Adjusting My Sails

When I first found out I had Lynch Syndrome, a hereditary genetic mutation that pre-disposed me to a plethora of cancers, I had to make some adjustments in my life. Even though I felt healthy I knew I would have to start seeing doctors annually and even have a preventive surgery to avoid cancer.   I once heard someone say “You cannot control the wind but you can adjust your sails” when talking about dealing with something unexpected.  Life is like that.  There are just some things in life we can’t control so we must do our best to “adjust our sails” and work around the obstacles.   This is what living with Lynch Syndrome feels like to me.


Waiting for the shoeEveryone who has Lynch Syndrome knows it is likely that we will battle cancer (at least once) in our lifetime.  It’s not really a matter of IF but rather WHEN.  It’s just like the saying goes: “we are waiting for the other shoe to drop.”  We know the odds are not in our favor but we do what we can to stay one step ahead of the disease.

I’ll never forget hearing that first “shoe” drop.  It was February of 2012.  My dad was in the hospital, battling his 4th cancer in 8 years and I was waiting for a call to tell me whether or not I had inherited LYNCH SYNDROME, the mutation that had made my dad and many members of his family cancer magnets.  When I received THAT call, the one that said I tested positive for the mutation, the news came down like a loud THUD.  It rocked my world.

I was 44 years-old and healthy. Honestly I was not someone who ever rushed to see a doctor.  In fact I must admit that I hadn’t had a physical in almost 4 years.  On the rare occasions I had throat pain I’d simply go to a walk-in clinic for a quick prescription.   In the blink of an eye I went from barely knowing the name of my Primary Care physician to having an entire TEAM of new doctors.  They had ordered dozens of tests immediately after.  I was poked and prodded, scoped and scanned, and finally given a clean bill of health, and declared a “PREVIVOR” — someone who had not had cancer but rather someone who was surviving the predisposition to get cancer.  This was not how I expected my life to be in my 40s.  My life was good and then the “winds” changed direction and I was forced to adjust.  I re-charted my path with some new stops along the way.


Lynch ribbonEver since that day I have done everything my genetics counselor and team of doctors have recommended.  Prophylactic surgery to avoid ever getting uterine or ovarian cancers was first.   It wasn’t an easy decision to make but one that I knew would give me the most peace of mind. I also began the annual screenings of almost every organ I have that might be at risk for cancer: colon, stomach, bladder, kidneys, ureters, liver, pancreas,skin, and breasts.   For some people,  the cancer battle begins early.  My grandmother had her first of many cancers in her 30s.  For others it’s later in life.  My father didn’t get his first cancer until he was 67 years old.

During my annual screenings last month my urologist saw something.  It was tiny.  So tiny that most doctors would probably have told their typical patient that it was something to keep an eye on and re-check the following year. After all I had no symptoms of anything being wrong.  This was just a routine annual check.   But I’m NOT the typical patient and thankfully my doctor knew that.  He ordered a biopsy for the end of the month.  When it was over, once again,  I found myself waiting for a call.

I am 47 years old and two weeks ago the other shoe dropped with the loudest THUD of all.


Once again my world has been rocked.  The winds have shifted and this time it feels more like a storm.  I was shocked to hear the news but I can’t say I was completely surprised.  I’ve known for three years that this was a possibility.  Still knowing you’re predisposed to cancer and actually GETTING cancer feels quite different.

Thankfully I wasn’t completely blind-sided by cancer. I am the first in my family to have prior knowledge of my cancer risk (my genetics counselor believes that there are about a dozen relatives in my “family tree” with Lynch Syndrome).  I was on the look-out for cancer. I  have always said that knowledge is power and that when it came to cancer, I was going to do whatever I could to stack the deck in my favor.

For now it appears that my cancer was caught EARLY.  Before I had symptoms.  Before it grew into something sinister.

I just met with a top urologist at Memorial Sloan-Kettering Cancer Center in NYC to get a 2nd opinion.  Not only is he an expert in bladder cancer but he is familiar with Lynch Syndrome and has treated patients like me. I know how lucky I am to live close by to a top cancer center.  I will have a few more tests next week and then a small surgical procedure in early June.  By late June, assuming the cancer is truly in an early stage, I will begin immunotherapy treatments. I will do whatever it takes to beat this.

Bcribbon      Butterfly_bladder_cancer_ribbon_baseball_cap

I know that this could be only the first of many cancer battles in my future.  My chances of it coming back are certainly higher than most.  People with Lynch Syndrome have a 50% chance of getting a second cancer – often different from their first.  Those are the facts.  Still,  I will continue to stay vigilant.  I will continue to fight against my predisposition.

Let’s be honest — Cancer SUCKS.  Lynch Syndrome SUCKS.

Still, while I HATE that I have it, I am grateful that I KNOW I have a cancer syndrome- knowledge my relatives didn’t have.

I’m not sure how brave I am at the moment but I hope to find the strength I need. So many of you have shared your love and support and it means the world to me.

Adjust your sails

So bring on the storm.  The winds may not be blowing my way but I am ready to adjust my sails again.