It's amazing how childhood tendencies toward performance-based acceptance carry over into adulthood. As the firstborn, I was raised to be the "good girl." For the most part, I did what I was told, when I was told. I obeyed the rules. I met expectations. I learned to please people and in so doing, I learned to push my wants aside. The waters were always smoother when the boat wasn't rocked, and I liked smooth sailing ... but smooth sailing is for dreamers. The reality is that the water isn't smooth for long.
When it comes to doctors, I'm a really good girl. I trust them. I listen to them. I think they know a lot more than I do because they've gone to medical school. They've done hours and hours of residencies and internships. They are the experts. I am not. So when I was recently told by a new oncologist he wanted me to begin taking Aromasin (exemestane), I didn't question him. I listened as he told me it would keep my chances of a recurrence low. Surely he knew what he was talking about. He must have done research on the medication. He must have read my file and determined this would be a good option for me — or maybe not.
Good girls don't voice their opinions. They are compliant. The obey orders. I was a good girl. When I left his office, I was not feeling like a good girl. I was upset. I was angry. I wasn't necessarily angry at the doctor, I was angry at myself. I had wanted to speak up. I had wanted to tell the doctor I didn't want to take the medication, but he had breezed in and breezed out in under five minutes. I wasn't happy but I walked out of his office without saying a word. I was a good girl.
On my way home, I struggled. Feelings of unfairness swirled around in the pit of my stomach. I felt like I was going to be sick. Why was I such a good girl? Why couldn't I speak up? In the seat next to me lay the printed prescription. I wanted to roll down the window and let it accidentally slip away.
I'd read about Aromasin while doing research on anti-hormone therapy. There were three aromtase inhibitors doctors usually recommended for women who were post menopausal: Arimidex (anastrozole), Aromasin and Femara (letrozol). All of these drugs acted in a similar manner although the side effects varied. I had already tried Arimidex and had to stop it because of the debilitating side effects. I was afraid of trying another drug in this category, but I would be compliant. The doctor knew best.Reluctantly, I took the prescription, went to the drugstore and got it filled. At home, I opened the bottle and looked at the 30 tiny, white pills inside. I wondered how something so small could be so powerful. Placing the cap back on the bottle, I sat it on the counter. I didn't want to take the medicine just yet, though I knew I would eventually. I was a good girl.
The medication sat on my counter for several days. Every time I passed the bottle, I could hear a voice inside my head saying "Be a good girl ... take the Aromasin." There was a war going on inside my head: Part of me knew I needed to be good and take the medicine. The other part of me wanted to throw the pills away and forget about them. I let the war wage on for four days and then, I gave into "good girl syndrome." On January 1, I opened the bottle and popped one of the tiny pills into my mouth. Yes, I was a good girl. I'd followed doctor's orders.
It was important to me to keep a log of how I felt on the medication, so I began a journal. Days 1-4 were great, I experienced no side effects at all. I was pleased and thankful I'd been willing to follow through and give this medicine a try. I couldn't help but think that this pill would be magic. Maybe this will be the pill I've been waiting for all along ... but that was before the medication had a chance to build up in my system. That was before the side effects began.
I continued keeping my records and on day 5, I began to get some really weird headaches just to the back of my left eye. They didn't feel anything like a regular headache. They didn't feel like a sinus pressure headache. The headaches felt much more complicated, deeper and more severe. I was concerned, but I tolerated them. If I was going to experience any side effects at all, I'd rather deal with bad headaches than some of the others maladies. The headaches continued. On day 7, I started getting depressed. Headaches and depression are not a good combination. I'm not a person who gets down in the dumps; I'm usually very upbeat and happy — more Pollyanna than anyone I know. But this tiny little pill really packed a punch. It was strong medicine and it was doing a number on me. I didn't feel so good any more. In fact, I was feeling pretty bad.
Day 8 brought a huge shock. On the shower floor, there was a lot of hair. At first I thought it was a combination of both mine and my husband's hair. I cleaned it out and the next day noticed even more hair. My husband commented on the amount of hair he was seeing. He asked me what was happening. I told him one of the side effects of Aromasin is hair loss. He was concerned and so was I. Over the next few days, I noted more and more hair. This was not good. There was hair in the bathroom sink, hair on the floor, hair in the shower, hair everywhere. As I looked in the mirror, it wasn't immediately apparent that my hair was falling out, but as I brushed through it, I could tell my hair was much thinner than usual.
Days 9-14, the side effects got worse. I didn't feel like myself. I was continuing to have the horrible headaches. I was sad. I was depressed. My hair was falling out and now, I had no appetite. The lack of an appetite could have been a good thing for weight loss and believe me, I did lose weight: 11 pounds to be exact. I just didn't think I could continue with all of the side effects compounding. My husband and I talked about it and we both felt it would be best for me to come off the medication. The scale of quality of life vs. quantity of life stood before us.
While there is always a chance of recurrence, we weighed the options. We had to ask ourselves some hard questions. Is it better to take this medication for the next five years and have a terrible quality of life and still have the possibility of recurrence? Is it better not to take the medication, rely on our faith in God for complete remission and feel good? We both chose the latter option.Each breast cancer patient and survivor has to decide what is best for her (or his) own health. There are so many factors to consider and they are very personal to each individual.
My decision to stop taking the Aromasin may or may not be the right one, but I've prayed about it and I have peace. Although I am a good girl and I wanted to do what the doctor recommended, it just didn't work for me, but I did try. I know my God is able to protect me from future recurrence and I trust Him more than any medication that any doctor could offer. Being compliant doesn't mean following blindly after what a doctor recommends. All patients need to be well informed and do research on the possibility of side effects, etc.
If the Aromasin hadn't caused me any physical side effects, I may have continued it, but experiencing a continuing increase in symptoms, I felt it was not worth the risk to continue on with it. Another side effect Aromasin produces is the possibility of severe bone thinning and bone fractures. I did not want to take that risk and who knows when I might have begun to deal with that.
So, I'll return to my natural health care regimen because it's worked well for me so far. Every day I take vitamin D2, magnesium, potassium, green tea, turmeric, chlorophyll, ashwagandha and vitamin B12. I also stay away from processed foods and eat a more vegan diet. I will continue doing research for more ways to combat cancer naturally. Apple cider vinegar is a great way to put my body into a more alkaline state and cancer hates living in an alkaline environment.
I'm happy with my decision. I expect to get flack from my oncologist when I tell him I've decided not to continue on this medication. I understand they have a protocol they recommend to patients for each stage of cancer treatment and he's just doing his job.
This good girl has finally decided it's OK to stand up and fight for her rights. It's my body and I have to do what's best for me. I feel really good about my decision and look forward to getting this nasty medication out of my body over the next couple of weeks. I can't wait to return to normal and to start feeling better again.
I'm sure there will be many of my friends and family who won't agree with my decision to disregard the doctor's orders. There may be some who feel it would be more beneficial for me to take one tiny pill a day rather than the large quantities of natural supplements I take instead. While I value their opinion, I must choose what's best for me. I don't have a death wish. I don't ever want to experience a recurrence, but none of us are guaranteed tomorrow. So I'll take each day as it comes and be thankful for those I'm given. And really, that's all any of us can do.
I had stage 1 ER positive breast cancer 9 years ago. Nothing in the nodes. Lumpectomy & radiation & I took Tamoxifen for 5 years; and really my odds of having a recurrence were very low. Fast forward to November 2015- I now have had a recurrence. It has spread to one lung, my liver, and throughout my bones. Nothing in my breasts- clean bill of health there. It is a sneaky disease- even my oncologist said it wasn't supposed to do this.
I am now taking Letrozole along with a newer drug Ibrance. I am happy to say my tumor markers have shrunk from 143 to 44. Yes, my hair is thinning. Yes my body aches...but yes, it gives me more time. I never in a million years expected to have a recurrence, but there you are. I am hanging on in hopes of more time, maybe more new treatments. I personally would recommend taking the drugs, if you can tolerate the side effects. I'm fortunate not to get the headaches that the author of this article was suffering through though.
Everyone has different results & side effects with medication- but for me, this is much better than some of the harsh chemotherapy treatments out there. Not everyone can tolerate some drugs though. For me, the side effects are worth more time. I want to meet my future grandchildren, and hope so much for that opportunity.
Bonnie, I respect your decision to stop the aromatase inhibitors. Your decision required great strength and faith. I was diagnosed with Stage II BC, 3 + lymph nodes. After the bilateral mastectomy, other surgeries, chemo, herceptin, and infections, I've been taking letrozole since February or March 2013. I don't know when I started exactly, because like you, I didn't want to take it. I left it on the kitchen counter for several days before starting it. My oncologist warned me that about 2 months into it I'd feel like I had a severe case of the flu, and she was right. While the severe flu symptoms passed, the other side effects are debilitating. I'm sticking with the letrozole (I tried another one at one point, but no change in side effects), but it has cost me my career and a good quality of life. This little pill, the size of a baby aspirin, packs quite a wallop. Is it worth it? I don't know. As Susie noted, she took Tamoxifen for five years and still had a recurrence, even though she initially had Stage I.
We have to make the decision to take the meds for ourselves. You have made a rational decision that takes into account your side effects, prognosis and, most importantly, your faith. I support you!
I had a bilateral mastectomy in February 2016 - stage 1, no lymph node involvement, Oncotype score was 12. The oncologist pushed very hard for me to start Arimidex but I refused because of the many severe possible side effects. Since I already have a lot of problems with osteoarthritis it didn't seem like a good way to go. For me, I'd rather have 5 good years than 10 crummy ones. I did have to assert myself with the oncologist but it's my life, not hers. Will I feel different 10 years from now if it returns? Hard to say - but I've got to go with my gut. Thank you for sharing your story because it's been hard to find discussions about this on the web.
I was first taking Anastrozole, which was horrible with pain in my hips, shoulders, lower back, feet and hands. I felt like I was 80 years old instead of 63. I'd been a personal trainer and taught Spinning classes for 21 years and I was unable to continue. This all came after a stage 2, Invasive cancer with extensive DCIS in my left breast. 100% estrogen/progesterone positive, no lymph node involvement, Oncotype score of 13. I'd had a double mastectomy and 36 radiation treatments, and like the OP, was obedient and started taking the Anastrozole as prescribed. After taking it for over a year and dealing with the increasing side effects I was put on Tamoxefin which turned out to be even worse with immediate hair loss, a weight gain of 5lbs in less than 2 weeks (My weight had stayed steady for the prior 10 years) and depression. So....a month ago I just quit.
I finally called my oncologist to let her know about this and now have an appointment to see her on Friday. It'll be interesting to hear what she says.
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