I just spoke with my oncologist yesterday morning. After the last year and a half since diagnosis my tumor is still contained yet still growing, and some of my symptoms have been increasing as my tumor continues to put pressure on my arm I've asked her to schedule surgery for an amputation of my left arm. This has not been an easy decision. And I still don't know that it is the right one. But I honestly feel I have no other choice. My scans from Friday confirm no spread and continued growth. I will be meeting with them to come up with a plan but right now I'm scheduled to meet with the surgeon next Wednesday April 1st for a tentative surgery date of the next day, April 2 for the amputation. That's where I'm at.
Someone asked me what changed to make me decide like this, since I have been so against it all this time. I spoke of fear. That is true. Also, the realization that it is still growing and that symptoms are increasing. I can't deny it anymore like I have been since January where it showed growth again. My tumor is a constant reminder that every day billions of cancer cells are fighting against my body trying to cause damage and spread. I used to believe I could keep my cancer contained indefinitely. I still don't know that I will necessarily live any longer with it. That is my way of coming to terms with something that I do not fully believe in. I am just not very confident going into surgery at all.
Since you made your decision already, it's counterproductive to think more about it, in terms of whether it's a good decision or not. Don't torture yourself with too much thinking. Move on. Now you will have to get use to a new life with no left arm. Many have experienced this before you. You can still live a good life even with one arm... For amputee tips, the Amputee Coalition of America is a good place to start. They have a group on facebook...
I feel your pain. Elodie is right, don’t torture yourself with second guesses. Have faith in our doctors and place even greater faith in yourself. We are all thrown incredible challenges throughout our lives; our reaction to them is what defines us and makes us who we are. You are not alone in this. It sounds like you have an incredible wife!
Thanks. It is impossible to not second guess myself. Too much thinking has been my problem all this time. I wish I had more faith in the doctors. In my mind, going for the amputation feels like giving up. I have never had any kind of surgery before, at all. It is scary. I could not even hope to face this without the love and support of my wonderful wife.
What a tough thing you are facing! I imagine your tumor must be painful and interfering with the function of your arm, so maybe you'll actually feel better after your amputation. I hope all goes smoothly for you. Bless you
If you are that uncomfortable - seek a second opinion from someone that specializes in sarcomas.
This is going to sound odd, but my 12 year old daughter and I gave a bag lady a ride home from our library a few years back and she told me her story. She smelled of urine as she began to preach to us about God. How God provides everything to those who believe and have faith in him. I agreed and exchanged my story of battling cancer.
She smiled and asked why I placed my faith in doctors? They are only men.
To this day I still place my faith in doctors, but also have explored my faith.
Jim
Johnboy Esq said:
Thanks. It is impossible to not second guess myself. Too much thinking has been my problem all this time. I wish I had more faith in the doctors. In my mind, going for the amputation feels like giving up. I have never had any kind of surgery before, at all. It is scary. I could not even hope to face this without the love and support of my wonderful wife.
My son had his leg amputee 21 years ago because of the tumour was spreading . At the time was very hard as he was only 6 years old . He now a healthy your man and life could not be better .
Great to hear you have the support from your wife . Take each day at a time . Wish you all the best and prays are with you.
My tumor was partially resected back in 2010 when we thought it was schwannoma, and it seeded the area. We did chemo, radiation, and surgery in 2011 and I was in remission, butt it came back last year. I did votrient, followed by an NY-ESO1 trial. The immunotherapy trial only worked for two months and it started growing again, and has now grown enough to impact functionality on my hand.
I kept going back and forth on amputation. A few sarcoma specialists told me that it's the only way to really be cured. My pain levels finally got so bad that I agreed to do it. Then we got a CT scan that showed that the tumor is encroaching on my neck, so amputation is no longer an option.
2 weeks ago I did a week of ifosfamide again, and it has decreased a bit, so I'm going to do another cycle of ifos next week.
Johnboy,
I made the decision to cut off my left arm in 1970 from synovial sarcoma I had for the past seven years. I had my left leg cut off as well as my chest bone. My left arm was cut off in June 1970. In July 1970, the preacher from my church and two other preachers came to my house and performed the “Laying of Hands Ceromony”. They prayed for the cancer to leave my body and not come back.
I still had some cancer growing on my chest wall and in October 1970 I had my last cancer operation.
I believed in the Power of Prayer and since Oct 1970 I have been cancer free by the Grace of God.
If you truly believe in the power of prayer, your cancer will have a chance of leaving your body. Have no fear because God is with you. If I can answer any other questions feel free to call me in Raleigh, NC at (919) ■■■■■■■■.
Your friend in Christ,
Bob
Hearing these experiences always helps put it more into perspective. On the one hand, I want to live. On the other, the way that I feel about amputation, my distrust of doctors, and the fact that I have never had any kind of surgery before in my life, all make me feel like choosing amputation is akin to choosing death. I can't get away from that feeling. The lack of confidence in the process. I feel like everyone is telling me to go jump off a bridge, and they have been since I was diagnosed a year and a half ago. I have spent all this time doing everything I could to live. Now it feels like I am finally just giving up by choosing to amputate. That may sound crazy. Maybe it is. Faith is a funny thing. I pray about this constantly. I still do not feel that God wants me to amputate. But what else am I supposed to do at this point?
It's not death. It's a different experience of life. May be God wants you to have that experience...
Johnboy Esq said:
Hearing these experiences always helps put it more into perspective. On the one hand, I want to live. On the other, the way that I feel about amputation, my distrust of doctors, and the fact that I have never had any kind of surgery before in my life, all make me feel like choosing amputation is akin to choosing death. I can't get away from that feeling. The lack of confidence in the process. I feel like everyone is telling me to go jump off a bridge, and they have been since I was diagnosed a year and a half ago. I have spent all this time doing everything I could to live. Now it feels like I am finally just giving up by choosing to amputate. That may sound crazy. Maybe it is. Faith is a funny thing. I pray about this constantly. I still do not feel that God wants me to amputate. But what else am I supposed to do at this point?
John. You need to be confident in the fact that you have explored all other options. As I said before, if we had this option, we would take it. My boyfriend has synovial sarcoma too. It started in his gluteus medius, which he had removed along with some hip bone...then spread to his lungs and in the last few months to his pancreas. We are 37 years old...if surgery was an option we'd take it. It's a chance to be free of this disease. It tends to spread so radically. I hope you can find comfort in your decision and feel free of second guessing. It's a chance for a new life, maybe without this terrible disease. Please take it (if you feel it's the right decision)and the support of all of your loved ones and move forward with your life without looking back. Your body does not define you..it's your spirit that does that. Much love and prayers for you and your wife. Thankyou for sharing your journey. I look forward to hearing of your promising future. P.s. This is in no way " giving up" it's making a choice that most likey gives you a better shot at life.
"Reflecting on this week. As long as it continues to be medically necessary and advisable by my doctors, I will go through with the amputation of my left arm, if there is no other way to save my life. It has to be qualified like that for me. Because right up until the last moment I need to be sure that it is still the right choice medically. That my condition hasn't changed and there is truly no other way. For me, that means getting as much information as possible to feel as comfortable as I possibly can with it. I'm finding there is not much time to do that. I had scans a week ago. Have been arranging everything in a short time. I have never had any kind of surgery before. Now I'm scheduled for surgery April 2nd. A date I chose because I needed to commit myself. And I have. I have arranged my whole professional and personal life this week to accommodate this radical surgery. On paper I am all set. But the medical side is still in process and largely an unknown for me. April 1st is my preoperative appointment to make sure I am ready for surgery. My surgeon needs to be sure that it is medically advisable still too. If there is any possible cause for concern we want to know about it first. For my own peace of mind, right up to the day before surgery I still need to put my doctor on the spot and reconfirm that their best science says this is the solution still. I need that reassurance. So I have been meeting with as many medical professionals as I can to help prepare in this short time. Originally my surgeon wanted it scheduled for either 4/2 or 4/9. I picked 4/2 to get it over with. But it is looking more and more like 4/9 would have been the better choice just to have enough time to prepare everything in all aspects of this. I plan to raise my concerns with them during the week."
So, after consulting with a Dana-Farber psychiatrist today we have postponed the amputation. I was clearly not emotionally prepared for it, let alone otherwise.
It sounds to me like you are actually prolonging your nightmare :-( I hope you find some way to feel better...
Johnboy Esq said:
So, after consulting with a Dana-Farber psychiatrist today we have postponed the amputation. I was clearly not emotionally prepared for it, let alone otherwise.
I am not sure where in your arm the tumor is not mine was in my right knee. My doctor removed the tumor, all surrounding soft tissue, some bone as a precaution, and the skin covering my knee. He then rebuilt my knee with my calf muscle and took skin from my thigh to cover my knee. I then had six weeks radiation. That was 20 years ago. I lost a little motion but walk fine. I even ride a bike. My doctor told me that amputation was what they would have done if the diagnosis would have been a few years earlier. This whole procedure has a name but can’t remember it. Can you talk to an oncologist that offers something similar? I have some nasty scars that I am by no means ashamed of. I have been cancer free since. Praying for you .