surgical options if surgery is an option) to get the right treatment for you.

My sister never took care of herself (she had alcohol, smoking, weight, and possibly other drug abuse problems in addition), and when she was diagnosed she had multiple large tumors in her liver. Because of her intense alcohol use, I was not sure if she was a candidate for surgery, but she opted to not get a surgical consult to find out whether or not she could have surgery. She always hated for anyone to tell her what to do, so she usually didn't do whatever anyone recommended that she do. I don't envy her physicians.

You don't sound anything like my sister, of course.

I asked my oncologist at the time (this was about in 2008) whether her carcinoid cancer put me at higher risk of anything, and he said no. When I was diagnosed with LCIS, I saw a genetics counselor (in 2006), but since she said I had a low-risk family history, I did not get BRCA tested. This was a while ago, so I don't know if things have changed since then, and whether there is more/new information.

I sure hope that they have already found all your carcinoid cancer, that it can be removed completely with minimal surgery, and, of course, I hope all the best for you.