FAP/Gardener's Syndrome

  1. 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
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    About Euphrosyne7

    Joined: Apr '03; Posts: 130; Likes: 23
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    Specialty: ED/Psych

    5 Comments

  3. by   EricJRN
    Carla,

    We wish you and your brother the best in what must be a really overwhelming situation. While you're not asking for medical advice, it's hard to address many of your concerns without dispensing medical advice, which is simply beyond the scope of our site.

    It seems like you're having a lot of uncertainty about treatment options. Often the best way to deal with this is by addressing these concerns directly with the physicians involved in the patient's care. That is where I would begin.
  4. by   LittleWeasle44
    i am so sorry..my brotherinlaws..brother was just diagnosed and a recent patient.
  5. by   texan_qt26
    I am also diagnosed with the disease, found out when I was nine, my grandfather, both aunts and my dad have it too. 3 have died, luckily, I and my dad are the only ones left, and I can't have kids. I have had a colectomy, had hi-grade dysplasia, and 4 other surgeries related to the disease since 2000. I am sorry to hear about your family. The advice that I can give having a family history and lived with it virtually all my life is to suggest that the family have genetic testing and find out if any other family has it, including the twins and other children, what saved my life was early detection and my family telling me everything they knew about the disease. I grew up knowing all there was to know, well, that is what they knew at the time. It seems that there is always something new coming out about it. My aunt found out about the genetic testing while she was dying of cancer due to it, and was able to let the grandchildren of our family know for certain who did and did not have it. Out of 6 of us I was the only grandchild with it. I hope all goes well and you and your family will be in my prayers. I hope I helped and if you want to know anything, information, a shoulder, or someone who understands and has been there, let me know. My grandfather and one of my aunts also got desmoid tumors, which is what they died from, one aunt of colon cancer b/c of it. I have had 4 surgeries so far, and my dad had stomach cancer due to it. not only colonoscopies are needed but endoscopies as well. we found out the hard way!! ohhh and if you find out any information on help with health care let me know, please. I am 26 and have no insurance, can't get insurance and the doctor's keep telling me that I HAVE to get checked (which I know) but won't do the proceedures b/c I can't pay them. I live in TX by the way and my family went to MD Anderson for YEARS!! if you check it out, get this, look at some of the id numbers.....my dad's is 5 numbers long, has been going there since 1968. Anyway hope to keep in touch with you, sometimes it seems like no one out there understands what we go thru.
  6. by   Sailingshoes
    You may want to look at the NCCN website to help decide where to get care and to confirm you are offered the proper treatment. NCCN is an alliance of the 21 leading cancer centers around the country and their guidelines are listed on this site. Best of luck.
  7. by   Euphrosyne7
    Hi again:

    Well since my first post, a lot has happened........my brother had radiation for 13 weeks, chemo for a year, and a total colectomy with a permanent colostomy.

    The cancer mets to the liver. So this summer, he had a wedge resection.............and just when his PET scan showed nothing "glowing" as of two weeks ago, he had a CT of abdomen which showed a "mass" located to the left of his colostomy. This mass appears to be subcutaneous and you can feel a hardened area about 1' by 1 1/2 inches. His stomach muscles appear to be under it.

    SO he had biopsy of that area..........and today at 2:00pm, we will go to discuss the results of same...........I feel like I want to throw up................

    To the 26 yr old in Texas........I hope that you are well and have not had any further problems!!! Please pm me if you wish.

    Please keep my brother in your thoughts and prayers.

    Thanks,

    Carla

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