chemo and question about ct report

lisa42 said:

take comfort
Hello,

Sorry you're having to do this, but you came to the right place on this discussion board.
We've all "been there done that" and are of great help and support to each other.
Will you be on Folfox and Avastin for your chemo? That's the one they usually give first (although sometimes Folfiri). "Folfox" consists of oxalyplatin, leucovorin, and 5FU. If you search through some older posts, the side effects and "what to expect" for these, especially the nasty oxalyplatin, can be found. If you don't find any info, just ask away! We'll be glad to answer your questions or concerns.

Just one mass on the liver is actually not too bad. I had 12 to start with and they responded very well to the chemo. I had a liver resection also. One area of concern in the lungs- well, I guess they'll have to watch it carefully. If you start chemo and the area of concern in the lungs begins to shrink or goes away, then I guess you'll know what it is. Can they biopsy it to find out for sure what it is? Sometimes biopsies in the lungs can be tricky. I have numerous nodules in my lungs, but I've never had any of them biopsied. The fact that they've shrunk with chemo, grown back when I was off it, tells us that it is cancer. If yours stays exactly the same size during your chemo, then they could maybe determine that it's something else- something not cancerous. Lots of people supposedly have spots in the lungs that are not cancerous and aren't harmful.
Have you had a PET scan? If not, you should definitely request to get one done. A PET is different than just a CT because it "lights up" on areas of high metabolism, whereas the CT just shows spots and nodules- not if it's actually cancerous or not. If this spot lit up, then they would know it's cancerous. If it doesn't, then it may or may not be & then they could decide whether or not to biopsy or just watch it during chemo. All of my lung nodules have lit up, but then go to not lighting up after I have chemo for a while. Unfortunately, when I went off chemo for a few months, the next scan showed them lighting up again. This has to do with the level of uptake (or metabolic activity).

I want to tell you to TAKE COMFORT in the fact that the chemo can beat your nodules away! There are many, many people on this board who have become NED (no evidence of disease- the newer term for "remission"). Many of the people who have become NED had many tumors in several locations. You with just the one, or possibly two, actually have a pretty good chance of responding very well to your chemo and also becoming NED! DON'T believe the internet "5 yr survival statistics", as they are outdated and quite innaccurate & don't compare to people who are being currently treated. People in those statistics had to have been diagnosed and treated at least 5 yrs ago. Five yrs ago, they didn't even have several of the treatments that they have today. More and more oncologists are realizing that a stage IV diagnosis (which is what you are if your cancer is in your liver) does NOT have to mean "go home and get your affairs in order... you have X months left to live"- no more!! If you come into contact w/ a doctor who has that attitude- run the other direction! People are becoming cured and even the people who haven't been cured are living several years with the disease as just kind of a chronic illness that needs ongoing treatment and care. I was diagnosed two years ago and feel nowhere near death (there were a couple of times in there where I did, but I bounced back pretty well!) I'm a busy mom of 3 kids and do everything I always used to do (sometimes a bit more slowly, though). YOU WILL BE OKAY- there is hope!!

I'm sorry you experienced an uppity doctor on your consultation. I know what you mean. Fortunately, I'm happy with my oncologist. I experienced an uppity jerky doctor when I saw a rheumatologist lately, when I was suspecting that I might have arthritis. The moment he heard I had cancer, he treated me like dirt and like I was wasting his time. Sorry to get off the subject with that. Anyhow- not all doctors are full of themselves! Go to yet another oncologist for a consultation- it really is important to get more than one opinion- even more than two sometimes!!

Take care and best wishes-
Lisa