So a BFF of mine just got diagnosed 2 weeks ago with this. He has had Chrons for the past 10 years and was having colonoscopies every 2 years. His last was 1.5 years ago and started having intense abdominal pain. he went to the ED and found a mass in his transverse colon. The original surgeon wanted to cut him open and take out the entire colon. I found through referral of another Chrons pt whose an RN I work with about another surgeon for a second opinion. This surgeon, who had tremendous great reviews online Did the surgery laparoscopically and took out a foot long malignant tumor. They saw "speckled areas on his peritoneal cavity and ended the operation after realizing its become Stage 4. The surgeon also stated he did see a spot or so on the outside of the liver.
After learning of this, I went to google and learned of HIPEC and then I found this wonderful group of dedicated survivors. Now my buddy was referred to an oncologist from his surgeon The oncologist works across the street from the hospital so this was done out of convenience, and my friend is'nt looking for convenience, he wants to live no matter how faer he has to go.
So after the colon resection, they were going to let him leave the hospital after 2 days. He opted to stay an extra day, im the same ICU room. The next day they decided to do a CT and found fluid and air around the surgical site and kept him there a few days longer on ABX. well low and behold they thought he might be getting an abscess and decided to go back into surgery to place a temporary bag. The surgeon said it was best for this so that while getting chemo, if it did get infected, he would have to stop chemo, then put a bag and wait for the infection to leave before starting chemo again, hence waisting time. Well, low and behold, 2 days later, my friend was positive for VRE! The doctor said it was from an abscess that burst but who knows. Anyway he is getting out today with a midline so he can finish 3 weeks of abx.
Know he is to see his oncologist sometime in the next week, have an MRI and a PET scan and he is talking about HPEC, after I brought it up to him. He has mentioned a Dr at sloan in NYC "Dr Nash" and he was told of another one out of Pittsburgh. Most of these are referrals and Im never crazy about a referral from doctors bc one refers and it goes back and forth.
I am here today to ask for any amazing HIPEC surgeon names that any of you has heard of or used. My buddy lives on Long Island NY and will travel anywhere, even Anderson in Houston. I read about Dr Kane in Buffalo. He of course would go to sloan or any other top hospital, but he needs a second or even 3rd opinion. His current oncologist says that he should do systemic chemo firs, before HIPE, but then he also says he doesn't know too much of the procedure and this is why I want to find him a HIPEC specialist
One last question. My friend is 46 yrs old and besides chrons, no other medical conditions. He was an avid runner before this and has GREAT veins. His "referred oncologist" want to place a port, in his office. I question this at the moment because he currently has awesome veins and they don't roll or hide.....any insight to this also would be great.
Thank you all for taking the time to read this!