Breast CancerPatient Stories

My Story: Male Breast Cancer and Waldenström's Macroglobulinemia

Edward Sawa was waking up with headaches that disrupted his daily activities and ended up being diagnosed with Waldenström’s macroglobulinemia and breast cancer. Read the lessons he’s learned as a male with breast cancer.
February 2021 Vol 7 No 1
Edward J. Sawa
Michigan City, Indiana

As a 65-year-old man, I was in relatively good health, with minimal health issues, until recently, when everything changed. In early 2019, I was having a high level of fatigue and headaches. I would wake up with headaches that would continue throughout the day. I did not know what the cause was.

So, I went to see my family doctor, who did some blood tests. When he received the results, he consulted with a hematologist/oncologist, which led to additional tests. The tests showed abnormal results.

My immunoglobulin (Ig) M level was very high, just under 4,000 mg/dL; the normal range for people my age is between 45 and 281 mg/dL. My M protein, or M spike, was also high. I was told that these results are consistent with certain types of cancer. I was eventually diagnosed with Waldenström’s macroglobulinemia in October 2019.

Male Breast Cancer

During a subsequent prescribed self-examination in September 2019, I felt a lump in my right breast. The mass felt relatively dense. I then started my relationship with Franciscan Health, in Michigan City, Indiana, and had an ultrasound and a mammogram. A biopsy was also performed at the same visit, and 4 tissue specimens were extracted, which was a painful process.

I asked the doctor what his initial thought was. I recall his response clearly, saying it did not look good. The room was quiet. I wondered what the intern was thinking, because she probably had not seen any men diagnosed with breast cancer. I heard what was being said, but I thought that everything was being told to a third person, not to me. It was hard for me to comprehend that those comments were directed at me, and only me.

In October 2019, I met with a surgeon who confirmed that the lump in my breast was malignant. Surgery was necessary to remove the tumor and the affected lymph nodes. We discussed the process and what would be involved. Waldenström’s macroglobulinemia would not be addressed as part of this surgery. The primary focus was the breast cancer and the spread to the lymph nodes. My breast cancer was a relatively early stage, measuring about 1.9 cm to 2.1 cm.

My first surgery consisted of removing the majority of the breast tumor and the lymph nodes. The second surgery consisted of a port being inserted above my left breast area to deliver the chemotherapy drug infusions. This alleviated the need for having an intravenous tube inserted for infusions and blood draws.

Spiritual Support

I discovered that attitude, spiritual support, along with friends and family members’ involvement were all crucial when dealing with cancer. I had a good attitude during this ordeal. I always met with my pastor to receive the blessing for the sick and holy oils before each infusion, during the 16-week duration of chemotherapy treatments.

This, as well as my Men’s Rosary Group, was beneficial for me spiritually. The caring and involvement I received from my hematologist/oncologist, family, friends, work colleagues, and from people I didn’t know personally, was truly special.

In December 2019, I started my first of 8 chemotherapy infusions at Franciscan Health at Woodland Cancer Care Center in Michigan City, Indiana. Each infusion was performed on Friday and lasted 4 to 5 hours. I rested on weekends and was able to continue my job responsibilities.

Chemo Side Effects

The chemotherapy side effects consisted of fatigue, low appetite, low white blood cell counts, chills, being warm, losing weight, loss of hair (no longer having to shave), numbness in my fingers and feet, low energy, sore legs and knees, fingernails’ and toenails’ surface being irregular, cavities, and very poor sleep nights. When some of the side effects started to subside, I began to walk short distances and ride my bike. One month later, I started radiation therapy to my right breast and right armpit for the lymph nodes, over 6.5 weeks. Each radiation session lasted about 30 minutes.

The side effects from my radiation treatment consisted of redness and burned feeling at the breast area and the right shoulder blade. I had swelling on my left nipple and breast area, as well as blisters and skin peeling in the treatment area. I applied lotion to help the redness, blisters, and peeling.

Balancing Treatment

I completed radiation on May 28, 2020. This is the date when the 5-year recurrence timeframe begins, so May 28, 2025, is an important date for me. My hematologist/oncologist told me that my breast and lymph node cancer was in remission, but this was not true for the Waldenström’s macroglobulinemia.

During my chemotherapy treatment, my IgM number, which relates to Waldenström’s macroglobulinemia, improved. Although the main purpose of the chemotherapy was to treat the breast and lymph node cancer, an indirect effect was an improvement in IgM levels. Once I completed the radiation treatments, my IgM and M-spike levels started to rise again. Therefore, I had additional infusions (with Rituxan), but these had minimal impact.

In October 2020, I met with my hematologist/oncologist to review the blood test results. It was concluded that a second drug, Imbruvica, would be added to Rituxan. This treatment approach was also consistent with a second opinion from Northwestern Medical University in Chicago for my Waldenström’s macroglobulinemia.

As a precaution, I also had a second mammogram. This mammogram focused on my left breast, which was checked when I had my first mammography, and it was clear. The second mammogram was also clear.

In November 2020, I had my first CT scan of the chest, abdomen, and pelvis areas. The results were favorable and did not show cancer. This scan will be used as a baseline for future reference. I also had a bone marrow biopsy, extracted from the hip area. This procedure lasted about 4 hours, but other than some discomfort it was uneventful. The bone marrow biopsy confirmed the presence of cancer cells in the bone marrow.

I have regular maintenance infusions, along with various drugs to keep my breast cancer in remission. I continue to focus on lowering the blood levels related to Waldenström’s macroglobulinemia, with the hope of getting this condition to remission too. Adding Imbruvica for the treatment of Waldenström’s macroglobulinemia has been showing positive results for me.

Lessons Learned

Among the many things I learned while dealing with cancer, these are my key lessons:

  • It is very uncomfortable to have a mammogram
  • Breast cancer surgery does not always remove all the cancer
  • Keep a log of abnormal test results
  • Get a second opinion
  • 1 of 8 women have breast cancer
  • 1 of 1,000 men have breast cancer
  • Men receive similar treatment to women for breast cancer
  • There is a major difference between stage I and stage IV cancer
  • Nurses are beautiful people
  • Tell your doctor about all your conditions to receive the best treatment
  • Waldenström’s macroglobulinemia cannot be cured
  • How important my family and their support is
  • Pray, a lot
  • Keep a daily log
  • I am not my doctor’s only patient
  • Cancer has a 5-year recurrence and survival period once treatment is completed
  • Male breast cancer is not publicized enough, so there is no substantial data bank on men’s breast cancer
  • Whom to share my breast cancer diagnosis with
  • You can learn so much from your nurses regarding your options. Nurses are a wealth of information and support
  • Always share your side effects with your doctor and nurses
  • Always write down your questions before meeting with your doctor
  • I was blessed to walk in and out of the cancer center on my own for my treatments; many patients need assistance.

I am hopeful that men who read this article become more aware of their potential to have breast cancer.

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Last modified: April 1, 2021

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