Incurable mets in lower pelvis - what to ask onc?

[Ratepo]

My dad was operated last October where the docs found out that the one recurrent local tumour didn't turn out to be one, but multiple tiny scattered around the lower pelvis. They removed the most they could, but couldn't get everything.

Since then he's definitely incurable and the surgeon told us afterwards, that if they had knew what they would find when they opened him, they didn't know if they would have operated him at all. That was a huge blow to hear. However, fast forward to now: we had an incredible skiing holiday last week where you couldn't tell he was ill. The docs never thought he would recover so quick and well and now state that the operation definitely had result despite they could't take everything out. He feels much better now than before the operation.

So what to do next? He hasn't got chemo or other treatments. This Friday we have a appointment with the onc to discuss what to do. Does anybody have any insights or tips? This is very very difficult because nobody has the answer.

We know that chemo has normally less effect than in the liver, however it's not impossible of course. He has had some xeloda last year and xelox (about the same as folfox) in 2013, he had the max dose of radiation. The surgeon said maybe it's better just to enjoy life to the fullest and get back when problems arise. The surgeons could then make some sort of bypass so the colon won't get stuck in the tumour load. I know this certainly is a option, but somehow it doesn't feel good just to wait. My dad is still so strong and somehow seems to have 9 lives as we've heard several times that he had about 1 year left to live.

Although this is not a normal case I'd like to hear if somebody has any experiences with this and what decision did you make?

[weisssoccermom]

I don't have any real insight to offer. We did have a member, years ago in a similar position - although with no other mets. He opted for a very radical surgery called a pelvic exenteration.....which he regretted having done. Basically, and to put this in not so pleasant terms, they take everything in the pelvis out....basically the 'gut' the patient much like gutting a fish. Your dad would lose his rectum (although that is likely already gone with a permanent colostomy), his bladder which would require a permanent ostomy and his prostate and even this wouldn't guarantee that they could get all the mets out. We had a female member long ago who did a lot of surgeries but flat out refused this one as it was extremely radical with long recovery time, etc. If memory serves me correctly, surgeons don't like to do this surgery if there are other mets and your signature indicates that there are which is likely the main reason why the docs have not suggested this. In addition, the one or two people that I remember having this surgery also had other complications later with their other organs 'slipping' due to the lack of the bladder, etc. I'm also wondering if, like peritoneal mets, mets in the pelvic have a poor blood supply which would mean that systemic chemo likely isn't as effective.

While I certainly can understand your frustration and concern, perhaps it is best to allow your dad to heal, etc. and live the best life that he can right now instead of subjecting him to another surgery. While surgery may be off the table, perhaps chemo isn't and the onc may even suggest more radiation. Certainly it is worth asking about those two options.

Sorry I don't know anything else about this situation. Based on the little I know about the very radical pelvic exenteration surgery, I wouldn't push for that though. Good luck.

[texazgal]

My Dad was in a similar situation. When he was opened for colon surgery, they found spread to the liver. He did opt for chemo-5-FU and Leucovorin was what was used at that time. He had initial surgery in May of 1992 and died in Dec. of 1993. So a little more than 18 months of life after Dx. The chemo might have bought him a few extra months. Other than hair loss I don't think it was too hard on him, but I was not living near home at that time. It's a helpless thing for the rest of the family, tho. Prayers for you all.

[jhocno197]

What about HIPEC?

[Ratepo]

Thanks for your answers! Well weisssoccermom the pelvic exenteration is actually what my father had, that's why it's pretty amazing that 2 months after surgery he was skiing as if nothing had happened
Perhaps when the mets starts to grow they can remove most of the cancer again so he doesn't have symptoms anymore, but that's a long shot. And for now he feels great anyway. the surgeon advised that he could maybe just use the 'ostrich technique', just put his head in the sand as if nothing's wrong and we're more and more leaning to that. Hipec is for peritoneal spread, but there's no cancer there, it's just below in the pelvis. However I will ask the onc about it.