Carol and Andrew

[Editor’s note: Watch our recent interview with Carol to learn more about her story.] 

Early Monday morning on December 18, 2017, I awoke with something pressing on my right side.  I felt around and discovered a lump in my right buttocks.  Somehow, I immediately thought “sarcoma,” though I had no basis for that thinking.  I got in touch with my internist. She saw me on Wednesday, December 20th.  I had an ultrasound on Thursday and a core needle biopsy on Friday.  My internist had pulled a rabbit out of a hat and miraculously had found an interventional radiologist who performed the biopsy three days before Christmas.  

On Tuesday, December 26, 2017, eight days after feeling the lump, I learned that I had a high-grade, soft-tissue sarcoma.  

I have been a CLL(chronic lymphocytic leukemia) survivor for 12 years. Having relapsedonce in 2010, I expected cancer again would rear its ugly head at some point. Perhaps another CLL relapseAnother blood cancer. Or melanoma, for which CLL patients remain at high risk.  But sarcoma?  Among the most rare and, unfortunately, among the least researched cancers for treatment? 

Nonetheless, I had to move quickly to figure out a course of treatment. However, unlike my initial diagnosis with CLL in 2006, I didn’t rush to the nearest local oncologist.  Hard as it was to do nothing immediately, I decided to visit some major medical centers, centers which focus on sarcoma treatment.  First stop: MD Anderson Cancer Center in Houston, Texas, where my CLL hematologist practiced. He had referred me to one of the longtime gurus in the field, who proposed a lengthy course of treatment to include chemotherapy, radiation and surgery. It essentially would have required me to move to Houston for nine months.  I asked for a referral in the Washington, DC area where I live. I now was armed with two names, one at Medstar Washington Hospital Center in DC, the other at Johns Hopkins in Baltimore.  

I visited both over the next two weeks.  Nearly a month had passed since my initial diagnosis, and I still had not started treatment.  Both medical oncologists, Dr. Dennis Priebat at Medstar and Dr. Christian Meyer at Hopkins concluded that the best course would be a combination of radiation and surgery.  Time to make a decision: surgery followed by radiation (Medstar) or radiation followed by surgery (Hopkins)?  Outcomes are the same, and both come with rewards and risks. My tumor was mobile, meaning it was not attached to an organ or bone.  I chose Door #1, surgery followed by radiation.  The surgeon, Dr. Robert Henshaw, removed the tumor in less than two hours.  I went home that evening.  Even better, the margins were clean and the pathology showed no detectable cancer cells surrounding the tumor.  

In what I call Macy’s sending me to Gimbels, Dr. Henshaw of Medstar referred me to a Hopkins radiologist, who practiced near my home.  Radiation was five days a week for six weeks, so convenience in this case was important. 

More than a month has passed since I completed six weeks of radiation. In early June, I’ll undergo a set of CT and MRI scans to make sure the cancer hasn’t migrated to the lungs or stomach, favorite hiding places for sarcoma cells.  I’ll have to undergo those scans four times/year for two years.  So, I now must compartmentalize yet another cancer into my psyche to function normally – work, socialize, in short, live my life.  

What are my take-aways? There are many: 

First: I can no longer assume that I can predict what and how cancer may infiltrate my body.  The Sword of Damocles hovers with the hope of course that it doesn’t fall again.  

Second: you’ve heard and read on Patient Power about the importance of doing your homework and seeking consult from a specialist.  I cannot emphasize enough the critical importance of this step.  I visited three major centers, collected varying pieces of information about how to proceed. It led me to a treatment decision with which I was and remain comfortable. With my CLL, I had rushed into treatment, which wasn’t the gold standard for CLL.  Those lessons learned informed my decision-making for treating the sarcoma.  

Third:  Don’t hesitate to mix and match treatment protocols. Surgery at Medstar. Radiation at Johns Hopkins. Two different hospital systems.  Do what is best for YOU, not the medical center.  

Fourth:  Find ways to insert routine and joy into your life. As soon as I could drive, I returned to the gym to walk on a treadmill (too cold to walk outside).  My husband and I kept our plans for a weekend visit to New York. And, midway through radiation, we made a last-minute decision to attend my 50th high school reunion in Massachusetts.  What joy to reunite with classmates!

Unfortunately, in January we did have to cancel a big overseas tripto Morocco while I hunted for consensus on treatment. Fortunately, we had purchased trip insurance, a must at our ages and life stages.  We look forward to scheduling another trip.  

Most important:  keep your eyes on the prize.  In June we’ll get an upgrade…as grandparents!  

I am grateful to Patient Power for all that I have learned about becoming a more knowledgeable patient. Please send me your comments and concerns as we walk this path together.

Sending good wishes and better health your way, 

Carol Preston 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.