Patient Story

On Cancer: Ron’s Story about Soft Tissue Sarcoma

By Memorial Sloan Kettering  |  Friday, March 22, 2013
Pictured: Ron Kraemer Soft tissue sarcoma patient Ron Kraemer

Ron Kraemer was 50 years old and living in Sarasota, Florida, when he found a lump on the right side of his chest. It was the spring of 2010. He didn’t know it then, but his two careers – leading a jazz/blues band and launching a business as a personal fitness trainer – were about to come to a hard stop. And there was a chance that he would never be able to engage in either activity again.

Because the lump “didn’t hurt and wasn’t having an impact on me in any way,” recalls Ron, ”I just kept an eye on it – much the way I would for a muscle bruise, which is what I thought it was.”

But that August the lump became inflamed after he played just a few rounds of golf. Ron saw a specialist who gave him alarming news: The lump might be a soft tissue sarcoma.

Only about 1 percent of people with cancer have this type of tumor. It arises in soft tissues of the body such as fat, muscles, nerves, tendons, and blood and lymph vessels, which connect, support, and surround other parts of the body.

Ron’s doctor told him he should go to a place where they treat this disease on a regular basis, such as Memorial Sloan Kettering Cancer Center. 

“The seriousness of my situation really sank in when my doctor asked me how quickly I could get there,” Ron says.

A Drive, a Diagnosis, and Surgery

Luckily, Ron’s parents were still living in his native New Jersey and he would be able to stay with them. He drove up the East Coast. Several days and 1,200 miles later, he met with Carol Morris, a Memorial Sloan Kettering orthopaedic surgeon who specializes in treating soft tissue sarcomas.

“Because my doctor in Florida said that only a biopsy could confirm what he suspected, I was concerned but not panicked during the drive,” Ron says. “And even if it was cancer, I figured they could pop the thing out of my chest, stitch me up, and send me back to Florida. The harsh reality really only hit me in Dr. Morris’s exam room.”

The biopsy that Dr. Morris performed on the day of Ron’s initial appointment revealed the presence of a high-grade myxofibrosarcoma, a common subtype of soft tissue sarcoma that begins in the fibrous tissues that hold bones, muscles, and other organs in place. In Ron’s case, the tumor in his right pectoralis (chest) muscle had grown next to the major nerves and blood vessels supporting his dominant arm – a serious concern for a man whose career required excellent function in that arm.

Three days after their first meeting, Dr. Morris removed 80 percent of Ron’s major and minor pectoralis muscles on the right side. She explained that he was likely to have physical limitations after the surgery. But his band and his work as a fitness trainer proved to be powerful motivations for him to restore dexterity and strength in his right hand and arm.

“I started stretching soon after surgery with the goal of getting back to where I was,” he says.

Radiation Treatment Close to Home

The pathology report showed that Ron’s tumor had been completely removed. But because of its location and size, Dr. Morris recommended that Ron receive radiation therapy, which uses high-energy x-rays and electrons to kill any remaining cancer cells.

So he could stay with his family, Ron decided to have this next phase of his treatment at Memorial Sloan Kettering’s facility in Basking Ridge, New Jersey. Ron received state-of-the-art radiation therapy delivered by a team that included a radiation oncologist, medical physicists, radiation therapists, and nurses.

Radiation oncologist Karen Schupak, Chief of Basking Ridge Radiation Oncology, designed an intensive regimen that targeted external-beam radiation to the region where the tumor had been. The plan required Ron to undergo six weeks of therapy, five days a week. 

“Ron had an extremely complex course of treatment,” Dr. Schupak says. “Radiation of any soft tissue sarcoma is very challenging. The doses necessary to get good tumor control have to be planned and applied carefully because of the proximity to vital structures.”

As the weeks went by, Ron found radiation to be increasingly difficult to tolerate. “The effects accumulated over time,” Ron says. “It’s like getting a really bad sunburn — again and again.”

When he finally rejoined his band on stage in late January 2011—approximately ten days after his final radiation treatment—it was a “nightmare” from a physical perspective, he says. The damage to his skin caused by the radiation had not yet healed.  “And because I’d lost the chest muscles on my right side, I was also placing the guitar directly on my ribs. It hurt!” Ron explains.

However, Ron was thankful that his doctors agreed to let him play so soon after his treatment ended. “I was back in my element, and that felt great,” he recalls.

His Own Best Trainer

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Jeannette Zucker, a physical therapist and lymphedema specialist at Memorial Sloan Kettering Cancer Center, discusses how cancer treatment can lead to lymphedema and ways to reduce the risk and better manage lymphedema following cancer treatment.

One side effect of the surgery that Ron has experienced is lymphedema, a condition in which extra lymph fluid builds up in tissues and causes swelling. “Proper diet and exercise help take the struggle out of it,” he says, and he has regained full range of motion in his right arm — and much of his strength.

“It’s been almost a year and a half since I finished radiation treatment,” Ron says. “I spent over a year doing nothing but walking my dog, slowly but surely working to get myself back in physical shape, and playing music. In hindsight, I see that this was the best thing I could have done for myself.”

He adds, “My parents, my brother, and my extended family and friends were incredibly supportive throughout my ordeal. I could not have gotten through it without them.”

Although before his illness he says that he “would drop and do 50 pushups for fun — it was just part of my regular workout,” in the summer of 2012 Ron was exulting in an e-mail to Drs. Morris and Schupak that “I’m up to 7 pushups!”

“Ron is part of his own treatment team and a true participant in his care,” Dr. Morris says. “He should credit himself for his outcome because he’s an important part of why he’s done so well.”

Comments

Love you Uncle Ronnie! So glad you bounced back buddy boy.

Congrats & God Bless Ron Kraemer! I owe my life to the awesome doctors at MSK - NYC and Basking Ridge. I was diagnosed with a Stage 3 uterine sarcoma in 2006 and after surgery, 24 rounds of chemo and 28 rounds of radiation - I am blessed to be alive. Enjoy your gift Ron!

I never had a doubt that Ronnie would lick this thing and get back to doing what he loves.

I am so happy for you, Ron. Yes, you were and are blessed with a caring Mom and Dad and family and friends. Cousin Lorraine

Thanks to your Mom and Dad for keeping me informed of your progress. Prayer does work!

Great news. Your mom and dad kept me up to speed. Prayers were always with you. Good luck in the future

Ron, you're a hero - and an inspiration! We all can use inspiration when we have life challenges to face. Thank you. Bless you.

For those of us who know Uncle Ronnie well, there was never a doubt in his ability to beat this cancer. His tenacity, good spirit, and courage are an inspiration. We love ya, Ron! Keep on keepin' on, bro.

Ron, congratulations! I'm a longtime sarcoma survivor on the board of the Sarcoma Alliance. I live in Tampa. If you're back in Sarasota, maybe we could meet some day. You can reach me at http://sarcomaalliance.org

When I heard about this I was shocked.Ron was always
working out and eating healthy.How does this happen?
Well his rehab regimen seems to be working.His guitar playing is better,has a cool dog and lives in Sarasota!
LIving the Dream!!
Time for another road trip to Sarasota!
Rob

Love ya Ron...you are one tough dude. It's a shame you haven't learned how to play guitar yet. The Woodshire days probably set your proficiency back a little bit! Ha. Take care, nice article.

Bluesman Ron! So great to see this inspirational article and that you are back to providing music lovers of all ages the enjoyment of your "wall of smooth" tunes. Props to you and your doctors for this determined success. Hearing your voice and support when I was battling a different cancer was a difference maker, as are you. I recommend that anyone near Sarasota go out and have some fun and see Ron and the Hurricanes and say hello. Continue to get stronger and share your smile to all.

Thank you Ron and Sloan-Kettering
for bringing attention to Sarcoma - which is in such need of awareness, research and funding!

hi Ron, was diagnosed with a sarcoma in my upper left thigh in 2010, was treated at Memorial Sloan too. Aside from swelling because of lymphedema I have my leg thank to the great staff there. Thanks for letting people know about this nasty cancer.

Hi Ron . I too was diagnosed in marh of 2013 with a high grade max sarcoma in my left chest area ,Thanks so much to Dr Boland ,and his team , and to memoral sloan hospital for all they did for me . Will never forget them , if you read this Ron I would love to speak with you phone or email , my e mail is wayne57ny@yahoo.com. Hope all is still well with you .

Dear Wayne, thanks for your comment. We will forward your information to Ron, but you may also be interested in contacting our Patient-to-Patient Support Program, which may be able to put you in touch with another patient who has had a similar experience. You may call them at 212-639-5980. Here is a link with more information about the service: http://www.mskcc.org/cancer-care/counseling-support/patient-patient-support

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