I’m glad I found this website. The past month has been pretty bad for me. My whole situation is on my page,so I wont repeat everything here, but I’ve been given the option of reconstructing my hand after taking out my tumor or amputation between my elbow and wrist. The reconstruction would consist of taking nerve out of my forearm, tendon from my calf and a skin flap from behind my upper arm. I’m told I would get some use out of my thumb and a bit more from my pinky and ring finger. My index and middle fingers are apparently going to stand at attention at all times. Or i can just amputate and save myself some trouble. Im at a crossroads because either way i will have to relearn how to use my new hand. And what if i go through the trouble of having all these reconstructive surgeries and they end up having to amputate anyways? I’ve been told I have the same chance of the cancer coming back either way. If I have the amputation, my surgeon will kind of rewire my nerves so they would sync up better with a myoelectric prosthetic. My reconstructed hand isn’t going to be real nice looking but it will at least be mine. I have no clue what would be easier to deal with emotionally or physically. Anyone have any input?
Try to ask yourself which decision you will regret depending on the different possible outcomes. For example, if you get metastases later, which choice will you regret? For the surgeon, the reconstructive surgery is probably much more challenging which makes it more interesting for him but there's also more possibilities to mess up.
Its true that there is more room for error to do a reconstruction. But, since I’ve already had half of my misdiagnosed tumor removed, I’m thinking that regardless of what I do, the cells have already been given the chance to move or do whatever it is they want to do. The doctor already told me that I have the same chances of it spreading regardless of what I do.
I'm sorry to hear of your situation. The decision is not easy, but perhaps my brothers story might help.
My brother had a similar decision 7 years ago when he was first diagnosed with a synovial sarcoma in his left arm (near his wrist). He decided on surgery to save his hand and had a metal plate that fused his hand to his wrist as well as a bone taken from his leg grafted into his arm. It was an extreme process of surgery and yes, he did succeed to temporarily save his hand.
Then the synovial cancer kept coming back every year and he continued to persist with tumors taken out. The wound eventually didn't heal as it had been opened so many times.
Then the synovial sarcoma started to move up into his elbow, so after 5 years, his doctor advised him to amputate his arm. This was such a blow to him. The emotional distress was more than just the amputation, it was also dealing with how hard he had worked to have kept his arm. It took another 9 mths for him to decide to amputate, and it had unfortunately spread to his lungs by then.
When he did have the amputation, it was surprising how well he managed and I think he was somewhat relieved. He managed to go back to work fine and typed with his one hand very well (which was his non writing hand).
Unfortunately he didn't make a year with the loss of his arm and very sadly my brother passed away 4 months ago after the cancer had taken over his lungs.
'If' is a terrible word here, but if I had a chance to go back to the very start of when the cancer appeared and not have had to watch the level of suffering that he had to go through in order to save his arm, I'm sure that he could have bought some more time.
I know that this type of cancer is so difficult to predict and yes, the chances of it coming back is there (arm or no arm), but I do know that his life to try to save his hand was an extremely difficult ride.
Thank you for sharing your brothers story with me. I am so sorry that he passed on But I know what I need to do now. Can I ask how old your brother was?
He was 40 and a half years old when he died. He was first diagnosed at 33.
I think back to the time when he first was diagnosed and had to make a decision, and none of my family had any idea of what ordeal he was about to enter. And to only have come to a more pressured decision of amputation, made him totally hurt emotionally and made it hard for him to make any decision at all.
When my brother did decide to lose his arm they needed to take it from his shoulder/collarbone. But after the operation I was surprised at how quick he sprung back. He really did look relieved and his interest in life certainly started to come back. The battle to save his arm was so emotional. The arm was a heavy weight and it had been controlling his life, sending him back and forth to the hospital which all in all was detrimental to prolonging this cancer in his body.
I can imagine that your decision to amputate feels all so sudden and hard to absorb. From my perspective for my brother, he never missed his arm after the amputation.. I certainly was proud how well he managed without it and I'm sure if he could have transported himself back to that first decision, I'm sure he would have amputated at the start.
Unfortunately I don't have more of the medical details of all the treatments that he had.. I know there was a lot of radiation post operation and a couple rounds of Chemo (for the first operation and then the amputation 6 years later).
He managed to have kids during this whole process. He already had a child and his second child on the way when first diagnosed. Then a third later on. So the chemo didn't affect his chances of having children.
My brother was a lefty as well which was the arm that he lost. It would be interesting to find out how many other cases of left handed people have had synovial sarcoma in their left arm as well. Another Australian that my brother was introduced to with the same situation was also left handed. Any research for this uncommon cancer is probably a good thing.
I hope my brother's story helps you somehow. I'm happy to talk to you more about my brother away from this site if you need to know anything else.
Good luck with everything and all the best with your decision
Karen, youve been great. After the insight you gave me on your brother, My doctor and I have talked and decided to go with a mid forearm amputation. Just waiting for surgery now, then saving my eggs and then chemo. As screwed up as it sounds, I can’t wait to get all this over with. I can’t wait for the normality to come back into my life. I only pray that I never have to go through HALF of what your brother did. Its amazing how people who have passed on can still help the living. I wish I could have met him. You make him sound like one hell of a fighter.
terrific post. this will help many people to read.
Just an update. On the 27 th I had my amputation. Couple inches above the wrist. My plastic surgeon did nerve transplants on my forearm so I should be all set for a prosthetic. The first night was awful because I wasn’t used to not having both hands. I’m still not used to it but I’m getting better. It’s really not that bad. Feels like my wrist is broke. My non existent hand really itches but that’s the worst of it. Thank god for good friends and great family. I’m just taking it one day at a time
The itchy feeling can be quite bothersome. It takes a bit of practice for the mind to learn to ignore it. Your amputation is still recent. It takes some time to adapt to this new condition but you've got the right thinking: one day at a time. Things will get better :-)