Real People Stories – Sadie
Shouldn’t CA125 test doctors be sued for misdiagnosing women with a benign cyst that turns out actually to be cancer? I feel like women are getting the short end of the HPV Test stick in medicine more than men because men are willing to get angry and stick up for themselves, while a lot of women act “understanding and accommodating” even when doctors f* up!
According to ultrasound interpretation, women have been told many stories. Stories that they had a benign cyst, only for the doctor to months later do exploratory or removal surgery and then say, “Whoops, it was cancer” 😡.
And now I don’t know what to do about my situation.
I had a CT one year ago that showed a 4 cm Multilocular adnexal mass. Eight days later, I had a pelvic ultrasound where the sonographer claimed there was nothing there. Like just magically disappeared 🙄. At the time, I had no symptoms. But this menstrual period, I get very heavy periods. Awful abdo pain like my intestines were being strangled. Bloating, built-up gas causing pain, back pain, and bleeding between periods. Much “cervical mucus-like” discharge on my underwear, but no infection. Hence, I had a pelvic ultrasound yesterday, and according to this new sonographer, the mass is still there!
So, which sonographer needed to do their job properly? I don’t know if I can trust them because she tried to do such a rush job yesterday and then claimed it was just a cyst. When I tried to ask questions about what criteria they use to determine between cyst vs cyst that has become cancerous…. it was like she didn’t even know what I was talking about! She has no training to understand that cysts themselves can sometimes turn cancerous; how can I even trust that anything she reports on the results will be accurate!?
Leah
I went to urgent care and had an x-ray and ultrasound. They asked me if I was pregnant, I said no but I looked 7 months pregnant! The diagnostic sonographer was pushy, and I felt dizzy after she rushed me off the table. I never ask them questions because the sonographer communicates with the doctor, not the patient.
Stayed in urgent care the whole day, and the DO who saw me said it was probably not cancerous but referred me to a GYN. Waited the whole day just for him to tell me this. I got in when they opened and left at 9 pm! Had appt with a newer GYN, and he did a Pap smear that made me spot for 24 days…?
I visited another GYN doctor (I prefer him to my GYN onc), and he said he’s referring me to oncology after getting a result of 465 on my CA 19-9. He is sincere and compassionate and looked dead into my eyes that I might need staging…
After I met my (arrogant) HPV gyn-oncologist, he said, “Doubt it’s cancer,” because my CA-125 and other results were normal. Little did he know he thought ex-lap would take 45 minutes to remove the complex cyst. But it lasted 4 hours after the HPV pathology test indicated it was mucinous adenocarcinoma of the right ovary.
Many other things happened, but long story short, they all told me not to worry and that it was most likely benign. Maybe they were trying not to make me panic? I don’t know, but I resent some people I met in the medical field during this journey. The mass I had was 30 cm in diameter 😢
Aubrey
I’m 59 with a history of endometrioma, and the pelvic pain came roaring back when I went on HRT earlier this year. For years, I’ve been having severe bouts of stomach pain followed by diarrhoea. And I was given pantoprazole. It didn’t work. I know that is a symptom of ovarian CA125 levels tested for cancer. My left ovary now has three different cysts. One of which is an endometrioma.
Cancer CA125 markers are normal, but my new gyn oncologist. I found a new one because the prior one could not get me in for surgery till the end of May. And there’s a 50-50 chance it’s cancer. I’m ready for surgery this upcoming Monday. IMHO, all women should be given the option of annual HPV tests and screening and have it covered by insurance. I’m so angry at our sexist, money-hungry system. Time counts with ovarian cancer; weeks or months can make a difference in prognosis for treatment. If I make it through this, I will become an activist on this issue. If insurance doesn’t pay for it, we should have a non-profit that raises money for it. Free HPV screening for women who want it and do education should be the norm. Screw the system is mostly run by men.
Aurora
I was diagnosed two years ago with Ca125 issues. And I’m a very anxious person. After being NED (no evidence of disease) for nearly two years (knock on wood). My CA 125 increased by less than a point at my most recent appointment. Since then, I’ve been overwhelmed with fear. I imagine the worst.
In addition to HPV therapy and antidepressants, finding online support communities has helped me. Overcome has an excellent message board, and there are also helpful CA125 Facebook groups. Sometimes, I spend too much time there worrying more, but connecting with others with similar experiences is reassuring.
Can anyone offer valuable advice?
I’ve found hearing from long-term C A125 survivors particularly helpful. Yes, the HPV statistics aren’t as encouraging as we’d like, and eventually, the disease might get the better of us. There can be a lot of suffering in the meantime. However, on a day-to-day basis, you have to hold on to hope and assume that you’ll be one of the ones who bounce back and continue to thrive. Seeing people survive CA125 issues come through the cancer portal and achieve relatively good outcomes is very reassuring. Everyone’s journey is different. And forget that many people with ovarian cancer don’t die from it. Others get many good years before HPV causes serious problems. Who says you can’t be one of them?