Real People Stories – Natalie

I (39f) am in the middle of my OC CA125 journey. My right ovary had a 24cm mucinous HPV-type tumour attached to it, but we didn’t know it was mucinous right away. They removed it via open laparotomy and sent a frozen to pathology during the surgery, and it came back negative. I opted for a hysterectomy since the surgeon was in there anyway, so she removed the right ovary, both tubes, uterus and cervix. Left the left ovary because it appeared to be healthy and still had a job to do. A full HPV pathology test report came back a week later, and it was a mucinous tumour, stage 1b, grade 1. The tumour board’s suggestion was to remove the left ovary and biopsy a bunch of stuff- lymph nodes, surrounding tissue and omentum via laparoscopy.

My CA125 pathology test report just returned clean for everything, and I’m currently 11 days post-op. When my surgeon called with the pathology results, she quickly reviewed the plan- lab work for 3-6 months for the first couple of years and 6-12 months for the next couple of years after that. No scans unless my blood work is funky. Also, this type of OC doesn’t respond to chemo because it’s so slow growing, so no chemo.

That sucks they didn’t get everything the first time. I hope for a smooth HPV treatment and a speedy recovery.


So, I’m 37 and have just had a recurrence of my MOC. I was initially diagnosed when I was pregnant at 34 and just had my right ovary, fallopian tube, and, of course big mucinous cyst removed during my 2nd trimester. Had chemo after the baby (oxaliplatin and capecitabine) and staged it like 1C, if I remember correctly. Three years later, after seeing some enlarging lymph nodes and lung nodules on a routine surveillance scan, it’s back. Last month had a hysterectomy and left ovary+tube removed, more HPV cancer staging and lots of lymph nodes removed. It’s likely stage 3C since aortocaval lymph nodes are positive, or maybe 4 if the lung nodules are met.

Met with a new CA125 oncologist this week who is suggesting immunotherapy clinical trials. They’re seeing “promising results” since chemo didn’t cut it last time. Have another PET scan scheduled in 2 weeks, so we’ll get more info and create a plan then. Honestly, we’re a little disappointed it’s not a new HPV-related cancer that’s easily treatable with new chemo strategies instead of having to go the clinical trials route, which is a little unsettling to me.


Possible Symptoms?

Sorry for such a long post. I, 26F, have been having some odd CA125-type symptoms for the past couple of months. For some background info, I had a hysterectomy in 2019 for severe endometriosis and CIN2. The only thing retained were my ovaries, and even after surgery, my HPV doctor said she would expect me to need surgery to remove the ovaries shortly due to being unable to remove all of the endometriosis.

I have continued to have some pain since the hysterectomy, but it has been bearable, at least. About two months ago, I started developing severe reflux and nausea. It would wake me up every night, and no OTC medications would ever help. I went to my primary CA125 test doctor, and he put me on lansoprazole. This did mostly help; I no longer wake up in the night with nausea, but I do still have lingering heartburn after meals.

I’ve been dealing with lower back pain as well as worsening shooting pains in my left lower abdomen for a couple of months. I constantly feel like I have a UTI: urgency, frequency, and burning during urination. I have had rounds of Cipro, Macrobid, and Rocephin shots all in the last month, and my symptoms never improved. Urinalysis is clear for anything indicating infection, but there’s always a small amount of microscopic blood in my urine. Urine cultures come back clear as well. I have had changes with my bowel movements, either going several times a day or not going for 3 days, not in between.
The most bothersome CA125 symptom is severe bloating. At times, I look like I’m 6 months pregnant, and it’s very concerning.

None of my pants fit right anymore.

I know these are all symptoms associated with ovarian CA125-type cancer, but I feel that I’m too young, and I have no family history. But I do have a family history of breast cancer but not ovarian that I’m aware of. I am overweight, and I do vape, which I know are risk factors. I’ve changed my diet and exercise routine, but I’m still unable to lose weight. I’m wondering if any of you have experienced similar HPV or CA125 symptoms. I’ve never had an ovarian cyst, so I don’t know what that feels like. I want to think this is all due to my remaining endometriosis, but these new symptoms are scary. 

 Any comforting words you guys have would be so appreciated. I am a hospice nurse, and I’ve seen end-stage ovarian HPV cancer so many times it has scared me to my core. I’m so anxious over this, and I’m feeling like I went through my hysterectomy for nothing. I’ve read some of your stories, and I’m so afraid my HPV Test doctors will blow this off and not do any testing because I’m only 26. 

I feel that I should add I’ve had pain during sex with my husband as well. Suddenly, it feels like it’s “too deep” or hitting a wall if that makes sense.