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Hope is in Your Hands

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By Michelle Patroni, paralegal at Console & Hollawell in Mt. Laurel, N.J.

MichellePatroni.jpgThe curtain opened and in walked the emergency room doctor, nurse and nursing supervisor.

I could tell the news wasn't good.

"You have probable, or possible, uterine leiomyosarcoma," the doctor said.

Then he cautioned, "Don't research this on the Internet."

But the Internet would soon become a tool that helped maintain my sanity.  

The medical team said that my emergency CT scan had revealed a giant (34 cm x 28 cm) uterine mass that had traveled to my lungs.

According to the grim team in front of me, uterine leiomyosarcoma (ULMS) is rare, occurring in less than 1% of the population, and I had less than a 15% chance of survival.

These were terrifying statistics, especially because I didn't feel sick.


Test after test, and a faulty diagnosis
I'd gone to the hospital because of a swollen ankle that had developed and worsened during a long drive from New Jersey to Florida.

Becoming increasingly alarmed, I had looked for remedies along the way at a pharmacy and a hospital off Interstate 95. The pharmacist recommended a diuretic and ibuprofin. The hospital physician ordered blood tests, then concluded I was constipated.

Somehow I managed to make it home, but I knew something was terribly wrong. I went to my family doctor and he ordered blood work and referred me to a cardiologist. The cardiologist did some tests and said, "You have to get to the hospital now. You need a CT scan."  

After I was told I probably had ULMS, I was admitted to the hospital and over the next few days underwent more tests, including a lung biopsy.  

During this time, my sister Kim flew in from Houston.  

When she arrived, we talked through the night and I said to her, "Please promise you'll look after Ryan." The thought of leaving my 28-year-old son was heartbreaking.

The following morning, I was discharged from the hospital, but not before my attending doctor came in with the results of my biopsy: metastatic leiomyosarcoma, stage IV.   

He said, "You have two weeks to get this removed, or it's going to your kidneys next."   

Kim looked at me and said, "You're coming with me to Houston, to MD Anderson."


Finding encouragement, hope online
So off we went. While I waited for my appointment, I spent hours on the Internet researching ULMS.

I learned that it's a deadly and aggressive uterine cancer, and the most effective treatment is surgical removal. If caught early, chances of survival are better.

But my disease was stage IV and my tumor was gigantic.
 
Still, I continued to search for stage IV ULMS survivors. I eventually found and joined an online group of survivors. I read every post. And I began to hope for the first time.

More hope would come from the MD Anderson doctors at my first appointment.

After taking my history, one delivered unbelievable news.

 "We don't think you have cancer," he said. "We believe you have a benign, metastatic myoma."

He said that when the pathologist had examined my original tissue, it didn't meet the criteria for ULMS.

I was told that my treatment would include another CT scan, followed by a hormone blocker.

The CT scan revealed no further metastases, so I began taking the hormone blocker. Then I waited nervously for signs it was working. Within two weeks, I had a steady flow of urine and my ankle swelling had all but disappeared. 

I later learned I had been weeks away from needing dialysis. 

A year has passed since my original diagnosis, and my tumor has shrunk by almost 40%.  Through the worst of it, what sustained me were the stories of women who'd survived ULMS. 

Although I learned I didn't have ULMS, my best source of comfort in those first awful weeks came from reading the stories of other cancer survivors. Hearing of others' experiences encouraged me to seek the best care available. 

I hope my story encourages others and shows that doctors are not infallible.

They should keep hoping, reaching out and searching for the best care -- and for their own Hollywood ending.


1 Comment

On Tuesday my husband (a lung cancer patient) has his 6-month appt with his local pulmonologist. When he looked at my husband he made the comment that technically my husband had beaten the odds and should not still be with us based on where we were at when his disease was diagnosed 2-1/2 years ago.

He described my husband's team of doctors as a dream team that few are lucky to experience. I would have to agree. I cannot say enough about the care that he has received. As much as can be done locally (FL panhandle) for us is done at home. We travel to Houston (10-hr trip each way) as needed for evaluation and treatments for his lungs. We also, travel to Shands in Gainesville, FL (U of F 5-hr trip each way) for any brain needs as he has suffered two brain mets.

The care at both places is above anything I could have ever hoped for. I strongly advise others to seek out the best possible care.

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