A comforting place to discuss planning a family, fertility concerns, parenting children, or relationship issues with partners, siblings, or parents following a diagnosis.
Posted on: Jul 13, 2021 08:35PM
I just had a very unsettling experience with a fertility specialist that really put a knot in my stomach, but also made me feel so uneasy and heartbroken about the idea of it happening to another woman who might not think it's necessary, or simply may not know, to research or get a 2nd opinion. I am a pediatric cancer survivor, and thought that was my story...Unfortunately, last year, 2 months before my 38th birthday, I was diagnosed with Stage 3 Invasive Ductal Carcinoma. I wasn't able to do egg retrieval before getting chemo for the 2nd time in my life, so fast forward a year later, I decided to get another fertility eval while I'm on a break from hormonal therapy to see if egg retrieval is an option.
I informed the fertility MD that I have been in chemical menopause since 9/2020 (Lupron), my last shot (monthly) was in May, and my menstruation has not restarted thus far. He gave me the impression that he was biased due to my age (I'll be 39 next month) and cancer history, but Still, he decided to do a transvaginal US for an antral follicle count (AFC) and draw blood for AMH, FSH, and LH. He asked me why I didn't do the process sooner (pre-2nd cancer; insensitive, in my opinion) and stressed that I shouldn't get my hopes up because Cytoxan is EXTREMELY toxic to the ovaries. He also gave me the impression that he was biased due to my age (I'll be 39 next month) and cancer history, but he was clearly very experienced, so I felt he was worth giving the benefit of the doubt. During the ultrasound, he informed me that he didn't see any follicles in my right ovary, and possibly 1, if that, in my left. He declared, "I think we may have missed the boat on that...I'm so sorry." I got my labs drawn, and left. I sat outside of the clinic in my car for roughly 30 minutes, too shocked and numb to even cry, but feeling like the room was spinning and like I was in shock. I thought, "I...can't believe after all this, I'll also lose the chance to ever become a mother." I went home and sat in my car for probably another 30 minutes before being able to make myself move and go inside. I felt like a zombie for the rest of the day; like I was dreaming or something. The next day, I couldn't even bring myself to leave the house and went to bed super early; I felt so devastated & in disbelief.
The following day, I was thinking that I didn't understand any of this stuff. For what it's worth, I have been an RN for over 15 years, and I am a newly minted nurse practitioner, so I have knowledge related to healthcare/physiology/biology, yet I still felt utterly confused about what the tests meant, especially in my situation. I was able to snap back enough to do what I normally do-research for myself. I was reassured when I learned that AFC cannot just be done whenever the MD feels like it; it needs to be based on the menstrual cycle, which I don't have as of now. I also learned that the AMH level might be a better predictor, which was also reassuring as I eagerly awaited the result. On Sunday, I received an email that my lab results were available (I have a Quest account). I checked and saw that my AMH was VERY low, 0.03. My heart dropped, because I thought it was very likely that the results confirmed infertility, but I was still confused. I frantically messaged my medical oncologist via the pt portal and asked if the AMH level was due to the Lupron or if I was simply infertile. She replied on Monday, stating that Lupron can cause a low AMH level, and can take 3-6 months or longer to wear off. She stated that the fertility doctor should be able to interpret the AMH value in association with my last Lupron dose. I was relieved. Nonetheless, I received a voicemail from the fertility doc stating that my AMH "makes sense" given my "history" and my "cycle". He stated that "it takes 15 eggs or at least 13-14 to have a healthy baby", and I may have 1 egg, if that, so he would strongly advise against me moving forward with attempting egg retrieval.
I am both relieved that there is hope that my ovaries will function again when the Lupron wears off, as well as angry, alarmed, and disgusted at the TREMENDOUS disservice done to me, by that doc putting me through the mental anguish of thinking all hope was lost for motherhood, when I've wanted to be a mother ever since I can remember. Both cancers have taken a great deal away from me, and breast cancer introduces some specific challenges that can be very difficult for women. What I went through was very traumatic and more difficult than anything I think I've ever been through. As cancer patients, we have enough to deal with without having to worry about being fed false information!!! However, that is what happened in this case. I urge anyone in general, but speaking now particularly to women who have/had breast cancer, please research (reputable sources) and speak with your medical oncologist, fertility doc, surgical onc, plastic surgeon, etc. regarding your situation. At the end of the day, it's our bodies and we have to advocate for ourselves. I feel unnerved by how close I came to thinking that it was certain that I was infertile. If I hadn't taken more steps, I would've restarted the Lupron and likely gone through life not knowing what I know now, or worse. Don't be afraid of offending anyone; do your research & get a 2nd, 3rd...as many opinions as it takes to make sure everyone to whom you are entrusting your life and well-being (mental, physical, emotional, spiritual...) have your best interest at heart and are helping to accurately guide you in the best, most honest direction.
Love & Strength to My Fellow Breast Cancer Warriors