Jax, Massachusetts, USA: For cervical cancer stage 1B, I visit the gyn-oncologist every three months for a Pap test. I'll do this for two years, then move to six month check-ups for the next three years. I also use self-examination in a big way. I now examine my genitals in the same way I administer a breast exam - every month, on the first day of the month.
Karen, Alberta, Canada: After my hysterectomy for stage 1A cervical cancer, I had Pap smears and pelvic exams every three months for two years, and then every six months. A colposcopy was done at the end of the first and second years, and then discontinued as the risk of recurrence lessened after two years. It was a Pap smear that detected a vaginal recurrence four years after my hysterectomy.
After radiation treatments, I visited the radiation oncologist every three months for the first year, and then continued with three-month Pap smears for the second year, alternating between driving the four hours to see the rad-oncologist, and my local family physician. Each year, around the anniversary of finishing the radiation treatment, I would have a colposcopy as well.
I have just passed the five year mark, had a "clean" colposcopy, and was told that I no longer need any special follow-up, that I can go back to "just" annual Pap smears. I plan on continuing with six month Pap smears indefinitely for my own piece of mind.
Katie, California, USA: Although my cervical cancer was Stage 1B, I had several positive lymph nodes, so I am at a higher risk of recurrence. For the first two years, I saw both my gyn-oncologist and my radiation oncologist every three months. I received Paps every three months, a yearly chest x-ray, and periodic CT scans. After three years, I graduated to a four-month schedule. It has now been four years since completion of treatment, and I am presently on a six-month schedule with both doctors. Needless to say, I've had a LOT of pelvic exams over the last few years!
Georgia P., Massachusetts, USA: For my follow-up after treatment for endometrial cancer (surgery and radiation), I have annual chest x-rays. I also had a pelvic exam and Pap smear every six months for the first two years, and now I have these annually as well. The reason for the chest x-rays is that endometrial cancer can metastasize to the lungs; the reason for the Paps is that, even without a cervix, recurrence is possible at the site of the vaginal incision. A Pap will pick up any abnormalities there. The pelvic exam is one of the most important follow-ups, for visual examination of the genital area, and manual palpation of the pelvic area.
Mae, New York, USA: I had endometrial cancer, stage 1, grade 3 at age 39, treated with surgery, radiation and chemotherapy. My gynecologic oncologist is conservative and closely monitors my health. My surgery was in 2001. From 2001 to 2003, I had a CT scan (with contrast) of my chest, abdomen and pelvis every three months, and was also referred to have a baseline bone density test, since I had a surgically-induced menopause.
Susan L., Michigan, USA: With the rare cancer I had -- endometrial stromal sarcoma (ESS) -- there is no five year cancer-free mark when you are considered cured, because the cancer can recur years later. My health will probably be monitored by my oncologist forever.
My advice to anyone with a rare cancer is to go to the best major cancer center you can find. At large cancer centers, more research is done and if the center is also a medical school, the students and doctors have to keep current on what is new in their field. Even though we're in a minority, there is no lack of care for those of us with rare cancers at a major cancer center - in fact, it is the opposite: the students and doctors do all the research they can to help you, and you're not lost in the crowd among the patients who have the more common cancers. Rather than carry the burden alone, the gynecologic oncologist has the residents help with research. In such a competitive environment, when research is part of a residency, it is done well.
Gina, Pennsylvania, USA: My case was a little unusual, so I had to be followed very carefully for my early stage ovarian cancer. I was first diagnosed when I was 26 years old, and had just one ovary removed (oophorectomy) to try to save my fertility. Because I still had my other ovary, uterus and tubes intact, I had transvaginal sonograms, CT scans, and blood work (CA 125 and liver function test) every three months. Since I had cancer recurrences, we stuck to the every-three-months schedule for five years. After that, we went to every six months. (Eventually, I had yet another recurrence when I was 33, which required a full hysterectomy.)
Cyndee, Pennsylvania, USA: For my follow-up after treatment for stage 3C ovarian cancer, I had a CT scan, then saw my gynecologic oncologist every month for the first three months. After that I began to see him every three months, always having a pelvic examination and blood work, including a CA 125 blood test. During the visit, I would voice any concerns or discomfort I was having and discuss this with him.
When my treatment ended and follow-up began, I found it to be a very frightening time and I became very emotional. Throughout the surgery and my chemo treatments, I was cared for with strict scrutiny. But then, after my treatment ended, I felt like I was being kicked out of the "safety net" of actively fighting my cancer. The idea of letting three months pass with no one checking me was terrifying. During this period, it is normal to feel apprehensive and vulnerable. But if these feelings become a problem for you, it may be wise to speak to a counsellor.