One Month Post-Chemo and Tamoxifen
I can’t believe it has been a whole month since I got my last round of Herceptin. A lot has happened in the last thirty days, a lot of feelings have come and gone, and come again, but that seems to be the roller coaster that is just part of being diagnosed with a life-threatening disease, I suppose. In my last post, I talked about how much I was struggling with whether or not I wanted to continue taking Tamoxifen. I received a diagnosis of Osteopenia, and then tried to decide if I was willing to continue taking Tamoxifen only to realize that not taking it was scarier than the myriad of side effects associated with taking it.
On November 3, I went down to Dana Farber in Boston to meet with a highly recommended Oncologist who specializes in breast cancer. I was excited, thinking that I would finally be meeting with someone who knew my disease and would agree with my concerns about taking Tamoxifen without having some additional diagnostic screenings done throughout the next five years. In this post, I outline all of the side effects that are associated with Tamoxifen, and what I was looking for in terms of screenings.
Sadly, that appointment went horrible. The Oncologist completely downgraded my concerns, even going so far as to say that she wouldn’t have recommended yearly MRIs for me because my cancer was early stage, (two of my tumors were only visible on an MRI because I have dense breast tissue) and told me that Tamoxifen is practically an over the counter drug now. She told me there is nothing to be concerned about and brushed off my questions about further screenings while on the drug. She assumed that I was listening to fear-mongering online and not doing research for myself. When I handed her the twenty+ page packet that my current Oncologist had given me on the side effects associated with Tamoxifen, she glanced at it and said this isn’t something that we usually give patients because it just lists all of the things that might happen on the drug.
I left that appointment feeling completely disheartened. I didn’t talk about it on social media because I didn’t want to present myself as just another person complaining about their treatment. I didn’t want to scare anyone else who might be in the process of getting onto Tamoxifen either. Now, I’m sharing it just so that I can paint the full picture of my journey. It’s not easy but it’s real.
Since October 15, I’ve been taking Tamoxifen daily. I’ve had minimal side effects for which I am very thankful, and one of the more “pleasant” side effects of this drug is that I have no appetite and that’s helping me lose some of the weight that I’ve gained while in treatment. Lack of appetite is by far the biggest side effect for me on this drug. I have a little trouble sleeping and very mild hot flashes when I’m trying to fall asleep only, but that’s it.
In terms of follow-up care and diagnostic screenings, I met with my Primary Care doctor a few days ago and she is referring me to an OB/GYN to get internal ultrasounds yearly. She also referred me to an Endocrinologist because of the Osteopenia. I have my port removal scheduled for 12/20, although I’m slightly nervous about this because my Oncologist told me that there’s a superstition among cancer patients that if you get your port out the cancer comes back. I also have scheduled to get a tattoo done on my left breast to cover it up and I’m guardedly excited about that.
I plan on staying with my current Oncologist and will see her in January to talk about how the Tamoxifen is going but I’m going through my PCP for all of the diagnostic screenings that I want because it’s just easier. I don’t have to fight for what I deserve to be getting if I go through my PCP and I’m sick of fighting.
One more thing that happened in the last month, I got a pap smear for the first time since 2019 on Monday and for the first time in my life, I had abnormal cells on it. I was terrified. I sat in bed Saturday morning reading the results on my cell phone from my e-chart and all I could think was, “I have cancer again.” I really don’t like how we get the results from different screenings through e-chart. It’s traumatizing. I spent all day yesterday feeling terrified and worried that I will get a cancer diagnosis again. Today, after hearing from a bunch of women who have got lots of abnormal pap smears that were nothing, I’m feeling far less afraid. However, I am going to request another pap smear and then if that one is abnormal I want a biopsy.
It made me wonder if I should wait to get my port out. I was just getting to a place where I was excited again. I was turning a corner and feeling excited about my future and then this happened. Then I had to read the words: Squamous Cells of Undetermined Significance (ASCUS) on my e-chart and all of the fear of a cancer diagnosis came flooding right back to me. I realized I’m not safe, I never will be. There is no end to this process, there is no final day in treatment that I can mark on a calendar. I can’t ever say, there I’m done now, until I die. So I have to learn to live in fear. I have to remember how I navigated my diagnosis a year ago and use the skills that I acquired back then to get through this unexpected situation.
I told my husband, at least I know how to do this. At least I know how to handle it this time. But I don’t want to handle it again. I want to never handle it again. Sometimes we don’t get what we want but for Christmas I want to not have Cervical cancer. I think that’s a pretty good thing to ask for.
