Pleomorphic Sarcoma retroperitoneal area: Inoperable, what next?

Hi @whitt, it sounds like this have been moving fast from diagnosis to treatment to inoperable. You must be so worried and scared. I'm tagging some other members who have experience with pleomorphic sarcoma, although not necessarily in the retroperitoneal area.

Radiation is often used to to shrink a sarcoma and maybe make it possible to remove surgically. Chemo or chemo plus targeted therapies are sometimes also an option. Some targeted therapies only work in people whose cancer cells have certain genetic mutations.

How often is your husband having radiation treatments? When will they do a scan to see if it has shrunk?

He’s having radiation 5x a week. He just finished his 10th with 15 more to go. He’s so sick; already anemic and losing over 50 lbs. Originally, I thought they were going to scan him in the midst of his treatments; still may. One of my main concerns is, he’s not able to keep much food and sometimes fluids down and already has had multiple IVs for his dehydration. Thank you for asking.

I am so sorry to hear that you and your husband are going thru this. My heart hurts for you and will be praying for you both.

My dad was diagnosed with pleomorphic soft tissue sarcoma back in 2007. Back then it was extremely rare and there was little information about it. His tumor was in his thigh, being 17 inches long, 15 inches wide and weighed 12 pounds. It was wrapped around his muscles (had to be removed) and deteriorated his bone (metal rod was placed). He did a massive dose of chemo and radiation and ended up throwing blood clots thru his heart and lungs. Was unconscious for about 3 weeks and then woke up. Continued to do radiation to harden the edges of the tumor more than shrink it to help with removal. When they removed it, the tumor broke open spilling the contents into his leg cavity. They did a chemo flush, but shortly after that the cancer spread to his lungs, his lymph nodes, and eventually to his brain. The tumors grew fast and instead of losing weight he gained weight due to all the tumors growing. From start of diagnosis to the last day he fought that evil beast was 2 years. Many more chemo and radiation treatments, blood transfusion to bring his numbers up to be able to do chemo. It got to the point I had to ask what all this treatment was giving us….another year, month, days…once they finally admitted there was nothing else to do, we made the decision to do Hospice (which was the best thing we could have done), so we had quality vs quantity.
Find someone you can talk to, vent to, cry to, scream to…just so you aren’t going thru it alone. Hugs to you!

I’m so sorry about what happened to your Dad. It is a rare sarcoma. The chance of this Pleomorphic being in his abdomen is even more rare. He’s on radiation treatments and praying for the best!

Whitt,

I am so sorry to hear about your husband. I had an undifferentiated pleomorphic sarcoma around my heart. It has been very scary for me and my family since my surgery just over two years ago. I did chemo but had to stop due to heart damage. I have since been doing immunotherapy. What advice can offer is find someone to talk to… even if you don’t talk. You need a safe place for you to cry, scream, or just to be. This was/is so needed for the patient and any caregiver. You need a person for you who can just be there… no matter what for. Prayers with you.