On Being a Rebel and Going Against Medical Advice

Started by bonnie-annis, February 19, 2016
7 replies for this topic
bonnie-annis

Member
558 Posts
Posted on
February 19, 2016
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. 
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Suz54

Member
0 Replies
Posted on
February 19, 2016
Hi fellow survivor! I was also given a hormone therapy/ aromatase inhibitor called Letrozole. I am to take this for 5 years as my breast cancer is aggressive. I had body aches, hot flashes, mood swings, etc. that lasted for 3 or 4 months. I wanted to quit taking it but more than anything, i want to keep my. Ancer at bay. My body is now adjusted to the hormone therapy and the side effects are gone. I am now enrolled in Zumba class, do a lot of walking and having a good quality of life. I am sharing this with you because you might re consider. You seem to have a caring doctor who is concerned about your best interest. All health challenges have difficulties, my friend, but they do end. A recurrence is very scary.....but of course... You have the right to decide how you deal with the enemy, breast cancer. God bless and wishing you the best!
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Janet

Member
0 Replies
Posted on
February 20, 2016
THANK YOU BONNIE! Yesterday was 14 years since I found "the lump, followed by mastectomy, chemo, radiation. 2005 5 tumors were on my spine, 2 on my hip, Aradia IV plus Radiation. 2011 it was back in my bone and January, 2012 it was senn in bones and lungs. After 4 years in various treatment of chemoes, the last 14 months on Afinitor, but I need someone to reevaluate just what my situation is.This living with "Chronic Cancer" sounds much like your situation. While the drugs have helped slow the cancers, the side effects are doing damage, especially neuropathy. From the start I have made it clear that i want to know as much as possible about where the caner is, what I can expect, being included in THE TEAM. If anything I am excluded, side effects ignored, etc. While I hear medical people talk Quality of Life, it has been few who seem to have any clue what this is like, outside of the clinic. 15 min visits don't do it. So once again I am looking for an Oncologist that might work WITH me. I hear this is not uncommon. The best person has been the Palliative Care Doctor, who listenes, talks WITH me, helps me to understand, so I can make decisions. But she cannot do it all unless I am totally ready to stop all cancer treatment. Again Bonnie, Thank You for sharing. I don't know what will happen week to week, but am happy to have met so many wonderful people while I am on this journey. God Bless you all, Janet
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Mrs.

Member
0 Replies
Posted on
February 20, 2016
There are three types of Aromatase Inhibitors (drugs to stop the production of estrogen). I had a reaction to the first one with very bad body aches, and my oncologist simply switched to another, and I don't have any side effects. There is still a third in case I develop symptoms or become drug resistant to this one. Perhaps switching to another similar drug may help??? Try Googling Aromatase Inhibitors to become familiar with the names of the different types.
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Trillium

Member
0 Replies
Posted on
February 20, 2016
Bonnie, I absolutely agree with you! It is your body and only you know what you're experiencing; you should be the one to decide what you are willing to go through. I was fortunate to have an oncologist who would explain the treatment options and then really listen to what I had to say. I get angry when I hear someone say "my doctor says I have to (fill in the blank)." You don't have to experience any medical treatment if you don't want to. If you feel you need to rebel, then do it, but I would hope that those who make the rebellious choice are making an informed choice.
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Julie

Member
0 Replies
Posted on
February 21, 2016
I'm on the third of these drugs (anastrozole) after being totally miserable from the side effects of the previous two. I still hate this one: 4th year of hot flashes, 4th year of aches & pains, and especially 4th year of the drug killing a sex drive. Sorry if anyone is offended by that but it is true. I tried to get my onc to give me a 6 month break - the best I could negotiate was 2 months. I don't think 2 months was enough for my body to figure out a life drug-free but I was glad for the break. With all the talk of taking these for 10 years, like Bonnie, I'm going to rebel. One more year and I quit. I want quality of life back. Or at least a year to see what it is like.
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Sarah

Member
0 Replies
Posted on
February 22, 2016
Hi Bonnie, Thank you for sharing your very important experience with all of us. I agree with you completely....ultimately the decision of continuing or discontinuing treatment is up to the patient. Having a doctor who is willing to take the time to have a genuine and sometimes difficult conversation with a patient about this subject is a real gift. I am a survivor of Stage III, metastatic uterine cancer. I had the surgery but chose not to do the chemo/radiation after surgery. My prognosis was not good an I was told that because my cancer was metastic it was not curable. My oncologist became very upset with me, shaking his finger in my face and said to me emphatically "if you do not do this chemo/radiation this will come back." I started to try and explain to him that quality of life was more important to me than quanity. He just cut me off and said "my job is to tell you what to do to try and extend your life." He then got up and walked out of the room. Needless to say, I found another oncologist. She sat and listened to everything I had to say.....she also felt that I should do the additional treatment but kindly suggested that she give me a week to think about it. When she called me I said that I still wanted to decline the additional treatment. I know that she was disappointed in my decision but she never showed that and respected my decision and we moved forward....never discussing it again at any of my 3 month follow up visits. I have now been 5 1/2 years cancer free, without a recurrence. I realize that this cancer may still comeback but if it does I have had 5 1/2 years of no side effects, complications, etc. So it was a good trade-off for me, personally. And my wonderful oncologist has said to me "I think you beat this thing!" I admire your courage to stand up and do what you know is best for you.
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suebee9

Member
0 Replies
Posted on
February 23, 2016
Congratulations on taking care of yourself! Especially now that oncologists are pushing anti-estrogen therapy for 10 years periods. That is too long to be miserable. I talked with a woman today who looked more alive than when I last saw her 6 months ago. She had had a heart attack without a major blockage to her arteries, probably due to increased coagulation on her AI. She told her oncologist she wanted to stop it, and in this case he agreed. Why can't they see the need when mood, memory and musculoskeletal systems are so disabling? I don't know. Tamoxifen and AI are not 100% answers to the possiblility of recurrence. Sleeplessness, depression probably counter any benefit. Be healthy, be happy, keep your mind clear and your heart humming! Sue
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