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Just diagnosed, trying to avoid amputation


#1

So, here is where it started. I had what I thought was likely just tendinitis for the last 9 years that developed after a trauma to the inner elbow back then. I had been advised to wear a brace for the tendinitis two years ago, which prevented me from paying close attention to that area. In September 2013 I developed numbness in areas of my left hand that, while it has not impaired functionality, has never gone away. My doctor's response was that it was likely carpal tunnel. A month later my doctor noticed a hardness in the nearby area that concerned him and sent me for an MRI.

MRI in November (delayed by the insurance) finally showed a tumor that is at least 10 cm. The tumor is wrapped around my arm in the inner elbow area, surrounding nerves which is causing my recent finger numbness. Biopsy at Mass General eventually followed in November, but we were told it would likely be benign. Diagnosed as Synovial Sarcoma on 12/11/2013. PET scan on 12/13/2013 showed that it has not yet spread. Dr. Raskin and his team at Mass. General told me on 12/16/2013 that radiation is not an option due to the size and location. Further, they said that due to the size and location that an amputation was my best option. I am very resistant to that idea. I am in the process now of trying to get a second opinion on treatment options.

Any thoughts on this are greatly appreciated. Again, it was just yesterday when I was told that amputation is my best option. That is more than a bit hard to deal with. I am hoping that doctors at Dana Farber will be able to give me other options. I have my first appointment there this Friday the 20th.


#2

I know a girl that had the same thing but her tumor was much larger. She did a treatment called AIM. She did four or five treatments and it shrunk the tumor enough so that they can go in and do treatments. This treatment is a trial treatment.
God Bless and best wishes.
You can make it through this. Four year survivor back in remission.
Belisa Sherman


#3


#4


#5

Hello, my boyfriend is actually in the same situation as you, his tumor is about 8cm and on his wrist. The doctors are also saying that amputation would be his best option because the tumor is so big in such a small area. With surgery and not having clear margins, they are saying he may not have use of his left arm because it is so close to the nerves of his hand. However, they are putting him through 5 weeks of radiation in hopes of shrinking the tumor. He did have to do chemotherapy a very harsh treatment, but after two rounds the tumor was not shrinking so they stopped it early. I say you try out the chemo, or radiation. Do not give up try all options, sometimes they work and sometimes they do not. But at least you can say you tried. Also we are getting a second opinion to try and salvage his left arm as well.


#6

What kind of treatments as far as chemo did he do?


#7

He was scheduled for 5 months of chemotherapy his regimen was 4 straight days of chemo & 3 weeks off. With Adriamycin, isofamide with mesna. After 2 treatments they did an MRI and the tumor did not really have a reaction to it so they stopped.


#8

I had a tumor on the instep of my left foot that persisted for years. Was told many times by many docs that it was nothing to worry about. It finially became so bothersome that I had it removed in Nov 2012 and with a routine pathology, discovered it was SS (in a very odd place, so never suspected). Was told right away that amputation would be the only answer. I was referred to a Dr. Ross Wilkins with the Limb Preservation Foundation in Denver, Colorado who offered me another option. It was a major surgery that lasted many hours and meant removal of a major portion of the foot and a graft onto it from my stomach area to reconstuct it. That happened exactly a year ago (I spent Christmas in the hospital). I've spent the last year recovering in bed initially, then wheelchair, then a walker, crutches, cane, etc. I also had some radiation. I am now walking without aid, have been checked repeatedly and am cancer free.

I was his case study for the wonderful group of docs involved with the Foundation in January. I asked why I was his 'Poster Child'. He responded that it had never been done before and if I had gone anywhere else (including Mayo Clinic) that I wouldn't have a foot right now. I don't know if he can help you, but it's sure worth a try. I have seen many patients in his waiting room that come from all over the country, including veterans from war and a little girl from Maryland who had been told amputation was the only answer. She doing well and intact today. Good luck to you!


#9

Amputate asap. That is your best option. My son had synovial in his right knee at the age of 21. He regretted not amputating. he would have saved himself a lot of pain and in the end still had to amputate. Chemo and radiation do not work on Synovial Sarcoma. Go organic . Go to Mexico Gerson Clinic. 7 years later after 7 rounds of chemo and 35 rounds of radiation he went to be with the Lord. Sorry to be so blunt but I am speaking from experience and would want to spare others the night mare. God bless and guide you,

Synovial Mom


#10

Get the amputation done I totally agree with synovial mom, it will save u a lot of pain and heartbreak in the future. We asked for my husbands leg to be amputated but were refused now he has 5 tumors in his leg nd numerous ones in both lungs if I could turn back time I would have cut his leg off myself to save us from what we are currently going through. Best of luck in what ever u decide x


#11

Amputate brother. I was diagnosed in September of this year with a small tumor in my knee. The top limb salvaging expert in Australia (top 2 or 3 in the world) told
me that there was no other option other than amputation. I lost my left leg above the knee in October. There are a lot of miraculous stories out there about survival but the general theme is that if you try to cheat your way out of this thing, you lose. Doctors tell you to amputate for a reason. It’s shit. It’s a bad, bad, horrible, unfair, nasty thing to have to do, but you just have to okay the cards you’ve been dealt. Choose life mate. You’re lucky that you caught it in time. Feel free to contact me if you want to talk about it with somebody who has recently been through it.


#12

By the way my son had his leg amputated in August and by Thanksgiving in November he was snowboarding on a prosthetic .Also I was told that if your prosthetic slips due to sweating you should get a botox shot to stop it.God bless all of you brave men and always smile and be thankful.

Synovial Mom


#13

Are they willing to do targeted radiation to see if they can shrink it back? That could buy you time....

Number 1, my advice, is to trust yourself above all else- and what makes you feel the safest, and the best. After you take in everybody's advice go with your truth. make sure you really feel good about your doctors. the orthopedic team at Beth Israel are amazing and I trust them very much. but I am also very passionate about supplementing their treatment with the natural view. I need the balance of trusting my healer within and my team at Beth Israel. most people don't take alternative methods seriously until their doctors tell them they will die.
I was diagnosed with a synovial sarcoma in my ankle this October. the year before I was diagnosed with tendinitis. I had five weeks of targeted radiation. I also made my diet completely alkaline, started juicing, started b-17, the kelmun protocol, the budwig protocol, and my favorite- the mineral cesium. If you do try cesium or kelman- deeply understand what your doing- it can dangerously lower your potassium levels as it kills cancer, there are good coaches out there to help you with this. last thursday I found out my tumor had shrunk by almost half!!! AND showed areas of low intensity/probable calcification- cancer death. by the way my Oncologist tackled me with joy I feel it was NOT JUST THE RADIATION. I also have delved deeply into the mental and emotional reasons I may have become sick, and that has really empowered me too.
right now I am struggling with accepting surgery when I have such strong conviction I can beat this myself. at least I have dramatically increased my odds of full recovery, and I am so sorry you are dealing with the recommendation of amputation!
here are some things that helped me- first of all give up sugar, wheat, and refined food right now!! sugar feeds cancer and makes it grow! I noticed an immediate difference, in less then one week i could walk with almost no pain, when I did this.
www.cancertutor.com - there is an article "first thing you should do when you have been diagnosed"
http://www.outsmartyourcancer.com/ - her book is how I found and chose the amazing cesium protocol and a coach to guide me. cesium can even be applied topically to shrink tumors. What I love about this book is it discusses most of the alternative protocols out there, and then you can decide what would work for you.
http://www.alternative-cancer-care.com/ this link is not for everyone! but if you personally resonate with their view of how stress and emotions can cause cancer it might help you. I fit the "cancer personality" so well and had a major trauma in my life before getting this diagnosis that I am sure lead me to getting sick, so this website really helps me!
http://canceriscurablenow.tv/ - free online documentary and a great introduction into the alternative view of healing cancer.
the authors Louise hay, who healed her cancer with the power of her thoughts and healthy living, and Bernie Siegel, a surgeon who made it his life's work to understand why some people heal and others don't, are invaluable to me.
we are both lucky to be in Boston. I am sending you my prayers, please let us know how you are doing, and if there is any more information I can provide, let me know!

#14

Thank you everyone for your responses. I haven't been around for a while as I just got back from my honeymoon...yes, the definition of bad timing. Anyhow, hearing about other's experiences on here has been very helpful as I learn more about this whole thing. FireLight, I am especially interested in alternative methods such as the ones that you suggested and I am pursing some of them now. Any kind of radiation is not something that any of the doctors are willing to try because of the size and location of my tumor. I am not willing to go through with an amputation, so I am still looking for other alternatives. I have an appointment with these folks later this week that seems promising: www.neoplas.org


#15

Thanks for keeping us posted Johnboy.


#16

FireLight,
I am so into the alternative approach but find it so hard to figure out. Upon my bf’s diagnosis 3 months ago I immediately started investigated alternative approaches and was lead to believe that an alkaline environment was best… Today I just read that this specific cancer shld be battled w an acidic environment. Please let me know what you think. This is the problem w not having a Dr to refer to. I am trying my hardest to understand the science of this, so I can help my bf beat this disease, but I’m finding it really difficult to figure out an effective holistic protocol.


#17

Hi. I would like to recommend a dr by the name of Timothy Rapp. He works as an orthopedic oncologist at NYU Langone. He was the only Dr that didn’t immediately want to amputate my boyfriends arm. He is a top Dr in his field. And his bedside manner is more than comforting, something I find most oncologists lack. Hope you are well.


#18

Hey Johnboy, Sage, Elodie and Everyone!

I have been thinking so much about you and everyone in our group. I just wrote my first blog and included my thoughts on Holistic Healing, my take on beating cancer and my own personal update. Let me know how you are doing. :)

http://www.synovialsarcomasurvivors.org/profiles/blog/list?user=1hl...

Firelight