Jack contacted me last year in mid September. He wanted to know if people would like to read about a man diagnosed with metastatic breast cancer. I told him, not only did I know that people would want to read his story, but that he needed to tell his story. People do not identify breast cancer to men, but it happens. And it needs to be addressed as well.
It took awhile for Jack to get me his story, because at the time he was going through whole brain radiation. His last email to me was in November, 2015. It reads,
Lesley, Well all this brain radiation that I’ve been through the last couple of weeks slowed me down.
I apologize and realize that you may not get this posted for your end of this year.
As I had mentioned putting everything in writing proved more difficult than I had imagined, and I must give my wife the credit for her getting it all together and being my ghostwriter.
I realize that I have repeated some statistics but thought that if the purpose is awareness that some of those things need to be repeated over and over. There may be those that read this that may have not read other stories.
As it turns out, I was not able to get his story out before the end of the year. I had too much going on, and was adapting to my second line of endocrine therapy.
On January 7th, 2016, I woke up to this heartbreaking email from Jacks wife.
My dear husband Jack passed away Dec. 31, 2015.
I told Patsy that I was still going to share Jack’s story.
Jack’s voice will not be silent, not even in death.
Can you share with our readers what your life was like before you were diagnosed
with metastatic breast cancer and how you got to the stage IV diagnosis?
In 2007 after retiring as a civil engineer and moving back to my hometown I was diagnosed, at age 61, with Paget disease of the breast, a rare type of cancer involving the skin of the nipple, stage 0, ductal carcinoma in situ, intermediate to high grade, ER/PR+, HER2-, with no history of BRCA1/2 (hereditary).
I had a mastectomy of my left breast. Although initially tamoxifen was recommended, with only a 1% chance of recurrence, I decided to forgo any treatment. Six years later I developed lymphedema of my left arm. Although it was considered unusual for lymphedema to occur that long after surgery, I was treated with therapy, arm sleeves, & a pump for 1½ years. In 2014 upon learning about a surgery that was being done on the lymph nodes at MD Anderson I went there for evaluation. After much testing & a biopsy it was discovered that I had MBC, metastatic breast cancer or more commonly known as Stage IV, in my lymph nodes (causing the lymphedema), lungs, liver, & bones.
What is your official diagnosis and tell us about your current treatment.
I began treatment in my hometown with radiation to the shoulder/axillary area of affected arm. Then I started on Taxmoxifen and had a heart attack the next day. Stents were placed and I was given anti-coagulants. Tamoxifen was restarted for a few months. After tumor markers started to elevate I was started on IV chemo, Taxol – then suffered a lung embolism. After several months I developed cutaneous metastasis on my arm and was switched to an oral chemo, Xeloda. I have now been switched back to hormonal therapy- Femara and Lupron. However just a few weeks ago, tumors were found in both eyes and brain, so now I have just finished a series of whole brain radiation treatments.
How has cancer changed your life? Did you have one pivotal moment or has the
journey been one of progression and growth?
Few things hit as hard as the news of a terminal illness diagnosis. Cancer has obviously changed my perspective on living each day- not putting things off until tomorrow – with the constant realization that the average prognosis is 2-3 years, with no hope of a cure. I’ve been told that I’ve already exceeded those expectations. Our whole life from conception to final breath is a journey and each or our journeys is unique.
How do you live your best life now, thriving with a metastatic diagnosis?
I have been truly blessed, aside from constant doctor appointments/treatments, fatigue and shortness of breath. I have been remarkably well, still able to care for our small country place of goats, ducks, cats, dog, & catfish. My wife and I are continually being uplifted by the many angels God has provided in the form of our family and friends. Thriving is sometimes all I seem to be able to do with all the ups and downs of the effects of the disease.
What makes you most happy, and where do you find the most joy? Is this different
than BC (before cancer)?
I have found that I am most happy now when sharing my story and testimony with all the many people I have met while dealing with this devastating disease – from other patients, nurses, doctors, caregivers. I am able to empathize and to pray with those I meet. We previously were actively involved in the Christian Motorcyclists Assn. ministry for bikers but have had to sharply curtail those activities due to my illness. Although my faith has been the center of my life for many years, this diagnosis has been the true test of my faith and trust in the Lord. This is not to diminish the importance of my wife and family who have always brought me joy and of course their presence in my life continually warms my heart.
People mean well, but often they don’t know what to say, so they say the WRONG
thing. What is the worst thing someone has said to you?
Although I don’t think that there has been a “worst” thing anyone has said to me but I do think that people don’t realize the “no cure” status of MBC and are always thinking that because I “look” good that I am in some kind of remission. My wife, who has spent countless and exhausting hours scouring the internet, magazines, and books, etc. for any glimmer of hope of a new drug, treatment, diet, trial or alternative treatment is sometimes overwhelmed by well-meaning friends or family saying “I heard or saw something about a cancer cure,” or ”have you tried this or that” alternative treatment. Something that may be being tried on another primary cancer won’t apply to me. We often think if they really wanted to help in that way that they would do research before offering yet another “cure”. We’d like to talk person to person to the brother-in-law’s sister’s cousin’s boyfriend’s aunt’s daughter’s father, with the exact type of cancer that I have, who has tried some alternative treatment and has been cured! Everyone responds to treatments differently.
What did or do you find most helpful for those wanting to encourage or help you?
Most helpful to us has been the prayers, friendship, and offers of physical assistance — especially those willing to listen to our worries or concerns. Although we hadn’t been extremely involved in Facebook until my illness, it has been a godsend to be able to get my updates posted and receive so much support from friends & family much like the Caring Bridge website. Also a dear friend has taken on the great responsibility to become the go-to person for keeping others informed through an email prayer chain. The responses and comments I get have been unbelievably emotionally supportive.
Do you feel that those of us living with metastatic disease are overlooked by the pink tide of awareness for early stage cancer in October? How would you change that?
Before being diagnosed with MBC I actively promoted the “awareness” issue but upon further research found that 30% of those with early stage breast cancer will at some point become metastatic. I think that living with metastatic disease is too often lumped in with the early awareness campaigns and especially the “five” year no evidence of disease celebration. It is not ever over. Although I am 68 years old, MBC also affects those much younger and a cure is much needed.
What do you want people to know about YOU and your life living with this disease?
I want people to know that for MBC there is no cure, life span after diagnosis is 2-3 years, and no one dies from Stages 1-3 but 110 people a day die from Stage IV. I am indeed “living” with this disease and it is not important that they “know what to say” but rather to just express their love and concern– that sustains me. For me, I know that my Savior lives and is sovereign. He holds me in His hands.
Do you think our cure is near? Or what one scientific advancement in the treatment
of MBC do you find most encouraging.
I don’t see a cure near especially in male breast cancer since there are so few of us in comparison and we are treated the same way as women. We need treatment tailored and specific to the individuals. But I feel that the research in Immunology is the most promising.
What is one “action” point everyone could do TODAY to promote awareness of
Today, we must get our stories out there to promote an understanding of this insidious disease that also affects men. Bringing the plight of both men and women with MBC to the forefront is long overdue.
If you or someone you know is a male diagnosed with metastatic breast cancer, here are a few resources:
One of the lead researchers for male breast cancer: Sharon H. Giordano
Resource: Male Breast Cancer Coalition. They have a ton of resources and other stories like Jack on their website.
If you are a metastatic breast cancer patient and would like to share your story, please email me for all the details. firstname.lastname@example.org
We need to get our voices heard. Your voice matters.
Please spread Jack’s story.