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6 years later and still looking over my shoulder

nov300
Posts: 1
Joined: Nov 2006

I was diagnosed with hyperplasia and low grade endometrial cancer in Aug. of 2000. I was 28 years old. It was discovered because my husband and I wanted children and I was having a hard time conceiving. I was also diagnosed with PCOS. I was referred to one of the top hospitals and had the head of the gynecological cancer group. They were great!!! Because I wanted to have children, and they felt they had caught it VERY early, they put me on high doses of a drug called Megace and every three months performed a D&C. The first round cleared out the cancer but the hyperplasia was still present. The second round showed a decrease in the hyperplasia, but still present. I was told they had never had anyone go on to a round three, but we were going in the right direction so we kept going. I went through round three and the D&C came back clear. Nov. 3rd, 2000 is the day I was told I was cancer free and tomorrow it will be 6 years. My daughter will be 5 in Dec. and my son just turned 3. They are my life! After I was declared cancer free, I was told I would have a very hard time having kids and I should consider adoption. Four months later I was pregnant with my daughter. I was told that I was very lucky and I would have problems if I wanted any more. Shortly after my daughters first birthday I found out I was pregnant with my son. I was told they were writing papers about me at Harvard Medical School. My oncologist told me my cancer was cured and not to worry about it anymore unless my cycles became abnormal and I should stay on the pill until after menopause - that has a lot to do with my PCOS. My other doctor wanted me to have biopsies periodically so I did for a while and everything came back clear. Now I'm approaching six years tomorrow and I approach it with trepidation. I'm so pleased that I have made it six years and I'm so scared that I will hear those words again. I had no abnormal symptoms besides the fact that my period would only show up every three months or so. I never went longer than three months between cycles. I'm very regular now. I guess I read the stories of woman that have had hysterectomies and it's in the back of my head that mine could always come back because I didn't go that route. When I went through treatment in 2000, I was told that I was only the 13th person my oncologist had ever treated this way, but he felt I was a perfect candidate or he would have recommended a hysterectomy. I also had other opinions that felt I was a good candidate for this treatment. I did ask if I should consider a hysterectomy after I was done having children and was told no unless my cycles became irregular again or other symptoms appeared. My oncologist is very well respected in his circles and was a GREAT Dr. I'm curious if there are any other woman out there that have any similar experience and how they feel as time goes on. Thanks!

tlva
Posts: 56
Joined: Nov 2005

Well it's only been 18 months for me since my diagnosis and surgery, and of course it is in the back of my mind. The experience is a part of me, but does not define me.
I have received so many blessings and look at life so very different now...it's even more beautiful!!!
None of us are guaranteed tomorrow. Any of us could step off the curb and be hit by a bus, but that's not going to stop me from crossing the street!!!

Congratulations on your anniversary! Now get on with your life!!!

m4favre
Posts: 3
Joined: Oct 2006

Thanks so MUCH for this posting. I am older than you were, but still young enough to want children and really needed this today! I had my appt yesterday and they are pushing for hysterectomy but mentioned the option of hormone therapy which I am considering and will get another opinion. Best of luck in the future and thanks for the hope!!!

groundeffect
Posts: 651
Joined: Mar 2003

I hope you can take comfort in the fact that you won all of this time (and maybe All of your time) free of this cancer, and stop worrying about it so much. You're aware of what you need to watch for, and because it's typically a slow-growing disease (and, most important, relatively easy to treat at low-stage), you already have "a leg up" on women who don't suspect they have it.

How wonderful it is that you have been able to have children after your diagnosis! I think your story will be inspirational to other women who suspect they may be in similar situation; I hope you'll post a personal web page (it is really easy), and will update every few years as you prosper cancer-free!

antigone_42
Posts: 8
Joined: Jan 2011

Thank you so much for posting this. I am the middle of round 1 of the Megace treatment and have been nervous and scared about whether or not it can actually work. Reading your experience lets me know there is hope that this can turn out well. Thank you!

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