Juggling Multiple Serious Diagnoses

7.3.24

Karen Rafinski shares how she experienced multiple serious diagnoses

Just over four years ago, I had a crippling stroke and a heart attack that left me paralyzed on one side, with serious speech and vision deficits.

Really, that was hard enough.

But a year later, as I was still recovering, I was diagnosed with melanoma skin cancer.

That was shocking and unbelievably stressful.

But it is not that rare.

Stroke patients face three to five times the risk of developing cancer in the first year after their stroke if they are younger than 49, according to a 2023 study published in the journal JAMA Open Network1. Two to five percent of stroke patients end up developing cancer in the first year after stroke, according to the study.  Older patients also face an increased risk of cancer, though the risk is less dramatic.

Just before my stroke, at the age of 55, I was growing concerned about a tiny mole that seemed to be growing on my arm. But I did not get to the doctor before the stroke changed my life forever.

Some strokes are caused by a cancer that is first detected before or immediately after the stroke. In other cases, like mine, cancer is diagnosed a year or more after a stroke, and doctors often suspect it was there already when the stroke occurred. That makes it hard to know if the stroke caused the cancer or just occurred at the same time. There is no way to know for sure until more research is done.

Some neurologists screen stroke patients for skin issues because of this potential link between cancer and stroke.

In my case, the cancer grew to the size of a nickel by the time it was diagnosed. Do not let that happen to you: see a dermatologist if you develop any skin conditions after a stroke.

That is the biggest lesson I learned from dealing with three major diagnoses at the same time, but far from the only one.

The next lesson may seem paradoxical: slow down and breathe. My first impulse was to jump on the cancer quickly because a year had already been lost.  But I froze up from the stress of trying to figure out multiple life-threatening diagnoses at once with a brain that worked more slowly than ever before thanks to the stroke.

So instead, I got serious about stress management for the first time in my life. I never would have gotten through all my issues without meditation, which my neurologist first suggested to help with the stroke. When I got the cancer diagnosis, I doubled my efforts and found it hugely helpful. It calmed me down and helped me get past the stage where I could not really think clearly because I was frozen and in shock.

I also used that time to read up on my condition and understand all my options. That let me take control and make informed decisions I was comfortable with.

My next suggestion: never go to the doctor alone. Make sure a trusted family member or a good friend is there to take notes and ask questions and make sure everyone is on the same page. Do not be afraid to call the doctor back if you do not understand something.

By the way, did you know that there are private social workers available for hire to help arrange the details of care? I used one for important doctor’s visits early on when I was struggling with aphasia and had trouble speaking clearly. The social worker took notes and relayed information to my out-of-town family.

You may have to remind your doctors that you have had a stroke and need more time and help to understand medical issues and make informed decisions. Most doctors in my experience will cooperate. If they do not, it may be time to find a new doctor.

I could not have coped with my multiple diagnoses without family and friends pulling together to help. My sister managed the ridiculous amount of paperwork needed to navigate the healthcare system. My Dad read up on my conditions and explained them all to me before my vision recovered well enough for me to do that for myself. My cousins organized a multi-state relay to help me travel safely from Boston to New York for the holidays.

I was so lucky to have them all. My single best piece of advice for facing multiple diagnoses: Do not go it alone. Make it a team effort.

 


1Journal of the American Medical Association, JAMA Network Open, Association of Stroke at Young Age With New Cancer in the Years After Stroke Among Patients in the Netherlands. March 28, 2023.

Contributed by Karen Rafinski.

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