Wednesday morning we arrived at the gyn-onc office early for my 8:00 appointment. I looked around the waiting room and every woman there had gray hair. They were all accompanied by their husbands. I had that part going for me. We waited awhile, but we were just happy that they managed to fit us in so that part was no big deal. We were both getting more and more nervous though.
Finally we were taken back to an exam room. We waited a few more minutes and then spoke with the nurse practitioner first. She had already reviewed all of my records and was familiar with my case. She was nice, young, and I felt comfortable with her. Then we spoke with the doctor. I think she has a calming personality that made me feel a little better. We also recognized each other from the operating rooms.
When we started to discuss treatment, the first thing she said was that the standard treatment for endometrial cancer is a hysterectomy. Gulp…
Then we found out that I was a candidate for conservative treatment with hormonal therapy for several reasons: the pathology of the tumor was only Grade I, my MRI was negative for signs of invasion into the uterine wall or metastasis, and my chest x-ray was negative for metastasis to the lung. But, they made sure several times, that we understood that the standard treatment is a hysterectomy (gulp again…) and that conservative treatment would not be without risk. There was a chance that the hormones wouldn’t make the tumor regress. There was risk that the cancer could grow and spread while we tried this. But, they thought that it was a reasonable plan if we wanted to preserve my uterus for potential fertility.
They were unsure (like my infertility doc) why I developed this cancer at such a young age. Endometrial cancer is typically a disease of post-menopausal women. The younger women who develop it typically have one of two risk factors that create a hormonal environment with high estrogen levels: polycystic ovarian syndrome (PCOS) or obesity. I did not have either. Genetics can, of course, play a role so they suggested that I see a geneticist.
She answered all of our millions of questions. I knew that I would think of more when I walked out the door and they both volunteered their email addresses to field questions.
We left with a plan and here it is:
I would start hormonal therapy with megace (megestrol) that day. Megace is a progesterone-like hormone. Because endometrial cancer is a hormonal condition and is fed by high estrogen levels, therapy with progesterone can make it regress.
They would request that my original pathology samples be tested for estrogen and progesterone receptors in the tumor. High estrogen and progesterone receptor levels imply that the cancer should be responsive to this treatment.
I would take megace for 3 months. In 3 months (June) I would have another surgical procedure – a hysteroscopy and dilation and curettage. This endometrial sampling would give us more information on whether the cancer is responding to the treatment.
If the cancer has regressed in 3 months (June), I would continue the megace for another 3 months. At that time (September), I would have another surgical procedure. If the cancer was still gone, we could try IVF!
If the cancer had not regressed in June, I would double my megace dose and try again in September. If it had not regressed in September, we could try megace for another 3 months. In December, if the cancer had not regressed, I would have a hysterectomy.
Basically, we had 9 months to try to get this thing to go away.
So, best case scenario, we could try IVF in the fall! Worst case scenario… I would have a hysterectomy within 9 months. But they would let us harvest eggs before then. That would also be complicated though, because the procedures for harvesting eggs require estrogen, which could feed the tumor if it lingered anywhere in my body. They suggested I see another reproductive endocrinologist and infertility specialist who they frequently worked with for another opinion on fertility preservation.
The other overall theme was that I need a hysterectomy no matter what. Attempting to get pregnant and have a baby (or two) would just delay the inevitable. Some women with this cancer have one pregnancy and are still clear afterwards and can get pregnant again. Some women relapse after pregnancy in which case a hysterectomy might be the recommended treatment with or without another course of megace. If we were allowed a second pregnancy, it would have to be soon after the first. I had never planned on having multiple kids within a year, but if that is my worst problem then that would be just wonderful!
So we left the office, dropped the prescription off at Rite Aid, and headed to Starbucks for a drink (mine decaf – I gave up caffeine when we started trying to get pregnant!) while we waited for the prescription. We arrived home with two drinks and a bottle of megace. I crossed my fingers that I wouldn’t be allergic to this potential miracle drug and we toasted with our coffees while I took the first dose.
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