Breast Cancer
Is a Too-Common
Secondary Cancer

Prophylactic (preventive) mastectomy is a choice for some.

Most women know that they should be screened for breast cancer beginning at age 40; this means having a mammogram performed once a year. It makes sense, since breast cancer is the most common cancer in women (other than skin cancer). Approximately one in eight women will be diagnosed with breast cancer during the course of their lifetimes. Breast cancer represents 30 percent of all new cancers. Only lung cancer kills more women.

But what makes sense for women who were treated for Hodgkin lymphoma, which often has included radiation aimed at the chest–mantle radiation? According to Jennifer Plichta, MD, Director of the Breast Risk Assessment Clinic at Duke Cancer Institute, they need to be well-informed on the screening guidelines, which are regularly reviewed and updated. “I suggest they ask their provider to look at the National Comprehensive Cancer Network [NCCN] guidelines,” she says, noting that she is a member of the committee responsible for screening and diagnosis guidelines. “Some primary care physicians are not aware of the latest recommendations because they only have a few patients who were treated for Hodgkin’s.”

The current guidelines state that, for someone who received chest radiation between age 10 and 30–

  • Before age 25: beginning eight years after radiation, see your physician for screenings once/year, and perform breast self-exam.
  • After age 25: beginning eight years after radiation, see your physician for screenings every 6-12 months, obtain annual mammograms beginning eight years after radiation but not before age 30 (tomosynthesis recommended); obtain annual breast MRIs beginning eight years after radiation but not before age 25; along with performing breast self-exam, women should consider risk-reduction strategies, such as prophylactic (preventive) mastectomy.

“This is similar to how we counsel women who have a family history of breast cancer, a personal history of high-risk breast lesions or someone who carries a BRCA1/2 gene mutation, which is associated with a lifetime risk of about 70 percent,” notes Dr. Plichta. “People who were treated for Hodgkin’s are at high risk for developing breast cancer, somewhere between 30-70%, depending on the age when they received radiation, whether or not they had chemotherapy and other factors. The goal of screening is to catch it early.”

 

“The risk of a second breast cancer is lower than the original risk; it may be as high as 25-30%. I tell patients: you don’t have to have a mastectomy.”
Jennifer Plichta, MD
Jennifer Plichta, MD
Jennifer Plichta, MD, Director, Breast Risk Assessment Clinic, Duke Cancer Institute

Striking Progress in Screening, Diagnosis and Treatment

Countless lives have been saved and extended thanks to the introduction of routine mammogram screening during the 1980s. “Mammograms themselves have gotten better,” notes Dr. Plichta. “Now we have 3D mammograms, tomosynthesis and contrast mammograms. Then there is breast ultrasound, another option, and MRI. Today we also have abbreviated MRI, which takes fewer pictures than traditional MRI. For some patients, it serves as a great screening tool. MRI imaging is far more sensitive than a mammogram, so it finds nearly everything.”

Shelley Ferris found that out in 2016. The Melbourne, Florida, resident was diagnosed with Hodgkin’s in 1987, at age 23. “They told me I was cured after five years,” she recalls. “Years later, I got on the internet and saw there were things I needed to follow. I already had a thyroid problem when I had my first mammogram around age 40.”

It was an MRI screening for breast cancer that detected a thymoma, cancer of the thymus gland—the small organ at the center of the chest that makes and controls specialized white blood cells, called T-cells. “It was removed, but the cancer recurred in 2022. I’ve been told it’s probably not curable, but is treatable, hopefully for a long time.”

Shelley has never been diagnosed with breast cancer and chose to not have prophylactic mastectomy. But because she had MRI screening, a completely different cancer was found and treated. “Breast cancer isn’t the only thing to worry about. Your entire chest is vulnerable. We have to be aware of the other secondary cancers.”

Dr. Plichta notes that breast MRI is associated with more false-positive findings than mammograms. “I explain to patients that a positive MRI could result in further workup—potentially more imaging, biopsies, even surgery—which ultimately turn out to be negative and benign,” she explains.

There are several ways to classify breast cancer:

  • DCIS (ductal carcinoma in situ) – an early form, located in the milk ducts
  • Invasive ductal carcinoma – the form that has moved outside of the ducts
  • Receptor-positive breast cancer – grows in response to estrogen or progesterone
  • HER2+ breast cancer – over-production of an oncogene that stimulates breast cancer cells to grow and divide.

The diagnosis must consider family history—notably if someone carries a mutation in one of the BRCA genes or another hereditary gene mutation associated with a high risk of developing breast cancer. For all cases, the stage must be determined; this considers the tumor size, whether or not lymph nodes are involved with the cancer and whether or not the cancer has metastasized—i.e., spread to another part of the body. There are four breast cancer stages: I, II, III, IV.

The screening and diagnosis of breast cancer make it one of the most complex cancers. Then there is treatment which, according to Dr. Plichta, “is about as personalized as you can get. There are situations where a woman will qualify for chemotherapy before surgery. Depending on how much surgery you have, you may be able to avoid radiation. This is important for individuals who received mantle radiation; this may, of course, lead to the decision to have a mastectomy.

“We consider everything as we present patients with treatment options,” says Dr. Plichta. “In the case of someone who was diagnosed with Hodgkin lymphoma, we look carefully at what treatment they received, their current medical problems and if there could be potential complications, such as wound healing.” The patient, in dialogue with the breast cancer specialists—in most centers, a multidisciplinary team—will hear about treatment options:

  • Surgery:
    • Mastectomy vs. breast conservation (lumpectomy)
    • Bilateral mastectomy (removal of both breasts after one breast is found to have cancer)
    • Management of the axilla (underarm area where the main lymph nodes associated with the breast are located)
    • Reconstruction (cosmetic surgery to rebuild the shape and look of the breast)
  • Systemic:
    • Chemotherapy
    • Targeted therapies
    • Endocrine therapy, such as tamoxifen
  • Radiation:
    • Whole breast, with or without a boost
    • Directed at lymph nodes
“Beginning in the early 2000s, we began trying to avoid radiation in favor of chemotherapy alone with careful monitoring of treatment response with PET scans.”
Patricia Ganz, MD
Patricia Ganz, MD
Patricia Ganz, MD, Director of Cancer Prevention and Control Research, UCLA’s Jonsson Comprehensive Cancer Center

Prophylactic (Preventive) Mastectomy is One Consideration

When a woman has had mantle radiation, she is at risk for developing breast cancer in both breasts, as well as damage that leads to other late effects; the heart, lungs and thyroid are vulnerable. “If someone is diagnosed with breast cancer, they may not be a candidate for more radiation,” says Dr. Plichta. “We need to discuss what kind of treatment they want and if they want to remove both breasts. The risk of a second breast cancer is lower than the original risk; it may be as high as 25-30%. I tell patients: you don’t have to have a mastectomy.” Dr. Plichta performs all types of breast surgery; if breast reconstruction is desired, a plastic surgeon performs it.

There is plenty to discuss, says Patricia Ganz, MD, a medical oncologist who serves as Director of Cancer Prevention and Control Research at UCLA’s Jonsson Comprehensive Cancer Center. “The techniques for performing reconstructive surgery have advanced. It used to be that you couldn’t have reconstructive surgery for six to nine months after a mastectomy, but now it’s done in the same surgery, and the cosmetic results are much better.”

It is also true that breast reconstruction comes with a certain complication rate, especially when breast implants are used. “Many are minor complications that require office procedures,” Dr. Plichta explains.

“Women who have breast reconstruction will have no sensation in the breast or chest area,” Dr. Ganz notes. “This is the trade-off.” Some women decide to go without reconstruction—an option known as flat closure.

If the goal is to prevent a second breast cancer diagnosis, there are options for having a prophylactic mastectomy. “You can consider taking tamoxifen for five years, which is effective. However, it cannot be taken if you are trying to get pregnant.”

As cancer specialists know, some individuals avoid the doctor’s office—and thus the screenings that are known to detect cancer early. “These patients prefer to not think about early mammograms and following the guidelines, so they put it aside,” says Dr. Ganz. “Most women who have had radiation know that it is a risk factor, but some individuals feel they’ve been through enough.”

She is a pioneer in the assessment of quality of life in cancer patients. “We see accelerated aging and a chronic disease burden in many people as a result of complex cancer treatment with radiation and chemotherapy,” Dr. Ganz explains. “Some individuals experience physical exhaustion and cognitive difficulty. We don’t know why some people are more predisposed, but there may be a genetic component. It’s important to prevent coronary artery disease after mantle radiation, so watch your blood pressure, diet and cholesterol, and don’t smoke. Be screened for other cancers—not just breast cancer.

“Mind-body interventions are quite useful. Tai chi helps insomnia, and yoga and walking are beneficial in managing fatigue. Mindfulness meditation is useful for depressive symptoms.”

Approximately 1 in 8

women will be diagnosed with breast cancer during the course of their lifetimes.

30 percent

of all new cancers are breast cancer.

Thanks to ongoing research and the refinement of treatment—notably, omission of radiation therapy—there will be fewer cases of breast cancer and cardiac disease among Hodgkin’s survivors in the future. “Beginning in the early 2000s, we began trying to avoid radiation in favor of chemotherapy alone with careful monitoring of treatment response with PET scans,” says Dr. Ganz. “Once a PET scan shows a complete response, only a few more cycles of chemotherapy are needed, thus avoiding long-term treatment in some patients.”

For those who received treatment during earlier decades, the message is clear. “Be aware of your potential risks, get your screenings and have an experienced physician follow you,” says Dr. Ganz. “Breast cancer is highly treatable, but early detection makes a big difference.”

Prophylactic Mastectomy: A Personal Decision—With a Lot to Consider

After radiation has been aimed at your upper body, you are vulnerable for developing breast cancer. Most women who receive treatment for Hodgkin lymphoma know this. Having a prophylactic (preventive) mastectomy will greatly reduce the likelihood of developing breast cancer, but not completely, because there can be remaining breast tissue. There are several factors to consider. Each of the following individuals made the decision based on her unique set of circumstances.

Michelle Wright gave it a lot of thought. She was diagnosed with Hodgkin’s in 1989 at age 20, during her last year of college, and received high-dose radiation to her neck, chest and abdomen. “My oncologist said, ‘Pretend you never had it,’” she recalls. But that wasn’t an option.

“Right away, I was dizzy a lot. I had hypothyroidism, then esophageal strictures. I wasn’t told about breast cancer, but once I began having mammograms, I was always called back for follow-ups. It was annoying.”

Around this time, she found a Hodgkin lymphoma group. “That’s when I realized all the problems we face,” says Michelle, who lives in St. Augustine, Florida, and works as a respiratory therapist. “I had a whole slew of symptoms—that other people had, too. I pushed to begin having breast MRIs, and a papilloma was detected.” The benign lesion was removed. “I started thinking about how I don’t control everything about my health, but there was something I could do.”

“I started thinking about how I don’t control everything about my health, but there was something I could do.”

She decided to have bilateral prophylactic mastectomy. “I had seen an article stating that, by the time I was 50, there would be a one in three chance that I would develop breast cancer. I didn’t want to deal with it; it was something I could take off the list—two and done.” But before Michelle could proceed with the surgery, she was brought to a dramatic halt.

“I was in the cardiac cath lab at my hospital as part of the team performing a procedure when I felt pressure in my chest,” she recalls. “I wondered: am I going to be the next patient on the table?” When the procedure was complete, she quietly rolled the EKG machine to a location where she could perform the test on herself. “I showed the results to the cardiologist, who told me I needed to get to the ED—now.” Michelle had cardiac catheterization two hours later and bypass surgery the next day.

“While I was recovering, I worried that the cardiac surgery might prevent me from having prophylactic mastectomy. Then, I had my thyroid removed.” Despite the questioning of family members, Michelle had bilateral prophylactic mastectomy, followed by reconstruction, in 2018. She knows it was the right decision. “Oh yeah—definitely,” she says.

It didn’t take Joan Seidel long to decide about having bilateral prophylactic mastectomy. She was diagnosed with Hodgkin’s in 1971 at age 13. “They thought I had mono, then low iron,” she recalls, noting that it took three months before the diagnosis was made. “They finally checked my bone marrow and did a staging laparotomy.” She received the standard MOPP chemotherapy (mechlorethamine hydrochloride, vincristine sulfate, procarbazine hydrochloride and prednisone), as well as mantle radiation.

“I don’t believe I received a heavier dose of radiation than most people had, but I don’t think the machines were as well-calibrated as they would be later on,” Joan says. “I also don’t remember hearing that I was at risk for developing breast cancer until I went to the Late Effects Clinic at the Dana-Farber Cancer Institute around 2000. My primary care physician was really good, and I’d been having regular mammograms.” She then began receiving routine MRIs.

“Breast MRI detected a lump, and a biopsy was performed. It was breast cancer, but the tumor was small. As soon as I got the diagnosis, I began thinking about having a bilateral mastectomy. I had conversations with my spouse, my therapist and my primary care physician. I laid out my reasons: I knew that breast cancer would continue to be a real possibility, and every six months it would be in my face again. I would be waiting for something that seemed inevitable.”

“I knew that breast cancer would continue to be a real possibility, and every six months it would be in my face again. I would be waiting for something that seemed inevitable.”

Joan’s surgeon presented another way to consider her situation. “She explained that it had taken 49 years for breast cancer to develop, so I shouldn’t assume I would develop it in the other breast. I think she wanted to make sure that I was sure.” She was sure; she had bilateral mastectomy with flat closure.

On some level, Joan’s instincts were correct. After her surgery, she was informed that the pathology report indicated cancer was present in the other breast. “I started physical therapy right away, which helped me enormously, and doesn’t always get due credit in post-treatment care,” she says. “You need to work on the loss of muscle and range of motion.”

Despite having her thyroid and ovaries removed, she considers herself as a reasonably healthy Hodgkin’s survivor. “I’ve had musculoskeletal problems for sure,” says Joan, who lives in Sarasota, Florida. “My neck and shoulders became weak, which led to my spine getting out of alignment. Eventually, one shoulder was much higher than the other.” After 35 years working as a successful professional photographer, Joan decided that carrying camera equipment had become too difficult.

Three years after having bilateral mastectomy, she knows she made the right decision. “Everyone brings different perspectives to the table. But for me, no regrets. It’s not a difficult surgery compared to others I’ve had,” she adds, “and I think the decision was easier for me because I’m older. If I was younger, it would be a different story.”

Lori Winterfeldt was diagnosed with Hodgkin’s when she was 24 years old and trying to donate blood. “I was told I was too anemic to donate,” she recalls. “When I found a lump on my neck, I went to my doctor. At the time, I thought that I hadn’t any symptoms. Looking back, I think I had a symptom or two.”

It was the early 1990s, and she was working full-time and attending graduate school part-time. She put school on hold while completing six months of chemotherapy followed by four weeks of mantle-field radiation, then additional chemotherapy. “Watching out for breast cancer wasn’t something I was told to do,” says Lori, who lives in New Milford, Connecticut. “It was more about getting well and moving on. I was told I might have thyroid problems, and that was one of the first things that happened.”

Eventually, Lori began having shortness of breath and fatigue. “It was getting harder and harder to walk a city block,” she says. She had obtained two master’s degrees—in library science and health administration—and held a variety of jobs in healthcare organizations, from managing a clinical practice to promoting a patient portal.

After consultation with various cardiologists, Lori was frustrated by clinicians who could not figure out what was happening. “I decided to see a cardiologist at Memorial Sloan Kettering Cancer Center, Richard Steingart, MD, who determined that I needed a pacemaker. He also encouraged me to see Emily Tonorezos, MD, in the survivorship clinic, which was one of the best things I ever did.”

Shortly after insertion of the pacemaker, she was diagnosed with breast cancer in her left breast. “The surgeon proposed a mastectomy, but I didn’t see why I couldn’t have a lumpectomy,” says Lori, who was in her early forties and recently married. “I wasn’t ready to lose my breast. I was working in the medical library and doing my own research. I couldn’t find any evidence in the literature that lumpectomy was any less effective than mastectomy in Hodgkin’s patients.”

“I couldn’t find any evidence in the literature that lumpectomy was any less effective than mastectomy in Hodgkin’s patients.”

She spoke with her radiation oncologist, who told Lori that a lumpectomy could not be performed on the same side as her pacemaker. “He felt bad suggesting it so soon after placement of the device, but he said in order to have the follow-up radiation that I needed, it was crucial to move my pacemaker to the other side.” The device was moved to the other side of her chest, and Lori finished treatment with radiation following her lumpectomy, the standard treatment for many women with no cancer history.

“It’s really important to ask lots of questions,” she notes. “Don’t assume what you’ve been told is the only answer. I encourage people to seek reputable sources, and talk with other survivors.

“I would add that it’s nice to have the Hodgkin’s International community to fall back on. Fellow patients are each other’s best resource.”

Help us to reach Hodgkin lymphoma survivors worldwide with life-saving information, resources and support.

Donate today!