Well that was weird.
With one exception, everything I thought would take place at the new oncologist’s office, didn’t.
In my last post I mentioned going to a new Denver oncologist (onco) for my annual followup. Since finishing treatment and five years of tamoxifen, I’ve been monitored with:
- Annual digital mammograms (despite implants, my previous surgeon felt that it would capture microcalcifications in any trace tissue, since technically, it’s impossible to remove every last trace)
- Manual exams
- Tumor marker blood test
- Vitamin D levels (associated with cancer risk)
- Some sort of discussion about whether or not I’m peri-menopausal (“Are the heat waves I still get two years after finishing tamoxifen a sign? If so, when for the love of God will they stop?”)
I figured we’d knock out each item plus the following:
- Discuss whether I should take tamoxifen for another five years (studies have shown it to be beneficial for women who had early-state ER/PR positive cancer, like what I had).
- Whether to bump up my colonoscopy date, in light of my mom’s colon cancer.
As I sat in the exam room, waiting for the the onco, running through my questions, I noticed the magazine rack on the wall and the issue of Hunt Alaska. “Prepare for Bear – 10-footers don’t come easy,” was the cover story, with a photo of an attractive woman and giant dead bear head. The way the woman cocked her head and smiled for the shot reminded me of a flight attendant in one of those safety videos they play before take-off. Only, instead of the nearest exit, she was pointing out her 10-foot kill.
Time, Real Simple, Parenting in a breast-cancery exam room? Sure. A hunting magazine? That was new. I strained to find the correlation with a revised headline:
Wildlife or wild tumor, oncologist/hunter Kimbo was born to kill.
Cancer activist takes down bear in revenge killing. Cancer could give a shit.
And you thought killing cancer was hard?
The knock came at the door. She was younger than me and on top of the onco game. We dug right in to my file:
- She wasn’t sure why I had been having digital mammograms—there’s no tissue, manual is preferred after bilateral mastectomy with implants. It’s what the guidelines say.
- Tumor marker blood tests are not effective. Doesn’t recommend.
- Another five years of tamoxifen was a toss-up. I was a low risk for recurrence. While I was 39 when diagnosed, the tumor was on the smaller side and we hit it hard with chemo. A percentage point or two against risk vs. quality of life (i.e., five more years of hot flashes) was up to me.
- Vitamin D is essential. (I was later tested, on the lower side like most people, and now take supplements).
- I’m probaby peri-menopausal, chemo can do that. Everyone’s different. Non-issue.
- Bumping up a colonoscopy isn’t necessary since my last one was clean.
- She performed a manual exam and found nothing of concern.
But are you sure? I wanted to ask. No more mammos, tamoxifen or blood tests? How are we minding the fort?
“Of course, if you feel something unusual or have a new symptom, we will explore it…”
She was basically telling me I was fine. More than fine actually. It was good news—happy-happy-joy-joy news. I could live carefree.
That bear on Hunt Alaska magazine lived carefree, I thought. Look what happened to him.
I emailed my former onco not knowing if he would or could weigh in. But he’s good like that.
- He agreed with no more tumor marker blood tests as there are too many false positives and false negatives.
- He thought extending tamoxifen was not very useful for me either, possible complications outweighed the benefit.
When it came to discontinuing mammograms, he had a question:
“I can’t remember your breasts (you probably have never heard that from a man before.) Did you have reconstruction, implant, or what?”
After I cleaned the tea I spit out off my keyboard, I reminded him of the reconstruction with implants. He replied quickly. While there were differing views on imaging after mastectomy, he agreed with my new onco—a physical exam is sufficient for picking up an “(unlikely)” new lesion in any remaining breast tissue.
The oncos were in accordance.
I was first offered tamoxifen by a breast surgeon in Seattle, after a benign scare in 2003.
“We discussed other options too, like having the left breast removed (too radical) and taking the estrogen-blocking drug tamoxifen to prevent cancer, the side effects of which would induce a menopausal state. No thanks, I said to both, I’m only thirty-six.” —Excerpt from I don’t wanna be pink
We’ll never know if taking tamoxifen in 2003 would have changed anything in 2006. It doesn’t really matter anyway. And here I was being offered it a third time, but the heat waves and flashes aren’t worth it. One five-year stint was enough. There’s still that little what-if, that percentage point or two, but I’m going to work on letting that worry go. I have gotten used to being monitored a certain way all these years, it’s time to get used to being well.
Are you years out from an illness? How have your follow ups changed? Chime on in!