Diagnosed with sarcoma? Let's share

Thank You Colleen,
Your email has relieved some of my stress about what happens when I leave the hospital after my Fourquarter Amputation. I will meet with a Radiologist on Mon June 27th as the team decided I may need Radiation before surgery.

I feel like I would need some type of in-house rehab after the surgery since I live alone. Dr. Anderson said I would need to stay at a hotel or Airbnb if I received rehab in Rochester. I have Medicare and GEHA insurance which at many facilities would pay for rehab. I would certainly be willing to stay in a Rehab facility in Rochester however would not like the expense of staying at a hotel for any length of time.

I am considering moving to LaCrosse WI after my surgery as medical care where I now live in Northern WI is very limited. And yes I do live in a cabin in the woods. It is 35 miles to the closest small hospital in Ladysmith WI. Sawyer County where I live has their own ambulance service. The EMT’s are volunteers and it may take 1/2 hour to get to me provided they do not get lost. If serious they get a helicopter to land on the ball field in town for transport.

I have checked with Riverside Rehab in La Crosse but can not make any arrangements until after the surgery.

Thank You for your continued help.

My partner of 17 yrs had a malignant nerve sheath tumor on his right arm in 2021. We first noticed a lump about March of 2021 and thought it might be a Lipoma, we watch Pimple Popper, and it grew pretty quick which I Googled and did not like what I kept seeing. He has VA and Medicare is now 61 will be 62 this August. He had a biopsy in August of 2021, which required 13 staples. After the staples were removed, the tumor started coming out the site of the biopsy! It was unreal. He began radiation in Oct. which to me was too long to wait while this thing was growing out of his arm. He completed 26 days of radiation, had a surgery to remove on Dec 22 2021 what was left of the tumor, only to have it come back. On the 4th Feb. of 2022 he had to have his right arm and shoulder amputated. I'm trying to be brief and clear at the same time, so bear with me. I took him to the ER on June 6th for high blood pressure and high blood sugar, they ran a lot of tests and saw nodules in his lungs. A later biopsy showed it was cancer. We went to see an oncologist on June 24th Friday , we had a surgical one not a regular one at this time, and he told us it was stage 4 sarcoma. This oncologist said he was not familiar with this type, and will be sending us to St Louis which is 4 hours one way. Eldon is my husband's name, I'm Marie. He is in pain pretty much all the time. We are waiting for a PET scan appointment and a date for a doctor at Barnes Jewish Hospital. That's where we are at now.

I will pray for you and your husband. I am a patient at Mayo Rochester MN. They have treated my Lipo sarcoma on my chest/ shoulder beginning in the 90’s. It is now aggressive. I will be going through a month of radiation and then a Four Quarter Amputation of my arm/shoulder. It will not be easy but I am in the best hands and have confidence in my Drs. Most medical centers do not have the experience in treating our disease. I would recommend taking your husband to one of the main Sarcoma Centers like Mayo. Sorry you both have this challenge.

Dear Marie and Eldon, Yes, it's terrifying and a very stubborn cancer. I also have stage 4 sarcoma and highly recommend hospital that specializes in sarcoma. We keep you in our prayers and wish you a good outcome in St. Louis.

@sanzbozo, I want to add my welcome along with @damlady2 and @vivianfromaz. I hope you saw their posts to you.

Have you heard from Barnes? How are you both doing?

No we have not heard from Barnes yet. Eldon was supposed to have a PET scan yesterday, and they had to cancel due to his high sugar. He has 20% of his pancreas left, and as a result of that, is a type 1 diabetic. Luckily, we got another one scheduled on the 18th of July.

I was diagnosed with high grade de-differentiated liposarcoma in May 2017 in the upper right chest wall. Following 2 surgeries to both remove the mass and rebuild my chest I have been living cancer free for five years.

Last week a lump was identified on my right femur. I met with my surgeon and we have scheduled an MRI for next Monday.

I am a wreck.

Yes times like these are very difficult. I have sarcoma diagnosed 2018 and have been in constant treatment. Find a supportive and loving friend! Hugs!

Hello I’m Barney
1 Aug 22 I was diagnosed with angiosarcoma in my neck. Iv head surgery to remove all the lymph nodes and any sign of a tumor from my neck. Still recovering from surgery. I have been told I need 30 rounds of proton therapy for my neck. But no chemo at this point. Now if the cancer is removed why would I need 30 rounds of proton. That seams a bit much. With this being such a rare cancer I can’t find a whole lot on it. Does anyone know where to find more info or can help me out. Thank you.

Barney, we have an extremely rare and dangerous disease. Mine is sarcoma of the soft tissue and first appeared on my back around the shoulder blade. I've had surgeries chemo, radiations. Keep asking your doctor. Why so many? Are there alternatives? (Fewer treatments?) It's a lot to take in especially at the beginning. Sorry I can't be of more help.