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Keeping looking for a surgeon or give up and go home?


#1

I previously posted a topic about looking for my brother who has synovial sarcoma. He's urgently looking for a surgeon or a final second opinion. Here's the post: http://www.synovialsarcomasurvivors.org/forum/topic/show?id=6300991%3ATopic%3A42601&xgs=1&xg_source=msg_share_topic

We talked to his doctor at NIH and they said 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. His doctor is going to consult with sarcoma surgeons at Johns Hopkins and we should hear from them in the next day or two.

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) in case his symptoms get worse and he can never go home.

My brother refuses to give up though. He wants to keep looking for surgeons, and he's willing to try surgery even if there's a low chance of success. He's as stubborn and resilient as anyone I've ever met.

What do I tell him? What do I do?


#2

This is a very personal decision and requires some soul searching. Your brother is not ready to let go so if you give up on him he may feel angry at you. On the other hand if you do not get back home now, the people who want to visit him before it's too late may not be able to see him again. The solution may be to take one step at a time: go back home first then if he is still motivated, look into surgeons...


#3

So sorry to hear this - my heart goes out to your family. Great advice!


Elodie Espesset said:

This is a very personal decision and requires some soul searching. Your brother is not ready to let go so if you give up on him he may feel angry at you. On the other hand if you do not get back home now, the people who want to visit him before it's too late may not be able to see him again. The solution may be to take one step at a time: go back home first then if he is still motivated, look into surgeons...


#4

I agree. I was going to ask what your brothers wishes were because sometimes as family we want to do whatever we can to save our family member, but it also sounds like your brother wants to fight. It's hard for me to hear that a doctor said "it's a waste of time because they will PROBABLY say no"...I just feel like if it were my life I wouldn't want to hear that reaching out is a waste of time, there is a chance you get someone that will say yes. I do agree that going back home might be a good solution so he is home with the people that love him and keep looking! Just because you leave the place you are now doesn't mean you are giving up. Again, it's a very personal choice for your brother to make. All I can do is send prayers and love to your family and brother.

Elodie Espesset said:

This is a very personal decision and requires some soul searching. Your brother is not ready to let go so if you give up on him he may feel angry at you. On the other hand if you do not get back home now, the people who want to visit him before it's too late may not be able to see him again. The solution may be to take one step at a time: go back home first then if he is still motivated, look into surgeons...


#5

How are things going with your brother? I have been thinking about you all!