I have an urgent question. We need help finding a surgeon for my brother or a specialist that can offer some urgent direction.
So, just to recap, my brother (26) has synovial sarcoma. He has three tumors: one in his liver, one near his intestine, and one in his Peritoneum. He's at NIH in Maryland now. We were getting him ready for a clinical trial when we discovered that one of his three tumors has grown so large that it's crowding his intestine, specifically his duodenum. Liquid can barely pass through and food cannot. They have him on an IV drip but the cancer is effectively starving him. That issue as well as a few others has made him ineligible for clinical trials. He's had numerous rounds of chemo and radiotherapy before. None were very effective and he's not strong enough to do more treatment anyway. We are running out of options.
We only just found out he's ineligible for clinical trials in the last 24 hours, and we haven't spoke with his primary doctor at the University of Michigan or the NIH doctor leading the clinical trial about what to do next. That conversation will probably wait for Monday, but I just can't wait till then. I want to seek alternative treatments now. We suspect surgery is the only option, but it carries significant risk because of the tumor's proximity to his intestine. Every doctor we've spoken with thus far has discouraged surgery as an option. But now I wonder if it's his only hope.
Do you know of any surgeon who has successfully removed synovial sarcoma tumors? Perhaps one who has successfully removed a tumor near organs? We don't have much time to bother with transferring medical records. We've done that before with second and third opinions, and it took several days. I'm not sure how much time we have.
Your help is very much appreciated! I hope I get email notifications for your responses, but feel free to reach out via email at ■■■■■■■■■■■■■■■■■■■■■
He is an expert in reconstructing main blood vessels when tumors are surrounding them and he does like an auto transplantation, the only surgeon to do this.
Then may be, also check Murray Brennan (but I don't know if he is still doing surgeries):
Hi. First, I am so sorry you are going through this! My dad recently had life-saving surgery because the tumor was pushing on his heart (it's in his lungs) and so they did a de-bulking surgery in which they took out fluid and removed about 90% of the tumor. This was his last option or the pressure would have caused a heart attack. He had the surgery done at the Mayo Clinic in Rochester, MN. Obviously, I can't tell you what they might say because the intestines are a completely different organ than the heart, but I would PUSH to see if they can't do some type of de-bulking surgery. It's palliative care, but might get your brother to a point where he can resume treatment. That's what happened with my dad, now he is not only alive, but he can be treated!! We also lucked out that the tumor was a soft mass vs. hard mass making it easier to remove. If you want to talk more, email me at ■■■■■■■■■■■■■■■■■■■
He is an expert in reconstructing main blood vessels when tumors are surrounding them and he does like an auto transplantation, the only surgeon to do this.
Then may be, also check Murray Brennan (but I don't know if he is still doing surgeries):
Since you are in maryland now,there are 3 surgeons that specialize in ss surgeries, though I do not know about your particular surgery, which may require consult
Albert adoulafia from Sinai and medstar in Baltimore
Matthew Wallace from Sinai and medstar in Baltimore, recently from MD Anderson
Ph 410 601 9266
Nita Ahuja or Stephen Yang at Johns Hopkins in Baltimore
Ph 443 997 1508
How did the meeting with the doctors go on Monday?
I remembered hearing about another good abdominal surgeon a few years ago but couldn't remember the name. I found it on ACOR today: Joseph Raccuia. I am wondering if he is also retired or not because all I could find is this:
Not well. They say there's nothing more they can do. The clinical trial and any chemo is off the table because he's just too weak. They consulted with the surgeons at NIH and at Sloan Kettering and all said surgery was not an option. The tumor in question is near a main artery and his intestine. They say he would likely not survive the surgery.
I'm not sure what else to do at this point. I urged his doctor to follow-up on the 5 other surgeons I found. She said this was not a good use of time because they would probably say the same thing, and we need to get him back home (Michigan) before his symptoms get worse and he can never go home.
Elodie Espesset said:
How did the meeting with the doctors go on Monday?
I remembered hearing about another good abdominal surgeon a few years ago but couldn't remember the name. I found it on ACOR today: Joseph Raccuia. I am wondering if he is also retired or not because all I could find is this:
It does not sound good :-( You still may want to get Dr. Kato's opinion (if it's not too much of a hassle and you can get it in a timely manner) since he is the only one who does the "auto transplantation" surgery. If he says no then you'd really be sure you explored all options...
happythoughts22 said:
Not well. They say there's nothing more they can do. The clinical trial and any chemo is off the table because he's just too weak. They consulted with the surgeons at NIH and at Sloan Kettering and all said surgery was not an option. The tumor in question is near a main artery and his intestine. They say he would likely not survive the surgery.
I'm not sure what else to do at this point. I urged his doctor to follow-up on the 5 other surgeons I found. She said this was not a good use of time because they would probably say the same thing, and we need to get him back home (Michigan) before his symptoms get worse and he can never go home.
Elodie Espesset said:
How did the meeting with the doctors go on Monday?
I remembered hearing about another good abdominal surgeon a few years ago but couldn't remember the name. I found it on ACOR today: Joseph Raccuia. I am wondering if he is also retired or not because all I could find is this:
I say keep fighting and searching for surgeon.It's very said to hear that your doctor assumed everyone else would probably say no too. Try UCLA or Cedars Siani in Los Angeles. Both have Sarcoma Centers. You may want to try Ann Arbor University in Michigan. They treated my cousin who had cancer metastasis to his liver and brain. They gambled on him and it payed off. Best Wishes!