> Do you have any advice on the kind of testing that _could_ have diagnosed your partner's situation earlier?
I'm not a doctor, but in our case squamous cell-specific antigen tests. And they won't be effective unless the tumor is already relatively advanced.
Barring that, abdominal imaging and an ovariectomy, which is what we eventually got ordered -- as noted the challenge was getting my partner's uterine pain taken seriously enough to warrant a referral for imaging, then fighting the insurance company to get prior approval in a timely manner.
Toward that point, it would help to measure the amount of bleeding as best as you can, just to have a baseline, and also to frame as precisely as you can how erratic her cycles have become. My partner used period tracking apps to collect frequency and length data, and kept their own log to measure relative intensity and the amount of blood. A menstrual cup was key to the latter, and it was a big adjustment to switch to one, but wound up being the empirical data needed to take the pain complaints seriously.
If you want to dive into some literature, a 2014 study [1] does a good job describing the relationship between ovarian cysts and ovarian squamous cell carcinomas. I can't stress enough that my partner's condition is rare (in this study, 4 out of 6,260 MCT patients), but not unheard of, and I can say at least from personal experience that this six-year-old assessment of it hasn't really changed:
> Since there is no definite symptom or sign, even in radiologic imaging, it is challenging to preoperatively diagnose ovarian SCC arising from MCT unless the tumors are advanced-stage. Thus, most cases reported to date seem to be diagnosed by postoperative histopathologic analysis. However, an unexpected diagnosis of tumor malignancy during surgery may interrupt performing complete surgical management at that time, which can adversely affect prognosis. Moreover, it is well recognized that SCC-MCT has a poor prognosis, and no standard treatment is available because of its rarity. ... More evidence supporting these strategies for the management of SCC-MCT by large, multicenter studies is required.
I'm not a doctor, but in our case squamous cell-specific antigen tests. And they won't be effective unless the tumor is already relatively advanced.
Barring that, abdominal imaging and an ovariectomy, which is what we eventually got ordered -- as noted the challenge was getting my partner's uterine pain taken seriously enough to warrant a referral for imaging, then fighting the insurance company to get prior approval in a timely manner.
Toward that point, it would help to measure the amount of bleeding as best as you can, just to have a baseline, and also to frame as precisely as you can how erratic her cycles have become. My partner used period tracking apps to collect frequency and length data, and kept their own log to measure relative intensity and the amount of blood. A menstrual cup was key to the latter, and it was a big adjustment to switch to one, but wound up being the empirical data needed to take the pain complaints seriously.
If you want to dive into some literature, a 2014 study [1] does a good job describing the relationship between ovarian cysts and ovarian squamous cell carcinomas. I can't stress enough that my partner's condition is rare (in this study, 4 out of 6,260 MCT patients), but not unheard of, and I can say at least from personal experience that this six-year-old assessment of it hasn't really changed:
> Since there is no definite symptom or sign, even in radiologic imaging, it is challenging to preoperatively diagnose ovarian SCC arising from MCT unless the tumors are advanced-stage. Thus, most cases reported to date seem to be diagnosed by postoperative histopathologic analysis. However, an unexpected diagnosis of tumor malignancy during surgery may interrupt performing complete surgical management at that time, which can adversely affect prognosis. Moreover, it is well recognized that SCC-MCT has a poor prognosis, and no standard treatment is available because of its rarity. ... More evidence supporting these strategies for the management of SCC-MCT by large, multicenter studies is required.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/