Bordering on cancer to Grade 1 experience so far
Just wanted to post my (almost) full story here in case there is anyone going through something similar. I hope nothing I say triggers fears. We’re all different. There were stories I read on here that I really hoped would be mine and then weren’t, but so far I’m doing okay on my own journey.
Symptoms: Red flag symptoms started about a year before my hysterectomy. For about 3-4 months my period would go like this: normal for 5 days, then maybe a day of no bleed, then start up again heavy bleeding for 10-14 days with large and new to me clots. Then a couple days no bleed, then spotting, then period would start again. I noticed very little cramping with all the extra bleeding, wasn’t in a lot of pain, felt like I was maybe anemic, felt lightheaded, but never had an abnormal CBC (although I didn’t have any blood tests during the height of my symptoms). Activity levels were normal. This was occurring between June-September, and symptoms decreased right around the time I made my first appointment.
Had watery discharge for years before this came up, and I was found to have bacterial vaginosis during testing before my hysterectomy. Really not sure if that has anything to do with the cancer. My doctor didn’t say it was related. I also had a random 2-week period when I was I think 38 (five years before hysterectomy). After this I noticed I was regularly spotting between periods, and I just assumed that was my normal. Saw a doctor for that and she didn’t make a big deal of it, didn’t order any tests. I wonder if that was the beginning of the AH/EIN, but who knows. So in total of possible symptoms I had 10-ish years watery discharge (may not be related, but since it’s a commonly noted symptom), five years spotting, one year with 3-4 months of 10-14 day periods with heavy bleeding, minimal cramping, and large, weird clots.
First steps: made an appointment with primary doctor in October. I didn’t have an established primary doctor when this was all going on, which slowed me down a little bit. I might have tried to make an appointment earlier otherwise. Told the doctor about my family history of fibroids and hysterectomy. Doctor sent me to get an ultrasound. Ultrasound showed 4 cm mass, thickening of endometrial stripe, and nothing else. Made appointment with gyno who reassured me that it was a benign fibroid, and we discussed myomectomy and hysterectomy options.
At this time I was pretty convinced I was just bleeding extra because of perimenopause and didn’t feel strongly about removing the mass. Gyno sent me to do an MRI I think to try and look for signs of cancer/precancer. MRI came back showing mostly what the US showed: mass invading myometrium less than 50%, likely to be a polyp or neoplasia.
Gyno offered to do either an endometrial biopsy or hysteroscopic myomectomy. Initially, after talking to a nurse in his office who said some scary things to me about how they couldn’t rule out cancer from the MRI, I asked for the biopsy, but after messaging with the doctor, he really encouraged me to get the mass removed. He didn’t see strong indications of it being precancerous or cancer, but it was going to have to come out and be biopsied at some point. So I got the myomectomy end of February.
Precancer: Pathology from my mass showed AH/EIN and focal areas “bordering on” well-differentiated endometrioid adenocarcinoma. I still can’t express how crushing this was. Thinking about it now I want to cry. My heart goes out to anyone who thought they had a benign condition and then finds this; to anyone whose doctor was “really surprised.” And from what I’ve read on here, it happens A Lot. In a way, I suppose that’s what happens to everyone. Nothing against the doctor. I needed that extra nudge to get it removed, and his note about thinking it wasn’t cancerous took some of the emotional weight off of deciding to do the myomectomy.
Next steps were then blood work for cancer antigens. My ovarian cancer antigens (CA 125) were elevated, but my doctor told me that this is common for premenopausal people, and they worry about it when I think they are over 200 or something. Mine were like 67 (If you want my specific numbers dm me or look at my earlier post). I also had a CT scan that showed no sign of metastasis.
My appointment with my Gyn Oncologist was at the beginning of April. She thought I had a 60% chance of having cancer since the “bordering on” cancer cells were found. I’m not trying to have children, so we planned the hysterectomy. It was laparoscopic robotic. Uterus, cervix, tubes, sentinel lymph nodes removed. Then during surgery a pathologist would look at the uterus to see if the mass that had been there had invaded more than 50%. If it had, they’d go back in and take out my ovaries same day. I think at that point they would have also checked the nodes and possibly have removed more lymph nodes higher up in my torso.
Surgery was May 7th. I was really worried that it would be cancelled. At my first oncology appointment, I had a pretty bad cold. The doctor said there was an opening to get the hyster done the next week, but I had to get over the cold first. And then at the beginning of May I started to get seasonal allergies which included a cough, so I was worried we’d have to reschedule and my husband has a very busy May and… I was just so freaked out that my allergy cough would cancel the surgery. It ended up being no problem at all. Like I emailed the doctor the day before, she said I sounded fine but would be evaluated by anesthesiology, and there was zero concern day of.
Hysterectomy, from my perspective, went smoothly. They found less than 50% invasion and a nodule that was suspicious of endometrial cancer, so my post surgery diagnosis was still “bordering on” EC. I got a call from the doctor five days post op that the nodule was in fact cancer, FIGO grade 1. Invasion 20%. It’s unclear to me whether it was part of the removed mass or not. No cancer found anywhere else. I’m waiting for stage because she is I believe presenting my case to tumor board, and I think they come up with a consensus about stage at that point. But she did say no further treatment—I think. It’s like the most important things she tells me are the things I can’t remember.
So that’s where I’m at. It’s strange to go back and read this condensed version of what happened. Between every test and every result there was a gap of very painful waiting and wondering and googling, and reading reddit, and crying and despairing. So if you’re at that point and you’re reading this, the only way out is through. And you can’t know anything until the time comes, but the time will pass.
I think the moral of the story, and what I would tell myself a year ago, is you know your body the best. The internet might say you don’t fit risk factors and that this cancer is rare for people like you, or maybe it’s just perimenopause, but if you know something is wrong with your body, talk to a doctor. Even if you’re attached to being healthy, or you think you can handle your weird period, or you don’t like needles, or you don’t like being examined (these are my excuses), talk to a doctor. Even if it isn’t cancer, bleeding constantly is unacceptable. You don’t have to live that way.