Are there Personal Choices besides Praying and Hoping?

Real People Stories – Avery

I suffer from a history of CA125 health anxiety. I have been doing so well until this week. About 6 weeks ago, I started getting constipated and having to pee more. I also started getting bad indigestion within the last two days. And I get it sometimes anyway, but it’s not been good recently. Also, I remember reading somewhere about tests for ovarian HPV viral symptoms, and for some reason, I allowed myself to look it up. I have many of the symptoms. Sudden bowel changes, indigestion, urinary urgency, fatigue, missed period ( not pregnant), nausea etc. And for some reason, over the last 6 weeks, I keep getting nauseated and can’t stop puking randomly and getting cold chills.

I feel like I have the flu.

It comes in spurts; some days, it’s all day, and I notice it’s not as bad if I’m distracted. I had a transvaginal ultrasound on October 4th ( 5 months ago), and everything was normal. I had a CT done in June ( 9 months ago) for vomiting blood, and everything was normal there. They didn’t even note an ovarian cyst on my ultrasound. I messaged my ob/gyns office about my having some of these symptoms, and they dismissed it and said to see my primary. But I read that it often happens with ovarian disease due to the vague symptoms. I guess my question is, if I had a clear ultrasound 5 months ago and a clear CT 9 months ago, do I need to fear disease? I’m 31, female, and my great-grandmother died at age 91 from ovarian tumours.

To my knowledge, no other history.

I’m hoping my anxiety is making my symptoms worse, but I cannot kick this flu-like feeling that keeps coming back. It’s hard for me to want to cook dinner for my family, spend time with my kids, etc, because I feel awful. Because of my history of CA125 health anxiety, I fear making an HPV test appointment because I feel like they will think I’m making up my symptoms, but they are completely real. I feel AWFUL. I’m finishing college in 2 months, and I’m struggling even to do homework because I feel so horrible and sick and can’t stop puking. I normally can calm my fears by researching and realising that based on my last CT, there’s no way I could have cancer because the ones feared recently couldn’t have possibly grown that fast to cause symptoms.

However, I read that OC can grow to advance within a year. Yes, I know Dr Google is bad. Please, no judgment; I do work with counselling and on meds and have been doing super well, but this sickness has put me into panic mode. Could I already have ovarian HPV type cancer within 5 months, enough to be causing noticeable symptoms? Should I let this go? Should I demand a scan? 🙁 I can’t talk to my husband because we almost divorced over this, and he doesn’t understand mental health at all. I feel alone and need someone to hear me, understand me, and help me reason with myself.

Ella

Just really freaked out.

A few months ago, I started feeling pelvic pain, which I thought was just gas + constipation. I have BED, so I was eating a lot after a very sad breakup. Went to my HPV gyno, and they didn’t see anything wrong, so they set me up for a transvaginal ultrasound the next week. I ended up in the ER the next day because I passed bright red blood in my stool. So they gave me an ultrasound then and discovered a bunch of CA125 tumours on my ovaries. The ER doctor then said possibly cancer.

That was a little over a month ago.

Since then I’ve done countless CA125 blood tests, an MRI and a CT scan. After the CT scan, they said maybe it’s not cancer after all, so I had surgery yesterday. Once they took a look inside, it looked again like it was HPV-derived cancer after all. So they didn’t remove anything; they just biopsied the two largest viral tumours and stitched me up again. Now I’m sitting at home in pain, completely freaked out and waiting for the pathology reports to come out.

I’m 30, have no children, and am single. Only my friends, 2 cousins, and my bosses know right now. My mom is in bad health, and I’m afraid to tell her anything; I genuinely think it will cause her 3rd stroke in 2 years and kill her. I feel so alone. What’s worse is I can’t afford any of this. I was on Medicaid, or so I thought and had been using it just fine before all of this without issue. Still, it turns out I make like $2k too much per annum to qualify for full benefits, so they put me on “family planning only”, and even though this is all gynaecological, it doesn’t cover anything. I have in one month depleted my savings paying for all of this out of pocket. I’ve applied for financial assistance, grants, you name it. I can’t even buy insurance now because I’ve got a preexisting condition, and it’s not an enrollment period.

What’s worse?

Since I’ve been sick so often (thanks, cancer!) I have missed a lot of work. One of my CA125 specialist bosses called me the night before my surgery to tell me that if I kept taking time off, they’d fire me. Then, at least, MY HPV would qualify for Medicaid! I am working full-time to put myself through school and take on less debt. But if they fire me, I will have to give up and take out loans.

I don’t know what to do or what the future holds,.. will I end up sterile? My life, as I know it, is crashing down around me. All my plans are on hold right now. I am so scared.

Edit. Biopsy results are back. Cancer in both ovaries and on my uterus.

Aaliyah

My personal story

At the age of 23, I had a 9cm borderline HPV viral-related tumour on my left ovary (my doctor noticed a cyst when I was 21 and pregnant and said we’d monitor it. I switched ob-gyn, and it was never talked of again. And I was young and had no idea what I know now). I could feel a large “ball” inside me and just thought I was having bladder problems since I had a baby; eventually got an ultrasound and found the CA125 signalled tumour. Had surgery, and my tumour, including my left ovary and fallopian tube removed. My right ovary was discovered to have stage 1c. My oncologist removed the cancer from that ovary and left the ovary and tube for childbearing purposes. At the time, I was pretty upset, like, “Why didn’t you clean me out”! I am so grateful he didn’t. My second child was born 6 years later.

I never had chemo or was given the option of chemo.

My stage 1c returned less than a year after initial surgery; I was closely monitored every 3-6 months. Has another surgery and kept the ovary and tube. It was tumours at that time, no cancer. I went 10 years after my second surgery with no issues. I had another surgery 2 years ago due to more growths. This time, I requested my HPV doctor keep my ovary one more time for hormones because I’m going through perimenopause, and I want the bone and heart health to last as long as possible; he agreed and removed my remaining fallopian tube.

No chemo.

I am not there yet and pray I never have to be, but I don’t think I would choose chemo. It’s so hard on the body. I take a more holistic approach to healing HPV. Look up Dr Connelly on Instagram; she’s incredible for HPV issues. It’s all a personal choice, but by taking good care and extra care of yourself, you may never see the word HPV cancer again. During the last 12 years, I had a TON of stress, including the death of a spouse and many other problems. If you can handle the CA125 testing stress and eat extremely clean, you can be ok!

Unfortunately, I did not handle it well for a good amount of time, and it’s wild that it started to grow again. But now I believe that stress is a huge part of the cancer growth factors as well as the diet that we eat. So now i have realised that I am back on track again, and I am also praying and hoping.