Diagnosed with sarcoma? Let's share

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.

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

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?

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.

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.

@me67

Your Mayo experience sounds wonderful! I appreciate your sharing your story with our Connect Members.

Teresa

@c945105

Your husband sounds like a person with remarkable resiliency! We all wish him well.

Will you please keep us updated on how he is doing?

Teresa

Heather is a loving caring person, and has one biological child Nicole age 12, and three other step children, Joe, Dillon and Brittany. Over the years she complained about her right leg bothering her. Many times she lay in bed crying because the pain was so unbearable. After 7 visits to the ER for the same leg pain. On January 2nd just a few days from her birthday she was diagnosed with cancer. She was transferred to IU cancer center the following days from Porter Manorial. There we would learn the type of cancer she had. A biopsy was done but no result could be given because of the rarity of the type of cancer. We later learned she had Osteosarcoma a rare bone cancer. To make things even worse she had to undergo 10 hours of surgery on February 14th 2017. No much of a Valentines present huh? They had to remove 15 centimeters of her femur bone and also replaced the hip ball.

Recommended treatment is chemo therapy to shrink the tumors. About two months into therapy we learned that they had found 3 more masses in the right lung, Then again another mass in her pelvic area. I feel so helpless for her because of the pain she has to endure on a daily basis, all she does is lay and cry in excruciating pain from the bone cancer. I even asked the doctors why is she in so much pain? They all say "The Bone Cancer". Therefore it constant trips to the ER to try and get her Acute pain under control. Pain specialist are now trying to get her comfortable until the pain "pump" can be put in on the 21st. of September.

My wife has Osteosarcoma and is only 32. It really hurts to see her in so much pain. Dr. Rushing at IU Indianapolis is an expert in this type of rare cancer. This Dr. is amazing how he explains the type what it does and what to expect. According to statistics and research IU is the #1 hospital for Cancer in Indiana. IU is also connected to several hospitals Riley, St. Jude, and others. Never seen a hospital so huge. All I know from my experience in UI they are great people who care for my wife. They have compassion and empathy towards there patients. All you can do is be there for them and stay strong. I try as much as possible but at times I break down and cry to see my wife suffer this why. It even hurts more for her to ask WHY ME? The pain is so excruciating for her she asked them to just cut her leg off. I am optimistic the pain pump will work and they can continue with chemo to beat this.

Thanks so much for info and also so glad you are doing great:) It's always encouraging to hear the success stories. We asked the one oncologist we've seen about proton therapy and he said it might be possible but most success is with tumors that are very defined in shape. Curious if your cancer was on the iliac or hip bone or somewhere else? Thanks