Diagnosed with sarcoma? Let's share

I think Mayo Clinic is your best choice. They saved my life with their proton beam therapy and I did not have to have chemotherapy. My surgery was 8.5 hours with 3 hours of recovery. This was in June 2017. I will be 68 this December. I am going to the gym 3 days a week and hiking already. They were wonderful sarcoma doctors.

Hello my name is Cyndi,

My husband 51 has just been diagnosed with osteosarcoma. He had rectal cancer seven years ago and has been cancer free for six years. They are saying that the rare sarcoma is due to the radiation he received for the rectal cancer. Very rare side effect apparently but we always seem to fall into Murphy's law, 🙁 It is on his left hip iliac and moving downward to the sacrum. He's very active in excellent health and a small place in his hip started to have pain around the May time frame stopping him from playing tennis. He thought it was a disk issue and consulted several ortho and did two rounds of physical therapy with no real improvement. The ortho brushed it off and said he just has an 60 year old back in a 50 year old person but I'm glad my husband pushed him for more and finally got an MRI. Anyhow, we are just started on this journey (once again) and it sounds much worse as it's so rare and my philosophy is get to the best medical team possible and is dealing and seeing the type of cancer frequently. That said we are fortunate somewhat to live in the Chicago suburbs but even in several highly respected research hospitals here these specialists are rare. It seems University of Chicago is the best and we are working on getting a consult there quickly. From my research, of course the big 3 Mayo, Anderson, and Ketterling sound like they have the most experience in seeing the rare "hip" bone cancer but because it's so rare I was wondering if anyone had experience with this type of cancer and your experiences or thoughts on the three hospitals. We need to get this analysis and consults done quickly obviously to start treatment. My husband has the most positive attitude which is amazing . With the rectal cancer he endured the chemo, radiation, and two operations and kept on with his normal life and even improved his tennis game (he's a high level player) including the 3 months he had an ostomey bag. I think he only missed 4 days of work which was when he was in the hospital. He treats it like a injury and knows he's just got to do what the Dr. say and things will get better. He's a fighter for sure. We have a 13 year old and 11 year old who we told yesterday and handled it well as we will let family know this weekend. Any advice or experience with this type cancer (good or bad) is appreciated. Thanks so much.

@wendy76 I hope you are doing well. Sounds like you should be 2 months in now. I know how you feel with the two young children. Sending positive thoughts and prayers.

My wife has been diagnosed with osteosarcoma bone cancer on her birthday of this year then had major surgery done on her right leg on February 14th. The pain my wife is going through is un describable. All she does is cry in excruciating pay. We were told after the surgery the pain should go away. Now it has gotten worse than before surgery. They also found 3 small masses in her right lung and now where they have already done the surgery a place was missed next to her pelvic. This is where all the excruciating pain is coming from. I feel so helpless since really nothing I can do to help her accept be their for her. People make me angry making comments like is she really in that much pain? I placed a site up for her go fund me to try and get help for us. I am a service connect disabled veteran, and she is on SSD. So its really tuff since we have to travel to Indianapolis Indiana 2-3 times a month from Michigan City Indiana. 3-4 hour drive. Anyone know where I can get help with information, grants charities? I am hold up as well as expected but at times I do break down and start to cry. However I never try to do this in from of her of course. Why don't they just removed the tumor by her right leg which is causing the pain?

That is awesome news! I am so happy to hear of your fantastic medical results and your continued recovery!
I am due back mid-October for a CT scan and hope to hear the same. I am back walking and was encouraged to get back to my 3 miles at nearly the pace I was pre-surgery. I still have some breathing and voice issues, but hopeful those will continue to improve.
Stay in touch!
Deb

Hello Deb, I had my six month visit with Dr. Moore a couple a weeks ago and I am happy to report I am cancer free and well on my way to recovery. I have been working out and now built up to a 4 mile run which has been challenging to do because of the paralyzed vocal cord which still blocks about half of my airway. The good news is that I really do feel very good. Please let me know how your recovery is progressing. All the best Jeff.

Thinking of you today, Wendy. I know today you started chemo. I'm sure it was a long day. Just wanted to let you know that we're thinking of you.

Hi @wendy76,
You're asking good questions. Each person and situation is different. If you call Mayo Clinic http://mayocl.in/1mtmR63, they can answer your questions specifically tailored to your situation. Gaybinator and Me67 are quite right that it can help to have your doctor call, but it is not mandatory that a referral be made by a doctor. You can call to ask your initial questions.

Get your doctor to recommend you to Mayo and you will get in faster. Plan on spending the day there because you will see all the doctors in the same day. They are all so advanced. Good luck. Let us all know what you do and decide.

If you decide to go the Mayo route, you should ask one of your local doctors to call and make the arrangements. My husband was under the care of a local Mohs surgeon for Squamous Cell Carcinoma - Spindle Cell. When the local dr decided that it was beyond the scope of local medicine he called Mayo. We live 6 hours away. When we arrived, we had an appt with a Dermatologist, Radiation Oncologist, Chemo Oncolgist, General Surgeon and Plastic Surgeon - all at once - in the same room. While Mayo is certainly accommodating, without the local doctor's liaison, I don't think we could have done that on our own.

@colleenyoung Yes, I feel a great deal of support from family that is not local and friends that are local. My family members have been taking shifts staying with us and helping with the kids. My mom is on her way back this week to stay indefinitely until this is all over. And local friends have been bringing meals, helping with housework, and offering to take the kids often. It doesn't take my worries away completely, but it helps and I feel very lucky. I've been wondering what the process would be like if I were to call another place like Mayo. Would it be a long process of medical record exchange and reviews and wait time until someone could actually look over all of my medical history? I worry that it would delay my treatment that is scheduled to start 5 days from now. And how would sarcoma experts from Mayo be able to consult with my local team of docs?
@me67, thank you for your helpful personal advice... I'm going to look into what can be done on a consultation basis since it isn't realistic or feasible for me to leave my kids and travel back and forth to a far away place.