It's pretty official, theres a cancerous tumor in my abdomen. It's big. I feel one side on my stomach and the other on my back. I thought they were two separate ones at first, but the doc says that the CT scan said it was one big one. They cant take it out (though I'm wondering about the possibility of cutting as much as possible out and killing the rest with chemo) so I will have to be on chemo at some point soon. I'm going to UCLA, so I'm hoping they might have different techniques that don't involve chemo, but the chances of that are slim it seems. I think my dad had the same kind of thing (when he was 40) and went on chemo, but had very few side effects, so I REALLY REALLY REALLY hope I inherited that from him!

Anyway, it seems like its going to suck anyway... But my GI doc (havent talked to the oncologist yet) says that desmoid tumors respond well to chemo so thats good.

Oh yeah, and on top of this, my car broke down, and I'll have to take a lot of time off to see different doctors and possibly lose my job. Great. Just great.

BUT I found one good thing! It's a pretty good thing, too - Desmoid tumors don't metastasisize (sp?)! So if we can find something that works to kill it, I don't have to worry about it spreading. Huzzah!

This message has been edited. Last edited by: mjmr89,

Hey mjmr89.
You are young and obviously a fighter which will help you get through this next hurdle.
I wish you all the best with your treatment, and keep us posted.

So sorry to hear about this! You do sound like you're ready to fight this though. I wish you the best!

I'm a little confused though and trying to learn more...I thought by definition that a desmoid tumor was non-cancerous. Is that not true? I know they can be effectively treated with radiation and chemo, but I thought that the reason it didn't metastasize was because it wasn't cancer. I also don't know anything about FAP, which several people talk about on the site. I also thought that also was not cancer related.

Your input would be appreciated!

Sorry for your news. Cancer treatments have improved dramatically over the years. I had five months of chemo and drove myself to and from... never was ill. Just tired by the end of the week. But there are several different kinds that will affect everyone differently. Good luck!

I'm so sorry you're going to have to go through all this crap. And damn that car. I hope all treatment goes as smoothly as it can and takes care of everything that it's supposed to.

kathy

Thanks for the well wishes Everyone I've talked to says chemo has changed a lot in 20 years. I also like to think that I am going to one of the best places for this, UCLA. Though it sucks that it is 8 hours away

Sorry this is turning out to be a much bigger deal than you first anticipated (when you thought it might be a hernia). But, you are right that there is a silver lining, in that these tumors can pretty much disappear with chemo. Since low dose treatment is typical, there is less chance of bad side effects.

FAP is definitely cancer related, as this leads to colon cancer if left untreated. Desmoid tumors are associated with FAP and can be triggered by surgery. While technically they are benign because they do not metastasize, they can be locally very aggressive into nearby tissues, and the treatment is essentially the same as a cancer, with surgery, radiation, and chemotherapy. They can require treatment in a sarcoma center, even though they are not strictly categorized as a sarcoma.

Jan

Ugh, desmoids with FAP/Gardners Syndrome are evil. Most won't be surgically removed, simply because they are caused from trauma. So cutting into them is just going to make them grow more. They have little "fingers" that just spread out and grab anything they can. Evil things. Remember, desmoids in the FAP population are entirely different than the general population. Yes, they don't metastasize, but desmoids can grab on and just keep growing. The biggest problems are usually simply the size of it. Most doctors always consider desmoids benign, though.

We have desmoids in our family, too. Sorry for your news...good luck to you