A leading oncologist at the University of California San Francisco, Dr. Pamela Munster has advised thousands of women on how to cope with the realities of breast cancer, from diagnosis through treatment and recovery. But her world turned upside down when, at forty-eight years old and in otherwise perfect health, she got a call saying that her own mammogram showed “irregularities.” That single word thrust her into a wholly new role—as patient, and not only that of cancer but of the feared BRCA gene mutation as well. Suddenly, she realized that being a true “expert” in a disease was far beyond the scope of her medical training, and that she had a lot to learn if she wanted to hold onto her precious life.

In honor of National Breast Cancer Awareness month, read an exclusive excerpt below from Twisting Fate on the aftermath of Dr. Munster’s recovery, and how she learned to discover a “new normal” for herself and her family. Twisting Fate is available now.

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Back to Normal: Feeling, and Fighting, the Cancer Blues

 
“Your exam looks fine; I cannot find any evidence of your tumor in the skin or lymph nodes. Your lungs are clear and everything else looks normal to me.” I couldn’t have been more excited to give such good news to a patient like Lis, who was well into the second year of her diagnosis of metastatic breast cancer. She would see me every month in clinic and she was doing well over the last two years. We were the same age and both had three kids, and over the last months had grown very close as we talked about our families and matters beyond breast cancer during her visits. Thinking my evaluation was a high enough note to end on, I walked over to the sink to wash my hands and get ready to go. But before I could turn on the faucet she stopped me: “Do you think this is a good time to exchange my implants?”

I must have shot her my “Where did that come from?” look. I knew she had had reconstruction more than ten years earlier, after her first diagnosis, so it had been a while. But medically the implants were safe with very little tissue reaction, and cosmetically her reconstruction looked fine.

She paused. “Please don’t think that I am vain, but I think I am ready to change my implants and improve a few things here and there. If there are any advances in the techniques and new options for implants, I would like to discuss them.

“Don’t get me wrong.” An apologetic smile crossed her face, as if she was for a moment uncertain whether to go on. “I am totally content and have gotten used to the reconstructions, the scars, and the looks. I really like my cosmetic result, and I am quite aware that not everybody is as lucky as I’ve been.”

It had only been about seven months since my own surgery and I felt myself tense while listening to her. Having taken care of many patients who had undergone either a one-sided or bilateral mastectomy, I knew that the majority of women always remain somewhat sad to have lost their breasts. However, regardless of whether the surgery was done by choice or by necessity, very few women ultimately regretted the decision of having a mastectomy. Having peace of mind of being definitively cancer-free counts for a great deal. As I looked at Lis now, I saw the courageous young woman who had undergone a double mastectomy “to leave no stone unturned”; and even after having metastatic disease anyway, she did not seem to regret her decision. Standing next to her by the examining table, I felt a sudden feeling, a pang of angst. I knew that mastectomies really don’t save lives in the majority of women, and what if I had done this extensive surgery in vain? It still felt all so very raw for me.

“How long did it take you to come to terms with losing your breasts?” I blurted out, instinctively crossing my arms in front of my chest.

Clearly surprised by my question, she did not reply immediately. I averted my gaze, forgetting for a moment that I was the physician in this relationship. I could feel her eyes scrutinizing my chest. When she looked back up, she had a knowing impression in her eyes.

“Why are you asking?” She searched my face for answers.

At that time, I was still uneasy about talking to patients about my own breast cancer—let alone mentioning it during clinic visits. It was too vulnerable a confession, and since I was still uncertain of what patients would think of a physician going through a similar process as theirs, I really did not think I should take precious time from their visits. Would they consider me less able to do my job if they knew I’d been sick, that I hadn’t been able to save myself from the disease I treated every day?

Lis, however, was different. I knew I had a special bond with her, and in this particular moment I was torn between needing encouragement from someone who had gone through my present struggles, and needing to toe the line between professional and personal relationships. Focusing on the medical chart in front of me, I remained silent for a long moment and hoped she might forget my question.

When I realized her inquiring eyes weren’t leaving me, I took a deep breath and responded. “I had a double mastectomy six months ago, and I wonder how one copes with it in the end.”

“How are you feeling?” she asked me. She quietly reached out for my hand.

I slowly pondered the question, and then realized that I really was not quite ready to talk about it.

“Well, given the circumstances,” I deflected and then launched into an extended explanation, to answer her question, about the latest advances in breast reconstruction. Talking doctorly about medicine, in technicalities and jargon, brought me back into my comfort zone.

Sensing how torn I felt, she didn’t delve deeper. Instead we talked more about possible options for her to revise her reconstruction.

“Do you think it is worth it for me, and do you have any medical concerns?”

Unspoken in her question were the ultimate questions—first, whether I thought she would live long enough for the surgery to make sense; and second, the fear that because she had metastatic breast cancer, it would be difficult to find a surgeon to agree to another extensive surgery just for “cosmetic” reasons. Her concerns were quite justified, because more often than not, I had been told by a colleague that such a surgery would not make sense if the person were going to die in the next couple of months or years.

“I think you look beautiful,” I said, “but you had saline implants. There are newer implants that look and feel nicer and you would be much happier with. Most of them are now silicone-based, and after extensive testing for more than a decade, they’ve now been deemed safe. The initial concerns about leaking have been resolved, and their shape and consistency has improved over saline. There are still some worries with a subtype of implants that have been linked to an unusual type of lymphoma, but they are exceedingly rare, and I don’t think our surgeons use these types anyway.”

Then, looking directly into her eyes and holding her gaze, I added, “I have no hesitation for you to go through a revision from an oncology standpoint. With your permission, I will refer you to a wonderful plastic surgeon who is both technically very good and who will be very sensitive to your questions and special circumstances.”

As her visit drew to a close, she gave me another encouraging look, an opening to talk about myself now that her turn was over. I could not quite understand why, but at the time I felt so out of sorts and knew I was not yet ready to talk. At least not with Lis. How could I be upset about my situation, when Lis’s diagnosis had this vastly different dimension? How could I have put this burden on my patient, to doctor her doctor? My DCIS was a thing of the past, while she would have to deal with metastatic breast cancer for the rest of her life. I regretted losing control for that moment and showing the side of myself I normally keep closed up inside my white coat.

I started toward the door, ready and eager to move onto the next patient, when I heard Lis say quietly, “I am happy to talk, when you’re ready. Just because my diagnosis may be worse than yours, it doesn’t mean you are not allowed to struggle with yours. You have been such a rock in my care, I would love being of some help to you. Please reach out anytime.”

I nodded and gave her a hug. “Thank you, and I truly appreciate your offer, but here at the clinic, the focus is all about you.”

With a forced smile, I left the examination room. Needing a short reprieve before seeing my next patient, I stepped out into the stairwell and sat on the steps.

How did I feel? I really didn’t know how to answer this.

On one hand, I felt really lucky. I only had Stage 0 breast cancer, and other than having bruises and scars, I would be fine—there was very little real threat to my life even in the long run. My chance of survival should be close to 100 percent. My reconstruction surgeries were also completed without any complication, and I had virtually no physical compromise. So, should I then not be well on the way to feeling better? I had had many sports-related surgeries in my life, and I remember the pain being less of a frustration than the physical limitations during recovery. Life went on even after I was cut open. So, why was this so different?

It’s true that for most patients, the physical recovery appears much quicker than the emotional recovery. After the initial hectic pandemonium of decision-making, all energies are geared toward getting through treatment, dealing with side effects, and holding your life together. The mechanics of therapy in early-stage breast cancer or any other curable cancer are fairly straightforward. Surgery, chemotherapy, radiation therapy, in this order, or variations of it. Lots of support from family and friends—frequent and reassuring visits with the medical team. A clearly structured, and mostly well-supported, blueprint to fight for life. I was an intensely busy professional with little wiggle room in my life for anything. Fitting cancer into my hectic work and parenting schedule had really not been that easy; but somehow, I’d managed to get through it. Now, all of that was over—life should have gone back to normal. Somehow, it just had not.

The previous day, as I walked the hall to my office, I looked at the ever so familiar names of my colleagues on their office doors: “Dr. Bergsland,” “Dr. Warren,” “Dr. Jahan.” As a patient, I no longer felt a part of this group of doctors, my colleagues. But now that I was back in clinic seeing patients with real problems, I did not feel I belonged here as a patient anymore, either. In fact, I almost felt ashamed that I was not happy—ungrateful that I could not appreciate having been so fortunate.

What I had previously only witnessed from observing patients, I was now experiencing. In the middle of a very busy clinic, I was suddenly gripped by fears that I could not articulate. I would see a patient who only had DCIS and yet her tumor had spread to the liver—and my confidence that I would be fine completely vanished. Would this be me?

I had lost my identity. I was stuck in between my old “medically care-free” self and this new state that I could not yet define. I had lost my sense of immortality, my optimism for the resilience of life.

One night, I dreamed I received a phone call that the tumors had spread to my brain. Disoriented and panicked, I woke up and fumbled for my phone in the dark; it was indeed ringing, but it was a doctor from the emergency room calling me about a mutual patient. Thoughts of brain tumors had become my literal nightmare that caught me completely off guard. I could read an obituary of someone who died at age eighty-five, and fall into a bottomless pit thinking I would never get to that age.

All that I was experiencing was all too familiar to me. I had heard it many times, in text books, blogs, and countless conversations with patients in my clinic. Patients had told me that they could not stop crying for days, or had sudden crying spells, unprovoked and unpredictable. Common to most testimonies was that no amount of reassurance that the prognosis was excellent, or the steadfast support of family and friends would help. Often patients even actually did not want to impose on family and friends more than they already had. The loneliness that a cancer diagnosis brings amid so many well-wishers is difficult to explain. For many patients, this period, for which I am still striving to find a good name—feels similar to a car crash that one survives. The visuals remain long after the bruises have healed. Physically the worst was over. I had done everything above and beyond what was needed to survive this cancer. The imminent danger had dissipated, and yet unlike the physical events, my emotions had not been resolved and deep down, my mind was stuck in the fears and threats, while outwardly everything seemed fine.

This does not just happen for those patients with a diagnosis of cancer. I’m reminded of one of my young patients who had had a risk-reducing bilateral mastectomy and oophorectomy for a BRCA1 mutation to prevent cancer. She came through the surgeries with flying colors. At the visit just after completing her surgery and reconstruction, she beamed at me and enthusiastically told me that she now had everything behind her, and she was ready to take on any battle that lie ahead. She tried to convince me so thoroughly that her life was great, and she could not wait to go back to her weight lifting and social life. Listening to her, I was not entirely certain whether she was trying to convince me that she was fine, or herself. And maybe, I hoped she would be just fine.

“I am glad you’re through all of your surgeries, and it is wonderful to see how well you are doing,” I said reassuringly. “However, it’s not uncommon that in the next few months, the reality of losing your breast and going into early menopause will make you sad. It may take a good twelve to eighteen months to recover and find your bearings again. Please know that I am always here for you.” She looked at me, not really understanding what I was trying to say. I felt a twinge of remorse for spoiling her high. A year later, though, she told me how true my words had been. In later conversations she shared that it took her almost two years to put the surgeries behind her, and as an afterthought, how glad she was that she knew that it would take time.

Sitting in that stairwell, I should have been saying all of these words to myself. The “cancer blues” can span a very broad range from difficulty coping with the new situation to a reactivation of post-traumatic stress for those with known trauma in their past, or even to overt depression. For some, it may just be survival jitters; these feelings can span a very broad range.

My self-imposed pressure to feel constantly happy—to have survived cancer—really wreaked havoc with my emotions. As a doctor, I usually feel upbeat, finding ways to encourage patients and be optimistic. I had many of those days, profoundly grateful to be well healed and ready to move on. But then there were the days when I just wasn’t feeling it. Once, when I was completely frustrated trying to meet another deadline, one of my colleagues said somewhat jokingly to me, “You know, you are just human; you could give yourself a little bit of a break.” I bristled at her. Being out of control was not who I was. She smiled caringly at me and told me to “be kind to myself” and accept that healing and restoring a healthy sense of femininity after any type of breast surgery takes time. For some reason being kind to myself stuck more than giving myself a break; reminding myself of that phrase became one of those very simple tricks that was actually very helpful in accepting my new situation.

As a researcher and clinician, I knew that within two to three years, almost everyone is back to where they started before the diagnosis. I could anticipate it and prepare them for it, but lacking the technical language and procedures and treatments I relied on for healing the physical side effects of treatment, I wasn’t always equipped with the remedies it takes to help emotional recovery. Now, I know that just understanding what someone goes through is its own kind of medicine.

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Excerpt from Twisting Fate: My Journey with BRCA—From Breast Cancer Doctor to Patient and Back. Copyright © 2018 by Pamela Munster.