Anyone with Stage 1a UPSC?

Rewriter said:

Congratulations, Culka!

Happy five-year anniversary to YOU.

 

xo

 

Jill

What a wonderful thread to read. So happy for all of you. Jill your positive and healthily lifestyle
Is paying big dividends.

Big hugs. Keep dancing! Mary Ann

I'm someone who is a UPSC survivor, checking in.  I was 61 at diagnosis.  I had surgery in Albany , NY in May of 2010 for stage IVB UPSC. I had a hysterectomy, bilateral salpingo-oophorectomy, omentectomy, and removal of a small amount of cancer in my ilium.  I also had an appendectomy and cholecystectomy in the same operation.  I had been told that I was to have robotic surgery, but the day of the procedure, the doctor had just looked at my CT scan (done at another hospital), and said he couldn't do it that way.  I was originally told by my OB/GYN (a different physician from the surgeon) that I just had a "Big Ole Polyp" that would be benign, but after D&C, he changed his tune.  Anyway, all my lymph nodes that were sampled were found to be benign.  I was told that I had stage IVB because the cancer had spread out of the pelvis.  I was never told a grade as far as I can remember.

I had chemo at another hospital where I worked, 6 rounds of carboplatin and taxol, and that's all I've had to have.  I heard somewhere that they don't do radiation for stage IV as it would be too big an area.  So far, I've been NED.  My last CA 125 was 8.  At diagnosis, it was only 94.  So many people on this site have had much higher CA 125's but they had a lower stage of cancer.  Weird, isn't it?

I had a couple of CT scans the first year and a half which were negative.  I had to have surgery for an incisional hernia this past August.  I thought that would be a much easier surgery than the first, but it was just as painful.  I was told that's because they pump you full of gas for the laparoscopy.  I was hurting more on the side opposite where the surgery was done.

I'm getting 6 month check-ups.  First, I get one from my surgeon, then I get one from my oncologist three months later.  So I'm really getting checked every 3 months by one or the other.  I still wouldn't be surprised to have a recurrence, but I haven't yet, knock on wood.  My mother had breast cancer in two different spots in the same breast ten years apart, her mother had breast cancer, and my father had prostate cancer, so I guess the tendency toward cancer definitely runs in the family.  But there is also a lot of heart disease, so I have my choice of what I'm going to die from, ha, ha.  My husband had a melanoma two years before I had my cancer, so we both see the same oncologist. 

I read on here about all the women who were taking care of family members around the time they were diagnosed.  I, too, was stressed with dealing with my mother, who was in a nursing home for 4 years, and I was stressed by my job.  My mother died two years before I was diagnosed.   I'm sure my mother's breast cancer was caused from stress, too, as she'd had a lot of issues with my little brother.  I retired from my job a month after chemo ended, so that helped my stress level.  My little brother, five years younger than I, died of a heart attack while I was still going through chemo.  He thought I was going to die, and I never thought he would die first. Such is life (or death).

I still had shortness of breath a few months after chemo (I'd been anemic), so I was tested.  My blood levels weren't low enough to be causing my shortness of breath, so my family doctor tested my ferritin levels.  He found they were very high.  It turned out I had an unusual form of hemochromatosis, a genetic defect where the body stores too much iron in its organs.  I had one gene defect not the normal two.  Hemochromatosis was just discovered in the late 90's, so a lot of research still has to be done on it.  They don't know why some people with the one gene defect get it and others don't.  Now, I have to have blood removed from me occasionally, where after surgery and during chemo, they were putting it back into me (I had several transfusions). 

I'll turn 65 later this year.  I wonder if I'd even be alive now if I hadn't complained about a small amount of bleeding three years ago.  I just hope it doesn't come back because I'm not sure I ever want to have another abdominal surgery!