Tamoxifen Updates & Upcoming MRI
Well. A lot has changed over the last few weeks, no thanks to Tamoxifen, the “practically over the counter drug” that has caused me more mental anguish than all of the other parts of my treatment combined. After taking a four-day break from the “big-T” I felt like a quitter for not continuing my treatment and went back on it. I lasted another six days before having a mental breakdown at the exit 22 rest stop on I-93 which led to me calling my Oncologist’s office crying asking for help followed by calling my Primary Care Doctor’s office asking to be seen for an increase in my anxiety medication. Ultimately, after the dust settled, my Oncologist decided to have me stop taking Tamoxifen right away (my last dose was 12/26) and informed me that we would discuss everything when I saw them on January 7. It was really scary. I felt like I was having paranoid delusions. I knew that what I was thinking was not true or real, but that didn’t mean that I could stop myself from thinking it. On top of that, I couldn’t get my anxiety to settle. I’ve struggled with anxiety and panic attacks for almost thirty years. I know how to handle them, but this was next level.
After discontinuing the drug, it took about three days for the worst of the anxiety to subside. I woke up three days after stopping the drug feeling like the sun was shining brighter, all of the weight was lifted off of my shoulders, and I had a ton of energy and desire to do things again (other than sit on the couch or lay in bed). The half-life of Tamoxifen is 5-7 days so I knew it would take about two weeks to be fully out of my system but the relief that I felt after just a few days off of the drug was mind-blowing. I couldn’t believe how much this drug had been affecting my energy levels and my mood over the last three months.
My appetite didn’t return fully (it still hasn’t) but the nauseous feeling and general disgust in food subsided after about a week. I still can go all day without eating and not really feel like I need to, which is incredibly not like me, but at least now I can tolerate food again. The heartburn that I was having every night without fail still comes in ebbs and flows. I’m not sure if it’s still residual damage from Herceptin/Taxol, but it has improved slightly over the last few days. I’ve begun to almost sleep through the night again, too. Tamoxifen was strongly impacting my sleep. Every night I would wake up for around an hour and just not feel like I could go back to sleep. Now, I still wake up, but not for as long and not as often. It took a solid two and a half weeks to have my hot flashes finally dissipate. I still get minor flashes both during the day and as I’m going to sleep, but nothing like I was having.
On January 7, I met with my Oncologist to “talk about my options.” I chuckle to myself as I think that they make it seem like the other options are going to be somehow better (they’re not). After spending a solid year and a half in the breast cancer world, I know what my options are and they were not ever options to me when I started this journey. I had been told by every doctor that I talked to that Tamoxifen wasn’t bad and that people make it out to be worse than it is, so I figured that I would be fine on it. Clearly I was wrong. Now, I’m looking at my other options, along with the dozens of side effects they have, and wanting to give Tamoxifen another try.
I’ve always been really fortunate to have such a neutral and non-pushy Oncologist. She gives you the facts, and doesn’t try to sway you one way or the other. We talked about the likelihood of recurrence for me, without hormone therapy, within the next five years (10-15%) and the likelihood with Tamoxifen (7-10%). I know those numbers seem extremely low, but what she stated that hadn’t ever occurred to me was that the reason they push for hormone therapy is because if there are any breast cancer cells in other parts of my body, and they grow, then I am going to be facing metastatic breast cancer. I realized she isn’t worried about a local recurrence, she’s thinking big-picture, worst case scenario, metastatic breast cancer. There is no way of knowing if there are cancer cells in other parts of my body. You can’t see a cancer cell. All you can do is be proactive and try to prevent the potential cells from reproducing.
I asked her what my treatment would be if I got cancer again. She stated the same as what I just had, mastectomy, and then potentially hormone therapy, radiation, chemo, etc. Unless my cancer came back hormone receptor negative, which seems unlikely, I would be facing the same decisions that I am currently facing.
I’ve perseverated on my conversation with my doctor for the last week. I’ve looked at all of my options and they all suck. I don’t want to have my ovaries shut down at 38. I don’t want them removed either. I know that these are my only two treatment options left. My other option is to forego hormone therapy. I asked my Oncologist about recurrence for my kind of breast cancer, and she said hormone receptor positive tends to recur at five or more years after the first diagnosis. Do a quick google search and you’ll discover that more than 50% of hormone receptor positive recurrences happen after five years so if I make it five years, I’m actually at a greater risk of recurrence. It seems unfair. It is unfair. All of it. But that doesn’t mean I don’t have to face it.
My hormones are feeding any cancer cells that I have in me. Because I’m premenopausal, they can’t give me the hormone therapy drugs that exist (besides Tamoxifen) because they’re for postmenopausal women. Therefore, my treatment is now twofold: a shot (given monthly probably) to shut down my ovaries, and then what is called an Aromotose Inhibitor. These drugs work just like Tamoxifen but are designed slightly differently and don’t come with the same side effects (although they do have many of the same ones, not all). Because of how I reacted to Tamoxifen (and my Oncologist did inform me that I was absolutely having a bad reaction to the drug and that it was not normal to feel the way I did while I was on it) she would recommend first starting me on a one month trial of ovarian suppression. Then, if I tolerate it, try another month, etc. Eventually, but not right away, she would introduce an Aromatase Inhibitor (AI).
I’m thankful that she is being so patient with me and giving me time to process this. I have an appointment with her in a month to talk about what I decide as well as to go over my hormone levels (which she will be checking next week). She doesn’t seem worried, and that helps me be a bit less worried. She also said that fifty percent of women don’t complete the full course of hormone therapy because of side effects.
Monday I have the MRI which will be the most definitive test in showing if I do or don’t have cancer. It is THE test. I woke up this morning not nervous for the first time in weeks about it. I woke up feeling like I wasn’t going to be told I have cancer again this coming week. Regardless of what I decide about hormone therapy, for the next week I am giving myself permission to only focus on getting through each day until I get the all clear from my scans. If I need to spend the week at home watching The Office every day, then so be it. If I can’t do anything productive, then so be it. I need to give myself permission to rest and I never do that. After I get my MRI results, then I can focus on hormone therapy.
