Scary.

November 20, 2009

So yesterday I went to see my doctor for the post-game wrapup session. The surgical report, see how everything is healing up. Oh yeah, find out about the pathology report which I’ve been trying so hard not to obsess about over the past 2 weeks post-surgery.

The healing is going well, especially when I don’t overdo it, and more and more even when I do.  I have almost no pain now and haven’t taken anything stronger than Tylenol for over a week, and nothing at all since Monday.  He said everything is healing well, all the inside stitches seem to be doing what they’re supposed to, and he gave me some treatment to stop the end of the discharge/bleeding that’s been continuing.  The treatment lasts one week, then I can take baths & go swimming.  (And make whoopee, although before we saw him my husband & I agreed to tack another week or two on to the healing time no matter what he said, because he never seems very conservative with healing).

Surgical report had nothing special in it, nothing he hadn’t told me when he came to discharge me from the hospital, so no surprises there.

Can you feel it building up?  Yeah, so could I.

The pathology report was in, and it wasn’t perfect.  I mean, it’s fine, I most likely don’t need any further treatment (to be confirmed today or Monday at the tumor board meeting held today).  But instead of a nice pre-cancer state of affairs (my pre-surgery diagnosis), they found cancer.  And not even the earliest stage of endometrial cancer, but a tumor that had started to invade the uterine wall.  Official stage is 1B in the old staging system (they just changed all the staging classifications in the last few months).

What does this mean?

  • Well, for one thing the decision to go ahead with the hysterectomy instead of pushing my luck with hormonal treatments was clearly a good one.  With a tumor already penetrating the uterine wall, I could have easily been one of the scary 5% who have their disease significantly advance despite hormone treatment.   The risks of the hormone treatment seemed out of hand already when I thought we were dealing with pre-cancer, but now I am very reassured we went the surgical route.
  • Maybe this explains why we had such a difficult time having a baby.  Sure, my age has a good amount to do with it too, but my hormone tests have been okay and we have had many shots at good embryos or good timing with IUI & maybe nothing could really stick around & grow because of so much abnormality in my uterus.  One thing for sure, the feeling I had in June that my embryos would have a better chance in someone else’s uterus (surrogacy, which we are pursuing) is clearer than ever for me.
  • Keeping my ovaries long term may not be a good idea.  In fact, I’m not so sure about keeping them shorter term either, and have been thinking a lot about this.  Since most of the time they remove them without discussion there is basically no data on what kind of risk I’m running.  I will, of course, have lots of follow up testing and monitoring to try to pick up anything amis, but I do wonder how effective that is.  I need to give it some more thought, but will likely go back to one of my second-opinion doctors from June and get another person’s thoughts on this.
  • Do I do another re-reading of the pathology?  What will it prove, what will it help? The decision to do or not do anything will probably be based on what the second opinion doc says.
  • I know I face years of worry – intense during the testing phases as they come up (more frequent in the first years, then decreasing, then much less frequent as time goes on).  That worry factor probably would have been there with another diagnosis, but is obviously increased now.
  • Good luck getting me off the carb-restriction thing.  I started the carb-restriction stuff just for weight loss several months before the diagnosis.  Then as I was researching what wellness changes to make I saw all kinds of stuff about how sugar feeds cancer.  I was already liking low carb because I felt so good, no hunger & it was working for my weight, but the sugar (and other carbs) feeding cancer thing sealed the deal for me.  Still does.

Otherwise, the pathology results of pre-cancer, stage 1A or stage 1B have the same further treatment recommendations : NONE.

So in some ways I’m worried about nothing.  On the other hand, I found out yesterday that there is a big difference emotionally between pre-cancer & cancer, even if the physical treatment side is the same.

I don’t know if my reaction is normal or not.  My husband seemed to think I was creating drama when we had “good news”, but since I had really focused on having either the surgical result be pre-cancer or stage 1A I admit I was really shocked & scared when my surgeon told me of 1B.  I do think it’s something I’ll need time to process.  Luckily I have a new counselor who I am really liking.

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