Breast Cancer Patient Shares Her Journey to Help Others

Breast Cancer Awareness Month is designated as a time is to support those who have been through and are going through, the difficult breast cancer journey. In addition, it has a goal of raising awareness of ways in which this deadly disease can be avoided and found earlier.

Michelle Behme, with her daughter, Alaina Capasso and husband Jim Behme.

Breast Cancer Awareness Month is highlighted by painting the town pink. The purpose of this designated time is to support those who have been through and are going through, the difficult breast cancer journey. In addition, it has a goal of raising awareness of ways in which this deadly disease can be avoided and found earlier.

For Michelle Behme, 54 of Cheshire, CT, breast cancer has been nothing short of horrendous. “Deformed, burnt, beaten up and emotionally drained- that’s what cancer is like,” says Behme.

Behme has always been diligent in getting regular mammograms and doing self-exams.  In 2016, there was a suspicious spot on her mammogram and she had an ultrasound. After looking at the ultrasound, she was told it was nothing.  However, in hindsight, she wishes she had pushed for a biopsy but she did not know that was the next step so she did not ask and took their word for it.  For the next four years, it was not brought up again.

On Dec 9, 2020, while performing her self-exam, she found a lump that felt like a grape.

She immediately called her primary care physician who sent her to see a specialist.  Upon completing the exam, the doctor indicated she thought it was nothing more than a cyst and that Behme should cut down her coffee consumption. However, Behme knew it felt like more than a cyst and asked for an ultrasound. Upon review, the radiologist thought the spot warranted a biopsy.

When the biopsy results came back on Dec 14, 2020, they showed a malignancy and the doctor suggested a lumpectomy.  She then had a bilateral breast MRI, with and without contrast.  The results found three masses in her right breast, one was as large as 10 centimeters.

Behme decided at that time that she wanted to move her care to UConn Health. There she saw Dr. Susan Tannenbaum, chief of the division of hematology and Oncology and the Clinical Director, Carole and Ray Neag Comprehensive Cancer Center at UConn Health, and Dr. Christina Stevenson, associate professor of surgery at UConn Health and Director of the Breast Program.

At UConn Health, Stevenson indicated that a lumpectomy was not the right course and that a mastectomy of the right breast was necessary.  Although the left breast was currently healthy, Behme asked Stevenson to do a double mastectomy to reduce the worry of cancer developing in the left breast in the future. On February 2, 2021, Behme had a double mastectomy and it was found that the cancer had spread to her lymph nodes.   She was diagnosed with Invasive Lobular Carcinoma Stage III.

Lobular breast cancer when it moves from the lobules (present in the normal breast for production of milk) to the surrounding breast tissue is known as invasive lobular carcinoma (ILC). Stage III cancer means the breast cancer is locally advanced, with extension beyond the immediate region of the tumor to nearby lymph nodes and/or chest wall, but has not spread to distant organs.

She was grateful her cancer could be removed but her recovery from surgery was difficult as she developed a local infection that required three surgeries.

Due to the extent of her disease, she needed to undergo further systemic staging and had a PET scan and bone biopsy to determine if the cancer had spread further.  Grateful that both tests came back negative, Behme states that the wait for results took a significant emotional toll on her and her family.

Due to her infections and more surgery, her chemotherapy treatments had to be delayed and she started chemo in April and ended in June having four cycles, two drugs every three weeks for a total of three months.

Dr. Tannenbaum offered two options and though the option with three types of medications was recommended (more intensive every 1-2 weeks for 5 months), she chose to use the option of two drugs.  She weighed the pros and cons of the different treatments conscious of what she was putting in her body, prior to making her decision.  This is an example of the patient knowing herself best and making the right decision for herself with physician counseling.

During her chemotherapy, Behme used the Dignicap® scalp-cooling system that spares about 70 percent of the patient’s hair.  She was fitted for a special silicone cap that circulates a cold liquid to cool down the scalp during chemotherapy. The cold reduces blood flow to the scalp area so that less of the chemotherapy drug reaches the hair cells, slowing the metabolism within the hair cells.

The Neag Comprehensive Cancer Center at UConn Health is the only hospital in Greater Hartford that offers scalp cooling. It is currently offered for breast, lung cancer, and other solid organ cancers treated with chemotherapy known to cause hair loss.

“I had already lost my breasts, I didn’t want to lose my hair too,” says Behme who saved 60 percent of her thick hair.

In her third round of chemotherapy, the chemotherapy line broke.  “Everyone came running in to help and I realized how poisonous what was going in my body was as they all came in in Hazmat suits and protection from the chemicals that I was putting in my body,” says Behme.

“I did everything that Dr. Tannenbaum and Dr. Robert Dowsett, Chief of UConn’s Division of Radiation Oncology, told me including taking all the medications as recommended, supplements and honored what my body craved for food- there was a period of time all I wanted was oranges,” says Behme.  “I had no nausea, I was very blessed and feel I handled this like a trooper.”

Radiation was performed after chemotherapy was complete and took five weeks, five days a week. Radiation took longer due to her extensive lymph node involvement.  Behme equates it to being like a job during that time. The first three weeks of radiation were a breeze, the fourth and fifth weeks were a nightmare as the radiation started to burn. “It felt like the worst sunburn you have ever had and then you poke it over and over with a poker,” says Behme who is now focusing on her healing.

Behme is now on antiestrogen therapy having a bone density and a look at bone health labs due to potential side effects of estrogen blockers. Behme and others are fortunate enough to be seen by bone health physicians who monitor and prevent bone loss while on these medications.

These physicians see patients in the cancer program and support of side effects that could occur with these commonly used drugs. She was found to have osteopenia in her hip – the doctor has her walking for a ½ an hour a day, increasing her calcium, and going for an infusion of a drug called Reclast one time a year that will give her bones more strength.

In January of 2022, she will meet with Dr. Jillian Fortier, reconstructive and cosmetic surgeon at UConn Health to start the process of reconstruction surgery.   While she was always a D cup prior to her breast cancer she has decided she would like to be a B cup.  There is a 50 percent chance that the implant will work due to the radiation change that occurs often to the skin and underlying tissues of the chest wall. If not she has other options.

Behme took a photo of herself with her mastectomy and burns.   She thought about it for a few days and decided she wanted people to see what cancer is – the scars, burns, pain, hurt, and the emotional and mental anguish that follows. She felt that she needed to be vulnerable to help someone else so she posted it on Social Media.   Since doing that she has had many people reach out to tell her that made them schedule their mammograms.

Beyond the physical pain, there is mental and emotional anguish whenever she looks at herself in the mirror.  Her family who has been her support has also had to suffer emotionally from this diagnosis as well.  Diagnosed during COVID-19- her husband and 23-year-old daughter had to be remotely involved in the visits; at least they could participate in the encounter.  Beyond the shock of a cancer diagnosis, the family of cancer patients are also pulled in the emotional and mental anguish of cancer. Her daughter, who had lost her father had to deal with the emotions of potentially losing her mother too, and her husband who had lost his sister to cancer feared losing his wife.

Like so many women, Behme missed her 2019 and 2020 mammograms due to COVID-19.  She advocates and encourages others to get their regular mammograms and do self-exams.

“While mammograms have been proven necessary screening for early signs of breast cancer, women typically don’t look forward to the uncomfortable annual visit. You know your body better than anyone else, follow your instincts,” says Behme.

She also tells other women to arm themselves with knowledge and educate themselves so they can ask for what they think they need. “I was the one who asked for the ultrasound at that first appointment and I only wonder what would have happened if I hadn’t asked for it,” says Behme.

Behme has joined a survivor group at UConn that will start meeting in a few weeks and continues to fight and advocate for breast cancer awareness. Her message is for early detection and for being a part of decision-making for your own care. Your health is in a large part up to you.

If you are concerned about your breast health or need a mammogram, visit UConn Health Women’s Health, UConn Health Carole, and Ray Neag Comprehensive Cancer Center, or schedule your mammogram online or by calling 860-679-3634.