I'm so, I don't even know, frustrated, scared, both? I'm stable on Lymparza. Status is one known tiny tumor in right lower quadrant and one also tiny questionable mediastinum. Each one <1cm in May 2021 CT. Primary occurrence 2019 with "optimal" debulking. I already had a complete hysterectomy in 2008. In 2019 I also had a bilateral oophorectomy, salpingectomy, omentectomy, appendectomy. In July2019 I was in remission but in March 2020 recurred achieving my current "partial response" stable status by October 2020.
My CA125 Friday was stable. 16. (It's been 16 even with the tiny tumor hanging out) since Friday I've been spotting. What the actual heck? And yes, I'm sure it's my vagina. That's a reasonable question because, WHAT????
I already have a CT scheduled tomorrow. My doctor knows and I have an exam next week, by which time I surely won't be spotting. I've always had postcoital spotting when I've had active CA but this isn't postcoital. There's been no coitus involved ☹️ does anyone have some reasonable idea what is bleeding? Some similar experience?
I'm not going down a rabbit hole where I'm sure I've got growth or a doomsday scenario. I just honestly feel like WHAT EVEN????
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TxEm
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Dear TxEmI am sorry that you have all this worry and obviously you do need to discuss this with your doctors. Sometimes when your pelvic area is very dry as a result of the menopause I know some people sometimes get a bit of bleeding but do get it checked out.
All the very best and I hope you don't have to wait too long for the answers.
Thank you so much for taking the time to answer! I've had a bit of postcoital bleeding off and on we have attributed to the dryness, but this is so unpleasant 😝
I can’t help with an answer but I know it does happen as a symptom. I’ve often scratched my head about it when someone mentions that as a symptom. Hopefully it’s just from dryness. Please keep us posted!
i hear you. had the same. nothing left to bleed. some spotting on a couple of days which i put down to riding my bike after a long break. then a month or so later, a little more. didn't continue though. just left it.
Just to keep y'all in the vagina loop, I saw the oral medicine doctor today and believe it or not I almost didn't mention my vagina to her, but somehow it came up and good news! My funky mouth problems could be making my vagina bleed! I mean, she didn't see how that was such exciting good news to me, but she doesn't live with ticking timb bomb tumors either so there's that. I have to get a biopsy (of my tongue) and of course I still had the CT yesterday (results pending) and I see onc Wednesday and he will do a internal exam but in the meantime I feel crazy relieved! Please stay tuned for the continued vagina saga.
As an aside, I've developed now three autoimmune diseases since cancer/chemo - pure red cell aplasia, microscopic lymphocytic colitis, and now this mouth thing definitive DX TBD. Anyone else?
Oh my gosh you have been through the ringer. I cant comment on any of the new diseases that you are facing but my your fortitude and humor is so very commendable. Keep us up to date with your ongoing saga. Wishing you the bestDebbie from San Diego
My CT is stable. My baby tumors are still babies! My oncologist did a vaginal exam and there was nothing obvious to cause bleeding but I looked "sore and inflamed.". So all the heat is on the oral medicine doctor now for an actual explanation. 😂
He did prescribe premarin in case the bleeding was due to friable tissue, he said it was low risk since my tumor biopsy showed HGS but of course my insurance would like very much to not pay for it 👎🏻🙄 so the insurance company and I have to Duke that out. 🤼 I think they might underestimate the amount of energy I am willing to expend arguing about my vagina. Trust me Mr Insurance Adjustor I am personally invested in this situation
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Here's what the GYN said
borderline stage 3C tumour 
Freaking out and need some hope. CA125 jumped from 27 to 800 just 4 months after frontline.
