Stage IV 2nd Opinion Question

Runnergirl04

My husband was recently diagnosed with Stage IV colon cancer with some omental implants. The primary tumor was removed but only some of the omental implants were removed for biopsy and 19 of 24 lymph nodes were positive. A followup CT showed one possible irregular nodule in his lung but can't be confirmed as mets --even the report said could be scarring and to watch. We first visited a surgical oncologist who told us it would be chemo first and if contained, then surgery, possibly HIPEC, would be a possibility. We then visited the medical oncologist in the same hospital who will only consider palliative chemo for life. Doesn't give us much hope. All the research (and even long-term survivor stories on this forum) shows that chemo and then surgery is my husband's best chance. We want to seek a second opinion and are considering Duke (in our home state), MSK, or MD Anderson. Experiences with these? If we choose an out of state facility, how do chemo infusions work? Do we have to travel or can we get that closer to home. Any insight is very appreciated.

beaumontdave

Welcome, Runnergirl. I don't have any experience with the choices you and your hubby are facing, but many others have, here. Clearly starting the chemo is paramount to checking the speed and spread of the mets, and the response from treatment will determine the direction from there. The blog here has had folks with extensive spread, being able to achieve a NED status and maintain it for over a decade. Some have even better results, but I don't want to overstate or misstate another's experiences, so I'll wish you both the very best of outcomes, on your search for the best treatments and programs, and hope others can bring their specific knowledge to you, or that you can find those conversations in the archives.................................Dave

Pamcakes

https://csn.cancer.org/discussion/326250/stage-iv-2nd-opinion-question

When my husband was diagnosed in 2017, the oncologist at home said chemo for life. We live in WV and decided to go to MD Anderson. Amazing experience and my husband had 4 surgeries between 2017 -2021 there, we even had to live in Houston for a few months at one point. When the last reoccurrence happened ( 12 liver Mets, 3 lymph nodes and a bile duct) the surgeon and oncologist at MD Anderson wasn’t totally comfortable with the surgery. So we first tried Cleveland Clinic. The surgeon said, absolutely this can be done, it will be a very hard surgery sand recovery will be hard, but I can do it and he did! MSK was going to be the next stop if Cleveland Clinic couldn’t help. While most of the surgeries have been completed out of state, chemo over the years ( sometimes 12 months in between chemos) have been done at home. It took some work and time, but I found a great local oncologist who was willing to let MDA and CC take the lead and direct the care. My biggest advice, advocate and find a team you are comfortable with.

Runnergirl04

https://csn.cancer.org/discussion/comment/1703972#Comment_1703972

Thank you, @Pamcakes. This does give me some hope and motivation to get a second opinion at a major cancer center. I do have one question. Did you immediately get a second opinion or change hospitals, or did he start his chemo in your hometown and then get the second opinion. My H is slated to start chemo (Xelox) next week (was supposed to be THIS week but the Xeloda was not ordered/approved so a wasted trip, but that is another story). I feel like the sooner he starts the chemo, the better but def going to seek other options beyond that. My motivation is my husband's face when he asked "how long will I have this port" and he said "forever." He is usually very positive and upbeat but this was a disappointment.

Runnergirl04

https://csn.cancer.org/discussion/comment/1703972#Comment_1703972

Thank you for your encouragement in telling your husband’s story. It’s sad we have to advocate so hard. How do you find a local oncologist who lets a major cancer center take the lead? We have an appt with MSK next month.