Oncologists Opinions: How many did you see?
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Thanks so much for your responses and participating on this website. I hope more people afflicted with this cancer or family members join. It is so important to share experiences and offer support. All of us hate it, but need hope to survive and get through this.
Marion: the second oncologist actually said SIRT would not be beneficial and offered stereotactic radiation (sorry, my mistake, it’s not radio embolization)
This is an extremely difficult situation I have encountered in life, and at this time we may not select a treatment plan. As I have learned in such a short time, decisions, situations change, so maybe or maybe not this will change. I hope more clinical trials are offered with more funding for all patients, and not denying anyone, where there are alternatives to chemo.
positivity…..I hope that other share in and answer your questions regarding how may opinions and what treatment chosen.
The way I see it, SIRT is mentioned by all three specialist.
1. prefers to address the anemia prior to application of chemo. He did not mention the protocol, but SIRT would be included.
2. SIRT and Xeloda. This specialist is taking the stance that taking on the cancer and addressing the anemia with blood transfusions , if indeed your Mom can’t tolerate the treatment.
3. Gemcitabine/Cisplatin and possible SIRT. This specialist prefers to address the cancer with the most used treatment protocol, while leaving open the option of SIRT thereafter.
As there is no standard of treatment for this cancer, physicians choose the best available option for their patients, based on their experience.
Hugs
MarionAlso, let me add initially had gone down to slyvester cancer ctr miami fl and they wanted to do chemoembolization as first treatment but due to an insurance snafu we couldn’t go there which we view as it turned out as OK because we ended up with y90 as first line of treatment. We believe the y90 was a big factor in the shrinkage and necrosis of tumor not to say chemo hasn’t been helpful but we’re glad we did it first.
Good morning to you both, middle sister and positivity,
My husband had y90 as his first treatment by his exceptional IR here in south florida in the Healthcare system we have locally and the one my husband also happens to work in. He had it soon after dx which was June 14 2016. His post symptoms after y90 were practically nonexistent and went back to work the day after or 2 days after treatment. After that we flew to MD anderson and consulted with them and followed their protocol for gem/cis which was started july 28th 2016. His 2nd petscan sept 30 showed no light up. 11/3/2016 mri with contrast showed remarkable response with shrinkage to large 10+ cm tumor. 12/21/2016 had 4 phase cat scan and had alittle more shrinkage. He has had 12 chemo treatments every 14 days. He tolerates well, some fatigue about 5th post chemo day then bounces back. Labs good. Good appetite, still working. He still may not be a candidate for surgery but we are grateful for results til now. I am an RN and felt MD Anderson was the right choice because although we are being managed well by our onc here they really didn’t have the experience with choliangiocarcinoma to know exactly what chemo and amount have chemo or schedule to follow. Hope this helps some. BTW, he is 60 yrs old. Also to add, after return from MD Anderson he has 4 satellites smaller than 2.5 cm obliterated with RFA. Post symptoms with that, alittle more uncomfortable.Good morning,
The good news is they all agree that SIRT (which is a radioembolization) may work. Although not the norm, my Mom has had 2 years of treatment-free living since having it done.
I’m not a doctor, so can not speak to the anemia. If it was our family, I would look at the experience of the doctor/center, but also take into account how I felt when consulting with the doctor; did I feel like my mother was being treated by someone who was confidant (and ideally had people skills too). We only went to the one hospital, but did have the ONC and IR disagree at times on how to progress. We felt right with the IR doc and went with the more aggressive treatment route. Her ONC didn’t want to give her xeloda in conjunction with the SIRT, but she was finally won over to support and prescribe.
Best wishes,
CatherineI saw 3 oncologists for my mom’s intrahepatic CC, and 3 totally different treatment plans.
If you haven’t read other posts, she also has chronic anemia, pre-CC diagnosis.Here are the opinions of the 3 oncologists.
1. Unless he knows source of anemia , does not want to use chemo as that can make her worse and therefore her anemia worse. So we need to take care of this first. Also, SIRT would be a good option for tumor.
2. Xeloda and radio embolization since it is a localized tumor, and wants to start chemo right away and not to wait. The anemia is okay and can give blood transfusions when needed.
3. Gem/Cis and possible SIRTI’m not pleased with such differing views, and wonder or doubt if a couple of these are not good decisions. Unfortunately, again it gets back to the rare cancer and they just try what is common with a chance of working or not.
How many opinions have you received, and what decision did you make on the best treatment plan?
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