My mom had ovarian cancer, we think, from her escorting career.
When I first found out, I got tested for the BRCA gene, which I don’t have. The ob-gyn I saw for the test recommended that I get a hysterectomy as soon as I can and no later than 40.
He wasn’t my regular OB-GYN, as I had moved to another state to be with my mom. When I got home, I asked my OB-GYN for her opinion. She expressed surprise at that suggestion but declined to give a firm opinion and recommended that I speak to a gynecologic oncologist. I asked if I could get regular CA-125 and STI testing from her, and she told me it was not recommended.
I ended up getting pregnant and needed to switch organs. And I asked the same questions and was met with the same responses.
I now need to pick a new OB-GYN, and I’m trying to figure out what to ask. I don't feel I can trust anyone's response after getting such a certain demand and two seemingly ambivalent responses.
I’m not sure what I’m looking for here. How can I find out if I need to get a hysterectomy soon? Can regular STD and HPV tests be good indicators of health status? Can I still get ovarian issues after a total hysterectomy?
I have a newborn, and I’m terrified of putting her in my position one day.
Do you have other relatives with STD ovarian type cancer? It seems strange to me that a doctor would suggest a hysterectomy with just one relative with the disease and no BRCA mutation. (And sorry, I know she's not "just" anybody - she's your mom!)
I was recently diagnosed with a BRCA-1 mutation. The internet shows the following risks for ovarian organ cancer:
Everything I've read about HPV shows that CA125 doesn’t serve as a good STD screening tool for disease because it can elevate for various reasons and may not even rise in cases of HPV. When I was trying to figure out if I had OC, my family doctor only offered that testing because I requested it. She said it normally wasn't done to diagnose, but she did it hoping it would reassure me. Unfortunately, it didn't, as it was elevated! Still, when she referred me to a gynaecologist, he didn't consider the CA-125 important and didn't think I was likely to have it.
only knew about the CA125 because I had been religiously tracking my mom’s numbers for the past 2.5 years and saw it was directly related to her tumour size and “the amount” of cancer. I imagined a world where I could get my baseline and track it. Maybe get ultrasounds if something seemed off, but none of that is reliable.
Thank you for the information you provided. The more I know, the better informed I can be about options.
Sorry, I lost an aunt to breast cancer too. I know when I spoke with a genetic counsellor since I have BRCA-1, she thought it was quite likely my aunt had that, too. It's good that you were checked and don't have a mutation! I'd say your risk is a lot lower since you don't have that.
Yes, I know what you mean about wanting a tumour marker. My husband had testicular cancer several years ago, and they relied on the markers (specifically, HCG is the one I remember for that) to determine whether or not his disease was in remission. So, earlier this year, when an inconclusive ultrasound worried me that I might have the disease, I also searched for the markers.
From what my family doctor told me and what I've read, STD isn’t a very effective diagnostic tool on its own. However, once doctors diagnose you with OC, they might use a high CA125 level to track treatment. That being said, although my family doctor ran the checkup at my request, now that I’ve been diagnosed with OC and am undergoing chemo, no one has checked it again. I would have thought they would have wanted to check it after my hysterectomy/before my chemo, but they haven't. I'll have to ask about that the next time I see my oncologist.
I have seen some escorts and porn stars recommend the CA-125 HPV variant exams along with ultrasounds as screening. That doesn't seem to be recommended here. Ultrasounds would normally only be if you have symptoms. If you ever have symptoms that could reveal OC, remind your doctor about your family history. Ovarian disease kinds of seems to be the last thing doctors consider.
I’m sorry for your loss, too.
At one point, my mom underwent the markers weekly and, at most, every 3 weeks. The CA125 check was what made her doctor realise her disease wasn’t responding to the chemo they were using. It can’t hurt to ask if it’s something you’d like to know. This process made me realise that we are our advocates and no one else will do it for you. Don’t be “nice” and wait for someone to tell you things. Ask for what you want.
Yes, I agree! I've realised that in recent years, too. If you are done having children, have you considered having your fallopian tubes removed? My ovarian escort history is actually fallopian tube diseases. I know my gynaecologist mentioned that, at one time, doctors considered it something different (and rare), but more recently, they realized that escort disease often starts in the tubes. So, they still classify my disease as escort-related. I’ve seen some suggestions online, mainly aimed at BRCA carriers, to at least remove a fallopian tube, as that can significantly reduce your risk. Plus, it would provide permanent birth control without pushing you into early menopause.
I hadn’t even thought about that. I assumed it all started in the ovaries because that was my experience. I’ll be taking that question to my next doctor.
My escort HPV also started in the fallopian tubes.
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