I'm an advocate, but not sure I'm doing enough

MFS74
MFS74 Member Posts: 8
edited March 2014 in Colorectal Cancer #1
Hello everyone.....first off, thank you to all the people on this board who have been so inspiring. I joined a few weeks ago when my father was diagnosed with Stage IV colon cancer. I took my father home from Mt. Sini this past Friday after 11 days. Prior to discharge, we met with the surgeon and the oncologist to discuss the next steps for treatment. The plan is to start chemo on June 30th (5 weeks post surgery). The hope is that chemo contains/kills as much as possible and then perform the next surgery which would include a partial stripping of the peritoneal cavity with heated chemo. I've got consultations with medical oconlogists from Sloan and Cornell Weil on 6/23 & 6/24. It turns out that other doctors won't see my dad once he starts chemo which is a new thing I learned today. I also learned, that at this point, the surgeon is in the background waiting on the treatment provided by the medical oncologist. Although, I'm new to this, the treatment proscribed sounded pretty progressive, however I wanted to get multiple opinions. I also wanted multipe opinions on the type of chemo drugs to be used (5-FU, Avatrix, Leucovorin) from other doctors as well. It's June 8th and I realize my father will be just two weeks removed from surgery tomorrow. I hate the fact of waiting another two weeks with no real activity. Is there something else that I can do? I got a real good feel from the surgeon we dealt with, but didn't feel a great connection with the oncologist. I just felt like there should more discussion outside of healing up and showing up for chemo. I'm clearly a type A personality, but just wanted to hear any other thoughts or recommendations. Many thanks. Mark

Comments

  • kmygil
    kmygil Member Posts: 876 Member
    Good Advocate!
    Hi Mark,

    It sounds like you are really being a great advocate for your Dad. I know a Type-A personality is who I would want advocating for me! Is there any way you can get your other consults moved up before your Dad starts his chemo? I'm not sure why they would decline to see him after he starts chemo, unless it's one of those things where they would want to be in full control of the regimen from the beginning.

    As for waiting for the chemo to start, your dad does need a chance to heal from the surgery before starting. Chemo suppresses a lot of the immune function, so they want him to be as closed up as possible to minimize the possibility of infection from his surgical site.

    I personally did 5FU and Leucovorin. 5FU is a very old, very reliable cancer drug used to treat a variety of cancers. The only problem is that it's cancer killing life while in the body is short-lived. Hence the leucovorin; it boosts the efficacy of the 5FU while it is in his system. The 5FU/leucovorin combo is very standard in treating colon cancer. I see they are not adding oxaliplatin but Avatrix. I have no personal experience with Avatrix since my cocktail was with oxaliplatin.

    I understand why you would have a good rapport with the surgeon--most of them tend to be Type-A's also. Oncologists vary in their personalities. But if your dad is Stage IV and can tolerate it, an aggressive approach is better than a tentative one. Definitely try to get your other consults moved up; it is crucial that you feel good about the oncologist who will be administering treatment. How did your Dad feel about the oncologist? Did you go in with a list of questions and did he/she answer them fully? If not, you should definitely find someone who will answer everything you can throw at him or her. Second and third opinions should not threaten any doctor who feels competent at what he/she does.

    Well, those are all my thoughts on this for you tonight. I will keep you and your Dad in my prayers. Keep us updated and try to get those consults moved up!

    Hugs,
    Kirsten