And We Close The Chapter on Tamoxifen…Farewell

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I know I’ve devoted a great deal of time and space these past few weeks to the agonizing decision of whether or not to take the hormone blocker Tamoxifen as the final piece of my breast cancer treatment. Frankly, I’m as tired of thinking about it as you are of reading it, so you’ll be glad to know that something happened yesterday that allowed me to put the subject to rest.

I was sitting at my kitchen table, browsing through some blog posts and dreading my afternoon oncology appointment with every bone in my body. I had already postponed the appointment for 2 weeks because I was not looking forward to being scolded about the Tamoxifen…again. Now, scold is a harsh word when it comes to my doctor. He is about as threatening as a teddy bear wrapped in velvet sitting on clouds.

No, I think I was really dreading….the look. You know the one. Like your favorite grandparent who catches you doing something wrong and doesn’t spank you. That would be too easy. Instead, they sit you down, their head hanging with the weight of their disappointment, and tell you that they never would have expected this of you…and it hurts them that you would do such a thing. By the end of the lecture, you feel like the lowest of the low, and you’ll do anything to get back in their good graces.

That’s how I felt after our last appointment. I came in ready to fight, ready to bring in research and statistics to back my argument. And I left in a haze of confusion and shame. I even went to the drugstore and filled the prescription. I couldn’t bear to let Dr. A down. He cares so much; it’s palpable.

So, back to yesterday. I hopped over to one of my absolute favorite blogs, chrisbeatcancer.com. He was diagnosed at 26 with Stage 3 colon cancer and refused chemo and radiation, choosing to heal himself through nutrition. He is now an eleven year survivor who lectures around the country and offers much of his wisdom for free on his site. I’ve visited many times before, but this video struck a chord in me for some reason.

I’ve been somewhat beaten down by the medical establishment over the past year, and I’ve started to compromise my core beliefs. Namely, The belief that our bodies are designed to express health, not sickness. Yes, there are genetic aberrations, environmental insults, etc. that challenge us, but this is not destiny. We can radically transform the terrain inside the body by the way we treat ourselves. Proper nutrition, sleep, stress management, and healthy relationships are essential to disease prevention.

Chris is a very articulate, warm person who expresses these ideals perfectly. I am in no way against doctors or medicine when it is necessary, but the whole “fear culture” surrounding cancer puts so much pressure on patients to “go with the flow” or face dire consequences. Take Tamoxifen, for example. In my case, the statistics show that I have a 12% reduction in recurrence over the next 10 years if I take the drug. The mortality reduction is about half that.

For these slight statistical improvements, I will endure hot flashes, night sweats, depression, fatigue, joint pains, weight gain, and the possibility of aggressive uterine cancer, blood clots, and cataracts, or worse. There are very, very few people who have pleasant tales to share about this drug. And the kicker is.. the research will show that Tamoxifen is not curing cancer, but rather putting it to sleep. And it almost always finds a way to get around this “trance” eventually.

So..yesterday I had what could almost be described as a revelation. I found my convictions once again and decided that my body is not suffering from a Tamoxifen deficiency. I plan to do a hard core re-examination of my life and change the things that need changing. I went in to the doctor’s office, ready to defend my decision once again. Dr. A must have seen the look of determination in my eyes. He asked if I was taking the Tamoxifen. When I explained why I wasn’t, he simply looked at me and said, “Ok.”

I think that in a way he knows he is asking a lot of women, but he feels that it is his duty to try. I wouldn’t be surprised if he even has a sliver of doubt about the standard treatment in his most private moments. As for me, the Tamoxifen train has left the station, and I’m at peace as I wave goodbye.

 

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The Doctor Said “Eek!”

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I had my 3 month check-up with the oncologist this week. I’ve been dreading this appointment like a case of shingles for weeks. Why? Let’s see. Not only did I not start my Tamoxifen like a good girl in January, but I have been doing the polar opposite of what was recommended. I moved the appointment back 3 weeks to stall, in the guise of waiting for my BRCA genetic testing results (negative) to come back, but the truth is I would have told him anything to delay the inevitable. “I can’t come in right now because I’m recovering from ebola”, etc.

So, my oncologist has been in sweet denial for the past 3 months, thinking that I’m a compliant patient, resting comfortably at night with the knowledge that he is in charge. Let’s just say I burst that bubble with a pitchfork on Wednesday.

He walked in the room after knocking gently. He greeted me warmly and asked how I’d been. “Fine, really well”, I offered, almost sheepishly. I thought that maybe my fears had been unfounded, maybe he was just going to check in and leave it at that, assuming everything was going as planned. It wasn’t to be.

“Are you on Tamoxifen?” he asked as he sat down and flipped open my chart.

“Oh, crap, here we go!” I thought, the red heat of shame traveling steadily up my chest to my neck.

“No…I…decided not to take it.” There, it was out.

He looked at me for a minute, not quite sure how to respond. “What happened?”

“Well, I’ve done a ton of research and reading about it, and I don’t see anything good. I know four people who’ve had to quit taking it because they felt that they would rather live 2 years happy than live with the side effects.” I was scanning his face for a reaction.

“I see. So, did you even try it?”

I felt at this point that I had to offer up something to make my case seem stronger and more logical, so I began to spill the beans.

“Ok, Dr. A, I like you a lot and I respect you as a person, so I’m going to tell you something, but I’ll spare you all the details because I don’t want you to have a stroke.” His eyes widened and he sat back in his chair. “I’ve been seeing that integrative MD that I told you about.” He nodded. “We’ve been doing a little experimenting.” Deep breath. “He put me on some bioidentical testosterone and gave me Arimidex to keep it from turning to estrogen in my body. After 5 days on the Arimidex, I was in such a pit of depression that I stopped taking it. Now, that pretty much tells me how the lack of estrogen is going to affect me, no matter what drug we use.”

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Dr. A sat up straighter and looked in my eyes. “Eek!” I thought that probably wasn’t because he saw a mouse out of the corner of his eye. “First of all, I had no intention of putting you on Arimidex because that is for post-menopausal women. There is no guarantee at this point that you’ll stay that way. I’ve seen women older than you resume their cycles after chemo. We just don’t know how the aromatase inhibitors effect pre-menopausal ovaries.”

He went on. “So I don’t know why he would put you on Arimidex; well, I understand it biochemically, but it’s not the path I think is best for you. Second, I would feel a lot better about your decision if you had tried the Tamoxifen and told me that you hate it and absolutely can’t take it. Try it for 10 days or 2 weeks. But don’t assume that you know how it will affect you. If you tell me you absolutely won’t take it, then we’ll figure it out and monitor you more closely, but give it a shot.”

Uggghhh! Dammit, why does he have to always pull out the logic? I tried another tactic. “The side effects aren’t my only worry here. I honestly don’t think long-term estrogen deprivation is healthy. I think everyone forgets that estrogen does some good things, like protect your bones and keep your brain functioning, not to mention allow you to have sex without pain.”

I could see that he understood my dilemma and really did sympathize. He almost teared up as he said something about his mom having osteoporosis and how he worried about her falling. But, no dice. “I agree. And if you didn’t have this”, he pointed to my chart, “we’d be in a totally different discussion. But we have to weigh the risks in your case.” He got really quiet for a minute and I could see him trying to find a way to frame his next sentence delicately. “I don’t want to sound crude”, he went on, “but the long-term side effects of estrogen deprivation will be kind of a moot point if this comes back, and I feel like the window of opportunity for the Tamoxifen to work is closing.”

Ouch! After an hour of gentle prodding, he finally wore me down. “Ok, Dr. A. I’ll try it just because I like you.”

“Don’t do it for me. Do it for you. I’m your advocate here, and I want you to live a long time.”

So, here I am again, doubting my choices and in turmoil. Now tell me how good that is for healing. I almost want to fill the prescription so I won’t disappoint the doctor, with his big pleading puppy dog eyes. I have an appointment, meanwhile, with the hormone doctor next week, and boy do we have a lot to discuss! I think my bottom line for him is “If this were your wife, would you feel comfortable making these same recommendations?” Waivers and consent forms aside.

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But, I have made one decision. I am absolutely madly and deeply in love with my oncologist. I have never met a man with his combination of intelligence, honesty, and compassion. And I have never met a doctor who wears his heart on his sleeve. I’ve decided that we’ll leave our respective spouses and make a new life together once the boobs are complete. They’ll just have to understand that fate has stepped in. Phew! At least I’m sure about something:)