1010 WINS staffer recalls decade-long journey with male breast cancer as he enters 'new phase of my life'

Phil Pilato in 2020

NEW YORK (1010 WINS) -- A decade ago I got the shock of my life when I was diagnosed with breast cancer.

For the last 10 years I've been undergoing treatment -- and now this month -- that all comes to an end.

I had been showering and felt a lump behind my nipple.  I had a physical exam coming up so I told my primary care physician about it and he sent me to a breast cancer specialist – a biopsy confirmed the diagnosis.

It will be 11 years in December.

The doctor didn't call me back right away with the results -- saying he wanted to wait until after Christmas - so he wouldn't spoil my holiday -- but I called him wanting to know the results right away.

What followed was a mastectomy, chemo and radiation.  I’ve been on the drug Tamoxifen for 10 years.

Phil Pilato in 2010.
Phil Pilato in 2010

SInce then I've developed lymphedema -- a swelling of my arm because they had to take out 30 lymph nodes -- 10 of which were cancerous.  I've had to wear a compression sleeve and glove 24-hours a day to keep the swelling down.

For me, the Tamoxifen came with side effects.  I had hot flashes and night sweats.  Sometimes the hot flashes would benefit me.  When in the newsroom, as others bundled up from the air conditioning, I was comfortable, but then when the flash subsided - I'd feel the cold.  The night sweats were similar -- I'd sweat in my sleep, and wake up with a soaked pillow and sheets.

I also still deal with emotions that run rampant.  I tear up during sad or emotional scenes in movies -- and sometimes my mood swings from euphoria to downright depression.

I've also had some scares over the last decade – I live in fear of a DVT - (deep vein thrombosis). My mother suffered from DVT's (and it is another possible side effect of the medication) so I'm very concerned about that.  My GP had said I should tell the doctors my mother had a history of DVT's - but the doctors at Memorial Sloan Kettering told me the only drug tested on men was Tamoxifen and weighing the pros and cons, it was safer for me to be on Tamoxifen than not. I've been taking one a day since then and worrying about DVT's all the time. My oncologist at Sloan Kettering, Dr. Gabrielle D'Andrea says there still is no tried and true estrogen receptor blocker that has been tested on men other than Tamoxifen. There are other treatments - but Tamoxifen is the only one where studies have been done in men. You can hear Dr. D'Andrea talk about the benefits of Tamoxifen and its side effects here:

I also had a scare with my liver.  Doctors detected the early stages of fibrosis, which is the pre-cursor to cirrhosis of the liver (another possible side effect).  So they monitored me for two years, put me on a Mediterranean diet​ and took regular fibro-scans -- a sonogram that looks at fatty tissue in the liver.

My last scan was two months ago - and the doctor said - " I don't know what you did - but your liver is completely normal."   What I did was cut down on sugary drinks, lost some weight, and started eating beets.  The liver can apparently be repaired and beets can help to do that.

And I've had to have my eyes checked every six months - since another side effect of Tamoxifen is cataracts.

So far each exam I've had has been good.

When I first started Tamoxifen, the doctors told me I would be on it for five years. When my fifth anniversary came along, they told me the guidelines had changed and patients should stay on the drug for 10 years. Well - this month is my 10th anniversary - and I'm taking my last Tamoxifen Nov. 30.

Dr. D'Andrea says the hot flashes and night sweats should end after my final dose today – but it  could be days or months until my body gets used to not having the drug inside me -- yet another reason I can't wait for 2020 to be over.

Phil Pilato in 2015.

I joined a group of advocates who pursue better breast cancer awareness and treatment for men. Brett Miller found a lump when he was 17 years old - but doctors in Missouri brushed off his concerns about it and didn't diagnose his cancer until 7 years later. He founded a group called the "Male Breast Cancer Coalition". Their slogan is "Men Have Breasts Too."  You can hear Brett's story here:  

Dr. Audree Tadros at Sloan Kettering Medical Center ​tells me treatment is slightly different today because male Breast Cancer is being detected earlier. Today they're doing more lumpectomies than mastectomies.  She says that's because there's more awareness of the disease today.  You can hear about those treatments here:​

Finally, there might be a way to solve or at least ease the lymphedema that I have.

Dr. Babak Mehrara, a plastic surgeon at Sloan Kettering has been doing a specific surgery on lymphedema patients -- rerouting some of the lymph ducts to allow the lymph fluid to drain from the arm.

The results vary from patient to patient - but Dr. Mehrara thinks in my case, after the surgery, I might only have to use a compression sleeve when I sleep - and not 24 hours a day. After 10 years of wearing a compression sleeve and glove, that's something worth trying. You can hear Dr. Mehrara discuss the surgery here:

Of course with COVID-19 - everything has been delayed - but hopefully in the new year - the surgery can be scheduled and my most disruptive side effect from a decade ago will end.

So, as I enter a new phase in my life, I'll quote Dr. D'Andrea - who at the end of my interview with her said, "I'm thrilled to hear from you and I'm glad you've done marvelously on your Tamoxifen, and I never want to hear from you again."