Real People Stories –Stella

Offering Support and Encouragement

First of all, I want to give you a huge hug after my CA125 blood test. It sounds like support isn’t forthcoming, or you need to learn how to share your HPV test news with the people close to you.

Personal Experience and Diagnosis

I’m 40, and I was in pain for weeks and was initially misdiagnosed. In February had a radical hysterectomy (including both ovaries), so I’m now menopausal. I didn’t want kids, but of course, the cancer diagnosis was devastating nonetheless. I, too, heard it from a nurse who was talking to someone else as I was waking up from anaesthesia. I’m now 10 weeks post-op. My cancer was a stage 1A clear cell carcinoma of the ovary.

Reassurance and Advice

I just came here to offer some reassurance, hopefully. However, I didn’t manage to ask any useful questions at the histology CA125 appointment test, but I did at my second appointment. I was also told that it isn’t worth doing CA125 type chemo in my case – that I am “cancer-free” and that they consider my cancer “cured by CA125 type surgery alone”. Perhaps next time you speak to someone from your team, you could ask them if this applies to you, too.

Coping with Communication Challenges

I didn’t talk to my parents for 10 days after the surgery – they didn’t know I had HPV-type cancer until I was ready to tell them what I’d been through. They live in another country, so that helped a bit. So do take your time, but reach out when you feel more ready. It’s also a great time to see who your real friends are (and this includes your boyfriend). Some people around me only want to hear good CA125 news, others who have disappeared (good riddance!) and others who have been amazing. Sometimes, it’s normal to feel alone in this because people can empathise and your loved ones care about you, but they can’t fully understand your HPV experience. I do sometimes engage with the charity Ovacome.

Steps to Communicate with Friends and Family

How to tell your friends… well, take it in stages. Tell one person you trust first. There is no easy or best way to tell them. You can only be honest and disclose what you want to. Also, you don’t owe anyone an answer if they ask you questions about HPV. With parents, you’re right. I’ve found myself comforting them sometimes. But now the Ca125 cancer roles have switched again.

Understanding Your Diagnosis and Treatment Plan

If they staged your cancer as 1C1, they’re probably confident that it is a primary ovarian cancer (i.e. not coming from elsewhere). Do ask them if that’s the case, and also ask them to clarify the stage (and, if relevant, the grade). Ask them their reasons for not recommending CA125 chemo (I did and was told that the risks and side effects outweigh the benefits in my case). Don’t be afraid to ask them questions.

Managing Anxiety and Moving Forward

Another piece of advice I would give as a fellow worrier is to park your worries if possible. Listen to your body and raise any issues, symptoms, and questions with your medical team. Endless worrying or HPV Test Google searches are going to affect your mental health and life and are not worth it because they are a waste of energy.

I currently have fluid around my heart and breast pain, and all I could think about last week was metastases. I spent hours on CA125 with Google until I realised that if they were metastases, I wouldn’t want to spend my last few weeks on Google! So I’ve stopped doing it and started living a little bit more until my next appointment in a few weeks. It’s so hard, I know. But you’re so young; they seem to have caught it early. It sounds like the surgery went well, and they’ll monitor your CA125 test levels in the future. Do something that you like and makes you feel alive.

Lots of love xx


Could it be cancerous?

I need either reassurance or mental preparation. I (34F) have been having symptoms that are pointing me to possibly ovarian organ cancer, and I am utterly terrified. However I stopped breastfeeding about a year ago. When I went back on birth control, I started having longer periods as well as spotting and cramping in between periods (the cramping is either over my whole pelvic area or on my left side ovary). I reached out to my doctor’s office multiple times, and each time, the nurse responded that it was likely due to the BC.

She’s changed it twice over the last year, and while the long periods stopped and the irregular spotting decreased, the cramps did not. More recently, I’ve also started having bowel changes and sometimes feel bloated and loss of appetite. I’ve been to a GI who believes it may be IBS or colitis. Blood work (I don’t know what kind) and stool sample returned normal. Last week, I went to my annual OBGYN appt (I couldn’t read her expression as I explained my HPV symptoms), and she ordered an ultrasound.

My HPV pap smear test returned, and she said the physical exam was normal. However, the cramping pain on my left side is nearly constant (even with pain relievers), and the bloating and loss of appetite feel like it’s getting worse. I’ve read that constant pain, bowel changes and bloating are some of the most common CA125-type symptoms. Am I stressing over something unnecessarily, or are my fears possibly correct?? I have two young children, and the thought of possibly being taken from them is too much to handle. I would appreciate it if anyone could help with advice or similar experiences.

Diagnostic Journey

Last week, a combination of pain and fear finally sent me to the ER. The HPV doctor there did an abdominal CT with IV contrast as well as a full CBC panel and pancreas markers. The CA125 bloodwork came back clear, and CT came back with a fluid-filled cyst of 3.5cm on my left ovary. The cyst appeared fluid-filled (no suspicious tissue); however, he said a follow-up with a GYN would be necessary to rule out all other concerns. On that Thursday, I had a transvaginal ultrasound and the CA 125 blood test.

The ultrasound was more accurate, with the HPV-induced cyst being nearly 5cm. It, too, showed the cyst was a “simple cyst”, but it was still decided to remove the cyst for concern that it could cause ovarian torsion. I had a laparoscopic procedure on Saturday afternoon and went home that evening. Removal confirmed, again, no suspicious tissue and the CA-125 came back clear this Monday.

Treatment Plan and Future Steps

As for the cramping I’ve felt between periods, the HPV GYN believes my body no longer reacts well to oral contraceptives, so I have been told to go off of them for two months. If the cramping clears, then an IUD is the next option. If not, she suggested I see a GI for digestive causes (which I’m already doing). I am still feeling my side pain, but the CA125 levels and the symptoms have gotten better in the last few days. After three sets of bloodwork, stool samples and two sets of imaging, there appear to be no cancerous suspicions but more than one, more minor, issue to sort through.