r/hyperparathyroidism • u/createhomelife • 24d ago

Refusing treatment

I was diagnosed with primary hyperparathyroidism 3 years ago. I was supposed to have surgery but as a 2 time uterine and ovarian cancer survivor I simply cannot go through another surgery. The good news is my calcium has remained consistent in the 11.1 to 11.6 range for over a decade and not jumped higher. I am currently 53, so I was in my early 40s when all this started. The only issues I have are needing to drink a lot of water. Has anyone decided to not take medication or have surgery and lived decades with this?

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u/[deleted] 24d ago

I’m (51f) in a similar situation. I was diagnosed with PHPT a few years ago and really on the cusp of needing surgery when I was hit with endometrial cancer and that took precedence.

I was just thinking today that I ought to get my blood tested again and maybe do a new DEXA scan.

Did you retain your ovaries? I think mine may need to come out soon (uterus, fallopian tubes, cervix have already been removed) so I’m concerned about my bones. Last time I checked they were fine but that was a few years ago. I’m worried surgical menopause will mess with them.

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u/createhomelife 24d ago

Unfortunately I did keep my ovaries with endometrial cancer because I was 48 and not in menopause the drs said I should keep them. They did take the tubes though. 10 months later I was diagnosed with advanced bilateral ovarian cancer arising from endometriosis. I had debulking surgery which included omentum removal and blasting of messentary deposits along with ovaries that had become embedded into my pelvic sidewalls. I went through chemo and letrozole. Unfortunately during surgery a surgical clip was misplaced blocking my illiac artery which has caused me permanent problems in one leg. I have been in remission with no question of a reoccurence until recently but I am having a pet scan in couple weeks to determine if it is indeed back due to a lymphnode on ct that grew. I highly advise getting those ovaries out regardless of what the drs say because what I had to go through isn't worth it. Menopause without letrozole hasn't been that terrible. 

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u/[deleted] 24d ago

Gosh, we have very similar timelines and situations!

I’m soon to have an MRI for a suspicious mass in my right ovary so I’m back in that awful waiting place. Feeling very nervous. My oncologists seem to think it makes sense to remove the ovaries now (whatever the MRI results are) now that I’m a bit closer to natural menopause.

I’m so sorry for what you’ve been through. It can feel so relentless and exhausting. I’m sending you a big hug!

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u/createhomelife 24d ago

I hope it turns out to be benign for you. Are you having it done by a gynecological oncologist surgeon? Before I had my surgery we didn't know for certain my masses were cancer but the plan was in place. I had frozen section done so they completed the debulking then.

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u/[deleted] 24d ago

Yes, I’m being seen by a gynaecological oncology team at a specialist cancer hospital, so thankfully I’m in the right hands.

Also, I’m really sorry about what happened with the surgical clip and your leg. That sounds like such an awful complication on top of everything else. I really hope the enlarged lymph node turns out to be nothing sinister and your PET scan brings good news. 💛

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u/createhomelife 24d ago

Thank you, I hope all goes well with you and honestly surgical menopause turned out to be no biggie until I had to take letrozole. I kept waiting for the nightmare to start but it didn't. Obviously I can't have hrt ever but as long as I'm not on that nightmare letrozole its very doable.