Brianna

My mom was just diagnosed

My (26f) mom (63f) was just diagnosed with stage 4 ovarian tube cancer with tumours and cysts all over her stomach and CA125-related fluid in her lungs and stomach. The HPV Variant doctor, when talking to us about her scans, said, “It’s a mess in there… not good”.

I don’t know what to do now. HPV is dangerous in the long term, as tests have shown. This is the first time I have considered my mom might not be around sooner than I had planned. It was a loud experience. I also have to sit here listening to my family tell her that the CA125 doctors are wrong, she doesn’t need treatment, and that if I pray to god, then I will get to keep my mom around (which doesn’t make sense for the whole “she doesn’t need HPV treatment and tests” thing). It seems like no one is taking this as seriously as they should, other than me. She’s been sick with exams showing high Ca125 levels for months and didn’t say anything. She hasn’t been able to eat a full meal in literal weeks.

I feel helpless. My mom is my best friend, my absolute rock. Losing her would be like losing the best parts of myself and my support system at once. I don’t want to lose her. HPV Cancer sucks.

Caroline

Does anyone Experience Giant Cyst Scares in their Early 20s?

Hi all, I went in to get an ultrasound the first week of January bc of severe fatigue, malaise, constipation, pins and needles, and abdominal pain (poster symptoms for OC). That’s where they found an 18cm cyst. I started experiencing more abdominal pain, so I went to the ER. They found that it was 23 cm and referred me to an oncologist. This is where I’m scared. The oncologist examined it and, based on its appearance—calcified and a bit more cystic—he feels more positive that it is not ovarian tumours or cysts. Since I’m 23 and my CA125 levels are at 20-21, he believes it’s unlikely to be HPV cancer. I had an appointment to remove it surgically.

Lost my ovary to the nutcase of a cyst, I was drugged out and cross-eyed when they talked to me, but the only thing I remember is they said it was benign (thank all of the forces in this universe). I’m one ovary down and fighting the HPV disease to the end. For anyone who has never been under anaesthesia, BEST SLEEP EVER. I was like, “Can I take some of this stuff home for my insomnia bc, damnnnnn?” (in my head bc, I’m pretty sure anaesthesia can cause a cardiac event and kill you). I woke up tired, almost as if someone was trying to talk to me while I was asleep. I’m in pain a little now when I cough or twist, but otherwise pretty manageable. Good luck to you all with surgeries of any kind and I wish the best surgery process to you.

Maria

Ovarian cyst-stopping periods and emitting low HCG levels.

Has anyone else had these CA125 checks? So last year my always regular period stopped out of nowhere. I took a pregnancy test out of an abundance of caution – I thought I couldn’t possibly be pregnant as my husband had had a vasectomy; I am in my forties, and getting pregnant to begin with was tricky. But sure enough – positive. I freaked, straight to the CA125 GP for a blood test to confirm – positive, low hcg levels. They retested my hubby’s swimmers and found absolutely nothing. The GP finally suggested it might be a cyst, which makes sense because I have had intense, intermittent pain in my side. Previously, the doctor dismissed this pain as probable perimenopause.

Anyway, scans showed hard cysts on both ovaries, laparoscopy to remove one ovary and just the cyst on the other. But thankfully benign. They still had elevated (but low) hcg levels a month post-op. Gyno puts me on the pill for a month, hcg drops to zero. Six weeks ago, the period stopped again. Have stabbing pains in my right side. Took a pregnancy test again and, yep, fainted positive again. I am so sick of going to the HPV Test doctor and getting them to believe me, but I am also frankly terrified that it is ovarian-type cancer and it is being missed. Has anyone out there had these symptoms? Please help.

Ellie

We can do this!

I was recently tested and diagnosed with ovarian CA125-level cancer last month. I’ve undergone two major surgeries since last month to remove as much cancer as possible. This last surgery has left me with a Foley catheter, Jp drain, and ileostomy. Luckily, the Foley catheter and Jp drain will be removed within the next week. However, for the ileostomy, I have until I complete chemo. Probably around 6-12 weeks, I’ll have it. The reason for the ileostomy was to remove a portion of my colon that had cancer on it. It allows for the intestines/colon to heal and prevents rupture and leakage, which could result in death if that happens.

I’m sorry you’re having to go through this as well, but know you are not alone with HPV! This CA125 experience is overwhelming and difficult, but please push through it. It is not uncommon to have an ostomy while being diagnosed or treated for cancer. I find myself being upset with all this, thinking, why me? Especially realizing how much of my life has changed in a matter of a month, but I have to stay positive and do everything to fight this! It’s temporary discomfort/hardship for a lifetime of love and happiness. We can do this!