FAP/Gardener's Syndrome

Hi:

My brother who is 31 had been diagnosed with sigmoid/colon/rectal cancer about two months ago. His physician has informed us that this is all due to a genetic condition which is the title of this thread.

First of all, we immediately went to Dana Farber Cancer Institute in Boston upon the biopsy from his colonscopy being positive. It seems that all this time, we just keep going to Boston, and he still has yet to begin treatment. When he was first diagnosed an internal MRI showed, T2. Now a month later, he is T3, N2. The physician (surgeon who specializes in gastrocancers) has now told us that we should meet with their oncologist to facilitate an appt. for treatment closer to where my brother lives which is about 1 1/2 hr from Dana Farber.

It might just be me, but I feel that instead of making yet another appointment, driving to Boston, and seemingly getting no further in treatment (which the dr at Dana Farber says will consist of 9 weeks of chemotherapy concurrently with radiation treatment, then a 4 week break before a total colectomy is performed followed by 6 more months of chemotherapy), that at this point we are just wasting precious time where my brother could theoretically start treatment where he lives without yet another useless consultation with an oncologist in Boston.

I am also questioning the suggestion of chemo with radiation prior to surgery rather than surgery and then chemo.............

Have any of you had any experience with patients who have this genetic disorder and if so, do you find it is normal procedure for chemo/radiation prior to surgery or are better results obtained with surgery and then chemotherapy? Also since it is now at the point where the tumor has gone through the colon wall into the muscle and there is pelvic lymph node involvement, would it not be better to just get it out first?? I am not asking for medical advice. I just need to vent and also am wondering if anyone has cared for a pt in a similar circumstance and what the procedure was.....chemo/radiation prior to of after surgery.

I also might add that he also has 1 1/2 yr old twins, and because our other two siblings live far distances, I am his only support system at this time and feel like I am losing my mind because we have always been very close and I just want to make sure that he is getting the treatment he needs when all I can see at this time, is that time keeps going by and sooner or later, if he doesn't get treatment, I imagine that mets to a major organ will soon occur.

Thanks for listening and if anyone has any advice, suggestions, comments, I would be so happy to hear from you. Please keep him in your prayers as well; it means a lot to me and my family.

Also is anyone familiar with Hudner Oncology Center at St. Anne's Hospital in Fall River and do you find that they are a good facility?

Have a good night........and I do appreciate any feedback on if you think I should just try to get him an appt at a facility near his home for treatment rather than wait until Dana Farber makes an appt. After all, it seems that chemotherapy and radiation is able to be done at any facility since it is usually pretty standard treatment for the type of cancer, no?

All right, I am going to stop rambling on now; I am just so stressed out and worried.

Carla