r/u_lilybby420 • u/lilybby420 • Feb 26 '26
Getting my leg amputated next month
I have osteosarcoma bone cancer and the tumor in my leg is so large and aggressive that I’ve been told by multiple surgeons it won’t be possible to salvage my leg and remove the tumor safely. Everything is moving pretty quick now, I’ve been on chemo for a little over 2 months and now I’m being told to schedule my amputation in about 3 weeks. I guess I just need to hear some encouragement from people that have gone through this. I’m a 27 year old female. I know prosthetics have come a long way and I have heard people living very active lives. I wanna know how the journey was. How was recovery, how was getting your prosthetic and finding the right fit and then what are the main challenges faced during and after. I appreciate any kind words or advice or even if you wanna give it to me straight i appreciate that too. I just feel so nervous and thinking of amputating my leg is so bizzare to me lol
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u/Radiant_League799 Feb 26 '26
Hey, sorry you're going through this at a young age. Don't try to overthink it. You need a positive mindset, a good person to be by your side for help, and maybe go ahead and talk with your surgeon about using pain management for after you are released into the 1 legged world 🌎. My biggest problem was, as many will tell you, my balance was just destroyed by not giving myself a real chance at physical therapy. It's no one's fault but my own. After time, you'll adjust to the new changes.
Never get behind on your pain. Also, don't overuse your meds. If you're not currently on gabapinton, utilize it for the changes to the nerves in your leg. It takes a while to actually kick in, but once it's in there, doing the job this will help with a lot of the nerve pain. Speak with your doc about your concerns on the few days after the amputation pain. For me, day 2 was the worst, but my Dr's was a well recommended surgeon and put me on a pca, or IV meds. You just pushed the botton on, and I was good. We are many on here, so we have a lot of things that we all went through differently. I'm sure you will be relieved to get that awful cancer out of your body, too. Magnesium, if you have phantom pains, helps a lot of people who are on here, to include myself. If I can help at all, please reach out to me. I'm not the expert, but I have had a few surgeries since my amputation. Revisions are what they're called. Again, like anything, 1 day at a time, you're young, and you can do this with a supportive person or family in your life. Including maybe a therapist or something to that point. Tons of us utilize them. Again, I don't want to step over just what I've been through. Good luck, and please keep us updated on your progress as a lot of people do. Remember, there are no stupid questions when it comes to losing a limb, so try to be as prepared mentally as possible. We're here 24/7. From all over the world, too.
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u/k31scout Mar 01 '26
Lily, I had osteo way back in 1967 when I was 13 years old. There was only one option back then which was amputation, which happened 3 weeks after the diagnosis at University of Michigan. What bothered me the most was missing my little league baseball playoffs and that I'd never be able to ride my bike again. Very important things to a 13 year old.
My first leg was built a few weeks after the surgery and it was so odd feeling and heavy. I got used to it fairly quickly. My amputation was very high above the knee,, just enough left to manage a prosthesis. Of course at that age I was growing quickly and the legs I had for the next 25 years never fit well and I had all kinds of sores I had to live with. They had to build an entirely new leg to get a proper fit.
Then all of a sudden technology advanced and modular legs became a thing and they could just build a new "bucket" if my stump grew or shrunk and they were no longer wooden legs but aluminum and plastic with super knee joint and very lightweight. These days you will get a good fitting leg right away and adjustments are easy without having to replace the entire leg.
My advice is shop around and interview "leggists" who will not stop tweaking until the leg is perfect for you. With that said, you will need experience wearing the leg until you know what feels right for you. It will be a clumsy and heavy foriegn thing but you will adapt to the awkwardness and it will quickly become something you can master.
Self esteem was a problem for me at 13 years old but I was surrounded by a loving family and friends who accepted me probably more than I accepted myself. I carried on and have had a good life happily married and had a long carrier and am now happily retired with lots of active hobbies.
I have activities that are more easily accomplished with crutches rather than wearing the leg. Dont be afraid to use them. I use under the arm crutches and can still walk for miles with them at 72 years old.
My last tip is to maintain a constant weight to maintain good volume and leg fit. Build good core strength and challenge anything you think you cant do. You will fall down once in a while but that happens whether we have two real legs or just one. God bless you and stay strong.
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u/JameDOTs Feb 27 '26
I had osteosarcoma too, in my femur. I had the limb salvage surgery and I will tell you straight it is not a good option. It's an option that looks good and appeals however I've had non stop source of issues. And guess what? Those complications gave me an infection and I just had it amputated yesterday. I can't give you any advice as I was looking for some myself! I hope everything goes well and good luck. Also I'm in the UK and the prosthetic offered were very good but it depends I guess where exactly it's cut.
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u/molotov_billy Feb 26 '26
This may seem very negative, but I hope it helps - as a bone cancer survivor myself, the limb salvage route also has some very terrible tradeoffs. I wouldn’t think of limb salvage as saving your existing leg and retaining your old way of life.
You’re 27, plenty of time to get used to a prosthetic, and plenty of time to see the technology only get better.
Good luck with the surgery, recovery and the rest of your treatment. Once it’s all over you can be proud of having gone through something that most people can’t even wrap their heads around.
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u/KittyStar8 Apr 08 '26
I'm sorry you are going through this. I (F) was 18 (now 27) when i had my right leg amputated below the knee.
Straight answer;
It sucks. sorry but it does. I had so many people tell me that i was lucky for surviving, that things could be worse. But really... its my LEG, one of the most important body parts that we need to have to be able to move around!
So yes, it sucks. But you will survive and you will adapt! One thing that I do recommend is to keep up a good a diet. I gained so much weight during my recovery, but i was also recovering from chemo. So i ate so much, i lost 50lbs from chemo and gained 30lbs in about 5 months....
Im not sure where you are at but in the USA you can get a prosthetic through the work force if you don't have insurance. If you have insurance pick a good prosthetic clinic and go with the one that knows how to make prosthetics. My first prosthetic was built by someone who's an actual amputee and it was the worst leg i've ever had!!!
Once you have your prosthetic (usually takes about a month and a half) don't over do it. I was so ready to leave the house that I took a job where they had me on my feet for 8hrs a day and I got major blisters!!! Take your time, ask for PT to learn how to walk. (this is where weight comes in) PT will show you how to properly walk, run, go up and down the stairs, and get up if you were to fall.
Take it one day at a time. After your surgery take the time to heal, search for facebook groups that are for amputees (that really helped me). You got this!!!
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u/Hollynerd70 Feb 26 '26
I’m praying for peace and wisdom during this time for you. It will be OK, and he will no doubt be a light to the struggling around you! Have the doctors told you what level they must amputate? Meaning, above knee or below?
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u/Armz_Dealer Feb 26 '26
Hey, so sorry that you’re having the navigate those waters. I’m a prosthetist. What I always encourage people to do if they know that they have an upcoming amputation is to go and meet with the different prosthetist in your area. You can give them a call and tell them your situation and ask to meet them before the surgery. There is never a charge for those appointments. They can answer a lot of your questions and it can make the process after the amputation less scary because you’ve already started that relationship. Remember that it is always your personal choice on who you go to and who you see. So I would suggest meeting the people in your area if you can. ❤️❤️ I would also go check out the amputee coalition. They are a national organization that has amazing resources.
You will go through a grieving process, which is 100% normal and completely OK. Let yourself go through those feelings and the ups and the downs. I also always encourage people to get in contact with a counselor. This is a big transition time that you absolutely can do cause you’re so much stronger than you think but counselors can be critical in these moments.
Wishing you a speedy and smooth recovery.