Stage4Lifer: Men get metastatic breast cancer, too

According to the National Cancer Institute, breast cancer in men is often diagnosed at later stages. LBBC’s digital media specialist Josh Fernandez interviewed Hear My Voice Advocate Carl (Mac) Holmes and his wife, advocate Robin Holmes, to talk about their experience with diagnosis, raising awareness, and more for #Stage4Lifer.

Mac, you had been diagnosed with early-stage breast cancer in 2012. When and how did you learn you had stage IV breast cancer?

Mac: During a regular check up with my oncologist he noticed my tumor numbers were trending up and ordered a scan. We waited on the results of the scan and that same day he told me my breast cancer had returned and it was now in my spine.

How did the two of you learn what metastatic breast cancer meant? What resources were helpful in distinguishing the differences between early-stage and metastatic breast disease?

Mac: Mostly the internet. Sites of organizations like Living Beyond Breast Cancer, the Metastatic Breast Cancer Alliance, and the Male Breast Cancer Coalition (now called the Male Breast Cancer Global Alliance).

Robin: I attended as many conferences as possible, including LBBC’s conference for metastatic patients and caregivers. Many of the conferences are webcast for patients with metastatic disease and provided by major cancer centers like Dana Farber. I have been amazed with the access we have to some of the top metastatic researchers and oncologists. Information is power and believe me, this is a very complicated disease and there are many treatment options.

What did you both do for yourselves to help process the news of this diagnosis?

Mac: I think I am still processing the diagnosis and I will soon be hitting my second-year metastatic anniversary. Unlike early-stage breast cancer where you have an end date of treatment, MBC treatment never ends and is always changing as the cancer is outsmarting the drugs.

Talking to other metastatic men and women is helpful. Attending the LBBC Thriving Together conference and Hear My Voice training felt very empowering. Becoming involved in the metastatic community has helped me see how others are coping with the unknown.

For me, I had to figure how out to take the process from “I have a disease that will most likely kill me,” to, “How can I stay alive to enjoy my family and watch my children marry and have children of their own?”

Robin: No one can prepare you for the onslaught of emotions you will fell when finding out a loved one has just learned he or she has a terminal illness. After leaving the MD’s office, all we heard was, “I am sorry to tell you, but your cancer has returned and there is no cure.”

After allowing myself to digest the horrible news, I slowly began to process the new reality. I went from a flight mode of crawling in bed and crying – when Mac wasn’t around – to the fight mode. I wanted to seek out the latest in research and possible standard care options.

The biggest job in helping Mac transition to living with metastatic disease was to help him accept his new normal. This meant, for example, going from someone who weight lifted, to a person who should not lift more than 25 pounds. This has been no easy task and we continue to get into arguments when I catch him over-doing it. I encourage to accept his new normal of fatigue and take a nap when needed.

I save my energy for what I have learned to call, “The Big Events”: scans, MD appointments where treatment plans are discussed, chemo and other medical-related situations. I realize if I wasn’t doing these things, that means either Mac is gone, or my advocacy work for better treatments is working. Working hard for the second to be true.

Mac, what were some of the ways Robin, your family and friends helped you as you transitioned to being a #Stage4Lifer?

Mac: I am lucky to have a big support system. My friends understand I am dealing with a deadly disease, but have been a great source of support and encouragement. My wife and family are everything to me. As a pilot I was away traveling and working most of the time. For many years I flew for both the Air Force Guard and FedEx. Now I am able to spend quality time with my family. Every day is a good day.

Robin, how has your approach as a caregiver changed, if at all, since Mac’s become a #Stage4Lifer?

Robin: My approach to being a caregiver really has not changed, but the fact is this job is not temporary, which takes rethinking for your life. You plan events based on his quarterly scans. It can seem overwhelming at first because of the fear of the unknown. Just the thought of losing my husband is still not something I really want to face head-on. But I also know the reality of this disease.

You learn not to sweat the small stuff and discover what is really important in life. We have learned to enjoy each day we have on this earth together.

You are both advocates who help raise awareness of the experiences of men diagnosed with breast cancer. How does being a #Stage4Lifer impact that experience?

Mac: Breast cancer is thought to be a disease that only affects women. I had heard men could get it, but it was very rare. I had no idea that about 2,600 men get diagnosed in the U.S. every year. It is rare when compared to the much higher numbers to women. However, over the course of ten years that is over 26,000 men who have had to deal with a disease that is thought to be a women-only disease.

Why is pink the color when men get the disease, too. That kind of marketing and branding is misleading the public and researchers. When attending medical conferences, the researchers refer to it as a female disease. The research is geared towards women.

When I learned more men die of metastatic breast cancer then testicular cancer, I knew more advocacy work was needed. We need to better understand why men and other groups are having higher recurrences. The disparities in higher death rate is not exclusive to men. It includes young women, women under age 40 and the African-American community.

Robin: Male breast cancer advocacy includes getting men included into clinical trials. Fighting insurance companies for turning men down for new chemotherapy because the label says you have to be post-menopausal.

The most important work we have to do for both early-stage and metastatic male breast cancer is to discover the differences. We assume treatment should be the same, but men and women are not the same. I believe precision medicine and combination therapy could be the future hope for men with metastatic disease.

I want to go to a medical conference without hearing scientists refer to breast cancer as a female disease. How will ever find better treatments for both men and women if scientists won’t accept that this disease is not only affecting women?

How has being a #Stage4Lifer changed your approach to advocacy?

Mac: I am much more open about my disease to both men and women. I realized how little research funding goes towards MBC and not much has changed for both men and women with stage IV breast cancer. The focus of prevention research completely ignores too many groups, and my advocacy is to close the gap and save lives.

I am supporting organizations that are doing a better job educating the public on MBC and men dealing with early-stage or MBC. I then tell them to attend LBBC’s metastatic conference. It is very important to learn as much as you can about your disease. I also tell the men I mentor that women with metastatic cancer and organizations like METUP and METAvivor are great sources of support and motivation.

Robin: My advocacy has gotten louder. When I found out how little money funds metastatic breast cancer, I was furious. I began to understand why we have not improved the death rates for both men and women for years. My advocacy moved from being centered around men, to focusing on all people with MBC.

Robin, what’s the biggest piece of advice you’d share with caregivers of someone who’s recently become a #Stage4Lifer?

Robin: Allow yourself time to grieve. Seek support via friends, family or a counselor if needed. Call the Block Foundation. They send, free of charge, two very good books about battling a terminal disease. One for the caregiver and one with great information, in general. They will also connect you with a long-term MBC survivor to give you the hope and encouragement to seek out care at top cancer centers. Mac’s mentor has been living with MBC for over 22 years.

Get involved. Support organizations that are helping us get the needed MBC research funding from The National Cancer Institute and the Department of Defense, which also funds breast cancer research. Get loud on social media and educate your friends.

Mac, how can a man who’s new to being a #Stage4Lifer get info and support to help meet his unique needs?

Mac: The Male Breast Cancer Coalition has been great. They have a list of oncologists from various cancer centers that are very interested in treating men with metastatic breast cancer. They keep us up to date with the little research that is focused on male breast cancer through social media and a newsletter.

Is there anything else either of you would like to share about being a #Stage4Lifer or caregiver?

Mac: MBC patients need hope. Our hope will require a different approach to treating breast cancer through funded metastatic research. We need innovative researchers willing to take risks, we need the FDA to allow compassionate use of drugs, we need researchers to be willing to share data, and we also need patient advocates to be part of the process.

Robin: Remember being a caregiver is a gift. You get to give more of yourself to others. You will never look back with regrets, but with memories of time you had with the person you love.