Diagnosed with sarcoma? Let's share

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.

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.

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.

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

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

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 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!

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?

Welcome @bicycle3. I look forward to learning more about you. How are you feeling after radiation and chemo? How is your mobility?

I’m a 69 year old male in otherwise generally good health. In September I was diagnosed with Liposarcoma of the Retroperitoneal area with a 6.1cm x 6.7cm tumor abutting top of my left kidney. Telltale symptoms (fatigue, night sweats, dry cough) began in April. The diagnosis was made at Fox Chase Cancer Center of Temple University Health Systems in Phila. The pathology report after biopsy of tumor indicates a subtype of well-differentiated cells, though the Surgeon Oncologist said there is potentially some de-differentiated cells showing up in surrounding fat. His recommendation is five weeks (25 days) of radiation on the tumor area, followed by 5 weeks of recovery, then open surgery to remove the tumor mass, left kidney and possibly the spleen. The left kidney is currently healthy and is only abutted by the tumor making it close in proximity. Per the surgeon, the reason the kidney would be removed is due to the damage caused by the radiation treatments. In my meeting with the Radiation Oncologist, I asked if the radiation treatment can be made precise enough to treat the tumor and prevent/minimize damage to the left kidney. She said that she would adjust the target area based on what the surgeon’s plan was regarding the margin he plans to remove (full kidney or partial kidney). My hope is that both radiologist and surgeon can agree to work to spare a portion of the left kidney, but I don’t think the surgeon is inclined to change his plan. I am going for a second opinion at Penn Medicine Sarcoma program this coming week, but Fox Chase doctors bizarrely told me in advance that they expect I will be told by the Penn doctor that he recommends surgery up front, without radiation treatment. If so, that demonstrates how rare this cancer is, where two leading cancer treatment centers in the same city do not agree on the same treatment protocol. If the second opinion recommendation by Penn Medicine is for surgery up front as predicated by Fox Chase doctors, I may be facing the need for a possible third opinion.