Following surgery, chemo & radiation, my treatment continues with hormone therapy. Upon completion of radiation I began this step by taking Tamoxifen. I have however, recently changed my hormone therapy plan & am exploring alternate options. There seems to be a lot of question in this area from my readers & Instagram followers, so I wanted to share my experience so far.
The type of hormone therapies available are based on your menopausal status. Post-menopausal woman, typically have three hormone therapy medication options: Tamoxifen, Anastrozole & Letrozole. However, pre-menopausal woman are limited to only Tamoxifen.
Tamoxifen is used to treat hormone-receptor positive breast cancers. A test included in your pathology report would identify if your breast cancer cells have receptors for hormones. These are proteins that receive signals, from either estrogen or progesterone, telling cells to grow. In other words, these hormones can fuel cancer cells in hormone-receptor positive breast cancers, therefore hormone therapy can be beneficial in treating breast cancer & preventing recurrence.
Because I have some friends & family members who’ve had bad experiences with Tamoxifen, I was hesitant to take it myself. I was hopeful, that chemotherapy had actually put me into menopause, which was a definite possibility. I experienced hot flashes through treatment & hadn’t had a period in more than eight months, since before surgery. However, to be considered menopausal you typically would have no period for at least a year.
Many woman experience zero side effects from Tamoxifen, however for those with less favorable experiences, there are ways around taking it, although slightly more drastic. My oncologist reminded me that we tend to hear more of the negative experiences & less of the positive, I do find this to be true. Tamoxifen has been the only drug in use for pre-menopausal woman for 40 years because it works & it works well. This was enough to convince me to try. At the very least, if it was terrible, I could stop & had other options available.
Upon completion of radiation, I began the final step in my treatment plan with Tamoxifen. At first there were no immediate side effects & I was happily surprised! Eventually though, I began to have night sweats, a lot of headaches, I woke up with one almost every day for months, difficulty sleeping, irritability, mood swings that made me feel so unlike myself & my menstrual cycle returned, with a vengeance. I had been on birth control for many years (partial possible contribution to my breast cancer…) which had always made my periods very short, light & I never experienced cramps, it was a breeze. This was the very opposite & included cramps so terrible I felt like I was in labor again… It felt like I was being sawed in half & nothing helped.
I discussed these side effects with my oncologist who suggested I stop taking the Tamoxifen to make sure that this was all in fact, due to the medication & nothing else. She ordered an MRI just to be safe, since I was experiencing such frequent headaches. This turned out to be clear of any cancer, so that concern was thankfully cleared.
Just before stopping Tamoxifen, I had my yearly exam with my OB. She was concerned with the amount of bleeding I had been experiencing & reminded me that Tamoxifen can cause uterine cancer. She wanted to err on the side of caution & scheduled an ultrasound. The ultrasound showed thickening of the uterine lining & a small cyst on one of my ovaries. My OB wanted to proceed with an endometrial biopsy & a follow up ultrasound six weeks later to confirm no growth of the cyst. The biopsy has thankfully come back benign & the second ultrasound showed the cyst has since disappeared, another bullet dodged so to speak.
When I told my oncologist about the tests initially, she said basically the biopsy could make my decision for me very easily. Obviously if there were any indications of cancer, we’d proceed with a hysterectomy & I would try one of the medications available to post-menopausal patients. If the biopsy was clear, then I needed to decide if I would continue with the Tamoxifen or if I wanted to put myself into a menopausal state so that I could explore alternatives…. This was a very difficult decision for me, did I want to experience menopause at 37? Obviously not… but I would consider it if the outcome overall was more promising…
The tests & waiting for these results has been a little stressful & I continued to contemplate Tamoxifen versus menopause… I had been feeling better now, having been off the medication for a while. I was feeling more like myself again, no mood swings, less headaches, I just felt all around better! The fact that Tamoxifen has been shown to cause uterine cancer, I admit got into my head. I just thought, wow… I’m already having a biopsy because of it & I’ve been taking it for just six months. They want me to take it for TEN years & there’s already concern? Knowing the standard was previously five years & recently extended to ten, makes me uncomfortable in that I would be part of this new generation taking it for longer. How would the additional five years increase the uterine cancer risk? I was asking myself, am I willing to put myself at risk of another cancer to prevent the other from returning? Finally, I decided I wasn’t, not if there are other options out there to try that have in some cases proven more successful.
I let my oncologist know I was ready to proceed with the alternate options. I’ve since begun ovarian suppression to essentially put me into a menopausal state, by taking Zoladex (generic name: Goserelin). It’s a monthly injection, inserted typically into the stomach area where the medication is released slowly over four weeks (there is also a version available that lasts for three months to minimize the amount of injections). This menopausal state can be reversed at anytime simply by forgoing the injections. Since I’ve had two C-sections & reconstruction that essentially included a tummy tuck, my tummy area is somewhat numb, so the injection was tolerable for me. There are however, pretreatments that can help ease the injection pain if needed, I won’t sugar coat it… the needle is large & intimidating!
It may take one to three months, but once blood tests confirm my body is in a menopausal state I can begin one of two other hormone therapies available to post-menopausal women. I can also eventually opt for more permanent action in place of the monthly injection, like a hysterectomy. My oncologist wants me to be sure I can tolerate menopause before making any permanent changes & I appreciate her line of thinking. At this point, if this is terrible, I can always stop & go back to Tamoxifen; right now I’m just looking for the lesser of two evils. Neither may be fun, but they’re far better than cancer. With that in mind I continue to move forward on this journey with positivity, still very thankful to be in remission & working to keep it that way not only with hormone therapy, but also a healthy diet & exercise.
I’ve been on the Zoladex for just over two weeks now & so far so good. I’ll keep you all updated in my progress & any side effects that might come my way. Please let me know if you have any questions or suggestions if you’ve gone through this as well! I seem to get the most questions lately about this topic, please share your experiences as well in the comments for myself & others. Together we are stronger!