Any Amputees out there?

Symptoms and Treatments Amputation
1

Since my treatment has been pushing me towards amputation I decided to make this post to hopefully get in touch with some other people who have had amputation due to synovial sarcoma. I'd really love to hear your stories and how amputation worked out for your treatment, good or bad. It is a real possibility for me (below-knee amputation of my right leg), so I would greatly appreciate any advice any of you may have. I hope you are all doing well and staying strong.

Some questions..

1)Do you regret your decision of amputation?

2)Were second opinions sought?

3)Did amputation benefit you in the end?

4)I've been hearing a lot about phantom limbs/phantom pain. Any experience with this?

5)Was radiation done or considered as an option? If so, was it effective/would you have gone back and done it instead?

Thank you so much,

Sarah

2

Regarding phantom pain, mine was only significant during the weeks following surgery. Physical therapy was very useful in alleviating the pain. Eventually, I could not notice the pain anymore. Now I almost never experience phantom pain.

Amputation may seem like a easy surgery but the quality of an amputation can have a huge impact on the amputee quality of life. Here is an article that describes the challenges:

http://www.ampsurg.org/html/fundopen.html

One of our member, Rob has a blog that describes his experience:

http://survivingsarcoma.com/

Chad Crittenden who is a member here, was in the Survivor show some years ago. He is a below-the-knee amputee.

Other amputees on the site (that I can think about): Brenda M, Dale Ayscue

3

Thank you Elodie, I have actually made my decision today for the amputation. My surgeon contacted Jay Wunder for me and he actually came to Sick Kid's Hospital, which is across the street from Mt. Sinai where he works, and after looking at all my scans and reports, came to see me and explain what he thinks. I cannot thank Dr. Wunder enough. He is an amazing, kind man, and explained things perfectly for me. I now understand why the amputation is key exactly, which wasn't really explained that well to me before. Basically I had a not so great location for a tumor (not that any is great) it was attached to my achilles tendon, a few other tendons, and a major nerve and artery. They did go into my first surgery believing it was benign, and if they knew otherwise they wouldn't have done the surgery in the first place. As a result of the location, they're almost positive that there is residual tumor left because of how tangled up it was, which of course is bad, because clear margins are key. I have read the pathology report and since the tumor was taken out in pieces, they didn't know the margins. He explained that one of my only other options to try and get clear margins would be a very difficult surgery to try and remove anything else, because they have a pretty good idea that it's spread through the foot a bit, so removing it with normal tissue around the remaining tumor would be just about impossible, they'd have to take out my tendons and some of my nerves, and that would leave me with a mostly numb, almost unbendable foot. Of course, that deal doesn't sound so great, along with an above 40% recurrence chance if they can even do it. So that of course explained why amputation was best specifically for me. They need clear margins, and this is the only effective way. Of course there's always the chance of spread or what not, but that's the same for me now as it was from the beginning. I just have to go with it. Dr. Wunder explained things perfectly and unbiased, he wasn't even trying to push me towards amputation, it all clicked for me on my own. My surgery is this Thursday, unfortunately my surgeon couldn't do it later, and I am very scared, but hopefully things will be okay. Thank you for your references, I'll be sure to read them. Any advice going into this kind of surgery? Should I remind or tell my doctor anything specific? I know this may sound silly but I want a clean cut, nothing too uneven if possible, but I don't know how exactly to remind him of that lol, but then again he's done this many times and is a good surgeon and will hopefully do a good job.

4

At this point, the quicker the amputation the better. Try to relax and don't worry too much. It seems to me like you are in good hands. For the recovery, get physical therapy, try to get some distraction so you don't focus on your limb. The more you focus on it, the more pain you will feel :-( Good luck!

5

Hey Sarah,

As Elodie said, I have had an amputation to take care of my synovial sarcoma and would be more than happy to talk to you about anything you want to know.

To answer your immediate questions though:

1) I do not and never have regretted my decision to get an amputation. My amputation is above the knee, which is much more difficult than below knee, but I still do not regret it. When we amputated we got incredible margins and now I am a year and a half out without any sign of cancer returning. I took the full measure to maximize my chances of survival and it looks like that decision has paid off. I also know that if I had tried the limb salvage and cancer had returned, I would have always questioned if I had made the right decision. However if the cancer ever comes back now, I know I did everything I could do right from the start and it was just bound to return.

2) I talked to 5 different surgeons. 3 said they would try a limb salvage and then amputate if the cancer came back. 2 said amputate. I didn't want to roll the dice with my life so I went ahead and pulled the trigger.

3) Since the day of my amputation I have been 100% cancer free, so yes, I would say that it benefitted me!

4) Phantom limbs are very different than phantom pains. Phantom limbs are actually beneficial when wearing a prosthesis because it makes it feel like your leg is there. Right now, sitting here typing, the inside, bottom of my foot, my heel and my big toe are tingling. I can also feel my calf. It's definitely an interesting experience and kind of impossible to totally explain unless you have felt it!

Phantom pains can be brutal. I had very severe phantom pains that started shortly after my amputation. They put me on all sorts of drugs to try to stop them, including Lyrica and Neurontin. Nothing touched them. But then I read about mirror therapy. Basically you trick your brain into thinking your leg is still there and it will mold your foot the way you want it to be and stops the phantom pain. It's truly amazing and I have recommended it to a number of other new amputees who have confirmed that it worked for them as well. I wrote a post about it that you can see here: http://survivingsarcoma.com/?p=987

5) I did 5 rounds of very intense chemo and 25 days of radiation. Since I got the amputation, I don't know that it was necessarily worth burning my leg up with that stuff, but at the same time, I would probably do it again. The way I look at it is that all of these things are killing the cancer cells, and that is exactly what I wanted, as much stuff attacking those cells as possible.

If there is anything else you want to know or want to talk about feel free to shoot me an email at ■■■■■■■■■■■■■■■■.

I hope you can make peace with your decision and whatever you decide, go at it with confidence that you are doing the right thing!

6

Good luck tomorrow Sarah. I'm sure the surgeon will do a great job, and you'll be in my prayers.

Rob

Sarah said:

Thank you Elodie, I have actually made my decision today for the amputation. My surgeon contacted Jay Wunder for me and he actually came to Sick Kid's Hospital, which is across the street from Mt. Sinai where he works, and after looking at all my scans and reports, came to see me and explain what he thinks. I cannot thank Dr. Wunder enough. He is an amazing, kind man, and explained things perfectly for me. I now understand why the amputation is key exactly, which wasn't really explained that well to me before. Basically I had a not so great location for a tumor (not that any is great) it was attached to my achilles tendon, a few other tendons, and a major nerve and artery. They did go into my first surgery believing it was benign, and if they knew otherwise they wouldn't have done the surgery in the first place. As a result of the location, they're almost positive that there is residual tumor left because of how tangled up it was, which of course is bad, because clear margins are key. I have read the pathology report and since the tumor was taken out in pieces, they didn't know the margins. He explained that one of my only other options to try and get clear margins would be a very difficult surgery to try and remove anything else, because they have a pretty good idea that it's spread through the foot a bit, so removing it with normal tissue around the remaining tumor would be just about impossible, they'd have to take out my tendons and some of my nerves, and that would leave me with a mostly numb, almost unbendable foot. Of course, that deal doesn't sound so great, along with an above 40% recurrence chance if they can even do it. So that of course explained why amputation was best specifically for me. They need clear margins, and this is the only effective way. Of course there's always the chance of spread or what not, but that's the same for me now as it was from the beginning. I just have to go with it. Dr. Wunder explained things perfectly and unbiased, he wasn't even trying to push me towards amputation, it all clicked for me on my own. My surgery is this Thursday, unfortunately my surgeon couldn't do it later, and I am very scared, but hopefully things will be okay. Thank you for your references, I'll be sure to read them. Any advice going into this kind of surgery? Should I remind or tell my doctor anything specific? I know this may sound silly but I want a clean cut, nothing too uneven if possible, but I don't know how exactly to remind him of that lol, but then again he's done this many times and is a good surgeon and will hopefully do a good job.

7

My hubby had his amputation last May in 2011. His sarcoma came back so they amputated his leg above the knee. When they found the tumor again it had already spread to his lungs. Paul doesnt regret them taking it he just wished they had done it the first time cause it may have not come back again in that area. He hasnt had a easy time with the prosthetic only because his lungs hold him back due to running out of breath. We have met a lot of amputee's and seems like the ones who have it below the knee have a easier time. The best advice we can give is push thru the pain no matter what! It gets easier but it's hard at the beginning with your leg trying to get used to wearing it and your brain recognizing it. The phantom pains were there at the beginning but he rarley has them anymore and like I said this was a year ago. They give you meds for those. Your brain has to be trained to see it's not there. Paul stands in front of a mirror and moves his leg around, docs say it helps the brain see there is no more leg. Just have a great positive support system to help you out when you need things and you will do great. It's a big decision. I always say just pray for what is right for you.

8

Sarah, I had below knee amputation in July 2009. It has change my life, but my cancer still mastastized to my lungs so I have to to continue chemo. Yes, phantom pain, a lot at first, but not nerve as bad anymore. Can’t tell what to do, I do believe it has given me added life. Ive made it 3 years. I’m going to Bethesda Maryland this month to look at a clinicial trial. MD Anderson that there s nothing else the can do to help me. Keep posting your updates. Have yours mastastized anywhere else?

9

Thanks so much for posting this. I think it will generate a great discussion and help folks.

10



Wanda said:

Sarah, I had below knee amputation in July 2009. It has change my life, but my cancer still mastastized to my lungs so I have to to continue chemo. Yes, phantom pain, a lot at first, but not nerve as bad anymore. Can't tell what to do, I do believe it has given me added life. Ive made it 3 years. I'm going to Bethesda Maryland this month to look at a clinicial trial. MD Anderson that there s nothing else the can do to help me. Keep posting your updates. Have yours mastastized anywhere else?
Paul is getting ready to go up to Bethesda for a clinical trial also. This is basically Paul's last option as well. He was on the chemo pill but didnt work the tumors grew bigger. What trial will you be doing? Wonder if it's the same as Paul's?