Diagnosed with sarcoma? Let's share

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.

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.

Hi Dlady, I can imagine that you're thinking about adapting to your "new normal" after the forequarter amputation of your right shoulder.

It seems to me that you and your rehab doctor may be talking about different stages of recovery. I agree that the days and possibly weeks after surgery, you will be limited in your activities and may require varying amounts of pain management. Since you live alone, I think it is wise of you to inquire about transitional rehab at a facility.

Would you be able to remain in Rochester to stay at rehab there?

I can only offer you my prayers for light and love. One day, one minute at a time. Breathe. It ain't going to be easy but it beats the alternative! I'm telling you what I tell myself. -- stage 4 cancer warrior 4 years in. No, I've never faced an amputation. But three surgeries seven different chemo drugs and four radiations. Hang in there!

Update. I will be scheduled soon for a Four Quarter amputation of my right shoulder/arm. This will be at Mayo Rochester. I am most concerned about after surgery adapting to my new reality. Rehab Dr said I can do everything I did before. I do not understand this as I assume I will be on pain killers and not be able to drive, walk up stairs without assistance or many other tasks. I live alone in a remote area am not near a PT climic or hospital. Are my worries not founded? I am will to go into a transitional rehab facility.

Biopsy results just came back. Scheduled to meet with surgeon on Tuesday. Will update. Thanks

Hi Mary, oh, I’m sorry to hear about this new diagnosis. How was your husband’s cancer discovered? What treatment plan has been suggested?

Husband has just been diagnosed with soft tissue sarcoma

Trying to learn about this SRCC type of Cancer
Posted by caragiver1 @caragiver1, 12 hours ago
RCC with 60-70 % sarcomatoid features
My husband on Dec 2 went to ER for lot of blood in urine !,we thought caused was from a kidney stone ! Because 1 year before same thing happened only it wasn’t as bad as this time /husband was sent to urologist back then who but nothing was done // fast forward to dec 2nd 2021 at ER we found out from CT there was a 7.8×5.6 tumor in left kidney which was removed and biopsied and it was then we were told Husband has stage 3 -grade 4 Renal cell carcinoma with 60-70% sarcomatoid features // my husband started Keytruda !! .. I’m hearing good reports about keytruda but everything I’ve researched on Sarcomatoid feature is poor !, I’m reading the higher the percentage the poorer the prognosis;.( I am hoping to learn more about this awful cancer !.. thank you in advance for any insight .

I posted this earlier in the cancer section

3 years ago my oncology surgeon told me this was only thing that would stop this cancer. I refused and he had not pushed me to make the decision recently.
I am taking the chance that it will not spread and affect my arm more than it is now. Currently I have some arm/shoulder pain but am getting a cortzone shot in my shoulder next month.