Anyone tested for Cowden's?

I was not tested for Cowden's, but when I had my one and only genetic counseling, the counselor said it was a possibility I could have Cowden's.  If you count LCIS as breast cancer (most oncologists wouldn't) then I'd have enough growths (benign) to qualify for phenotypic Cowden's.  The genetics counselor brought my case up to her genetics board, and they agreed it was NOT medically needed to get tested for Cowden's, and it would 'be a stretch' for me to have Cowden's.  On a subsequent breast biopsy, I requested that the pathologist make a statement whether or not (s)he saw hamartomas.  They did not see any hamartomas in my sample.  I opted not to be tested since I would have to pay out of pocket, and the likelyhood seemed small.

In a paper she gave me, it said that most people with Cowden's had all their qualifying growths before their 3rd (or was it 4th?) decade.  Since I was diagnosed with LCIS in my early 50s, and had many of the qualifying growths after my 4th decade, I agreed that it would 'be a stretch'.

Around the time I had genetic counseling (in 2006), I found one statement that said that while Cowden's was undoubtedly underdiagnosed,  only about 200 cases *worldwide* *ever* had been diagnosed. (I assume with genetic tests.)   I think I've seen subsequent numbers that say more people had been diagnosed, but its  an unusual condition.

I'm so happy you're negative!!

I haven't had a positive test for Cowden's, but all my docs think I definitely have it.

In my early twenties, my dentist found little (I mean tiny) wart-likee bumps on my gums and he said he had never seen them ever-in 30 years of practice.  He sent me to an oral pathologist to make sure they weren't something dangerous.  Of course the biopsy came back inconclusive.

It wasn't many years later that I got my first breast cancer dx (right breast).  I was 27.  When I was 31, I had it again in my left breast.  The next year I was dx with mets to my bones.  During my treatment for the first dx, I had bowel issues and had a colonoscopy.  No cancer, but lots of polyps.  Sometime near the second dx, I asked my surgeon that did the colonoscopy about thyroid cancer screening because of Cowden's.  He said no problem and did an ultrasound right then.  Of course he found something.  I was scared to death.  I went and did the radio-isotope test (I forget what it's called), but luckily it came back negative.  So I have a benign nodule on my thyroid and I just take levothyroxine to suppress it and that seems to be controlling the growth.  I had lots of what I thought were warts on my skin, but they were called something else and there were several different kinds of growths.  Also, my mom had breast cancer when she was 35 and her sister had it when she was 34. My mom's dad had colon cancer.

I had a bilateral mastectomy with TRAM reconstruction at MD Anderson Cancer Center when I had the 2nd brca dx and they wanted me to see a genetic counselor,  but it never worked with my travel plans.  And by that point, I was pretty darn sure I was on top of things.

Sorry to be lengthy-I was just shocked to see a post about Cowden's.  Hardly anyone has heard of it.

Hugs and peace,

Jennifer

*edited to add one more detail