Original colon cancer spread to peritoneal

[FindTheBestHelp]

Having had colon cancer approximately 4 years ago, with surgery to remove the tumor (which required a total colectomy), some lymph nodes, followed by 6 months of chemo (Folfox - last 2 months a bit toned down due to the toll it was taking), about 1.5 years later, CEA started creeping up from 1.x to eventually 6.x, when a tumor was found in approximately the same area as the original colon cancer. It was in the right abdominal region surrounded by tissue and said not to be touching any organs. Original diagnosis was 3c but is said to be 4a now because it has spread to peritoneal, even though it's in the same general area as the original cancer.
The 2nd sugery happened this June and there were clear margins per the surgeon after the pathology report. But the oncologist made a remark saying "but it was up against <something>" and nothing could be done about that.. not sure what that means.. against the stomach lining/barrier?

So with the tumor removed, the oncologist said there's no known effective chemo other than Folfox and if Folfox was used 4 years ago and there's been a recurrence, it suggests that there are some cancer cells resistant to it now and it's not going to be effective a second time around. I'm wondering if that could be said so conclusively without further testing to confirm? What about alternate treatments? the oncologist is of the opinion that after surgery the only thing we can do at this point is wait and see.. she also said another option down the road is immune therapy, god forbid that the cancer should come back, but if qualified as one of the few candidates for immunotherapy, why not try it now rather than wait for the cancer to possibly grow back or go elsewhere?

Trying to get a 2nd opinion from Sutter oncologists but they said they can't see Kaiser patients on MediCal because it's a low income program and paying out of pocket could jeopardize one's coverage possibly. I need to look into this further and how to get around that because it doesn't make sense to limit patients to who they can get 2nd opinions from out of pocket.

I'd really appreciate if you kind and knowledeagble members could please provide your input and advice on these 2 areas of concern above.

Thank you in advance!

[stu]

Hi ,
I am really sorry you had to have more treatment .
I don’t understand your oncologists take on chemo . I understand it’s role is better on fast growing visible tumours and less effective on microdisease . My mum used the exact same chemo to treat a recurrence six months later and got an excellent response both times . If it’s to treat microdisease then it becomes more difficult and my mum never was offered post op chemo on that bases as they wanted to stock pile her chemo options . However that was quite a while ago and more people seem to get it so I would look at research articles and see if their is more evidence now to back up post op chemo .
Hope you get more help .
Kind regards ,
Stu

[rp1954]

The 2nd sugery happened this June and there were clear margins per the surgeon after the pathology report. But the oncologist made a remark saying "but it was up against <something>" and nothing could be done about that..

Read my archived comments on blood testing and oral (immuno)chemo, extending Dr Lin's ADAPT protocol potentially with things like cimetidine(CA199?), aspirin and PSK, as well as a lot of supplements. You don't have to sit in the street waiting to get hit by the bus.

Immunochemo has two prongs, digesting existing masses, and stopping metastatic stem cells from spreading or repopulating tissues. Continuous oral chemo can pick off things that cyclical chemo misses or cancer cells are resistant to. We've made it work for over eight years.

[FindTheBestHelp]

Thank you both for your replies. If anyone else has some input or advice, I hope you please share... I would be grateful to know if I have other options because the current oncologist is taking a wait and see approach and I am wanting a 2nd opinion but feel trapped because of Medicare restrictions on seeing other hospitals out of pocket.. it could result in losing Medicare coverage is why they say they can't see me. But for something as serious and a matter of life and death like cancer is, it doesn't make sense that a relative or family member who would help pay for the 2nd opinion can't do so...

What would it cost to pursue some of the things mentioned above so far? I can get a 2nd opinion from another Kaiser oncologist without issue or risk to medicare coverage but would really like to freedom to seek out an opinion outside of kaiser. the reason being the possibility fellow kaiser oncologists veer away from contradicting each other.. i'd rather get the "straight scoop" and be informed of all options..

[rp1954]

Subject to whatever deductibles and copays, I would think Medicare coverage would handle capecitabine (generic of Xeloda), celecoxib (generic of Celebrex) and maybe cimetidine pretty easily but talk with other Mecicare patients. Also cross border may have some advantages.

I would get some of the extra blood testing like CA199 and LDH done at least once and discuss it.

[betsydoglover]

MediCal or Medicare? Either way, if you want to self pay, then there is no way MediCal would know, right? It seems like just taking your $$$ and paying should work without any insurance co involvement (unless you are trying to get this to apply to your deductible).

Good luck - in advanced cases like this, second opinions are always a good idea.

[boxhill]

I'm not familiar with Medi-Cal or how Kaiser does things, but it isn't clear to me why your oncologist wouldn't consider another round of chemo.

I know they are concerned with cancers developing resistance and so forth, but still...

A second opinion sounds like a good idea. If you can pay for it out of pocket, by yourself or with help, couldn't you go outside of the Kaiser system?

Do you have information on the pathology of your original tumor and on this one, regarding mutations, MSI or MSS, etc? Certainly that would have a bearing on possible treatments.

I am MSI-high, Stage 4, but with no known masses. I have wondered why I can't just go ahead and have Keytruda along with the adjuvant/mop-up FOLFOX I'm having now, but it seems I'd have to be part of a study to do that, and such studies right now all seem to be for Stage 3. The consultant at Dana-Farber said he could get it for me, but both he and my local guy seem to think that keeping it in reserve should the cancer reappear is sufficient. And of course there is the issue of whether my insurance would pay for it, since it isn't FDA approved as a first line drug.