No Longer In Cancer Treatment: Ending Hormone Therapy Five Years Early
Today, March 23, 2022, I officially ended my cancer treatment. I’m still not sure how I feel about that and wasn’t expecting the conversation with my Oncologist to go how it did. In my last post, I was still on the fence about whether or not I would do ovarian suppression. Ultimately I figured you can’t knock something until you’ve tried it and decided to do it for one month. On February 24 an implant the size of a grain of rice was inserted into my abdomen. The implant, Zoladex, tells your pituitary gland to tell your ovaries to shut down. At the appointment my Oncologist told me that it works quick; that within two days my estrogen levels would be that of a post-menopausal woman. In conducting my own research I learned that isn’t how Zoladex works. Over the course of three weeks, your hormone levels dip down to that of a woman who is post-menopausal.
How I Felt For A Month & Getting the Implant
Having the 14 gauge needle stuck into my abdomen didn’t hurt at all. I was expecting intense pain and was surprised that it didn’t hurt. However, that implant was in there about three inches below the surface and once it was in, I started to become incredibly scared. There was no going back now, and instantly I regretted my decision.
Hormone therapy from day one has felt optional to me. I have a 10-15% chance of recurrence (according to my Oncologist) without hormone therapy. Completing five years of hormone therapy would bring my recurrence down to 7-10%. From the moment I knew that my risk of recurrence was only going down a small percentage I have struggled with committing to hormone therapy. Having such a horrible experience with Tamoxifen (see this post) just made it even more difficult for me to agree to the more invasive ovarian suppression/aromatase inhibitor option. But I had to at least give it a try, and my husband really wanted me to at least do one month, so I did.
The first three days on Zoladex were hard. I was terrified. I woke up on day three and had a meltdown all day. I didn’t want to get out of bed, was depressed, and upset. How was I going to continue my studies if I couldn’t even get up the energy to get out of bed? I emailed my Oncologist and called the after-hours line at Dana Farber. I told them I was really struggling mentally and wanted the implant taken out. I told them I was not doing well. Then, I sucked it up and forced myself to get up and do my homework.
As the days passed I didn’t feel different and started to wonder why I didn’t have any hot flashes or anything. Chemotherapy makes you post-menopausal so I know how that feels and I wasn’t feeling like that on Zoladex at all. Then, out of nowhere, I got my period. I thought you weren’t supposed to have a period on Zoladex. Wasn’t the whole point to shut down my ovaries? I was very confused so I called my Oncology team. The nurse informed me that apparently it may take a few rounds for Zoladex to work and that’s why I had got my period (even though it came a week early).
I had my period for six days (the longest it has been since before cancer) and then the two weeks following that didn’t feel any different still. Finally, during week four of Zoladex, I started to get hot flashes.
Why I Am Not Continuing Hormone Therapy
When discussing whether or not I was going to do hormone therapy with Jason I must not have been clear enough that Zoladex isn’t the treatment. The treatment is an Aromatase Inhibitor, which is similar to what Tamoxifen is, only for post-menopausal women. When he realized that I was going to have to do this shot along with an AI all to bring my risk down a small amount, his mind was made up. We would not continue hormone therapy because it was affecting my mental health, quality of life, and our relationship was suffering.
Today, at the appointment with my Oncologist, the decision was more or less made for me. I went into the appointment expecting her to try to convince me to just keep pressing forward, how important hormone therapy is, and that I shouldn’t give up. What ended up happening was she came into the room and told me that we had reached the end of the road and that there were no other options for me. I shared that I wasn’t really feeling that different on Zoladex other than hot flashes, but that it was really affecting my mental health and quality of life. I told her I felt like it was optional. Knowing that half of women don’t complete it and that it only reduced my risk a small amount was making it hard for me to buy into. I told her that I needed her to sell me on it if she wanted me to take it. I asked her if I could take a few months off and then give it a try again. She said that I needed to just tie a bow on it, and as hard as it is, accept that I am done with treatment.
I asked if I entered menopause naturally in the next few years if I could try an Aromatase Inhibitor and she said we could discuss it but for now, I’m done cancer treatment. I did the best I could, suffered through five months of hormone therapy, and even tried ovarian suppression (something that I was vehemently against). I know it’s going to take some time to accept this decision, and although there are moments when I am terrified that I am making the wrong choice (that I’m not safe now that I’m not in treatment) I have to just try to remind myself that I did everything I could.
When I think about what position I could be in right now, that if I got that shot again I would most definitely be entering menopause a decade or more early, it scares me. I don’t want to be post-menopausal at 38. I don’t want to increase my risk of Osteoporosis or heart disease by doing ovarian suppression. I don’t want to have no sex drive, decreased stamina, or be tired and foggy all of the time. I even want to have a period (something I never thought I would say).
I’m not ready to be post-menopausal and while there are many people out there that would wholeheartedly disagree with my decision, this is my body and my life. My Oncologist supports my decision and so do my family and friends. Yes, I am putting myself at an increased risk of recurrence. But I am willing to take that risk.
Everyone faces cancer in their own way. We all must come to terms with the fact that we have this diagnosis. Some choose to do every single thing possible to ward off a recurrence. They change their diets, exercise, do all of the treatments, even non traditional ones. Some people choose to not do treatment at all. Then, there are the rest of us, somewhere in the middle, just trying to find our way and make decisions nobody should have to make.
For me, coming to terms with the fact that this might kill me one day has been a cathartic experience. I have chosen to handle my situation by picking quality over quantity. I’ve been afraid of dying my entire life but facing death head-on has helped me accept that dying is inevitable. We all die eventually, even if we do all of the treatment options available. Maybe this will kill me one day, in forty years. Maybe I’ll get hit by a car tomorrow. Regardless of how I leave this earth, though, I can say that I did my best, my absolute best in facing a cancer diagnosis.
In the end, from the date of diagnosis (8/21/20) to my last day of treatment (3/23/22) I had major surgery, twelve rounds of Taxol, twenty-six rounds of Herceptin, twenty rounds of radiation, and five months of endocrine therapy. I did all of this while being in graduate school, working part-time, and hiking over 1,000 miles. My biggest fear when I received my diagnosis was that it would take everything from me. Cancer can only take what we let it have. I wouldn’t let it have my education or my hiking. Now, I won’t let it affect my quality of life or my happiness. I was someone amazing before cancer and I am going to be someone amazing after finishing treatment but I am not the same person I was before August 2020 and, if I’m honest, I wouldn’t want to be that person again.
I thought cancer would take away my identity and it did. It took who I was and replaced her with someone a million times stronger and more determined. I am better than who I was before I got cancer and now, after nineteen months, I can say I am done with cancer treatment.
