Gynecologic Cancer Survivor Stories
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If you are a survivor of cervical, ovarian, uterine, vaginal, or vulvar cancer, please consider sharing your story here. Send a note to CDC-INFO and we'll get in touch with you. Please include "Inside Knowledge Personal Story" in the subject line.
Age at diagnosis: 53
Uterine Cancer Survivor
I am 53 years young, married, and the fourth child of 13. My oldest sister and my mother are my best friends. And I have the best cat ever—Pierre. Overall, I have always been pretty healthy—I try to eat right and exercise. I like yoga, ballet, writing, reading, and cooking.
In the spring of 2013, I kept seeing a commercial for the Inside Knowledge campaign and kept thinking about it—‘I have those symptoms—spotting after menopause, a bloated feeling, having to go to the bathroom a lot, and this pressure/pain that was not like the cramps and pain I used to get with my period.’
One day in August of 2013, I just got sick of it, so I called my gynecologist, and she wanted to see me as soon as possible. She didn’t like the sound of my symptoms at all. She scheduled lots of tests. It was all a bit confusing because I felt fabulous and healthy.
The tests showed I was postmenopausal, my Pap was normal, and an ultrasound suggested my uterine walls were thicker than normal, which could have been caused by many things, such as endometriosis (a condition where tissue from the lining of the uterus grows elsewhere in the body), hyperplasia (a sign of abnormal or precancerous cell changes), or a gynecologic cancer, such as uterine cancer. I didn’t like hearing the “C” word…Who does?
The next step was a D and C and hysteroscopy. (D and C, short for dilation and curettage, is a procedure to scrape and collect tissue from inside the uterus. Dilation ("D") is a widening of the cervix to allow instruments into the uterus. Curettage ("C") is the scraping of the walls of the uterus; hysteroscopy allows a doctor to look inside the uterus). Both procedures were scheduled for late September. I was very positive that my doctor would only find small non-cancerous fibroids and that after the D and C, they would be gone. I NEVER imagined her calling to tell me, “Your biopsy came back cancerous.”
POW. The news punched me in the gut. “OH MY GOD. How am I going to get over this?” I thought. “How am I going to tell my mother?!? It will break her heart.” I made my husband call my mother because I just couldn’t do it.
After a second opinion confirmed it was cancer, the ball just started rolling. They moved quickly and with a real sense of urgency. My gynecologist referred me to a gynecologic oncologist. The day after my appointment with that doctor, I had a complete hysterectomy to remove my cervix, fallopian tubes, and ovaries.
A week after my surgery, the pathology report confirmed I had stage 1, grade 1 cancer localized to the uterus only, which meant I was cancer-free. No chemotherapy, radiation, or additional treatment was needed. We were so happy and relieved, we cried.
I was extremely fortunate I caught this cancer early. Had I put it off and waited, the outcome could have been completely different. From initial visit to receiving final pathology was about 10 weeks—10 long, draining, and stressful weeks. After the initial shock of being told I had cancer, I noticed a change in my attitude. I looked at life differently…perhaps more appreciatively, and I stopped getting annoyed at what I call little things.
I am very lucky and so grateful I saw the Inside Knowledge commercial and took action when I did. Those commercials saved my life.
Women, if you have symptoms, listen to your body, don’t be afraid. Make the call. The sooner the better.
Age at diagnosis: 52
Uterine Cancer Survivor
My mother died of breast cancer at age 52. Her mother—my maternal grandmother—and my older sister each had breast cancer. Both had successful surgery. I had some calcification, but no breast cancer. (Calcifications are deposits of calcium in the tissues. Calcification in the breast can be seen on a mammogram.) I was waiting for my turn to get the dreaded disease, since it was obviously in my family history. Instead, this happened:
In late 2005, after going through menopause and not having a period for one year, I suddenly had a full flowing ‘period.’ I was 52 years old. Luckily, I already had a regular gynecologist appointment scheduled the first week in 2006.
I didn’t mention the bleeding to my doctor because I always thought that after menopause, periods were “off and on.” When I got a Pap test, there were suspicious cells on my cervix. The doctor said I needed to come in for a biopsy. When that was over, the doctor called and said I’d need a D and C. (D and C is a procedure to scrape and collect tissue from inside the uterus. Dilation ("D") is a widening of the cervix to allow instruments into the uterus. Curettage ("C") is the scraping of the walls of the uterus.)
After that, my doctor called to tell me that I had cancer, and needed to get a hysterectomy right away. I started to get concerned. I went in for a complete hysterectomy—including removal of the ovaries and the cervix. I was told that it looked like stage I endometrial cancer, a type of uterine cancer.
But, it turned out that it was more advanced—stage 3. Cancer cells had spread outside the uterus and were found in the peritoneal fluid of my abdomen. (Peritoneal fluid is naturally present in the abdomen, where it helps to moisten the tissue that covers most of the organs in the abdomen.)
I consulted with three doctors. Each laid out very different treatment options, ranging from daily radiation treatments for six weeks, to watching and waiting. Ultimately, I went with my radiologist’s recommendation to have three radiation treatments on my vaginal cuff. (The vaginal cuff is the upper end of the vagina that surrounds the cervix and remains open after a hysterectomy.)
That was followed by close surveillance to detect if any cancer cells were present. I had CT scans every 6 months. (A CT scan is also called is CAT scan, and it takes detailed pictures of areas inside the body from different angles, using a computer linked to an X-ray machine.) In 2007, during a routine CT scan, my doctor spotted something suspicious.
Laparoscopic (minimally invasive) surgery revealed lots and lots of tiny tumors. I was enrolled in a clinical trial using chemotherapy treatment. I felt horrible. But chemo is different for different people.
When that was over, I had years of scans every 6 months. In October 2012, I was told that I was no longer considered ‘in remission,’ but CURED!
At the beginning of my treatment, my doctor told me that he was retiring, but he hung in there for five more years. I feel that he wanted to see it through. He retired after I hit the five-year mark. I am a true survivor, but I did not do it alone.
My message to other women is to educate yourselves about the symptoms of gynecologic cancers. Any bleeding after menopause is a signal to at least get checked out. And it’s up to you to be your own advocate. So don’t wait, get checked out if you have bleeding during or after menopause. I can’t stress enough how important that is.
Age at diagnosis: 65
Ovarian Cancer Survivor
In November 2010, when I was 63 years old, I began to experience unrelenting pain in my upper right abdomen and around my right rear flank. It would wake me at night. I went to my family doctor and she ordered abdominal and pelvic ultrasounds. Kidney cysts were reported and I already knew about those. In addition, another cyst was noted—thought to be an ordinary ovarian cyst—although a large one.
The next visit was to my kidney doctor in March 2011. He looked at the ultrasound report, and strongly suggested I see about getting the ovarian cyst removed, just in case it was cancer.
By the time I found a gynecologist to go to, it was December 2011. She did a CA125 test that showed very low numbers, a good thing. She suggested a standard open surgical hysterectomy with biopsies, which would have a recovery time of 4–6 weeks. If the biopsies were positive, she said, I could go to a gynecologic oncologist for additional surgery.
I decided, why not have a gynecologic oncologist do the surgery and take care of everything at the same time? The following August, my gynecologic oncologist was able to perform a complete hysterectomy and remove my right ovary through a laparoscopic (minimally invasive) procedure. (My left ovary had been removed 15 years before because of a cyst).
Hospital time was less than 36 hours. Recovery time was about 10 days. The ovarian cancer was diagnosed as a clear cell, stage 1C. More than 14 lymph nodes were removed and tested, as well as part of the omentum. (The omentum is the lining of the abdominal cavity.) All those tests were negative for cancer.
The tumor was attached to the rear of the abdominal cavity and was difficult to remove. A mass that large pressing against the kidneys and being attached was probably the reason for the pain I had experienced.
During the follow-up with the doctor, he explained that clear cell is very difficult to treat and often comes back. I asked him if he felt he got it all and he said he felt confident the cancer was contained in the cyst and it didn’t even look like cancer when he sent it to the lab to be tested.
I did lots of research and found that clear cell is not that common and drugs that are typically recommended for ovarian cancers may make the cancer type I had even more aggressive. As a result, I opted for follow-up with PET scans and no chemotherapy. My PET scan in February 2013 was clear. I have had a couple more recent MRIs and CTs which indicate some fluid in the area where the ovaries had been, but it does not appear to be problematic at this time.
(During a PET scan, a small amount of radioactive glucose [sugar] is injected into a vein. A special scanner then makes pictures of areas inside the body where the glucose is taken up. Cancer cells often take up more glucose than normal cells, so the pictures are used to find cancer cells. An MRI is a procedure that uses radio waves and a powerful magnet linked to a computer to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. A CT scan is also called is CAT scan, and it takes detailed pictures of areas inside the body from different angles, using a computer linked to an X-ray machine.)
I feel very fortunate that my body spoke to me. I’m glad I kept pushing for assistance until I finally found caring health care providers who could get me the care I needed. I learned so much—mostly that you need to be your own best advocate and be willing to do lots of research.
Debra "Debbie" E.
Age at diagnosis: 57
Ovarian Cancer Survivor
The women in my family have a history of being healthy and living a long, long time. I was the last person I thought who would ever have to worry about a major health crisis. I have a beautiful family—two sons, three stepdaughters, four grandchildren, and a supportive husband. I have always been active and enjoy outdoor sports and activities, and I guess you would say I'm a workaholic.
Before I was diagnosed with ovarian cancer, I rarely got sick. Then, a few years ago, I had some symptoms that were unusual for me—I felt bloated and gained weight for no reason I could explain. I also noticed other things that were unusual for me, like constipation, and I felt nauseous when I ate. My doctors told me I had hypothyroidism, put me on medication, and the symptoms went away temporarily. I'm still not sure if the hypothyroidism symptoms were related to what came next.
It was about a year later when the symptoms returned. And there was something new—I saw just one single spot of blood on my panti-liner. I was 57 and menopausal. I made an appointment to see my OB/GYN, something I had been religious about doing. The spot of blood reminded me it was time for a checkup.
Because of the spot of blood, my OB/GYN recommended an ultrasound and biopsy. I think the ultrasound may have saved my life because when the results were inconclusive, my OB/GYN referred me to a gynecologic oncologist, a doctor specially trained to diagnose and treat women who have cancers of the reproductive organs. The gynecologic oncologist performed laparoscopic surgery to find out whether a tumor they had discovered was cancerous. Well, I did have cancer, and I ended up having a full hysterectomy rather than just the planned laparoscopic surgery.
I was shocked and devastated to learn I had cancer and that I would need additional therapy. But about three weeks later, I began a chemotherapy regimen of six sessions, each three weeks apart. I couldn't help thinking, "What happened to the life I was enjoying just three weeks ago?"
After an emotional roller coaster that lasted for about a year following my surgery, I now feel more like my old self. And I've come to accept that while some things in life are in my control; some are not. Because of what I went through, I would like to tell other women to pay attention to their bodies. Don't get too wrapped up in your "phase of life"—like having menopause—and if you have troubling symptoms, don't dismiss them.
Age at diagnosis: 64
Cervical and Uterine Cancer Survivor
I have three children, six grandchildren, and seven great-grandchildren. They keep me busy! I also take physical activity classes offered through a local hospital, including a "Healthy Steps" class, baton twirling, and belly dancing.
In August 2007, I began having heavy bleeding and I went to a nearby medical clinic. The doctors there found that I had something suspicious on my uterus. They referred me to a gynecologist who did a biopsy, which revealed I had cancer. I was then referred to a gynecologic oncologist, who did an additional biopsy on my cervix, which also showed the presence of cancer cells. To this day, the doctors say they are not sure which came first, the uterine cancer or the cervical cancer.
I had radiation and chemotherapy. I was lucky because I didn't have any side effects from the treatment. After the radiation and chemo, I had a total hysterectomy and my ovaries were removed. I'm now cancer-free.
Today, I feel pretty good. I hope that other women will not be in denial about their risk for cancer. I had a family history of cervical and uterine cancers but I didn't get checked until I had symptoms. So if you have a family history, tell your doctor and ask if you should have special tests to find anything early. And for women with a limited income, there are programs like New York State's Cancer Services Program that can help.
Today cancer is no longer a death sentence. So don't be in denial about cancer just because you think you can't afford diagnostics and treatment if needed.
Age at diagnosis: 62
Cervical Cancer Survivor
I've been a hairstylist for more than 35 years. I love to read and listen to music. My daughter is in the music business. I've worked in New York City for Broadway shows and for Saturday Night Live, but I was a freelance stylist when I found out I had cervical cancer. I never thought I would have cancer, but in 2009, I was diagnosed through the New York State Cancer Services Program. Because of the high cost of insurance for the self-employed, I didn't have health insurance at the time.
I went to an urgent care clinic because I was having some pain and I wanted to know what was causing it. I had not had a Pap test in recent years, so the doctor performed a Pap. It came back with suspicious findings. I qualified for additional diagnostic tests and treatment through the New York State Cancer Services Program. The clinic referred me immediately to a gynecologist at a nearby hospital. At the hospital, I had more tests, and they showed that I had cervical cancer.
I was shocked, but I didn't panic. I didn't cry. I recall feeling what I can only describe as an out-of-body experience that I will never forget. Within a few weeks of diagnosis, I began treatment that included both radiation and chemotherapy. Follow-up tests show I'm still cancer-free, and the outlook for my future is bright! I'm even back to work part-time, and I enjoy staying active.
I want to emphasize to women that it's so important to pay attention to anything out of the ordinary with your health. And get your Pap smear regularly. It really can save your life.
Age at diagnosis: 25
Cervical Cancer Survivor
When I was 25, I was living in Washington, DC, working as a television producer and loving life. I felt great and healthy, so I put off getting my routine Pap test for a few years. I thought it could wait.
When I finally did go for a check-up, I got the shock of my life. I had cervical cancer. I was devastated, and I asked myself how this was possible. I was too young and too strong for this.
My doctor recommended a radical hysterectomy, which meant I would not be able to have kids, something I had always hoped for. I searched for second opinions to understand my options. But in the end, I had the hysterectomy. I also had chemotherapy and radiation.
I was depressed, but with the support of my family and friends, I finished treatment.
Now I'm cancer-free and enjoying life! I learned just how important it is to have a Pap test regularly. If I hadn't had that Pap test that led to my cancer diagnosis, I might not be here today. I'm living proof that screening can find cervical cancer at an early stage, when treatment works best.
The Pap test actually helps prevent cervical cancer. It can find precancerous changes on the cervix that can be treated before they turn into cancer. I'm a big believer in telling women about the benefits of the Pap test. In fact, in 2005, I founded Tamika & Friends, a non-profit, community-based organization dedicated to raising awareness about cervical cancer and human papillomavirus (HPV).
I hope other women learn from my experience and make sure to have their Pap tests as recommended.
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