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Devestated - Need Help regarding spread of colon cancer to abdomen

jcavanaugh
Posts: 100
Joined: Mar 2004

Hello:

My dad is stage IV - has been since 5/02. He has mets in his liver and lungs. His oncologist recommended that he see a radiologist to see if he or she could ablate some of the stuff in the liver. Plus, he is starting a new treatment (xeolda, oxiplatin, and avastin) on Monday (8/25). So, my mom and him went to see an interventional radiologist at Georgetown. The doctor said that he could treat the stuff in the liver and lungs; however, since my dad's recent ct scan showed activity in the abdomen, there was nothing that he could do for him. We are devestated!! This was the first we had heard about activity in the abdomen. My mom remembers the oncologist saying that there was some activity in the chest. She thinks he mentioned lymph node but he brushed it off and did not make to much of it. This radiologist only saw his current ct scan not previous scans. What do we do? He said that my dad should continue with treatment to see if it kills what is in the abdomen and then he could do something. I am so confused. I realize it might be in the abdomen but why not take care of what you can. He is healthy and in good shape. This is ridcilous. I know that some of you have run into these road blocks. Any advice? Plus, we do not even know where it is in the abdomen. Nobody has told us. I did some research on line - the abdomen is a pretty big place - you would think they could be more specific. I feel like we had a moment of hope ripped away from us - can treat liver and lungs (which was unheard of before) but sorry there is something in your abdomen!!! Please help - I know that some of you have gone for multiple opinions before you got treatment.

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

I am sorry to hear your news. your right the abdomen i s a big area and you should get a more specific diagnosis from your doc. In the gut area is most of the muscle that supports your organs I think it is callled the Peritoneum, the muscles that support the back and skeletal are the retroPeritoneum. My cancer is curreently in both area just mentioned. I was told that once it spreads into the retroperitoneum, nothing can be done because it is the support system for my frame so they can not do surgery and chemo will only slow it. Now i understand it to be different if it is an organ like the stomach or something.

also, there is a process called a hot chemo bath that can be done if the cancer is not spread to the retro peritoneum. It is not done all over but I know it is done at the University of Minnesota, and both sloan ketterling and the place in Houston.

Chemo will also greatly slow the growth - or it did for me. so don't give up hope. and don't forget we are only one day from finding the cure. that day may come in time for us.

Gods blessings.
Mark

taraHK
Posts: 1961
Joined: Aug 2003

What a shock for you all. I think you should be able to access the CT scan and a copy of the report for that scan (since the scan itself may not be easy to interpret). And, someone should be willing to talk you through it -- if not the interventional radiologist, then maybe his oncologist? It is so difficult -- sometimes I feel like we all need a full-time "advocate" to walk us through this maze. Wishing you and your parents all the best as you face and deal with this latest news....I had a similar chemo treatment to what your dad may be facing (in my case, Folfox + oxaliplatin + avastin). Everyone reacts differently but, for what it is worth, I tolerated it pretty well. Best wishes.

cjf2006
Posts: 84
Joined: Dec 2007

This year I have requested copies of the radiology reports whenever I have had a CT scan done. I read it, then look up the words I don't understand on the internet. Then I ask for clarification from the dr. Your father has a right to know exactly what is going on. Unfortunately we (the patients)may have to be proactive to find out anything. Don't settle for no answers. If the dr doesn't give you copies, ask the nurses. I'm stage 4 with mets to liver and lungs and now the lymph nodes in the pancreas area. I was suddenly taken off treatments because my dr feels they are ineffective (although I am feeling worse without them). I understand your frustration. I am waiting for test results to determine if I am a good candidate for Erbitux.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I am so sorry to hear of the news of your father's cancer spreading to his abdomen. I agree with the others, get copies of the written reports on your scans and ask for clarification on anything you don't understand. My initial diagnosis was stage IIIB, involvement of 2 of the 25 lymph nodes removed. I did the resection and chemo. Later, my cancer recurred as a large mass on my right ovary, as well as multiple tumors in the omentum and some of the fatty tissue in the abdomen. They did a full hysterectomy, along with an omentumectomy (probably not a word but it sure sounds official!) and removal of the other tumors. I am now 2 years out, with 2 separate rounds of chemo after the second surgery and so far I am NED on all scans. I continue with Avastin every 3 weeks, and I am feeling great! Certainly look for a second opinion before agreeing with the no treatment available option.
Mary

maggyrose's picture
maggyrose
Posts: 2
Joined: Nov 2007

I also had cancer in my liver. It had metastasized from my colon. They removed half my liver and that took care of that. A year later it showed up in my lungs. I was on Xeloda for 2 rounds and the last CAT scan showed everything was clear. Don't give up and ask questions of your Dr.s, they have to tell you everything.

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