iowagirl

Duke….same question I had for my doctors and never got an answer. They just said there was no way to really know. That wasn’t good enough for me…but was the best I got from the doctors.

Porter…….go out and enjoy ….your family….your life. So happy for you.

Julie T.

Willow….will be praying for good labs.

Rob, I was in sort of the same position as you. My tumor (also 4.3 cm) in the left liver lobe was found incidentally and all blood tests and marker tests were also negative. My surgery had similar results to yours..no mets to anywhere they could see and l. nodes were clean., extra wide clean surgical margin, no neural or venous invasion. The only thing I don’t know for sure is if the tumor was was you called, “encapsulated”. I’m not sure exactly what that entails. The tumor was totally within the liver though. By the time it was resected, it was 5 c.m. x 4 x 4. The main difference between the two of us, is that one pea sized tumor was also found…which they called a “sister” tumor….and made a big deal that it was not a satellite tumor.

My Mayo oncologist wasn’t pushy about chemo….but said if it were one of his own family, he’d be pushing for them to have it after a situation like mind. My Mayo surgeon said very strongly, ‘You ARE doing chemo…..we don’t do this operation without chemo.” My husband wanted me to NOT do chemo based on what he’d read…but after he heard the actual stats on this cancer returning, he changed his mind. I had already made up my mind before even talking to the oncologist.

While I would have LOVED to have forgone the chemo, I just could not leave that stone unturned. I realize that there are potential life long side effects that could happen, but right then, I had an overwhelming fear of the cancer returning…..and though there are no promises that the chemo works either, I wanted to give it my best shot while the cancer (if any remains) is possibly microscopic and perhaps easier to kill off.

So, I opted for chemo….Gem/Cis on three week rounds….4-6 rounds being the standard treatment. I’m half way through chemo now…..and I won’t tell you it has been a bed of roses, because it hasn’t. The actual side effects have been tolerable, but there were other issues that came along with chemo that have been not so much fun at all. I am looking forward to the end of the chemo and just pray that we’ve taken care of things and the cancer won’t come back. Oh, for a crystal ball.

Julie T

Patricia, I echo what Gavin has already said. Our thoughts and prayers are with you.

Julie T.

Wonderful!!!!

When I applied for social security, I also applied for disability based on my ICC diagnosis, surgery and chemo treatment. The claim was expedited, but I was rejected for disability with no explanation other than I could appeal. Since my husband has now decided to retire, in two months, I will be bumped up to the spousal rate, which is actually about $10 more than disability. Still, it was somewhat of a shock. I haven’t been able to work since January due to all the testing, surgery, recovery, blood clots and now chemo, and a diagnosis of ICC,, but that wasn’t enough. I’m “guessing” that since I had surgery, it puts me into the category of being “cured” until maybe the cancer returns and staging changes. Of course, I”m hoping that doesn’t happen….and with the dollar amount for me being similar…now with my husband’s retirement on SS effective in August, it seems to be a no-brainer, but for someone who isn’t of retirement age as I am, it could be a real issue. The only thing I will miss out on….by just doing the social security will be being able to be on Medicare at age 64. However, since we have a good retiree’s insurance plan….which is basically the same plan we’re on now, I think we’d rather stick with what we have anyway as we have great leeway in where we go for medical care with this plan. But again….for someone now in our position, the denial of disability benefits for ICC for someone with my profile, this may become a big financial problem. I would appeal, and fight for the disability designation, just to get it done for others to come, but right now, it’s all I can do keeping my head above water with the chemo and family obligations. Maybe I will give an appeal a try in July…..before the 60 day deadline…once I get past all the family stuff going on in June.

Patty,

I’ve been trying to find the time to actually call you…though right now, I am hoping I wrote it down on a card instead of having to go through all the posts on the discussion board. I know yoiu left it for me one time while I was having the blood clots issue.

Well, this is just smashing good news….I am so thrilled for YOUR test results, which sound over the top good in every way. Then to add icing to the cake…..Dr. Javie’s remarks about immunitherapy for CC is just fantastic. We’re all waiting. Even though right now, it isn’t something for me since I don’t have any “known” tumors right now, you never know with this cancer….and for all my family of friends here on this forum who might benefit from this new therapy……I’m praying that it becomes a reality sooner than later. There are several other therapies out there that are getting ready to move into human trials….and one has great promise for a lot of “solid” type cancers like ours. Hope is on the horizon…..CURE is on the horizon.

For today….Patty…..big, big hugs for you……you have to be over the moon happy.

Julie T.