BEVERLEY: 2007, AGE 49  

I am going to start by telling my story. Individual HPV Test stories can be redundant, so if you want, skip to the end to read what I want to say! I took a Lab test to check CA125 levels and a range of fertility drugs, never gave birth (adopted my beloved daughter), and had a history of pelvic pain. Realising I was at risk for ovarian cancer with the first two factors, I regularly took Ca125 Test kits.

I also was told to test DNA variants subscription annually for HPV. And I had always been proactive with yearly ultrasounds and watching for little signs. But I told my GYN about my fear, and he said not to worry; there was no proven link to fertility drugs and over.

One year, a septated or complex cyst on my ovary showed up on the ultrasound. Reading on the Internet devastated me when I learned that these types of cysts could be the genesis of ovarian tumours and needed further evaluation. I spoke to my gym, and he said not to worry; he was certain it was just two cysts together, and they are rarely cancerous anyway.

Eighteen months later, tired of the pain, the heavy periods

I requested a hysterectomy from my gym. He said, “The chances of you having serious complications from surgery are far greater than your odds of getting ovarian viral disease”. I was lulled into complacency.

Six months after my hysterectomy request, the pain got worse.CA125 Blood Levels were still high. Thinking it was my stomach, went to an internist, and she ordered a CT. CT showed two large bilateral masses on each ovary. The gym ordered me to undergo an ultrasound, during which they identified “pedunculated fibroids,” or uterine fibroids on stalks that had floated out of the ovary. I don’t know who a bigger fool is: him for suggesting it or me for buying into it.

Anyway, after a follow-up ultrasound, 4 months later, the “fibroids” on my ovaries had grown so fast that he told me I had to have a hysterectomy, and only then did he order the CA125, which was 3170! The result was “apparent stage 2b but possibly borderline 3a via”.

I opted for the IP delivery but could only tolerate two out of six doses. The remaining four were infused. I finished my last treatment just over six months ago and am feeling much better. On my last visit, my CA125 Antigen Levels test result was down to 4. I pray it stays that way.

The moral of my story, if you are reading this and don’t have it

1) think twice about fertility drugs. Their link to cancer is very strong, but none of the doctors who treat infertility will ever play it up…there is too much money to give it up.

2) Investigate thoroughly all complex and septated cysts. OVCA in stage 1 is completely curable 95% of the time!

3) Try to see a guy who is not delivering; otherwise, they are so caught up in being the heroes in the maternity wards that they still have their heads in the clouds when they have to see women presenting with health issues.

4) Don’t JUST listen to your body (we all know or have heard whispers). Make sure the doctor is listening too. Don’t get lulled into the “great; the doctor says I’m ok” mode as I did.

5) Get yearly ultrasounds AND the CA125 Level. Lie and say you have pelvic pain if that is going to get them to agree to the screening! Hopefully, one day, cancer will get America’s attention as (thank God!) breast cancer has; we won’t have to contrive to get screened. As of today, however, there is nothing besides the “cancer whispers” message (not sure how powerful or useful that is anyway).

For all of you surviving out there…

Keep up the great work! I feel all of us affected by this bastard disease have a cosmic kinship of some sort. We are all members of the same HPV Lab club, shaking our heads and wondering how we got here, ss; here we are, ready or not, each trying to get by in our new skin, our new persona as “person having ovarian organ cancer”, the best we can. Although I have a great support system, no one but no one, as I’m sure you can all relate, can understand how this feels…to be stripped of so much that I resolved to live my life to the absolute fullest. And love everyone a little bit more.

Be kinder and appreciate nature. Strive to be as stress-free as possible. Appreciate and take care of my body after all it has endured through nutrition and exercise. Thank God daily for all my blessings.

To every one of you with ovarian type cancer who is reading this…A GREAT BIG HUG, SISTER!!! We can do this!

LNDA : 2006, AGE 34  

Dec 12, 2006 | Age: 34

My name Is Lnda. I live in Ohio, and I was dx at age 34. what a shocker! I thought it was an old lady’s disease. Then I knew it was What Gilda died from. I’m currently a 12-year survivor. Just finished fighting my fourth recurrence. I’m Stage 3B Epilly had to get used to the new normal life after cancer. I’ve done many chemo trials that included HPV Type test reports. So don’t be afraid of that. I have no secret weapon. Keep the faith, have a positive attitude, and ensure you feel comfortable with your ovarian Blood screening healthcare team.

Knowledge is power against this beast, so I try to find everything and anything about OVC and its course of treatment. Be part of your healthcare team. I’ve learned from support groups, the ACOR list online, CONVERSATIONS, GCF, and OCNA. I’ve also gained many valuable friendships through these.

I do lots of CAD. Reiki, guided imagery, tai chi, music and art therapy. May we all dance along with NED! I didn’t sign up for this, but being a real sister is best! Be well!