Real People Stories – Clara

2nd Opinion – Do I contact my current HPV test doctor beforehand? Thanks in advance for the help. My mom has been battling stage 4 ovarian cancer since last February of last year. We found out after a trip to the ER that she got a cancer marker test and her CA125 report was unusually extremely high. Given how advanced it was, we stayed with that hospital for all of the cancer care to not delay anything. It was a basketball-sized tumour from ovarian cancer that started to invade her colon. She did 4 rounds of platinum chemo, then surgery, followed by 2 more rounds of chemo ending in September 2022.

She was monitored with CA125 testing and CT scans. No signs of cancer returning from them. Then, 2 weeks ago, she was having her colostomy repaired for a hernia, and they found peritoneal implants, which came back positive for cancer even though they thought she was still fine when she first went to the hospital with the CA125 and CT scans. They try to consider the next steps and conclude whether she is platinum-resistant.

Good News it hadn’t spread

Given it hasn’t spread further in her body and may be inoperable, we were thinking of getting a second opinion. It was at some of the larger HPV and cancer centres nearby, which are nationally ranked. Our current care team said they will consult this week on treatment plans, and we could start the next treatment approach in 10 days. I worry that getting a second opinion might delay things or cause her current care to be less. Do you think we should contact her current HPV Type Doctors to let them know we are considering getting a second opinion at one of the larger, nationally ranked centres? Thanks, and apologies for the long-winded message from a concerned son.


I had an unknown mass and not an endometrioma. My CA125 was 45, slightly raised, and I  had an MRI. I hated getting an MRI more than anything, to be honest, lol. I just had my robotic lap surgery a little over a week ago to remove the mass, and because of how it was growing, they ended up removing an ovary, tube and my appendix and drained a cyst on the other ovary. I’m (impatiently) waiting for the pathology report and have been perusing this sub as the type of tumour they think I had made me spiral on Google a bit.

ANYWAY, I had never had surgery before (other than for wisdom teeth), and I have relatively high health anxiety. I’m happy to report that it wasn’t as bad as I catastrophised it in my head, even though my surgery and recovery sound a bit more extensive than others that I have read. I was not a “I was back to business as usual two days later” gal.

Day of surgery, every HPV nurse I interacted with I knew that I was very nervous (and by let know, I mean I was crying and apologising for being a weenie, lol), and they were all so kind and comforting. Your mileage may vary, but feel free to voice how you feel! It softened the more “down to business” nurses and made me feel like I was in good hands.

Treatment journey

I changed into my gown, filled out a lot of consent forms, talked to the doctor, got an IV, they wheeled me back, and I was out. My surgery was about 4 hours long. I hung out for a bit while the anaesthesia wore off, was able to go to the restroom and then was on my way. I was amazed that I could hobble around and had an appetite. When I got home, I re-upped on my pain meds and slept the rest of the day. I have felt better and better by the day, and my only real pain is from the outermost right incision (the side where things were removed). It also feels like my guts are still regulating and returning to normal.

Tips to get through

If I have any tips, they would be the following:

1—Set up a “HPV recovery closet,” an open bin of nightshirts, big comfy dresses, soft socks, and my ugliest/comfiest underwear (loose and low-rise only!). I could easily direct my husband to pull from this or hobble over and pull stuff out without overthinking or opening our closets/drawers. This has been so nice.

2- Stock up on frozen meals, canned soups, or pre-made items. This was huge, huge, huge. Again, one less thing for everyone to think about, and even if you feel great after surgery, you already have dinners taken care of that week. Also, could you pick up your favourite drinks, juices or electrolyte waters? Whatever it takes to stay hydrated.

3- Pick up your pain meds and get a stool softener and fibre supplement now. I also needed pads for bleeding after, you may not need them. Stay on top of the stool softener and your meds as soon as you’re home!! Also, my CA125 anesthesiologist gave me an anti-nausea patch for behind my ear, and I didn’t experience any (thank god!).

4- Probably the biggest tip: get one ASAP if you need a heating pad. Laying elevated in bed with the heating pad was the only thing that saved me from this HPV DNA journey when it came to the shoulder gas pains (they sucked so bad). Speaking of, I had to sleep elevated and on my back for the first week, and I am still on my back. I also throw a pillow under my knees to support my lower back.

5- I ensured my chargers, Kindle, and laptop were ready at my bedside.

Final message

I hung out in bed for about three days straight, but this will depend on how extensive your surgery is. I’ve seen some people up and about the next day and back to running around within the week. Not me. I gave myself a blowout the night before surgery to “pamper” myself in the coming days, but I ended up with a wet patch on my hair when I woke up from surgery. This is because of how they position you during surgery, but had this not happened, the blowout would have been nice.

I also used dry shampoo for the first few days. Get up to walk around every often or as much as possible. My tummy felt weak, or like I got hit by a truck, for the first 3-4 days. Even now, it hurts to sneeze, laugh hard or cough. On day 5, I started taking small walks around the neighbourhood, and my discharge papers say not to lift anything heavier than 10 lbs for 4-6 weeks.

That’s about It for my HPV adventure! You’re going to be fine and will heal beautifully. If you have any questions, I’m happy to help! 🙂