iowagirl

John….wow…things really do turn on a coin sometimes, don’t they? I just logged on and found your post. It sounds to me like you’ve had the ultimate “bad day, ” with the sciatica, car and scan news. I don’t know how medicine works in the UK, but I would push very hard to get that epidural for the back pain, to try to at least eliminate that from your concerns. The decision about the chemo has to be yours ultimately. Do you have options to get another opinion as to what treatments you might be able to receive?

Julie T.

I think Dr. Chapman at Barnes in St. Louis does. Not sure where else. Just going from memory of what I heard once.

Hello John, What a remarkable story you have and a remarkable story of survival. In the grand scheme of things, we look at back pain and think, “Oh gosh, what the big deal when I’ve had this major cancer thing going on, ” but reality is that back pain HURTS….and hurts a lot. Through all of my diagnosis, surgery, chemo and beyond, I have had a problem with my back and one thigh and hip area. I could not lie in bed at night without a lot of pillows and even then I woke up every hour to turn and the pain would hit again. My pain diminished in the hip and thigh area when I too had an MRI…..but, more likely mine got better because I had gotten a steroid before hand at night and morning in case of an allergic reaction to the contrast of a CT they had planned. The CT was cancelled in favor of an MRI, but the leg and hip pain reduced significantly. I had tried a lot of things, including months of physical therapy….but nothing made it better. I can’t imagine how contrast could release a trapped nerve, but there doesn’t seem to be any other explanation….and then there’s the old expression, “Don’t look a gift horse in the mouth.” ))) BTW, I recently started to use a product called Aspercreme (over the counter) which I rub into the areas of my back that have hurt. After everything we’ve tried, this seemed to do the best at alleviating the pain. One side has a muscle band that appears to get irritated and swell (I believe also with a trapped nerve) and when using the cream twice a day, it reduces the swelling. I now only use it once a day and even skip now and then, and the pain level has been pretty stable at about 2 on a scale of 1-10. Aspercream is a product with aspirin in the cream base which you rub into the skin over an affected area. It isn’t making it all go away, but it has made me more functional. I agree with the others….don’t concentrate too much on the C19-9 test as many things can make it go up. And…don’t dwell on what choices you made. You made them and now move on. Don’t look back, questioning your choices. Meanwhile, be happy that the back issue seems to have mostly resolved…..because having two or more major things to worry about at once just really sucks the energy out of you. And, right now, you need all your energy to live the life you’ve been given back…..to enjoy!!! Congratulations on the successful surgery and hopefully, permanent , easy fix for your back. We’ll be watching for your post about the MRI and blood test results. Good luck! Julie T.

Marion…thanks for this article. It certainly helped me and I’m sure it’s going to help a lot of others.

Just throwing in what I can here. I was told by my first oncologist that I had to start chemo before 12 weeks post surgery or “it wouldn’t work”. I had one chemo at the start of the 13th week, right after getting a port installed….and promptly threw a blood clot from my leg to my lungs, so ended up in the hospital during the time I should have received the 2nd infusion. I was told then that the chemo stayed in your system long enough that it wouldn’t matter that I missed the 2nd infusion of the first round.

Of course, we don’t know how much adjuvant chemo really does…..so if my cancer doesn’t return, we won’t know if it was because of the adjuvant chemo….or because there were no crazy cancer cells that broke loose and circulated into my blood stream.

I think it’s all somewhat of a crapshoot and the only thing you can do is weigh the odds. But, personally, if you are wanting to have the option of doing the chemo, I wouldn’t let a week or two past that magic 12 weeks get in the way of going ahead, unless your husband’s health is such that it makes it not possible anyway.

Juie T.

Aniket,

When I was first diagnosed with intrahepatic CC (5 cm tumor) late Jan 2014, and went to Mayo Clinic Rochester Feb 27th, they said that they were having some success with neoadjuvant chemo. However, I wanted the tumor OUT…and NOW…..and my surgeon made the decision as well to go ahead with the surgery. I have heard both sides to this question.
1. Doing neoadjuvant chemo could reduce the size of the tumor burdon and thus give better surgical margins.
and the flipside
2. Delaying surgery to do neoadjuvant chemo could result in the cancer suddenly starting to spread and in most cases, they won’t then do surgery.

My thoughts for myself were that:
1. The tumor was resectable….get it out immediately. I didn’t want it in there one minute more. That was the psychological aspect.
2. From the info I gathered, chemo only works on a percentage of CC and thus, the tumor/s could grow in that time or spread making surgery not possible when it was earlier. I saw no point in waiting to find out.

There are times when people have chemo and it is successful in reducing the size the tumor or tumor burdon enough to allow for surgery when it wasn’t possible at all at first diagnosis. In that case though, there really is no question as to whether to go ahead with chemo….as that is the only alternative other than doing nothing. There are some on these boards who have been in this position, had a reduction in the tumor which allowed for surgery.

Again…my case was really kind of a no-brainer. I had no elevated tests…everything was normal…there was no CA 19-9 elevation or bilirubin elevation. (I had no symptoms at all) My PET was negative for anything suspicious anywhere else. The tumor was resectable and that was obvious from the beginning and it was in the outer reaches of the left lobe away from anything, which in surgery allowed for a 2.2 cm clean surgical margin. The decision in my case to go ahead with surgery was the best for “me.” When my oncologist at Mayo saw me again at the end of the consult day, he had spoken with the surgeon….and said to me, “Well, you got the surgery you wanted.” I got the distinct impression that maybe making my wishes known to the oncologist had a little bit of a push toward forgoing the neoadjuvant chemo and just proceeding with surgery immediately. My surgery was the next day at 1 p.m. I am currently 1.5 years post surgery with no reccurrence yet. I was staged at T2b which was a fairly early stage for intrahepatic due to finding the tumor by chance after seeing my GP for something else.

Hilar CC is different than intrahepatic CC and I don’t have any data on Hilar to help you, other than suggesting that you might seek another opinion, but the clock is also ticking during that time as well. You didn’t mention who your father’s doctor is or where, but make sure that they are with a large medical center that has the most experience with CC. There aren’t that many. Second and third opinions are often a good idea when you have doubts and questions or there is a discrepancy in opinion.

Julie T.

Lucky,

This is indeed an overwhelming situation having CC. I had intrahepatic CC with a 5 cm tumor and one smaller one about a quarter of an inch in size. I did adjuvant chemo after the resection on Feb 28, 2014 (at Mayo Rochester) and ended chemo August 27th, 2014 after 6 rounds of Gem/Cis. I did have an offer from a relative to go to the Mayo (south) and stay at their house for as long as needed, but I opted to go to Mayo (north) Rochester because IMO they are clearly the experts when it comes to this disease. It would have been nice to go to Mayo South, because it was warm there…..and it was 19 degrees below zero in MN at that time, but Mayo north was a 3 hour drive and a better place to go IMO.

My liver enzymes were normal before I was diagnose. In fact, I didn’t have anything that was out of the ordinary in my blood tests at all. After surgery, my liver enzymes did go up….and then chemo seemed to either make them go a bit higher or keep them up. It wasn’t until this last July at my Mayo consult that my liver enzymes were all back into the normal range. All were nicely tucked into the middle of the normal ranges except for the AST which took longer to come down , but it has now broken into the high end of the normal range and I expect it will be even better in November when I return to Mayo for more scans.

I second what Lainy just said about getting another opinion from a top rated institution such as MD Anderson or Mayo at Rochester, MN., along with some other places like Sloan Kettering, etc. This is a very rare cancer and thus, there aren’t that many places which have oncologists or surgeons who have much experience with it. Even at the biggest and best, it is still a rare cancer and thus the lesser instituions just don’t have enough experience to know anyway to treat CC other than the basic old standard treatments. While your PCP may have “been” an oncologist, it’s unlikely that he has stayed on top of even the more common cancer treatments, let alone something like CC.