On Being a Rebel and Going Against Medical Advice

It was time to visit the breast surgeon again. It's been almost two years since I was first diagnosed with invasive ductal carcinoma with metastasis to the lymph glands, and the routine visits to my medical professionals have stretched into every six months instead of every three. 

I was hesitant about going to see her, even though I didn’t really know why. I loved my breast surgeon. She’s an awesome lady. She’s young and vibrant, full of life — and still, there was a bit of trepidation in my heart. A parking space near the door was open and waiting. I slid the car in carefully and parked. Traffic had been heavy and I had only a few minutes to spare before time for me to check in for my appointment. I hurried up the path to the medical building and grabbed the first elevator up to the second floor. When I walked inside the office, three women turned to look at me. As always, their gaze went straight to my chest. I don’t know why but every time I’ve ever been to this office the same thing has happened. Perhaps it’s because the women there are just before having their own breasts removed or perhaps they already have had them taken. I guess it was just natural for them to look me over and see where I was in the process. I smiled and walked toward the check-in desk. After signing in, I took a seat and pulled out my phone. I knew it would be a few minutes before being called back and wanted to check my emails. But then I was surprised to have the nurse call me back so quickly. We went to the room at the end of the hall. She took my blood pressure and asked a series of questions. After she completed her bit, she asked me to remove the clothing from the upper half of my body and put on the robe provided. I complied and took a seat on the exam table. I waited for what seemed like forever for the doctor to come to my room.

After about forty minutes, I heard a small tap at the door and heard her enter. “Hello, sunshine!” she exclaimed, “How are you doing today?”

We went back and forth with pleasantries and then she unfastened my robe. Her cold fingers began probing my chest and armpits. She noticed a small rash on the right side under my surgical scar.

“When did that pop up?” she said. I explained I’d noticed it a few days earlier. She looked at it carefully and said, “Well, it’s not cancer!”

I was glad to hear it and asked what she thought it could be. She told me it looked like eczema and said the cold, dry weather was more than likely the culprit. She told me to begin applying Neosporin or petroleum jelly to it to keep it hydrated and allow it to heal. As she was finishing up, she asked how I was doing on the medication. Oh no … here it comes, I thought to myself. I told her I stopped taking the Aromasin (exemestane) about two and a half weeks ago.

Immediately, she turned to me and got close to my face and said, “Why?” I explained all the side effects I’d had and how terrible I’d felt and told her that I just decided it wasn’t for me. She got very quiet and then said in a matter-of-fact way, “I don’t like it. I don’t like it one little bit.”I could tell by her tone that she really was upset and didn’t understand how I could stop taking the medication. She leaned in toward me and said, “You know your cancer was very aggressive and with it being fed by estrogen and progesterone, it could come back at any time. We really need to make sure that doesn’t happen. I really think you should take the medication.”I didn’t say anything. I just sat and listened. I think she could tell I felt intimidated so she shifted the conversation. After a few more pleasantries, she left the room with the instruction for me to return in another six months. On my way out of her office, I could feel my blood pressure rising. I was so upset. Why did I feel like I had to defend myself for my decision to stop taking the anti-hormone therapy? I’d already tried two others before this one and all three of them had given me extreme side effects. I replayed the conversation I had with the doctor in my mind. The part that really bugged me was when I was explaining to her about the various side effects and she piped in saying, “We have medications we can give to counteract the nausea or the mood swings.”

It didn’t make sense to me to take one medication to try and keep cancer at bay and then have to take two or three more to counter the side effects of the first medication. I felt like I was at war with my medical professionals over the choices I was making pertaining to my health and that really upset me.

In the car, as I backed out of the parking lot, I began to cry. I don’t know why, I just started to bawl. I wanted to hit something and scream, “Don’t you understand?! How would you feel if the shoe was on the other foot and this was you, instead of me? Wouldn’t you do the same thing? Wouldn’t you want to have a good quality of life? Would you really take medication if you knew all the side effects?”

All the way home, I struggled wondering if I was doing the right thing and making the right decisions. Maybe I hadn’t given the medications enough time to really see how they’d work long term … maybe I was making a mistake. I started to doubt myself.

When I got home, I talked it over with my husband. He assured me I made the right choice and reminded me of what had happened during the time I was on the last medication and how I felt. As he talked, I thought back to the weeks before when the Aromasin was coursing through my body. I remembered well the feeling of being unable to move across the floor without pain. I remembered the extreme nausea and fatigue, the inability to sleep, the massive mood swings. I had not felt like myself at all during that time. I knew in my heart I couldn't take that medication because of what it did to me, but I kept hearing the doctor’s voice in the back of my head telling me I needed to be on the medication. I started to think. Why do oncologists push aromatase inhibitors so? We patients just do as we’re told most of the time … that is, until we’ve had enough and start to do our own research.

Immediately after my double mastectomy, I began to do a lot of research. I wanted to be informed and knew it was up to me to find out all I could about the type of cancer I had and the types of treatment available. I wasn't surprised to find that after care usually included chemotherapy, radiation and anti-hormone therapy. I knew I'd have to be my own best advocate, so on my next visit to see my oncologist, I went in with a head full of knowledge. I did trust my doctor, but I wanted to be a partner in my long term health care. To do that, I knew I had to read medical journals and learn things I had no idea I'd ever need to know. I made sure to read everything available on aromatase inhibitors, their side effects and their usage. From what I read, I knew this type of treatment was not for me. My oncologist looked at me like I had three heads when I told him of my decision not to take the Aromasin, but he also said he respected my right to choose. He said he'd have to notate in my chart that I'd decided to go AMA (against medical advice). I was OK with that. 

My decision not to take the medication was a hard one, mainly because I want to live and live as long as possible. But is it wrong to consider options other than the standardized medical treatments? Should I be made to feel guilty for shunning chemicals and opting for more natural remedies?

As a breast cancer survivor, it's up to me to decide what's best for my body. I'm the one who deals with side effects from medication, not my doctor. I'm the one who knows what I can and can't handle.  The oncologist’s office called today to offer me another choice drug. It seems they think my decision to stop taking the Aromasin required a replacement drug. I turned them down. I'm going against medical advice again and I know they consider me to be a rebel. I'm sure they don't understand my decision but hopefully they'll respect it. 

As survivors, we have a right to choose. Yes, we want to respect our doctors and follow their recommendations for our health as closely as we can but it's also important for them to understand that ultimately, the decision is ours. Be informed! Do your research. If you don't feel a treatment option is right for you, talk to your doctor about it and hopefully, you'll have a doctor who's willing to listen to what you have to say.