The Journey isn’t Over when Cancer’s Gone

Originally Posted to Facebook May 2015

I finally had my first post chemo appt. The first appt since surgery. I finally found out the results. There was no cancer to be found. Yay!

So now I have to decide what to do next. Typical course of treatment is to take a drug called tamoxifen for 5-10 years. This decreases the risk of recurrence or metastasis. But it can have some less than pleasant side effects, and some down right scary side effects. Thought the risk of getting the scary side effects is small, it’s still something to consider.

What could happen? Well, most commonly women experience hot flashes. Aches and pains, nausea are other common side effects. Less common, but still frequent, and more serious is depression. Less common, less frequent, more serious are DVTs, stroke, deadly stroke. Most rare, I believe, tamoxifen increases the risk of getting (endometrial) cancer. O.o And about as a common as DVTs and strokes (23 out of 1000 in my age group) are cataracts. Though more frequently there’s major vision disturbances – but those can be reversed. The pharmacist assured me cataracts are ‘reversible’ as well – with surgery. And endometrial cancer isn’t a big deal b/c it’s cured with surgery… She assured me there was nothing to be concerned about taking this medication. I said, But I am concerned. She said I shouldn’t be and it was for my own good to take it…


Those are some pretty big concerns to me, but instead of getting answers, I’ve had to turn to Dr. google. Dr. Google sucks.

So I sit here thinking I should go to bed, but I don’t. Because they want me to take that pill at bedtime. I’m not so sure I want to take it. When I first said I wasn’t going to take it my Dr said no problem, get a treadmill or something instead, eat organic, and take an aspirin. But then I asked about other medications – he said based on all the other things I’m doing to reduce my odds of recurrence or mets, tamoxifen is the best choice for me. But we didn’t talk odds.

I may have once said, don’t tell me the odds. But now I want to know. What’s the likelihood of recurrence or metastsis? What’s the likelihood of recurrence or mets with tamoxifen. Right now its a game of playing the odds. Which is more likely to happen and which is more likely to be serious.

I play various scenarios over in my mind and weigh the odds of certain things happening. I can reduce the likelihood of most of the side effects, but the vision concerns seem to be random and cumulative. I like my eyes thank you very much!

I also received the results of the genetic testing. No surprise. BRCA 1+ I’m not sure why anyone really thought otherwise. But it’s a funny thing. Even though I said, “Hey, I’m 34 and have breast cancer, and all these other women in my family are positive, and my mom’s had breast cancer 3 times, I’m going to assume I’m positive as well, and make my decisions based on that.” I was told I couldn’t do that and the medical community assumes I am negative until proven otherwise. O.o

So here I am. We already knew what I would do with the results, it was just a matter of getting the medical community to agree to ‘let’ me do it.

So now I find a gynaecologist and schedule another surgery.

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