Personally I like denial, because it's a pleasant and happy place to be. Life is nice here, like floating on the lake on a warm summer's day, leaning back to feel the hot sun on your face, dipping your fingertips in the cool water.
And then the heaven's open up with a crack of thunder and you're whirling around in a waterspout, hanging on for dear life.
Dammit.
I met with my medical oncologist today - not our usual nurse practitioner, and not the doctor we've seen in the past. This is a new doctor, and I'm not certain why I saw him instead of my usual doctor, but I think it has to do with the fact that he's the devil. Or, it's because he's very good at explaining statistics, and for that he's also the devil.
Which explains the waterspout of crap I heard in the office today.
He is glad to know that I'm feeling so much better since dropping Tami, "but let's talk about what that really means." Several points emerged during our (one-sided - HIS) conversation:
- Because of the chemo, my bloodwork shows that I am currently post-menopausal, which means my body is producing less estrogen than when I was pre- or peri-menopausal. "But your fat is still storing estrogen," he said. What I heard was, "Lose weight, lady!" Yeah, yeah...I'm working on it.
- My cancer is aggressive. He says that the small size of my tumor and my node-negative status are still in my favor, "but that Oncotype score (42) is really troubling. That test is very indicative of how your cancer behaves, and yours is aggressive." I'm such an overachiever.
- "Recurrence means metastatic disease, which is incurable," he says. "It's very rare to have another primary tumor, although it can happen." Yeah, it can, cuz I know people it's happened to. Thanks.
- Without the full benefit of chemo AND Tami, my recurrence rate changes from 28% (without any treatment) to about 23%. Unless I take the Tami OR another hormone therapy, my recurrence rate will not reach the 18% quoted on the Oncotype test.
- If I was triple negative (meaning ER-, PR- and HER2-), "we'd do chemo and radiation and send you on your way." No hormone treatment because it doesn't work when there are no hormone receptors in the cancer.
He spends the next several minutes quoting studies and statistics, down to the single percentage point of the benefits of each of the treatments. He explains why it's important for me to do at least two, if not 10 years of hormonal therapy. He talks about this as though it's a given, as though I don't understand the inherent risk of not doing it. And I'm mad not because he's wrong - but because he's right.
He explains that I can forgo Tami but really should try one of the aromatase inhibitors (Arimidex, Femara or Aromasin), which is given to post-menopausal cancer survivors (and sometimes to those with metastatic cancer). Of course unlike Tami - which is a bone-strengthener - the AI's will actually deplete my bones further. "So, for someone like yourself who is osteopenic, we would also put you on Fosomax or another bisphosphonate."
So I could take an AI AND a bisphosphonate. But wait...it gets better.
When I was first diagnosed with osteopenia our NP Dianne mentioned bisphosphonates are great at building bones, but come with a host of really nasty side effects, including jaw necrosis in a significant percentage of patients who use it. It also often causes severe joint pain.
As do the AI's. "But not as bad as Tamoxifen," says the doctor. "But given your history of side effects, you may have trouble with the AI's, too."
The additional benefit of AI's or Tami is the reduced recurrence for contralateral breast cancer (Ethel, not Lucy this time). For every year after my original diagnosis, my risk of contralateral BC rises 0.5%. "If you were 75 it might be different, but you've got 30 good years - that's a 15% increase - to think about."
"So," he says, "you have two choices. One is to keep believing what you believe and hope your cancer doesn't come back, or try an AI and see if you can tolerate it."
I just sit there and stare at him, but I don't think he was really paying attention. He writes me a prescription for Aromasin, and asks me to come back in three months. "Of course, if it's too hard you can always stop. But I'd really think about all we've talked about today. So call us if you decide to stop." He walks me to the front desk, and before I can say goodbye or thank you, he turns and walks away.
I'm not sure how I feel about all of this yet. Ken wasn't able to come with me today because he was out of town, so we need to talk about our options. But I can't help but feel that regardless of my choice, this whole stupid cancer thing isn't going to go away quietly or gently. I never wanted a 100% guarantee that the cancer wouldn't return - I know I'm never going to have that, no one does - but I wanted to believe that I had done all the hard work already (slash, poison and burn) and that hormonal therapy was an "added bonus" of benefit. Instead, what I heard this morning is it's just as important as everything else in keeping metastatic disease at bay. And so my denial comes full circle, as I realize that I want to make an informed decision, and I just got more information than I necessarily wanted to hear.
I'm taking my M&M's, my fat ass, and my raft and going back out to the Sea of Denial...at least until Ken comes home later.
Thoughts, anyone?
What a dilemma. I am on Tamoxifen being a peri-menopausal woman and whilst I do have side effects,in particular the sore joints every morning, I feel the risk is too great for me as a 43 yo mum to four children 8-17. I only started in Feb so have a long road to go. I have never wanted to hear the statistics and percentages. I have just wanted to do what it takes to improve my chances to be here for my kids. It' interesting to me that the 'face' of this months breast cancer awareness programme for New Zealand is someone who was prescribed Tamoxifen, and stopped taking it, and is now dealing with mets. No one knows if this would be case if she had continued with the Tamoxifen but that's a risk I'm not prepared to take. Good luck with your decision making, Cath
ReplyDeleteNancy, I've been reading and reading your message here and while I encourage you to get a second opinion, I would do everything possible to be sure this never comes back again. If it is aggressive, like the oncotype shows, it is too scary to take any chances at all. I would rather have joints ache when I wake up and still have the chance to wake up healthy. Heck, our joints are going to ache anyway when we get older! Let's just have the chance to get older. Take the tami if that's what the best recommendation ie. I'm so angry you are going through this shit. There are so many asshole hurtful people asking around in the world just fine and healthy, and this crap had to happen to a beautiful person like you. Sorry, that's how I feel and have felt since the first call from Ken. I love you and want you to be here for you and your family. My honest thoughts. Xoxoxo
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