The More You Know

I knew nothing about Stage IV metastatic breast cancer (MBC) prior to my de novo diagnosis. Heck, I didn’t know much about any stage of breast cancer. In fact, I have since learned that much of what I THOUGHT I knew about breast cancer was wrong and incomplete—including my personal risk. What a difference a year can make.

I make no apologies for my anger as an MBC patient and advocate. I am not angry about the diagnosis itself, though. My beef is with a healthcare system that basically throws us to the wolves (at least in the United States). We shouldn’t have to figure this all out on our own.

Starting to learn about MBC

When we set out to learn about MBC and what it means for us, everyone turns to the internet. I certainly am not alone in thinking, at first, that NO ONE lives beyond 5 years. And my healthcare providers did nothing to correct me or give me accurate information.

I don’t want anyone to give me false hope. But don’t rob us of ANY hope. While I know that I MAY not live more than a few years, there is ample evidence that I MIGHT be around a while.

My first oncologist refused to talk about lifespan and told me to stop thinking about my future. My second oncologist was not much better. This is what she put in my progress notes:

“She asked about her overall prognosis and I discussed that the answer to this is a bit more difficult as ER/PR positive breast cancer can often have a relatively good prognosis, with patients doing well for several years. We spoke at length about this.”

Several.

Doctor interactions

When my primary care physician wanted to put me on a statin for high cholesterol, I pushed back due to side effects at first. Then I detected that this was another misdiagnosis, based on an error in risk calculations. My comments to this doctor were, in part, entered into her progress notes.

She mentioned only that I said, "well, if I only have two years to live." No, I said, "If I only have two years to live, there is only so much I can worry about my 10-year risk of a cardiac event. And, honestly, I would much rather die of a sudden heart attack than this cancer."

Given that this was put in my record, one might THINK that healthcare providers would say, “Why do you think you only have two years to live?” Or to reach out to my oncologist to alert her that I may be thinking I have less time than I actually do—and that I might be in distress. Instead, crickets. And I continued on for months thinking I didn’t have much time left.

Learning about treatments

I started learning more about MBC after my second oncologist switched me to hormonal treatment at the end of September 2020—after I finished up my 4th and final A/C chemo treatment of what was initially slotted to be full ACT.

But, since I knew NOTHING about hormonal treatment, I had this sinking feeling that I was being given less aggressive treatment; the kind of treatment given when it isn’t much you can do and death is imminent. Of course, I was wrong.

I learned quickly that hormonal treatment should have been my first line all along, and I gained confidence that I was finally getting what was appropriate for my particular cancer.

Then I had my breakthrough.

A helpful online resource

I came across an online resource called HealthUnlocked. Before I engaged in the amazing patient forum itself, I saw mention of an upcoming NYC Metastatic Breast Cancer Conference sponsored by Komen of Greater NYC. The first day of the free online conference, which I attended, took place on October 23, 2020.

Why is the date so important to note here? Because I found out I had MBC on July 7th of that year… and it took THIS long for me to hear that some patients actually DO live past 5 years. That is almost four months of unnecessary turmoil for me. And few real answers.

I vividly remember the moment a doctor, presenting a case that he said was the most complex he had ever seen, said: “…and six years later.” I did an animated, Scooby-Doo head-swivel followed by a “HUH??” Wait! You mean someone lived more than 5 years?

I learned so much from that conference. And my obsession with research went into high gear. I realized that much of the information found online was not to be trusted as complete, accurate, and up-to-date.

MBC patient forums

Immediately following this conference, I jumped back on the HealthUnlocked website and visited the MBC patient forum for the first time. Right there, that very day, someone asked how long other people have lived with their diagnosis.

The responses made my jaw drop as I read: 3, 4, 6, 10, 15, and even 18.5 years. I experienced so many emotions at that moment—from joy and relief to anger that this was the first time I was hearing such information. Without any doubt, this forum was a turning point for me.

I had tried other patient resources, like a few different Facebook groups, but this source was right for me. It still is. It offers me the exact right mix of information, advice, and support—from other MBC patients.

On the day of my diagnosis, my nurse navigator told me about a friend of hers that is still living at 5 years, as if that was supposed to make me feel better. It took this nurse another 6 months to tell me that she has two friends with MBC, a lesbian couple, that throw a party each year to celebrate another year of life. They both just celebrated year 15. I told her that she should have led off with this.

But this was also the phone call where I discovered she never heard the term “de novo” before, an alarming thing to me at the time. Who am I kidding? It is alarming to me still, as I was not treated by any MBC specialists for my first 1.5 years. With that, for as sweet as this lady is, I realized that I had outgrown her.

After this, her obligatory, quarterly check-in emails got this kind of response from me: “Doing great and no, I don’t need anything. Thanks for asking.”

My quest for information continued. And I also recognized that I felt very alone in all this. Still.

Peers with MBC

One evening when I was feeling particularly vulnerable, I thought that maybe I needed to call a hotline or something. But I didn’t know who to call, since I didn’t need something like a crisis line or a suicide hotline. Jumping on the internet, I started looking at what might be available out there. That is when I found Living Beyond Breast Cancer (LBBC).

LBBC’s Breast Cancer Helpline matches you with a trained volunteer who will talk with you by phone. All volunteers are peers with MBC. There is a screening process with this matching, which means that you won’t talk to someone at that exact moment, but this experience changed so much for me. And I hope to become a volunteer in the near future so I can be this for someone else.

I was matched with Kelly Shanahan, a well-known patient advocate who I am now proud to call my friend. The coordinator knew the things that are/were important to me in terms of who I would be matched with, and Kelly certainly was an ideal person for me. I and Kelly chatted by phone sometime in late November of 2020.

It is because of Kelly that I found out that I should be treated by an MBC specialist. It never dawned on me to see what my first or second oncologists specialized in. They were both generalists. Kelly told me that she has a general oncologist AND an MBC expert on her team. This is what led to me seeking the Johns Hopkins consultation I refer to in one of my other articles. And, ultimately, it is what led me to move my cancer care to Hopkins… and to the oncologist of my dreams. Someone I truly DO trust with my life.

Learning from others

Kelly recommended certain Facebook groups that might be a good fit for me. She was spot-on. My earlier attempts at finding a Facebook group only left me feeling more depressed and fearful. In other words, MBC Facebook groups vary in terms of who is in them, the tone, and even things like whether there is a religious discussion or not. But one of the key things that Kelly said to me sticks with me today.

Beyond helping me with resources and telling me what to look out for, she didn’t steer clear of the longevity question. She volunteered it and told me that, given the factors involved with my particular cancer, I am more likely looking at 8-10 years ahead. Of course, that is based on where the science is TODAY.

For the next year, I read everything I could get my hands on, attended webinars, and engaged in patient forums. I tried video support groups but found that they aren’t really my bag unless there is an educational/informational component. But, importantly, I was starting to feel plugged in. And for where I am today, I finally feel that I have a good grasp on my particular cancer and even what other people are facing with different subtypes.

When I was finally able to move my cancer treatment to Johns Hopkins, I was so grateful that my preferred oncologist was able to accept me as a new patient. In my very first appointment with Dr. Stearns, I didn’t have to ask her about lifespan. SHE brought it up. And she told me we are likely looking at decades rather than years. Although, by THIS time, she was reinforcing what I had already learned from other patients.

Bottom line: I have learned a ton over the last (almost) two years. Yet, what I most desperately needed since my diagnosis? That came and continues to come from other MBC patients.