Diagnosed with sarcoma? Let's share

Hello @william2022 and welcome to Mayo Connect. I so appreciate you sharing your journey with liposarcoma. It is very encouraging to hear about your successful treatment. I'm sure you are relieved to know that the suspicious mass, removed last month was benign.

Is the lower back pain a result of the liposarcoma surgery?

I was diagnosed in Florida (not Jacksonville Mayo). What they had planned for treatment likely would have killed me. My primary said they wouldn’t touch what I had but referred me to Rochester. You are right, they are the best!

I have inoperable lipo sarcoma attached to my hip. Other bits have been removed with resectioning of bowel.
Have had 15 radiations and 5 chemo's.
Will get a scan at end of month to see what is next.
This is all after a resection of bowel in 2001 from a mass tightening around the outside of the bowel.
No scans until 2021 because of a cloudiness on dexascan.
A patient at Wilmot Center of Strong Hospital in Rochester, NY

I agree with you wholeheartedly even though I have benefited from a distance. There is an interdisciplinary Sarcoma Board with membership which includes Mayo Clinic, Cleveland Clinic, Aurora Medical Center (my own healthcare center), Northwestern and others. The board meets virtually every Monday and my case was presented to the board just after I was diagnosed. I feel extremely fortunate that I was able to benefit from such extensive combined wisdom in the course of my treatment and now continued annual reviews.

Of course I also feel very fortunate that I have had very good health since my surgeries in 2017.

I hope that in some way I can be helpful to those here who are struggling with so many extraordinary challenges. My prayer today is that all may benefit from a period of deep peace.

William

Mayo oncology is the best. I did not go for. 2nd opinion because I had confidence in my Drs.

I was diagnosed with de-differentiated liposarcoma in May of 2017 at Aurora Medical Center located in Milwaukee, WI. The mass was located in the upper right wall of my chest. Following 34 days of radiation therapy, I first had surgery to remove the mass and ten days later a second surgery to reconstruct the section with a latissimus dorsi flap. Cancer free for five years now but did have a suspicious small mass surgically removed last month which was benign.

I am currently a patient at Mayo in Rochester where I am seen quarterly for injections to relieve lower back pain.

I was diagnosed with Pleomorphic liposarcoma in 2017. Surgery removed the tumor. Radiation and Chemo followed. It just popped up out of nowhere and grew very aggressively. To date I have not had a reoccurrence.

Not yer but I am looking forward to it. Most of my pain is in my nonexistent shoulder.
I find comfort in my phantom arm.

Dlady, I'm just seeing this now. So great to hear that rehab is going well. I agree that the rehab people on Generose 4 on Saint Marys Campus are fantastic. Did they offer any guidance on dealing with phantom pain?

Did the surgery in 10 hours. I am in Rehab now and am walking without a cane. In OT I filed my left nail yesterday. The plan is to return to independent living by Oct 5. My phantom arm gives comfort most of the time. Thanks for asking.