4 ms·

Internal squamous cell carcinoma originating on an ovary. It never "masqueraded", it was just the kind of thing that causes a person to complain about uterine p

Internal squamous cell carcinoma originating on an ovary. It never "masqueraded", it was just the kind of thing that causes a person to complain about uterine pain, which in turn causes every doctor they seek help from to apparently turn their brains completely off and blame it on either a UTI or menstruation. The more detailed misdiagnoses: heavy but otherwise normal periods from enlarged fibroids causing anemia, a UTI, and then a 7x4cm benign dermoid cyst. (A ROMA test prior to surgery came back with an exceptionally low score, which the gyno surgeon assumed excluded cancer as a possibility, and other tumors on an ovary wouldn't get that large in her opinoin. There was no actual proof of it being a dermoid cyst.) The cancer wasn't detected until lab analysis of the removed ovary and uterus showed it had been completely subsumed by cancer. Even then, after the surgery but before the labs, the surgeon said she thought it was endometriosis based on the scarring, which was actually from the cancer's spread. The surgery to remove the ovary was considered elective, because the tumor was never considered cancerous until after the surgery. The surgery request was put in between February 23 and 26 to be scheduled ASAP, but insurance stalled on the prior approval until after all elective surgeries here were cancelled due to COVID-19 capacity concerns. (Hospitals never came close to hitting capacity here during the span, and the hospital that eventually did the surgery in June had nearly empty ORs for two weeks prior.) The imaging in February hadn't shown any of the scarring, or the spots on other organs showing it had spread, that the post-surgery imaging in June revealed.

cmrdporcupine 6y ago
Oh man, this is terrifying, and here's the thing... how many of us or our partners start having erratic or 'strange' periods in the pre-menopausal, mid-40s, etc. points of their life? It's happening for my wife -- extremely short cycles, sudden intense periods, etc. and the doctors are kind of like "well this is within the bounds of normal"; not the exact same set of problems as you describe, but some overlap... but the doctor is young, it doesn't feel like she's taking my wife's concerns seriously. Do you have any advice on the kind of testing that _could_ have diagnosed your partner's situation earlier? And... wow... glad to not have to deal with the insurance situations you describe. But here the challenge is getting them to take you seriously enough to get access to imaging.
- trynewideas 6y ago
  > 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. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/

cmrdporcupine 6y ago

Oh man, this is terrifying, and here's the thing... how many of us or our partners start having erratic or 'strange' periods in the pre-menopausal, mid-40s, etc. points of their life? It's happening for my wife -- extremely short cycles, sudden intense periods, etc. and the doctors are kind of like "well this is within the bounds of normal"; not the exact same set of problems as you describe, but some overlap... but the doctor is young, it doesn't feel like she's taking my wife's concerns seriously. Do you have any advice on the kind of testing that _could_ have diagnosed your partner's situation earlier? And... wow... glad to not have to deal with the insurance situations you describe. But here the challenge is getting them to take you seriously enough to get access to imaging.

trynewideas 6y ago
> 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. [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/