Barry Jones
October 2017

Iconic phrases are just that, symbols of a specific time, place and genre.  “Boss, the plane, the plane!”; “Book ‘em Danno!”; “Up in the sky! It’s a bird; it’s a plane….!”; “Who was that masked man?”  From a more literary perspective there’s, “Call me Ishmael.”

Perhaps none is more evocative of the Boomer Generation than, “To boldly go where no man has gone before.”   Despite its grammatical and gender specific idiosyncrasies, this describes the abduction that I must now, kicking and screaming, endure.  I refuse to call it a “journey”.  That is something you choose, and look forward, to doing.  There’s nothing about cancer that fits those criteria.  I too am the lucky one-out-of-2,400 expected cases annually in the US of male breast cancer.

It took me a long time to accept those words. Over a year past diagnosis and six months past treatment, it still sounds a little weird.  Well, I’m now preparing to shout from the rooftops that, “Breast cancer is an equal opportunity disease!”

I was diagnosed at age 69. Having recently retired, I finally had enough free time to justify my joining the YMCA. After doing my customary laps in the pool, I would usually hang by my arms from a “noodle” in the deep end, to help decompress a severely damaged spine.

For several months I’d been noticing a lump in my right breast where it rubbed against the noodle. Like most males, I assumed it was a fatty deposit and ignored it…until it started to ache.  My wife examined it and said it felt unusual to her.

On May 3, 2016, I saw my family doc.  He was suspicious and sent me for a mammogram.  On May 10, I underwent what many women, but few men, experience.  The “squeeze” wasn’t as uncomfortable as I’d anticipated, but the wait for a sonogram was.  You guessed it, the radiologist was also suspicious, and two hours later the sonographer did her thing. A half hour following that, I saw the attending physician.  He suggested a core biopsy, which he performed an hour later.  Five hours after entering the center I returned home to a wife who thought Scotty might have actually beamed me up.

Another wait, this time for six days, until my GP called with the diagnosis, Invasive Ductal Breast Cancer, Stage 2, Grade 2.  Shock ! Disbelief ! Fear! Anger!  This does not happen to MEN. This cannot happen to ME!

Surgery was prescribed.  Luckily (if anything about getting cancer can be lucky) I live near a world-class cancer research facility with a world-class staff.  With the further good fortune of having insurance to support it, my choice of Roswell Park Cancer Institute for treatment was a no-brainer.  I was even more fortunate by having Dr. Helen Cappuccino as my surgeon and Dr. Ellis Levine as my oncologist.

May 31 (two days after my 24th wedding anniversary) I was wheeled out of surgery no longer bilaterally symmetrical. The good news was that the sentinel lymph nodes were clear.  The bad was that on June 13, my surgeon said that the cancer had jumped the sentinel nodes and three downstream nodes were affected. One of them was breached.

On June 21, I was back in the OR for a complete lymphadenectomy.  While healing from that, drain tubes once again dangling, I developed lymphedema.  Two surgeries in less than two months, and a swollen arm to boot!

Given that both tumors (yes, there were two) were high-risk, that the surgical margins were not clear and that a lymph node was compromised, Dr. Levine recommended chemo followed by radiation.  He at first recommended Taxotere as part of the chemo, but this can cause peripheral neuropathy which, as a violinist was unacceptable.  I asked if there were another protocol, perhaps somewhat less effective, but without the risk. I’d rather be playing my fiddle for as long as I can even if that time were to be reduced.  He agreed and decided on a Gen 1 protocol, cytoxen/methotextrate/4-flurouracil, every three weeks for eight sessions. That would be followed by daily radiation for eight weeks.

I tolerated chemo pretty well with little nausea, though the dreaded constipation was very much present.  My hair thinned considerably, but at least I kept it and I didn’t lose my sense of taste, though I did experience some minor “metal-mouth”.  More luck?

I was initially more affected by the steroids, which disrupted my sleep and energized me to a point of mania. That’s when I rearranged the garage and bought a convertible!  Eventually fatigue settled in and it was then that Chemo-Brain came a-knockin’. I lived for two weeks in a dizzying slow-motion fog that was worrying enough for my doc to order a brain MRI.  More good news, I did have one! And even more wondrous, it was (well, at least structurally) normal!

Now if anyone says that radiation is not such a big deal, don’t believe them.  By the time I was done, the affected area was red, sore and itchy.  I doused myself with moisturizer and was stained purple with gentian violet (ironically, the same stuff I used to stain cells when I taught biology.)  Nothing, beyond ending the treatments, worked.

Throughout this time I was periodically emailing an extensive list of friends and relatives who provided unlimited encouragement and support.  I connected, through the Komen foundation, with another man who was a 14-year survivor and, through the Internet, with the very editor of these stories.  I armed myself with research and found this community of men, survivors who are willing to share their stories.  Yet, without my wife, I could not have gone through this process well at all.  She was my nurse, driver, secretary, “memo pad”, but mostly my best friend, confidant and lover.  A strong support network is almost as important as chemo in this battle.

Well, I’m now more than a year past diagnosis and for the moment my lab tests and scans are clear!  This is when the real healing begins, the return to a “new normal.”  I’m on a life-time daily dose Tamoxifen, as I was “lucky” for my tumor to have been ER+ and PR+, and am tolerating it well.  I’ve intentionally trimmed down from 220 lbs. to 188 lbs. in response to an onset of chemo-induced Type II diabetes.  I completed the “Live-Strong-At-The-Y” program for cancer survivors.  I’m continuing to, exceedingly slowly, reduce the lymphedema with therapy, and I have returned to Tai-Chi classes.  I’ve reduced my A1C from 6.7 to 5.7 and my LDL to 99.  My wife is cooking me healthful meals and I’m exercising on a regular basis.  I’m also becoming an advocate for MBC awareness in my community.

But there is always the niggling fear of recurrence or metastasis.  And we MBC blokes have the added “benefit” of an increased risk of contracting prostate cancer.  I’ve been told that my prospects for long-term survival are good.  But as a survivor, you either die with cancer or because of it.  All I can do is appreciate and be thankful for all that I have now and let tomorrow fend for itself.  Where there is fear, there is no hope.  Of the two, I enthusiastically choose the latter.