Big week here, folks! I'm making the transition from primary treatment modalities to...what do I call this next phase, anyway? Maintenance? Watch and wait? LIFE??!! I still have reconstruction ahead of me, but that doesn't feel like treatment, at least not anymore.
I have 4 quick zaps left at radiation. I met with Dr. Papagikos this morning and he's really happy with my progress. Comparatively, I only have moderate skin changes (burning and discoloration). I'll have to meet with him in 3 months for a follow-up and then again in a year. After that, he predicts he'll be able to "drop off" my team, and then I'd only need to see him beyond that if there was some form or recurrence or second cancer. I needed to talk with him about what to look for in the future. I don't want to sit around worrying and waiting for cancer to rear its head again, freaking out over every little thing that goes wrong with my body (ex: my nose is runny = I need a Brain CT), but I also don't want to ignore or overlook something that indicates a problem. He gave me a list of things to look for: skin changes, discoloration, swelling, tenderness, and pea or marble sized growths beneath the skin. Easy enough to watch for. He said that my skin will feel/look its worst next week because the skin burns lag behind the treatment by about a week. After that, he said to expect a significant improvement in 7-10 days, and about 70% improvement by the 3 month mark. A year from now, we should have to strain to notice the changes/discoloration to my skin. He also said most of the "tired" feeling would pass in about a month.
Today, we met with Dr. Kotz to talk about Tamoxifen. I went in to that appointment with a list of really great questions (many thanks to the Stupid Dumb Breast Cancer Community on Facebook for their help compiling the list) and a lot of hesitation about taking this drug. All I hear and read is about negative side effects, like joint pain, weight gain, dizziness, exhaustion, eye pain, nausea, vision changes, mood swings/changes, sexual dysfunction (yeah...that's fair!), liver damage, ovarian and uterine cancer (at least I'm no longer on the line for those), heart damage, OMG this list goes on and on and on..... My mindset going in was that I should be a candidate for Femara, which seemingly has fewer side effects and better outcomes.
Let me attempt to boil down my research a bit here so you can better understand where I'm coming from. The two drugs are in different classes. Tamoxifen is prescribed for pre-menopausal women to block breast cells from absorbing estrogen. It is a targeted therapy. Currently, oncologists are prescribing it for a course of 10 years (an extension from the former 5 year norm). Femara (and other Aromatase Inhibitors) is prescribed for post-menopausal women. AI's can't help to shut down estrogen production in the ovaries the way that Tamoxifen can, which is why they are the norm for post-menopausal patients. Studies have shown that Femara has better outcomes in terms of survival, even in some pre-menopausal women (those with high levels of Ki-67 protein, referred to as Luminal B, for those of you that like the real technical data). Here's a downside, one that Dr. Kotz held onto throughout our conversation: AI's have a negative impact on bone health. Tamoxifen doesn't. In fact, Tamoxifen actually works with bone cells to improve bone density.
Now, I'm considered a surgically-induced-post-menopausal woman (because of my recent hysterectomy). I'd read about women not taking Tam because they no longer had ovaries (as in "hysterectomy instead of Tamoxifen"), so I was a little hopeful that he'd reconsider his stance on me taking Tam. He didn't. Did you know that your hypothalamus produces small amounts of estrogen? I'm not having a lobotomy!
Dr. Kotz said if, at the beginning of all this, I'd told him I'd only do one thing, chemo or Tamoxifen, he would have said Tamoxifen (because of its targeted nature). He said he's lost patients due to complications of the chemo regimen I endured (I knew this, but hearing it said so bluntly was shocking), but he's never lost a patient to Tam. He also told us that only half of his patients ever have any significant side effects. He'd prefer me to take Tam for at least 3 years, then switch over to Femara. That way I get the bone density benefit of Tam and the survival benefits of both. We ended the visit with a prescription for Tamoxifen (big surprise) that I'll start taking this Saturday, and a follow-up appointment in 6 weeks.
With that, I'd like to ask for prayers, good thoughts, crossed-fingers, anything really... that I have few, if any, side effects from this medication. I'm so ready to move on with life. There is so much living to be had!!
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