Treatment Update and Tamoxifen
One more left. I have one more round of Herceptin, being administered in seven days, and then I only have Tamoxifen. Then I only have follow-up visits and check ups and tests to make sure that I didn’t do too much damage to my body. It’s insane. It’s insane that I am almost done. But I’m not really almost done. In fact, I feel like I won’t be done for another ten years.
Looking back on how I felt when I got my final round of radiation, when I didn’t ring the bell because in my mind I still had fourteen rounds of Herceptin left, I realize now that maybe there is no bell. Maybe there is no finite end for me or anyone really who has cancer. There is no cure. There is no black and white finish. No line to cross with crowds cheering on the sidelines as you finally, finally can say, “I’m done.” What does that feel like? How do you process that? How do you move forward when the finality is stripped from your hands, when you finally come to realize that it doesn’t end.
Over the last month I have spent a lot of time thinking about the next chapter of my life and a lot of time looking back on the last fourteen months and what I’ve come to realize is that from August 12, 2020 on, everything changed and every stop and start from that day on will always be, in some way, touched by cancer. There is no going back and there is no “new chapter” there is only a series of next steps until the end of my life. This doesn’t bother me anymore. There is no going back and I made peace with that months ago. There is, however, a whole lot of nexts and as much as things are about to become drastically less busy on my calendar, it isn’t by any means an end to doctor's appointments.
Speaking of doctor’s appointments, the main focus of the last month (besides an unbelievable amount of homework) has been doing research on Tamoxifen. I have one friend that has been on it for seven months who gave me a lot to think about in terms of screenings and another friend who just started taking it. The one that has been on it for seven months is starting to experience some side effects that are concerning, however the one who has been on it for only a few weeks hasn’t had any side effects. One woman is 51 and one is 37. Obviously I won’t know what my own side effects are until I’ve started taking the pill, but I want to believe mine will align more closely with the 37 year old (fingers crossed big time).
In terms of Tamoxifen and the research that I’ve been doing on it, I’ve learned some things that I think are important for anyone taking this pill to know.
I’ve heard a lot of people (myself included) say that Tamoxifen mimics menopause but that is not entirely true. When doing research on this drug I found out that Tamoxifen blocks the activity of estrogen in your breast but it acts like estrogen in your uterus and bones. What that means is that it will increase your fertility and is even used sometimes for infertility. It’s also used sometimes to make it so that men who used steroids won’t grow breasts.
Tamoxifen Research
Originally I really didn’t want to take this pill so my research focused on proving that I didn’t need to take it (despite being strongly er+ on all four of my tumors). For women who are BRCA+, there was one study that showed that a lower dose (5mg) was an acceptable treatment plan and came with much less side effects, meaning women would actually continue taking the pill. I wanted this to apply to me, but it doesn’t (sigh).
The pill comes in 10mg or 20mg tablets. My plan when talking to my oncologist next week is to ask to start on the 10mg tablets for three months and see how I do. I would rather wean onto this pill than just jump right into it. I’ll obviously update in my next post if she allows me to do this.
In terms of how effective Tamoxifen is for me personally, my diagnosis was stage 2a with no lymph node involvement. According to this study, having no lymph node involvement means that there is NOT a statistically significant difference in taking Tamoxifen for me, however the recurrence rate goes down to 4% versus 7% for someone who didn’t take Tamoxifen.
When trying to decide IF I was willing to succumb to the myriad of side effects and risks associated with Tamoxifen, I felt like I had to not only weigh the pros and cons of taking it, but think about how I would feel if I didn’t take it and had a recurrence. That was the deciding factor that I would at least try Tamoxifen. Because if my cancer came back and I didn’t try Tamoxifen then I would blame myself for it coming back - for not doing everything I could to prevent a recurrence.
Side Effects and Additional Testing
My concerns with taking Tamoxifen were originally that I didn’t want to have non stop hot flashes, gain weight, and have major mood swings. Now that I’ve done research on the drug, though, my biggest concern is developing uterine and endometrial cancer. One of the side effects of Tamoxifen is that it makes your uterine lining thicken. It can also cause polyps and fibroids. I’ve had my fill of cancer and the last thing I want is to get it in another part of my body while trying to prevent it in my breasts. So, what do I do? I am going to try it. BUT, I am being proactive and asking for a handful of tests to be done to monitor my conditions while I’m on this drug.
The tests that I want done to monitor my body are:
Blood counts (including thyroid) checked every three to six months. Because one of the side effects is bone marrow suppression, the information sheet my oncologist provided me says that my blood counts should be checked periodically. There is also a possible impact on thyroid function in peri and post menopausal women on Tamoxifen so I am also asking for this to be checked periodically.
Bone Density According to the handout that I was given, in pre-menopausal women Tamoxifen can actually have a negative impact on bone density therefore I want scans done periodically throughout the next five years
Internal Ultrasound I have never had an abnormal pap smear and because of this only get them every 3-5 years but now I want them yearly. I am also going to ask for internal ultrasounds to check my uterine lining yearly. This is a very big concern for me. I do not like that I am potentially trading one cancer for another. I’m also going to ask if I can get referred to a gynecologist that specializes in working with women who have had breast cancer. Right now I go to my primary care provider for my exams because I’ve never had any issues. Now, I want a specialist.
Eye Exams Another side effect of Tamoxifen is visual disturbances. I have always seen 20/20 and never needed to even see an eye doctor but this is another thing that I am not willing to risk (especially since Macular Degeneration runs heavily in my family).
Final Thoughts
I have always been one of those people to take pills (for the most part) without caring what the side effects are. Heck, I took hormone birth control from 15 to 37 and that’s more than likely why I got breast cancer. Now, I’m not playing games. I am not willing to put myself at risk for more cancer or long-term health problems just to reduce my percent chance of recurrence by two percent. I’m willing to try Tamoxifen, but I’m not willing to trade quality of life for quantity.
One more thing that I think is worth noting. Herceptin has the potential risk of permanent damage to your heart which is why I have been getting echos every three months for the last year. According to the breast cancer book that I was given by Elliot Breast Health, I should be getting echos once every six months for the next two years. This is something that I’m not sure many people who were given Herceptin are aware of and I am not willing to let my team forgo administering these tests. I am also going to request blood work be done again in the next two months to make sure my counts go back to my old levels. It’s sad to say but if you don’t advocate for these things then they won’t necessarily be done.
In the upcoming months I will share how things are going while I undergo the next phase of treatment. I hope that all of this information is helpful to others. I also encourage everyone to do their research and don’t just take my word for it. There is a vast amount of research out there and I have just covered the tiniest tip of the iceberg in this post.
