Breaking Up Is Hard to Do: Why It May Be Time to Break up with your Oncologist
In the summer of 2019, I came to the sad realization that it was time to break up with my oncologist, Dr. Kopelman*, who had been my doctor for nearly 10 years. In 2008 he began treating me for my first breast cancer (stage III ER +); he did such a good job that I was in perfect health for 10 years. Given my young age (35) at diagnosis, he spared no treatment and threw everything at it; chemo, radiation, double mastectomy, Lupron, and 10 years on the biggest dose of Tamoxifen.
Relationship with my oncologist "Mr. nice guy"
Dr. Kopleman was a “nice Jewish guy,” around my age, who like me, grew up in New Jersey. Under different circumstances, he would have been considered great marriage material. Having come from the same place – the affluent and very Jewish world of the New Jersey suburbs – our rapport was easy, and we laughed at the same jokes and shared stories about our kids. At the time of my first diagnosis, his kids were in pre-school and my son was 6 months old. For 10 years, our visits ended with, “Keep up the good work,” and I would cry in relief that I was still in remission, giving him a hug.
In 2018, at the time of my second diagnosis, he was visiting colleges with his daughter, and my son was in fifth grade. It was the same cancer that had mutated into a different subtype. Dr. Kopleman told me I would have to remain on treatment for the rest of my life, which of course, was devastating news.
Living with triple negative breast cancer
My first year living with mTNBC was better than I had expected. Taxol was surprisingly tolerable; I had been on Taxol 10 years prior, and it had not been pleasant. In the metastatic setting, with different treatment goals, I discovered that the reason it was more tolerable was that it was a lower dose. If I can stay on Taxol, I said to myself, then mTNBC isn’t that bad. On Taxol there was very little I couldn’t do – I was living a full life and went to the gym a few days a week. In June of 2019, my family and I were on vacation in France, and we were driving on a windy country road. My hand happened to brush my neck and landed on a bump. The first symptom of mTNBC had been a similar bump on my neck, so naturally, I was scared.
Still feeling uneasy & worried that breast cancer treatment had stopped working
Upon my return from France, I immediately called Dr. Kopelman’s office to tell them about the bump and that I was worried that my treatment no longer was working. I pleaded with them to do a biopsy or scan, but they were very firm in their “wait and see” approach, and that I should continue on my planned cycle of Taxol. I remained very uneasy. Eventually, my tumor marker test was the needed evidence that Taxol was no longer working and that it was time to switch.
Deciding whether to break up or not
I was starting to feel that my beloved Dr. Kopelman was in over his head. Of all the subtypes, mTNBC is the most difficult to treat and has the fewest treatment options. The decision about whether to break up with Dr. Kopelman kept me up at night. He knows me and he gets me, and with almost 10 years in remission, he has done right by me. But, his specialty is not breast cancer, so how much could he really know about mTNBC, which comprises a small percentage of breast cancers? It was a bad sign when he hadn’t heard of some of the new treatments on the horizon.
The importance of a strong support system when living with TNBC
My friend, Ricki, insisted that I get a second opinion and helped me to make an appointment at Memorial Sloane Kettering to see Dr. Tipton*, one of the leading TNBC oncologists. Ricki told me that Dr. Tipton will give me a hug when we meet and that she wears fabulous shoes. Sure enough, both proved to be true, and she exceeded my expectations in every way. I sat on the opposite side of her desk, and we had an impressive dialogue. She has great optimism for my future, given the emergence of many new therapies, and the fact that my cancer had been latent for 10 years. Dr. Kopelman had never told me that the length of time between initial diagnosis and recurrence is a primary prognostic indicator. Dr. Tipton proceeded to map out the emerging new treatment paradigms and explain how much progress was being made. After speaking to Dr. Tipton, I stopped crying about my cancer progression and felt optimistic.
Making a change
Dr. Tipton showed me what good looks like, that is, the difference that it makes to see a top doctor in TNBC. I didn’t realize how I would feel talking to a top doctor in TNBC – that it provided me clarity and wisdom and a renewed sense of optimism. This level of insight was missing from my conversations with Dr. Kopelman and as painful as it was, it was time to break up.
A doctor who understands TNBC
Still, practically speaking, I didn’t know what I would do because seeing a doctor at MSK was going to be a challenge, both in terms of my health insurance and the distance. But this all fell in place when I met Dr. Pasquale at Yale-New Haven when I applied for a clinical trial that he was leading. My interactions with Dr. Pasquale were formal. He is European, and our discussions were very serious, and there was no joking around. But I quickly realized that Dr. Pasquale was at the same level as Dr. Tipton in his knowledgeability about TNBC. He does not have fabulous shoes and he is not a hugger, but that didn’t matter. I had found my doctor – a TNBC expert right here in New Haven.
Trusting your gut instinct
Unfortunately, I did not qualify for that trial, but I made the request to switch to Dr. Pasquale. Initially, Dr. Pasquale was taken aback and said that there was no reason for me to leave Dr. Kopelman because they all work together to make treatment decisions. I explained that being about to have Dr. Pasquale as a doctor would make a difference for me in terms of how I am able to process information and make decisions. He agreed to take me on, and I have been under Dr. Pasquale’s care for almost a year now, and I couldn’t be happier.
Doctor & patient compatibility
On the surface, I’m not sure if Dr. Pasquale and I have anything in common. Our interactions are formal and we never crack jokes. But we share the same proactive spirit and drive to prolong my life and fight my cancer as aggressively as possible. At the moment there is any concern, any new bumps or issues, Dr. Pasquale orders a scan. With his expertise, when we need to change course, we are able to do so very quickly. With Dr. Kopelman, the process of switching treatments took several weeks. With Dr. Pasquale, a switch decision occurs within a day or two. In fact, my most recent switch decision was made in two hours – and this was at the height of the current pandemic, which created many additional obstacles. (Note Dr. Pasquale referred to as Dr. Y in my previous blog.)
Breaking up with your doctor is hard
Breaking up IS hard to do, and it was so difficult I could not even break up with Dr. Kopelman in person, or I would have broken down crying. To my fellow meta-sisters out there, don’t hesitate to get a second or third opinion and see if there are other doctors that may be a better fit for you. Changing doctors is not easy and tears may be shed, but ultimately it could change your outcome. There is such a tremendous mind-body connection, and if changing doctors put you in better mind space, it’s worth considering. I followed my gut feeling that it was time to leave Dr. Kopelman. I didn’t know exactly what I was looking for but I knew it when I found it.
Author's note: *Doctors’ names have been changed to protect their privacy.
Editor’s Note: We are extremely saddened to share that on Friday, April 9th, 2021, Alyson Tischler passed away. We know that Alyson’s advocacy efforts continue to reach many. She will be deeply missed.
Caregivers: Do you practice self-care?