(Excerpts from my book in progress entitled, Trail Mix and Pit Stops: The Unexpected Journey of a Male with Metastatic Breast Cancer*)
“You are going to do what?” and “Where do you want me to place my hands on this…?”
Those were the initial words I expressed to the female technician who was going to perform my mammogram and was instructing me on where to stand and place my hands on the machine. The mammogram was to verify the presence and exact location of a lump in my right breast just below the nipple. The January 2011 exam was to be followed by a biopsy to determine if the mass was cancerous or not. But, my breast cancer story does not begin there. My story actually began many months earlier with what I describe as the “self-non-diagnosis.”
Self-Discovery and Dismissal… After All, Men Don’t Get Breast Cancer, Right?
While in the shower sometime in late September or early October of 2010, I noticed a small lump on the lower side of my right nipple, just below the area called the areola. I never imagined this was anything other than a cyst. After all, I thought, men don’t get breast cancer. Boy was I wrong! By the time I got out of the shower, my mind went elsewhere with thoughts of the day’s activities ahead and I even forgot to mention the lump to my wife.
It wasn’t until sometime in early December when I noticed the lump again while showering. I really had forgotten about it because it was small and insignificant. The lump was hard like an ingrown pimple, but it didn’t hurt like a pimple usually did. Once more, I wasn’t too alarmed by it, thinking it was probably a cyst of some kind. This time I did mention it to my wife though and she agreed it was probably a cyst. To ease my mind, I decided I would mention the lump to my family physician during a physical exam scheduled for the following month. Around the second or third week in December the area around my nipple, became inverted and itched. I also noticed a yellowish discharge coming from it.
On several occasions in November and December I experienced night sweats, something I had never experienced before. I remember after the first night sweat in November, I perspired so much my pajama shorts and my side of the bed sheets were soaking wet. We had to get out of bed, change the sheets and I put on fresh pajamas. My wife purchased a plastic lining for the mattress just in case it happened again, and it did.
Well, at the time, I honestly didn’t know what was going on. The idea that the lump was something other than a cyst sort of crept in. This time I thought there might be a connection between the lump, the inverted nipple and night sweats. Although I didn’t tell my wife about my concerns, I did show her my inverted nipple and mentioned that I would definitely discuss this with the doctor in January. Although the thought of it being something other than a cyst was there, I still didn’t have sufficient concern to take any action at this point. I continued to dismiss the idea of the possibility of having breast cancer. Again, the overriding thought was that “men don’t get breast cancer.”
On Tuesday, January 4, 2011, I met with my family physician and had the physical examination. I had not had a physical exam in more than two years. After the blood draw, the taking of vitals and the physical exam by the physician’s assistant (PA), I waited to meet with the doctor. One oversight though, I failed to mention or show my lump to the PA. I simply forgot. And, checking a man’s chest (ok…breasts) during a regular physical examination wasn’t customary. I had removed my shirt in the exam room, but had left my T-shirt on which meant the PA was not able to see the inverted nipple. She simply placed the stethoscope under my T-shirt while listening to my heart, lungs then back as I breathed in and out as she again checked my lungs. Once the physician and I met, we had a brief discussion since everything seemed to be ok. I started to put my shirt back on when almost in passing I told him I needed to show him something. I lifted my T-shirt and showed my right inverted nipple to the doctor. Again, I didn’t think much about it since I felt guys couldn’t get breast cancer. Well, once the doctor noticed the inverted nipple and felt the lump in my breast, his generally pleasant demeanor changed to one of concern. The doctor asked if I minded him calling a surgeon to set-up an appointment for me. I am thankful and grateful my family physician, Dr. Paul Lenz, didn’t brush off the possibility of me having breast cancer and later I thanked him for it. Since my official diagnosis, I have spoken with four other men who have had breast cancer, and not all of them had the same experience I had with their primary care doctor. The presence of mind for doctors to tell patients something is amiss, something is wrong and the need to make a referral beyond your specialty, training and capabilities is vital to a patient’s welfare. Again, it is for this reason that I’m grateful my family physician understood that breast cancer does or can occur in men.
On Friday, January 7, 2011, I met with the surgeon who examined the lump in my right breast. He indicated the tumor could be non-malignant or benign (non-cancerous) or malignant (cancerous). He further suggested he could operate to remove the lump, a procedure called a lumpectomy, and then perform a biopsy on the removed mass or, he could perform a biopsy of the lump without operating. My immediate reaction, since I felt I had procrastinated long enough, was to go ahead and have the lumpectomy. The surgeon had his staff schedule my appointment. However, I had no sooner left his office when something inside me—I believe was divine intervention, told me to just go back and instead of having the lump surgically removed, to go ahead and request to have a biopsy of the lump instead. Although I didn’t realize it at the time, the decision to have a biopsy instead of a lumpectomy was one of several good decisions I was to make on this journey. The biopsy was performed five days later and I began to focus on gaining a better understanding of breast cancer.
Several issues occurred during my examinations leading to and during the biopsy, but these will be discussed in more detail in my book. However, I will tell you going through a mammogram, ultrasound and biopsy as a male can be awkward experiences since these examinations are generally performed on women.
As I drove home after the biopsy, I knew I had approximately nine days to prepare for the next doctor’s visit where I was to be informed whether or not the tumor was malignant. I was set on being ready or, at least, better prepared. I felt a need to gain ground in the event my diagnosis was positive for breast cancer, and the more I knew about “male breast cancer’ the better. I didn’t know any male breast cancer survivors I could speak with regarding their experience with breast cancer. I certainly wouldn’t approach a female breast cancer survivor and ask her about her experiences either. Essentially, I didn’t have anyone to talk with about breast cancer, so I decided to surf the internet about breast cancer. I started researching the topic of male breast cancer. While I found a great amount of information on “breast cancer—a female specific disease”, in January of 2011, I couldn’t find much information related to male breast cancer. Through my preliminary, limited online research, I discovered men account for 1% percent of all breast cancer diagnosed in the United States. I also learned my tumor, because of the inverted nipple, could be infiltrating (or invasive) ductal carcinoma (IDC), the most common form of breast cancer in men. IDC is sometimes characterized by an inverted nipple and possible discharge. It seemed as though the material I was reading mirrored my experience.
Fortunately, information on male breast cancer is becoming more available through organizations like Living Beyond Breast Cancer, The Metastatic Breast Cancer Network, American Cancer Society, Susan G. Komen, and The Male Breast Cancer Coalition. And, while what’s available is a great start, much more information and funding for male breast cancer and metastatic breast cancer research are needed. The good thing is, in January 2016, the LBBC developed an excellent guide on male breast cancer entitled, “ “Breast Cancer inFocus: Breast Cancer in Men.” This publication provides succinct and clear information about male breast cancer from diagnosis and staging, to treatments, genetic testing and more. It also includes some statistics and personal stories of men with breast cancer along with a listing of additional resource organizations. An added feature I liked was the online availability of this LBBC guide at no cost, and the stories of a number of males with breast cancer which can be read via link on the Male Breast Cancer Coalition website.
Positive Diagnosis for Breast Cancer
On January 21, 2011, I met with the surgeon to learn my biopsy results. He informed me the biopsy tested positive for infiltrating (invasive) ductal carcinoma or IDC. The diagnosis confirmed what I had suspected as a result of my online breast cancer research. The surgeon and I discussed several options one of which involved surgery—a mastectomy (removal of the breast) with an axillary node dissection (removal of lymph nodes from the breast and underarm). My mastectomy was scheduled for February 17th. Before surgery, I decided to go for a second opinion at MD Anderson in Houston, Texas. I also discuss the reasons for my decision to seek a second opinion in greater detail in my book.
A Second Opinion and Treatment Center
Dr. Sharon Giordano, an oncologist at MD Anderson, was highly recommended by an oncologist family friend, Dr. Seth Cory. The primary reason I went to MD Anderson and asked to be treated by Dr. Giordano was because she specializes in male breast cancer. She would become my doctor and my surgery was done on September 8, 2011 at MD Anderson instead.
Dr. Giordano ordered numerous examinations resulting in the confirmation of my breast cancer diagnosis of infiltrating ductal carcinoma. My breast cancer was Estrogen Receptor (ER)/Progesterone Receptor (PR) positive. Because I’m a man with breast cancer, Dr. Giordano recommended I have genetic counseling and testing. The results indicated I was negative for the BRCA1 and 2 gene mutations, and I also tested negative for HER2.
After a thorough discussion, lasting approximately 45 minutes, we decided my treatment protocol was to include chemotherapy, a radical mastectomy with axillary node dissection and radiation treatments. I completed all of my treatments on December 23, 2011 and started a five-year daily hormone therapy regimen of Tamoxifen. The night sweats, which began prior to my diagnosis for breast cancer and continued through my treatments, eventually stopped and were replaced by hot flashes from the Tamoxifen.
Even though I continued to work as a district director at a charter school organization while undergoing chemotherapy, I took a leave of absence under the Family Medical Leave Act (FMLA) and moved to Houston, Texas when I underwent daily radiation treatments for approximately six weeks at MD Anderson. I am very thankful to my radiation oncologist, Dr. George Perkins, for recommending I receive my radiation treatments at MD Anderson. I admire and appreciate the precision and care used in preparing me for and during my radiation treatments.
Metastatic Breast Cancer – A New Diagnosis
After my 2011 yearlong bout with early-stage breast cancer, I continued to be monitored by my oncologists at MD Anderson with visits every six months. Eventually my appointments became three months apart, until my May 2014 diagnosis.
It is through this monitoring process my oncologists checked for recurrence or metastasis. It was Dr. Perkins who always requested my blood work include testing for a specific protein marker. The increasing levels in this protein marker in May prompted Dr. Perkins to order CT and bone scans which eventually led to my May 25, 2014 diagnosis of Metastatic Breast Cancer (METs).
Breast cancer generally metastasizes to the bones, brain, lungs or liver. I have bone METs. I should point out that even though I had a positive diagnosis for metastatic breast cancer, I was asymptomatic. I didn’t exhibit any physical symptoms. I did feel bone and joint pains, but the pain was more noticeable during a change of weather. The pain was neither increasingly persistent nor unbearable. I was able to relieve the pain with regular over the counter meds. Also, while similar examinations and scans performed in February of 2014 did not reveal the presence of lesions in my bones, my blood work continued to show increased protein marker levels. I am very thankful Dr. Perkins monitored the protein marker, because in my case it led to a diagnosis for bone METs even though at the time I didn’t exhibit any symptoms.
Metastatic Breast Cancer Treatment
After my diagnosis for METs, I underwent chemotherapy and radiation treatments at MD Anderson. This time, I didn’t worry about having to work and receive treatments. I was eligible for retirement, so decided to retire on June 30, 2014. To be closer to family, my wife and I moved to Pittsburgh, Pennsylvania where I continue to receive monthly treatments for bone METs now at the University of Pittsburgh Medical Center’s Magee-Women’s Hospital. I am under the excellent care of Dr. Nancy Davidson, Oncologist and Director of the Pittsburgh Cancer Institute. Dr. Davidson, a world renowned cancer research scientist, was also highly recommended by Dr. Seth Cory. I am thankful to Dr. Cory who was instrumental in connecting with Drs. Giordano and Davidson.
Breast Cancer and Metastatic Breast Cancer Advocacy
Since arriving at UPMC, I felt it was important to become involved as an advocate for male breast cancer and metastatic breast cancer research and funding. I joined the Breast Cancer Research Advocacy Network (bcRAN) at the Magee-Women’s Research Institute of UPMC. I’m part of this group because bcRAN is a breast cancer advocacy network established for the purpose of building a partnership between breast cancer survivors, pre-vivors and scientists to accelerate the progress of cancer research. I’m also appreciative that, although I’m currently the only male breast cancer survivor on bcRAN, I will be able to create a Male Breast Cancer Study Group. I have been in contact with several other male breast cancer survivors in the Pittsburgh area and will continue to work toward increasing membership in this study group while providing awareness and advocacy for male breast cancer and metastatic breast cancer. At the May 8th Komen Race for the Cure in Pittsburgh, I was able to distribute flyers inviting other men with breast cancer to sign up for the study group. I appreciated Komen allowing me to use their information tent to meet with the community and distribute flyers.
Metastatic Breast Cancer Resources
One of the most valuable websites I came across while researching METs was the Metastatic Breast Cancer Network, which I previously mentioned. The MBCN describes metastatic breast cancer:
…also known as mbc, stage IV or Advanced Breast Cancer, is cancer that has spread beyond the breast and lymph nodes under the arm. The most common sites of metastasis are the bones, lungs, liver and brain. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The spread of cancerous cells to a vital organ is what kills. This is called metastasis. (www.mbcn.org, Education: What is mbc?)
The MBCN developed a very useful flyer entitled, “13 Facts that Everyone Should Know about Metastatic Breast Cancer.” I learned a number of important facts from this flyer, but the most notable for me at the time was the fact that even though MET’s is an incurable disease, being diagnosed with MET’s is not an automatic death warrant. The LBBC and the MBCN also have an excellent and thorough joint publication entitled, Metastatic Breast Cancer Series: Guide for the Newly Diagnosed. The guide provides a great amount of information aimed at empowering patients in making informed decisions about treatments as well as with information that will allow them to cope with their emotions after being diagnosed with this incurable, yet manageable disease. A major emphasis of the 52 page publication is that the patient must become their best advocate. It is for this reason that I support the efforts of the LBBC, the MBCN and the Male Breast Cancer Coalition and the many other organizations assisting breast cancer survivors become advocates in their treatment.
I advocate for increased funding for metastatic breast cancer research and clinical trials. I believe the more is known of how breast cancer metastasizes, the better we will be able to prevent it from occurring in those afflicted with early-stage breast cancer. While strides in cancer research continue to be made, much more refined work needs to be done.
Our team is comprised of Bob and Linda Carey, our advisors and volunteers. Without them, changing lives one smile at a time would never be possible!