Just diagnosed: Surgery not an option, looking for hope

@colleenyoung
The scan showed that the metastases have shrunk, the second scan showed the same. The main tumor itself had shrunk a bit too. Now I also suffer from reflux, it keeps me awake at night most of the time. I wish I had the money to try other treatments besides chemotherapy

@isokenka please don’t give up on other options ! Maybe consult with a surgeon ? Wishing you relief soon ! Reflux untreated can make things worse down the line.

@cliffe75
This is the result of examining tissue at the MD Anderson laboratory.

Rectum, mass, biopsy:
INVASIVE, MODERATELY DIFFERENTIATED ADENOCARCINOMA. (SEE COMMENT)

Comment
Immunohistochemical studies were performed at the outside institution and reviewed at MD Anderson. The tumor shows preserved nuclear expression of MLH1, PMS2, MSH2 and MSH6. Therefore, the likelihood of defective DNA mismatch repair/high levels of microsatellite instability (MSI-H) in the tumor is low.

I also had DNA analysis done and there was nothing significant found that would benefit from targeted therapy.

@sbelyea

I was told by two oncologists that they estimate less than 5 years for me and closer to 3, and that's with treatment! I can't imagine life expectancy without treatment if that's the case. I was told initially by a colorectal surgeon that surgery, "wouldn't benefit me," and later told by others that it was likely due to the mets to liver and both lungs as well as wanting to start chemo immediately which they did.

I have had one second opinion from Moffitt Cancer Center, and at the time she agreed with the treatment plan of palliative care and FOLFOX w/Mvasi every 2 weeks. I went through 11 treatments, developed fairly significant neuropathy in the process, and cancer was deemed stable in July of this year. I remain stable and continue to receive maintenance chemo every 2 weeks. I have another second opinion appointment scheduled at MD Anderson in March. They have reviewed all labs and scans, and performed their own tests on tissue samples (results as above). They will also repeat a CT scan and maybe a PET scan, I'm not sure at this point. The idea of getting another second opinion from them is to see if they agree with my current treatment plan, and if there are other options or treatments that they would recommend. So, that's where I'm at so far.

@tiffbrueggeman

Rectum, mass, biopsy:
INVASIVE, MODERATELY DIFFERENTIATED ADENOCARCINOMA. (SEE COMMENT)
Comment

Immunohistochemical studies were performed at the outside institution and reviewed at MD Anderson. The tumor shows preserved nuclear expression of MLH1, PMS2, MSH2 and MSH6. Therefore, the likelihood of defective DNA mismatch repair/high levels of microsatellite instability (MSI-H) in the tumor is low.

The tumor was genotyped and nothing significant was found that would benefit from targeted therapy.

@florip

I am scheduled at MD Anderson in March for another 2nd opinion. I'm hoping they will have some other treatment options than what is currently being offered in Evansville, Indiana.

Earlier in my treatment, I met with an oncologist from Moffitt Cancer Center for a 2nd opinion. She agreed with the treatment plan of no surgery and FOLFOX chemo which is what I did for 11 cycles. Cancer is now stable, but surgery, "will never be an option," is what my local oncologist told me. I'm hoping my second 2nd opinion will offer something more.

Colonoscopy last December. The doctor doing the test said the tumor was at the rectal/sigmoid junction and was typical cancer presentation. Biopsy confirmed it. I was admitted to the hospital a few days later with significant abdominal pain, and they did a PET scan which revealed stage IV - mets to liver and both lungs. I had a liver biopsy which was the rectal cancer and not a new cancer.

After 11 rounds of FOLFOX, the cancer was deemed stable, and I've been on maintenance chemo since. CTs have shown shrinking of the main tumor and some of the mets.

@dnfjc

Debulking surgery was never offered. One oncologist told me that, "surgery would never be an option." I have rectal cancer with primary tumor located at the rectal/sigmoid junction, stage IV with mets to liver and both lungs. I have people that I talk to, friends and family, and this forum has been helpful as well. I am on a palliative trajectory. I have met with the social worker, and I will meet with her if needed. I talk with my treating oncologist about side effects, etc. So far the only real side effect that has affected my quality of life is the neuropathy. Fortunately some of it has faded from my hands, but remains in both feet. It is numbness, not pain, but it has caused me to fall a couple of times because I was not exactly sure where my feet were and ended up tripping on them. I have also smacked my toes into furniture and walls again not knowing exactly where my feet were; that's been frustrating but I get that it's a common side effect.

@vcsongradi sometimes people on palliative care do very well, beyond docs expectations…and then have better options for care…wishing you the best.