EndoCa: Cancer Surprise (long!)

I started my period when I was 12. I turned 34 in October 2009. The entire time I have been menstruating, my periods have been really irregular and heavy. When I was a teenager, I went on the pill both as birth control and to help regulate my cycle. This helped with the cycle but not so much the heaviness. Other than this minor blip, I've been disgustingly healthy - no surgeries (not even tonsils), no major illnesses.

As I got a little older, it was up to me to schedule my own exams. I went off the pill for a few years but in 1998 I decided to go back on. I scheduled an exam with the local Planned Parenthood. My pap smear turned out to be abnormal and I underwent a colposcopy and cryotherapy. I stayed on the pill for about two years but then my husband had a vasectomy, so I went off it (and promptly never scheduled another exam).

Fast forward to mid-2009. I'm not on the pill, I haven't had an exam for about ten years (I know, I know), and I'm not concerned about birth control at all. My periods are a little more regular, but just enough to be maddening - I'd have three months on the same day and then the fourth month would be a complete surprise. Aunt Flo usually showed up at 2am, and I would be up and down out of bed until 6 am changing tampons and pads (I always had to use both). This was OK because usually I could still go to work without worrying. In the later summer it got a little worse - sometimes I'd get my period when I woke up to go to work and then wouldn't be able to leave the house. I have the ability to work at home, so while this is inconvenient it's not the worst thing in the world.

In August, I got my period as I was walking into the ballpark for a Rangers game. This was the absolute last straw. I decided that when the baseball season was over, I was going to find a GYN and get back on the pill.

Of course, I procrastinated. I didn't get around to actually scheduling an appointment until the beginning of November. In hindsight, I think in the back of my mind I was worried about that one abnormal Pap test. Anyway,I picked a GYN via my insurance provider's website and scheduled an appointment for the earliest possible "new patient" time - December 1st.

At my initial exam we discussed my desire to get my period under control. She thought it sounded like PCOS and did some blood tests. A week and a half later her office called to say that yes, it did look like PCOS and they would like me to come in for an ultrasound to confirm it. All my other tests (Pap, etc) were normal.

December 17th I had an ultrasound. The ultrasound confirmed PCOS, but it also showed a really thick endometrium. Since I should have actually been having my period at the time (I was late), this was a concern. Before I left her office, I also had an endometrial biopsy. This was when we first discussed hysterectomy as an option for me.

My biopsy came back as "complex hyperplasia". We scheduled a D&C for December 30th, but my doctor reassured me that endometrial cancer was extremely rare in women my age and that while she would probably recommend hysterectomy, it was most likely not cancer.

On January 4th, my doctor's office called to say that my lab results from the D&C had come back in and that it was "worse than expected". I just knew it was cancer - really, what was going to be worse than what we had already comfirmed? January 7th I went in and sure enough, I was told that I had a grade 1 endometrial cancer. We discussed the options for surgery. My gyn performs daVinci hysterectomy along with the usual types, and she recommended this right off the bat. She wanted to schedule my surgery with a gyn-onc she often worked with, so I left without a surgery date scheduled. She also wanted to discuss surgery options with my insurance company to make sure they would cover DVH.

Things really picked up from here, or maybe I was just in shock form the diagnosis. I had the hardest time telling my mom - in August 2007 my dad was diagnosed with extremely aggressive lung cancer (he had never smoked) and he passed away in September 2008. I stressed that my gyn felt we had caught it very early and that my prognosis was likely to be excellent. My husband was fantastic during this time.

January 13th, I had a surgery date set for 1/26. My gyn would perform the bulk of the surgery with the gyn-onc assisting. If they determined they needed to take lymph nodes, they would switch roles. I signed a consent form to take my ovaries also, though we did not think this would be necessary.

My surgery went fine - I did lose my ovaries, but I knew this would be a possibility. I was told when I woke up and returned to the land of the living (as opposed to just being awake) that they had also taken out three lymph nodes that looked "inflammatory", even though they weren't enlarged, and that they had done a pelvic wash. The other surprise was that my tumor had actually come back since I had the D&C, and that because it was so aggressive it was actually considered grade 2.

Y'all, the next week was the longest week of my life. Not only was I trying to recover from major surgery - the first surgery in my life - I was dreading the lab results. I alternated between telling myself that there was a very small chance my cancer had spread and telling myself that I've consistently beaten the odds in the wrong way. I scheduled my one week post-op with my gyn's office for 2/4. On 2/2, my gyn-onc's office called to say he wanted to see me the next morning. That night, I cried myself to sleep with worry.

Thankfully, my gyn-onc was able to tell me that my lymph nodes were clear, there were no cancer cells in the wash, and I should not need any further treatment other than close follow-up. He also told me that due to my age and family history, he felt that it would be fine for me to use HRT - that the risk would outweigh the "quality of life" issue. The plan right now is that I will see my gyn in six months (after post-op, of course) and get a pelvic exam, then in a year I would see my gyn-onc for another one - in essence, they would both be in charge of my followup. My gyn actually gave me a copy of the lab report form my surgery (I didn't even have to ask!). My cancer was staged 1A, which was a HUGE relief.

I will continue to update as I go through followups. For now, I am so grateful to have found this site - I would not even have known to ask about HRT after cancer without it.