Thank you all so much for your advice and help. I have made my decision, which I know to be the right one for me. Here is a comment I put on another discussion I did explaining my decision if you're interested:
I have actually made my decision today for the amputation. After telling my surgeon how I felt like I needed a second opinion, not so much to spare my leg, but more to know that I'm making the right decision, 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.
Make sure you ask for a spinal, they offered it to my husband, his was above the knee, and he had no pain maybe it was a 3 he said. He was alert and awake 5 hours later and had no pain until they rolled him over on his stomach to start getting his leg moving. when you have a thigh amputation your leg tends to want to aim upwards without the weight of your leg. So ask for the spina lif they don't offer it, I'm sure they will but being knowledgeable is important. Best of luck and we will be praying for you here.
Sarah said:
Thank you all so much for your advice and help. I have made my decision, which I know to be the right one for me. Here is a comment I put on another discussion I did explaining my decision if you're interested:
I have actually made my decision today for the amputation. After telling my surgeon how I felt like I needed a second opinion, not so much to spare my leg, but more to know that I'm making the right decision, 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.
It's the same thing they do for pregnant women during labor. Except they just give you a spinal block after they put you to sleep,and it keeps your nerves numb from the waist down for a few hours. The next day they had Pat up and using a walker, 3 days after a complete midthigh leg amputation he was headed home. So they get you up and moving. You'll do great. The attitude is the most important thing to go into the surgery with. Best of luck.
I am so glad to hear that, what Dr Wunder did is what should happen and know that you are doing the right thing. We are keeping you in our thoughts & prayers. Getting copies of all your medical reports later is a good idea for your future. Look forward & stay strong!
Oh Sara --I am so very glad you had the chance to consult with Dr. Wunder !! Stay positive & strong & We will pray for you and send positive thoughts your way especially on Thursday!!
Thank you so much everyone, for all your advice, guidance, stories, and support. I am so blessed to have found this community, I don't know what I would've done without it. You all have a place in my heart. Stay strong, I know all of you are. Keep your faith, not matter what exactly you believe in, because without faith where do we get our hope? I hope you all have success in your treatment and I hope that one day a truly effective treatment will be found for this horrible disease. I can't put too much hope in a cure but I still hope. No one deserves this, yet it's still a blessing in it's own way. I've grown a lot as a person, maybe too much past my age, I am only 14 but I feel much much older. No matter what I will fight this, and I will come out on top, because as long as you fight the cancer despite it's menace, you're still stronger than it. Feel free to add me as a friend and message me if you have any questions. I will be sure to post a follow up. Thank you all again. Stay Strong and Fight On :)