Today we saw Dr. G for what was supposed to be a quarterly check-up.
But because my CA-125 has gone from 146 to 197 to 253 to 409, and the radiologist who did the report on the CT scan seemed to think there might be some oddities that needed addressing, like additional thickening or nodules on the peritoneum, and some fluid or ascites build up, we have been resigned to the fact of recurrence.
It has been pretty emotional and hard to take. Reading scholarly things online seem to indicate that recurrence makes it that much less survivable. So we’ve been trying to swallow that jagged little pill or come up with reasons and rationales where we don’t have to. Sigh.
So we have sort of been dreading this on some level. “He’s going to tell me to go on oral chemo, I just know it. I don’t want to do chemo again. I don’t want to lose my hair again. Maybe I can go up to that on clinic in Canada.” Etc.
I had already been put on the volunteer schedule months ago to play piano, so I did that for an hour before my scheduled appointment. That was really helpful to me as well as to anyone else listening. Music therapy. Ahhh.
Oh, also, I met Rocky the therapy dog as he was leaving and that was also helpful to me. I think he was a golden-doodle. So cute. Animal assisted therapy.
It became time to go to my appointment at 1:30 only to discover that of all the doctors listed Dr G was the only one running very far behind. This normally wouldn’t matter but Dr W was super cool to arrange a phone consult with us at 2:30 even though technically she is on vacation.
We moved into the land of nail biting about whether we’d be able to keep that appointment.
Well luckily we did. And this is how it happened.
After much waiting Dr. G breezed in, talked about the increase in numbers, and the CT scan, and how he basically thought there was not much of concern showing on it. !!
So he offered us three options:
- Wait and see and do a retest & rescan in six weeks
- Do a laparoscopic exploratory and debulking surgery now, and send off any samples for molecular testing for targeted treatment, and if warranted there would be an additional 3-4 rounds of IV chemo and PARP inhibitors, as I am HRD+ and they’ve been shown to be very effective in that case, or
- Just start with treatment right away.
Well neither Grant nor I are interested in treating without more info. So we’ll go with 1 or 2.
But he’s totally cool with us having time to sleep on it and get back to him. It’s totally my choice, he said. Of course it is.
Additionally, he said that there is research evidence that there is no benefit to treating an asymptomatic patient. That is me. I’m really not having symptoms. Just this number going up. And he said something to the effect that ovarian cancer is becoming more and more a chronic illness and if you’re going to live with the disease for 10-15 more years you don’t want to burn bridges and use up all your resources right off the bat. We were really glad to hear that on multiple levels.
So basically he’s treating it as not that big a deal. Laparoscopic would be easy, one day, in and out, and even using the same entry point as before. He checked my body for signs of fluid retention and didn’t see any.
He said he had thought he was going to come in and I was going to look bad, but instead I look great. So I think we all had a better appointment than we thought we were going to have.
So then we had the phone consult with Dr W, filled her in, and she suggested a fourth option. Do the laparoscopic but in a couple of weeks, to allow my body to really get back to 100% after this cold/flu thing that Grant and I have had. We all suspect Dr G would be fine with that.
In the meantime she has put me back on a pre-surgery protocol to help my body really be ready for it.
We also asked her about the clinic in British Columbia, Canada that she had recommended. She said I’d need to spend 4-6 weeks there, and in an ideal world I’d do chemo simultaneously with hyperthermia treatment. I might have a hard time getting chemo in Canada and hyperthermia cannot be done in the U.S. But I could possibly go after doing treatment here.
In any case she is recommending that they get as much out surgically as possible, before any further treatments. She too mentioned that ovarian cancer can be a chronic illness, but with naturopathic integrative we can go beyond that, and well and truly get me into remission, with the inference being that then we would keep me there.
So some of my parts are feeling so much better. Tons better. Not the grim session we had been expecting.
Thanks for your attention!