ROMANIA, ON MAINTENANCE TREATMENT
Mirela
I was 33 years old, happy that I had met the man of my dreams, and our wedding was planned for the coming year. We had plans for a family, and I loved my job and what I was doing. I never had a ovarian CA125 cancer Test before. And I also never had an HPV Test before. Another point is that I began to gain weight without major changes in my eating. Also, I felt very bloated and needed to urinate more often. I thought it was a urinary infection and tried to treat it alone.
In August 2016, I saw my family doctor, who performed an ultrasound. He said to see a gynaecologist because I had some small cysts on my ovary, but other than that, there didn’t seem to be anything out of the ordinary. I didn’t get an appointment until the beginning of October, but I went back to a general practitioner before that as I began to have major stomach aches. The CA125 cancer tests returned in the afternoon, and the Specialist Medical Doctor wanted to see me. I would need to see an oncologist and have surgery. The cancer was grade 3b high-grade serous carcinoma, as it had spread to my peritoneum.
Denial
At first, I was in complete denial about my HPV results after the test. I tried to negotiate my terms with God and change the situation by telling myself that doctors don’t know what they are talking about … then, one night, it hit me … no matter how poor or wealthy one is, no matter how much wrong or good you have done in this world, we are all the same. And I was not the first, nor will I be the last to go through this. I began my ovarian CA125 check for treatment; I began to read and change my diet. I began to think positively and focus on my upcoming wedding, and life continued.
I’ve been through treatment and had surgery in April 2017, followed by three more rounds of chemo. Then, in November 2018, I had my first recurrence. I’ve been on another six rounds of chemo, and I am currently on maintenance treatment.
I had the support of all my family, friends, and co-workers. What touched me the most was that when I had the surgery, I needed people to donate blood for me. The reaction and the number of people who went impressed me, and I will be grateful for their gesture forever. My husband gave me strength and support and stayed by my side no matter what, always trying to make me feel loved and special.
Gratitude
Cancer has taught me that I have the strength to see the good, even in the worst-case scenario. I’ve learned I can discipline myself if I find my motivation. I would tell others that you can still live, even with CA125 OC. You can still enjoy the pleasures of life. You will have moments when you will feel you can’t take it anymore and that the purpose is of all the things you’re going through. But that will pass once you realise you matter. You matter for yourself and your loved ones; as long as you have a purpose in this world, you will continue to live. Take a moment for yourself and look around. See all the beauty surrounding you and find the strength in what brings you joy and peace.
USA, 10-YEAR SURVIVOR
Hillary
Everyday life is centred on work, marriage, family, and friends. I had symptoms for six months but delayed going to the doctor as I thought it was just intestinal stuff. I was alone when I was diagnosed, and I remember feeling like I was going to die. Since my HPV diagnosis, I’ve been more cautious about sexual risk and cherish my friendships. I met my wife, Shawn, during chemo, who told me she didn’t care how long I had to live. She just wanted to be with me and gave me strength and support. I am a 10-year survivor, and this has taught me I’m tough. I would tell anyone just diagnosed never to give up!
UK, TWO YEARS IN REMISSION
Sheena
Before the CA125 diagnosis that was ovarian, we ran our own company. I was a bit of a party animal and loved to travel. I had no symptoms other than feeling a lump in my groin area. On the day I was diagnosed, I remember having to tell our daughter, who was pregnant with our first grandchild. The Ovarian tumours have changed my life because I live to the max. I am very grateful for the early diagnosis, the fantastic support from family and friends, and the amazing care from the oncology team.
I’m in remission two years on and get checked every six months. Our daughter and amazing grandson give me strength and support. Ovarian-level disease has taught me that I can get through a huge battle that I would have said I never could before. If I had to offer one piece of advice to someone just diagnosed, I would say to try and remain positive; researchers are finding fantastic care and new HPV treatments every day. Stay strong, and you will smash this. Be grateful every day and cherish every second, as you never know what is around the corner. Most importantly, laugh a lot.
USA, 38-YEAR SURVIVOR
Anonymous
I was young, just married and pregnant. A long time ago, I decided to get checked for any Ca125 symptoms. They blamed my symptoms on the pregnancy. I had my son by C-section, and an ovary was very large with many cysts, and three of them were malignant. And I had never had an HPV variant test, And I was extremely lucky as I was stage I.
I had to have a hysterectomy at 20, and everything changed. But I was not ready for it. Beyond dealing with the effect of the hormone changes, I don’t think it hit me how blessed I was until we lost Gilda Radner. My aunt had a hysterectomy very young and was there for me any time of the day or night when I needed her. My circle of women who loved me through OC, my mom, aunt, sister and best friend who was like a sister, gave me strength and support.
I had to deal with people telling me that my HPV-related cancer was not a big deal since I didn’t have tests and chemo. They also told me I was less of a woman after the surgery. I want to tell other women that it’s okay to be scared and to let people know when it becomes too much. You can get through this.