UK, two years in remission
Prior to diagnosis, 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. Ovarian cancer has changed my life in that I live life to the max. I am very grateful for the early diagnosis and for the fantastic support we had from family and friends along with 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 cancer 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 try and remain positive, there is fantastic care and new treatments being found 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, 10-year survivor
Prior to diagnosis my everyday was centered 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 diagnosis I’m more cautious about 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 she gives me strength and support. I am a 10-year survivor and this has taught me I’m tough. I would tell anyone just diagnosed to never give up!
Romania, on maintenance treatment
I was 33 years old, happy that I had met the man of my dreams and we had our wedding planned for the year to come. We had plans for a family, and I was loving my job and what I was doing. I began to gain weight, without any major changes in the way I ate. I felt very bloated and needed to urinate more often. I thought it was a urinary infection and tried to treat it on my own.
In August 2016, I went to see my family doctor who performed an ultrasound. He said to go see a gynecologist, 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. After an ultrasound I was immediately seen by a gynecologist to have a CT done. In the afternoon the tests came back and the doctor wanted to see me. I would definitely need to see an oncologist and have surgery. The cancer was grade 3b high-grade serous carcinoma, as it had spread to my peritoneum.
At first, I was in complete denial, then 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. I was not the first nor will I be the last to go through this. I began my treatment; I began to read and change my diet. I began to think positively and focus on my upcoming wedding, and life went on.
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 go and donate blood for me. I was impressed by the reaction and the number of people who went and I will be grateful for their gesture forever. My husband gives me strength and support and he stayed by my side no matter what, always trying to make me feel loved and special.
Ovarian 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, as long as I find my motivation. I would tell others that you can still live, even with ovarian cancer. 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 realize you matter. You matter for yourself and for your loved ones and, 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 that surrounds you and find the strength in what brings you joy and peace.
Canada, on weekly chemo due to recurrence
Before my diagnosis, I lived on a 100 acre farm in the country. I lived with my significant other and my best buddies were my two cats and dogs. My spare time was spent walking my dogs Max and Casper. I hunted in the spring and fall and loved to be outside.
One Friday afternoon at work I got a sharp pain in my stomach. They sent me home, as I was never sick. I started to vomit which continued for days. I went to the walk-in clinic on Sunday and they said my stomach was upset, but my family doctor on Tuesday felt a mass. I had an ultrasound on Wednesday and an oncologist ordered a CA 125 for Friday. I was basically diagnosed with cancer that week and they just needed to determine which kind. My tumour had grown through my bowel and closed it. I was diagnosed 3c serous, which was determined to be low grade.
I felt like I had been hit in the head – hard! I felt blackness. I went for a drive and there was a turtle on the road. I got out and ran to pick him up and a truck ran over him. I bundled him up and took him to my vet; I was crying my eyes out about the cancer and the turtle all mixed together. My vet and her husband hugged me and called the “turtle lady” to take the turtle to a rescue place. He recovered and I was able to participate in his release at the same time that my front-line chemo ended.
I gave up my second job, sold the farm, and downsized. My relationship ended, not due to the cancer directly, but it didn’t help. I didn’t have as much energy as before. I have permanent neuropathy in my hands and feet. I am accommodated at work to sit at cash, and do not lift more than 10 pounds.
After chemo and surgery, I had two years without drugs or cancer. It recurred this year at the two-year mark and appears to be permanent. I tried chemo but was platinum resistant and Letrozole did not work either. I suffered through many partial small bowel blockages, which really made my life difficult. I am on a low-residue diet. I switched to a research oncologist who put me on bevacizumab and paclitaxel. I have not been ill since. I have weekly chemo and have cut my work schedule to five days, generally part-time. I feel the best I have all year, but have to pace myself due to fatigue.
My sisters have been there through my recurrence. One sister, who lives an hour away, has volunteered to drive me to as many chemo treatments as possible and another sister and her husband have come once a month to keep up my house – plant a garden and fix anything that needs fixing. A friend has been walking my dog on chemo days. So much help and thoughtfulness!
I am more accepting of my “fate” than I thought I would be. I may worry or stress, but on the whole I have a vision of my life as a path with one foot after another. I am stronger than I thought. I have had to learn to accept help when offered and to ask for it when not.
I would tell anyone diagnosed to build a team to support you – family, friends, neighbours, and professionals. It takes a village to fight cancer. My recurrence will be manageable for only a few years, and while I am still working I am carving out more time with my pets, family, and friends. I now take the opportunity to go out for dinner or see a play or visit with family. I also volunteer twice a month at the Cancer Clinic – on the chemotherapy suite committee and as a patient advisor. I look for humour in things, including procedures being done to me! A difficult lesson was that I have the right to feel what I feel – including being sad or angry. I have great quality of life now with my new chemo and am living my life the best I can.
USA, 38-year survivor
I was young, just married and pregnant. It was a long time ago, and any symptoms I had were blamed 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. I was extremely lucky as I was stage I.
I had to have a hysterectomy at 20 and everything changed. 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 anytime of the day or night that I needed her. My circle of women who loved me through it, my mom, aunt, sister and my bff who was like a sister to me gave me strength and support.
The hardest thing I have had to deal with was being told that my cancer was not a big deal as I didn’t have chemo, and being told I was less of a woman after the surgery. I would tell other women that it is okay to be scared and to tell people when it is too much for you. You can get through this.
Canada, on maintenance treatment
Before I was diagnosed, I was a mom to 3 daughters, worked as a medical admin, enjoyed coaching basketball and was a runner.
I had physical exhaustion for months with irregular periods. I visited the doctor late January due to ovarian pain. Had an ultrasound one week later and was referred to a gynaecologist. She assured me she didn’t feel it was cancer but I did have multiloculated cysts and an elevated CA 125. Had surgery within 6 weeks to have a hysterectomy and cancer was found. Stage III high grade serous. I’m 44 years old.
I finished my weekly chemo Fall 2019. I receive a maintenance drug every three weeks and am hoping to get approval for a parp inhibitor.
My husband is my rock and was by my side for my worst day ever. I received so much love from my family and friends.
The hardest thing I have had to deal with is chemo illness, fear of future, the thought of dying and leaving my daughters without a mom. I learned that being healthy and active doesn’t allow one to avoid cancer and that I am more resilient than I ever imagined. If I could offer one piece of advice it would be to lean on others and allow yourself all the emotions that hit you. It’s ok to cry and be sad.
You can read more of my story on my blog.
Italy, recovering from recent recurrence
Prior to my diagnosis I used to be a language teacher, audiovisual translator, and academic researcher in language and translation. I was career focused and was starting to plan a pregnancy with my husband.
I had several unspecific symptoms and was misdiagnosed for a whole year before my ultrasound which led to markers and other diagnostics. I was alone and I remember the doctor telling me to sit down, speaking with a warm voice. I remember the white envelope containing the markers results sitting on a mint green table – the doctors coming and going in front of the ultrasounds screen – speaking between them as I was not there. I felt a cold chill behind my back.
The diagnosis changed everything. The thought that I could have died made me become different and I am trying to make every moment count. Although I kept my uterus through my treatments and am a candidate for heterologous fecundation [insemination] with egg cell donation and future IVF, the hardest thing above all is that I will never have children that share my DNA.
I had lots of valuable moments in my cancer journey, but maybe one of the sweetest was during one of my last chemo sessions. I had neuropathy in my legs and felt the need to walk up and down the corridor. I stopped to rest during the walk and I realized I was just in front of a blue eyed girl with no hair at all on her head. She was bald. Scared. In pain. And beautiful. Just like me. A sister. We felt it immediately.
She invited me to stay with her and we started chatting about ordinary things, totally forgetting where we were. All the other girls nearby were listening and little by little they left their chemo armchairs and joined us. We had a super wonderful tea chemo party, chatting and laughing with nurses and among each other. We pretended to be at a hairdresser with the only difference that we were speaking about chemo caps and foulards rather than hair or nails or make up and normal girly conversation. This was so cute. We all ended up with a best-chemo-ever! smile on our faces. Maybe this is the sweetest memory I have of my entire cancer journey.
I am recovering from a recent cancer recurrence and I learned that I am a rock. I would tell anyone just diagnosed that you don’t have to act like a fighter or a warrior. Search for inner peace and value every moment of your life as precious. I get my strength through supporting others, including running a Facebook group supporting ovarian cancer survivors in Italy called ovariancanceritalia.
USA, six-year survivor
Before I was diagnosed, I had been a nationally touring comedian for twenty years. I was on the road a lot and ate way too much fast food, but I was active and other than that, had a pretty healthy lifestyle.
One night out of the blue, I had shooting pains in my abdomen – I almost went to the emergency room but instead went to WebMD and diagnosed myself with IBS. My annual checkup was coming up, so I didn’t see any reason to rush in any sooner because who hasn’t had cramps? Six weeks later when my appointment rolled around, I didn’t expect my routine check up to be anything other than routine. In fact, I had forgotten about the cramps and didn’t even mention them to the nurse practitioner when she asked me if I had any concerns. Then she started examining me and when she got to my abdomen, all the blood drained out of her face and she said, “You have a huge mass.” She immediately sent me for an ultrasound and a sonogram, but it didn’t tell us anything except that it was huge. She then ordered a CT scan and a CA125 blood test. I had the scan the following week and met with the Oncologist. He said that he was 98% sure that it was cancer but there was no reason to biopsy because it was so large that regardless it had to be removed. He also had the results of my CA125 blood test. Normal range is 0–35 and mine came back at 11,000. The next week I was in surgery and when my doctor cut me open, my right ovary popped out the size of a cantaloupe and my left ovary the size of a grapefruit. I was very fortunate that the cancer was contained to my ovaries and I was first diagnosed at a 1C but after the labs came back it was changed to a 2A because they found a spot in my fallopian tube. Luckily, there was also fibroid tissue mixed in which contributed to the size and made them easier to detect. Everyone always says that they can’t believe I didn’t have more symptoms and I DID have symptoms … I was tired, bloated and felt like I could never empty my bladder and that of course describes every middle-aged woman I know!
My partner sat with me through every minute of chemo and went to every doctor’s appointment.
My dad had passed away nine months earlier and I live 30 miles away so my brother would go every day to check on mom so I wouldn’t worry about her being alone. When I found out that I had cancer, how to tell my mother was my first concern. She is a worrier, but she’s also a “fixer” so she took on the role of staying with our dogs for the eight hours I was in treatment so I wouldn’t worry about them. Friends sat up with me at the hospital, brought me food, other comedians had a benefit for me – anything I needed was done. I just had a huge support system. My family, my friends, my pets, and of course my doctor and the oncology staff all gave me strength and support.
The hardest thing I’ve had to deal with is having no hormones and not being able to take any. I hate not feeling strong – it’s so hard to build muscle and is very frustrating.
Life is short and I’ve learned not to take it for granted. I would tell anyone to stay positive and find humour anytime you can. Cut negative people from your life. Take responsibility for the energy you allow in your space.
Life prior to my diagnosis was typical – spending time with family and friends, I was recently married and returning to college.
My diagnosis came as a result of a car accident in June 2013. No one was severely injured – and I refused care from emergency personnel. A couple weeks after the accident, I was having severe pain in my abdomen and went to the ER at a nearby hospital. There were fibroids visible in the CT scan and the practitioner recommended a follow-up with an OB/GYN. The gynecologist recommended an MRI and that’s when they realized my symptoms were more involved. I had a softball sized tumour resting on top of my uterus and multiple cysts and growths on my left ovary. I was told surgery was the best choice, and that it was the only way to determine what stage it was. Surgery was scheduled about three weeks after the MRI. The surgeon, a gynecological oncologist, reported findings of Stage 1 ovarian cancer, left ovary and tube. I had no symptoms leading up to my diagnosis and had expressed that my cycles were irregular, but no further testing was completed.
I did not want anyone with me when I was diagnosed, and I remember that day thinking about the possibility of not being able to have children. I gained new appreciation for the simple things in life and fortunately no further treatment was necessary.
My family and friends are the best support system and my husband helped me change out my foley/cath – that’s love! My best friend inspires me daily, she one of the strongest women I know. I’ve learned that I am resilient and need to slow down.
The hardest thing I’ve had to deal with is being in menopause early and redirecting questions when people ask, “When are you going to have another baby?” If I had to offer one piece of advice it would be to advocate for yourself and surround yourself with family and friends that will support you.
USA, cancer-free since 2008
Before my diagnosis with cancer, I lived a happy-go-lucky life, traveling around the world with my husband while working as an independent marketing consultant. I was healthy and we were trying to have a baby!
I was heading full speed into fertility treatments until the specialist discovered my enlarged ovary via a transvaginal sonogram. I was referred to a gyn-oncologist as a “precaution”. During exploratory surgery, granulosa cell tumor (ovarian cancer) was confirmed and the cancerous ovary was removed that day. I had no obvious symptoms, but in retrospect, I realized my symptoms were extreme fatigue and frequent bathroom visits since my enlarged ovary was resting on my bladder.
It was my husband who told me I had cancer when I was in recovery after my exploratory surgery. I was in shock. I felt like I was living some bad nightmare and hoped I’d wake up and realize this was not my life. After the shock, I was relieved the cancer had been discovered. My ovary was the size of a brick and on the verge of rupture putting me at higher risk. I was thankful that this had not happened. I was thankful that I still had one ovary left and hopeful I’d still be able to have a child.
My oncology nurse was so caring; I was still grieving my mother who passed away six months before I started chemo. I was an emotional wreck and she was so positive. I could tell she cared and it made a big difference. My husband is so supportive and made sure I have everything I needed and did everything he could to reduce my responsibilities in our household so that I could focus on healing. With my mother’s passing from cancer, I felt obligated to be strong and fight because I had been spared. I felt she was watching over me.
The hardest thing I had to deal with was the “blow” each time it returned – it happened three times beyond my initial diagnosis. Having to tell my mother who was terminal from lung/breast cancer that my cancer had return was probably one of the hardest things I’ve ever had to do. I had to tell her and convince her I’d be ok. Today my hair sucks and I have neuropathy that affects my day to day life.
My diagnosis taught me that I am fearless, I am strong, and I can do anything that I set my mind to. I am unstoppable. Before cancer, I doubted everything about myself. If I had to offer one piece of advice it would be that you can’t treat what you don’t know about. Knowing you have cancer is a blessing as you can come up with a course of proactive action. Keep your head up and move through the process to better health.
Before my cancer, I was a half-marathon runner. I trained weekly and competed a lot. I studied developmental psychology, and had just received my master’s degree for teaching.
I did not have any symptoms. When I was 27, during an ordinary health check in 2008 the nurse told me she found something when doing a stomach examination, which the doctor confirmed. Two weeks later a gynecologist told me that I had a large tumour in my ovary but that it looked good. After the first surgery, it was discovered to be malignant. A second larger surgery a month later meant I did not need to have any further treatments.
Six months later the cancer returned – this time in my kidney. My third operation removed my kidney and I went on chemo (BEP – Bleomycin, Etoposid and Cisplatine) in 2010.
The day I was diagnosed with a rare ovarian cancer called Dysgerminoma, I remember I was pleased to go to the doctor to get answers to my many questions, but when I saw her face I knew it was bad news.
My life, unfortunately, changed a lot. The chemo left me bedridden for a long time, and the treatments left me unable to continue to train for and run half-marathons. I developed hypothyreosis from the chemo and the remaining ovary did not work anymore. The myoma in my uterus was growing so I had another surgery to remove the uterus and the ovary. I can no longer have children and had not had any prior to diagnosis. I’ve been left with severe fatigue and cannot work 100%.
But, my diagnosis has also been a positive change in my life. I studied to become a nurse and then a cancer nurse. After my cancer I have been an active patient advocate in my country and Europe as a whole as I am a member of many European cancer organizations. I also founded a new gynecological cancer patient association in Finland with two other people.
I remember one friend who called me everyday during treatment, and although I was so sick and could not speak, she always called and talked to me. Everyday she asked me the same question, “what has been good today?” I really did not understand the question at first, and I had no answer when I was sick. When I got a little better, I tried to answer the question everyday because I understood she was me to think about something good.
Two months after my treatment, I got my lovely cat Tigris, who has been my joy. She gives me so much hope, joy, and love, and is my everything even now.
I am stronger than I thought I was. I can survive the bad and try to find the good and be glad of all that I have. But the hardest thing I had to deal with was being so sick and having to rely on my parents for day and night help. The surgeries were major and hard. The hardest thing is to know I can never have children and that I will have side-effects for a long time to come.
If I were to offer one piece of advice, I would say talk openly to your family and friends – they will help you. Talk to a professional who can help you with anxiety.