Limb Salvage Surgery - Pros and Cons

[Mary]

This is an interesting article about the issues that are often discussed in our group.

Here is another article about this study, more from the medical perspective, which is quite good:
http://www.medpagetoday.com/HematologyOncology/OtherCancers/15451

For patients who are offered limb salvage surgery, it sure does seem like the logical decision to try it. Many of us have had successful limb salvage surgeries! But it is probably good for patients to know that the outcomes are not great for everyone. In some cases, if you are left with a painful limb that is difficult or impossible to use, you may make the personal and difficult decision to have it removed.

This year, I met a young man from Mexico who had limb salvage surgery about ten years ago. It left him with so much pain and disability that he had virtually no life for ten years. He decided to have an amputation last year, and when I met him at Team Sarcoma he was able to keep up fine all week during all kinds of activities. He had an advanced "C-leg" and would have even been able to bike with the team if it had been functioning properly. He was happy and active and shared how glad he is that he made this decision for himself. He said that a true disability is more about what is in your mind than whether or not you have a limb.

Of course, these issues are very personal, and everyone has a different way of looking at them. But it is good to know that there are happy and productive people who have had both kinds of surgeries.

Anyone else want to share your thoughts?

[Cari]

Well considering I have had both I still don't know what way I would choose if given the choice again.  You all know me and the constant pain I had with the limb salvage and the inability to do many things even a leisure walk through the store was unbearable...so 6 years later and amputation..HMMMMM...right now I can't say that I am doing any better--I learned how to deal with my leg when I had the limb salvage so now I know that I have to learn to deal with NO LEG and the use of prosthesis--It's hard, it's tiring and it takes a lot of trust which I don't have in my new leg yet--BUT with that said I think someday I will be in a much better spot than I was in before.  It takes time-time is just something that I don't like to wait around for--hahah!  I am thinking though I would probably lean more toward the amputation than what I dealt with for the past 6 years.  Especially when I will be a lot more able to do things.  So that is my 2 cents!!

[Cindi]

mary...it is so strange that you posted this today...i have been having so much discomfort in my foot that the last few weeks i have REALLY been contemplating on doing further amputation...my amputation was performed on my right foot and consisted of removing all 5 toes...at the time of diagnosis and treatment planning...we never discussed a below the knee amputation...partly because before surgery it was planned to only amputate 3 of my toes...after the surgery i was not healing as quickly as needed to begin chemo again so they decided to go in and remove the remaining toes and use that skin to flap over to cover the area that was not healing....

as i get further from treatment my foot is becoming more and more uncomfortable...yes i can walk...however...on the outside of the foot that bone just rubs and rubs...it is EXTREMELY sensitive...i just recently had a new orthotic made...but that isn't really helping...if i was able to keep my 2 toes i would have had the tripod that ours toes provide for walking...i don't have that...so a lot of pressure is put on the outer side of my foot....

so i have been really contemplating this...i have been praying that if this is what i am suppose to do...please give me a sign that i won't be making the wrong choice...within the last few weeks...i met "survivor chad" (who is a below the knee amputee)...i met a fellow who was in the same situation i was in for 6 years from a gun shot wound...he decided to do a below the knee amputation and wishes he would have done it sooner...and then today i read this posting...

with my foot now...i can't run...i have to plan my activities around how my foot is going to hold up...i know that there are other forms of exercise...but i use to run 5-7 miles a day before all this...i have always been someone who has strived to keep my body strong...it is important to me to be strong...so if i was attacked i could run...or if my son ran into the street...i could save him...these are things i can't do now...i just feel that i am reminded daily what "c" took away from me...that i feel if i went through with the below the knee amputation...i would come out on top...

don't get me wrong...i am so THANKFUL for my life and the mobility that i do have...however...i honestly think with a below the knee amputation i would be able to live my life without chronic pain...i look into the future and i can't see myself 75 years old with this half foot...but i can see myself with a prosthesis having no real problems...

i still have a lot of deciding to do...a lot of research to do...i am just so thankful to have this forum and all of you to understand what i am thinking about...people who have not been through what we have gone through...think i am crazy for even considering it...

hugs,
cindi

[Cathy]

Cindy,

I'm so sorry you are dealing with so much pain.  I really understand your feelings about not being able to run.  I used to be a walker and it was wonderful - kept my weight down, remained strong and active and enjoyed the solitude of just being out in nature.  Now, I can't walk one step without my crutches and I miss walking so terribly.  However, I had limb salvaging surgery that I guess you can say was successful as I do not have chronic pain in that leg.  I must swing it forward to walk as it is not secured by anything other than scar tissue.  The chronic pain I have now is in my hands and my only hip.  I have developed osteoporosis in my lower back and the hip from having a 2 inch deficit from having my pelvis removed.  I too worry about the future.  In fact, today I am 54 and I am thankful that I made it to 54, it's just worrying about the wear and tear and will I still be able to walk with my crutches as the years go along.  I don't know how I would handle the possibility of amputation.  Carii is struggling but hopeful for a better outcome.  Rene is doing fabulous.  I think it's a personal decision and a very difficult one.  I can't imagine having to walk the way you do with having such terrible pain all the time.  My heart goes out to you.  I wish I had some words of wisdom.  All I can say is we are here for you and whatever decision you make we will be with you 100%.  Blessings my dear.

Always,
Cathy

[Peggy]

Feb 11th of this year I had a 10-hour surgery to remove my femur and replace it with titanium.
The ball of my femur had fractured and contaminated the gluts. A ligament from the bone bank replaced the removed muscle tissue and attached to the metal femur. My hip socket was lined with metal so walking would not be bone on metal. My arthritic knee was replaced to support my new and improved knee.
I wrote a little about it in my blog
http://peggysdoublecancer.blogspot.com/2009/07/more-metal.html
This weekend I should have the xrays finally scanned and a more detailed information and reflections soon.
I was in hospital for about a month recovering and then getting rehab. Since I had already been using a walker my upper body strength was good and my balance was good. That speeded up progress toward being able to stand at the sink and brush my teeth and wash up. I was pretty good at getting into and out of the tub and the car. When able to do all those things, I was ready to go home.
I recently progressed from using a walker to using a cane.
What slows my progress is fatigue from chemo and radiation.
I fall into to the happy class.
I am amazed at the abilities of athletes and other with artificial limbs. Still, I really did not want a high amputation.  The body image thing and the finality of a lost leg was disturbing to me.

[Cathy]

Cari,

I can relate to your dilemma about pants.  I no longer wear dresses as I can't see my feet for one thing, and the other thing is I have to wear the horrible geriatric shoes that tie and my left one has the 2 inch lift on it.  Like you, I used to wear long skirts or dresses all the time as I too am 5'9" tall.  We had to go to a funeral over the weekend and I ended up wearing black pants and a black top.  I sometimes feel so out of place.  When I first had my surgery, I was angry and envious of everyone walking.  I don't feel that way anymore, but I also can relate to getting out of bed in the morning and there is my wheelchair and I wished that it were a dream.  I hope in the very near future that Jorge will be more accepting of your leg and you will be able to run a marathon!  Until then sweet friend, we're here for you.

Always,
Cathy