Doctors Told Me My Uterine Cancer Was Menopause

When I was 52 years old, my cycle became a bit irregular. I had some spotting, and I couldn’t tell whether it was my “new normal period” or just random. Many of my girlfriends were having the same issues and we’re all about the same age, so I didn’t think much of it. It just seemed like we were all going into menopause at the same time. (Want to pick up some healthier habits? Sign up to get healthy living tips delivered straight to your inbox!)

I mentioned the spotting to my gynecologist when I went for my annual Pap test and pelvic exam a few months later, and he confirmed that menopause was to blame. Not only is spotting one of the main symptoms, but he even drew blood to test my follicle-stimulating hormone levels and indeed, the numbers were elevated, which is another indicator that I was heading into menopause. After a few weeks the spotting stopped, so I thought everything was OK. Then it returned four months later. The amount was about the same, very minimal, but this time it was also accompanied by a watery discharge that was odorless and colorless. So I went back to the doctor, and because my ob-gyn was on vacation, I saw his colleague instead. She cultured the discharge and found nothing. Once again, I was reassured that it was all menopause-related.

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Over the next few months, the spotting and the discharge came and went, still never changing in amount, consistency, or color. I was annoyed about having to wear pads every day, and as my symptoms persisted, so did a growing suspicion that it could it could be something else. Maybe my family history was gnawing at the back of my mind. To say that my family has a susceptibility to cancer is an understatement: My mother is a colon cancer survivor, her mother and her grandfather died of it, and most of her 13 brothers and sisters either had it or died of it. Some of my first and second cousins have had it, too. One of my first cousins recently lost her 15-year-old daughter to brain cancer. Some of my aunts had uterine cancer.

I decided to go back to the ob-gyn.

My doctor had since retired, so I selected another one within the practice. This doctor was much more proactive, and within a month I had had a battery of diagnostic tests: an ultrasound, sonohysterogram and dilation and curettage (DC)/polypectomy with hysterography.

A DC is a procedure that is used to obtain a sample of the lining of the uterus to test it for cancer. While I was in recovery, the doctor told my mother and my sister, whom I’d brought along for support, that he didn’t expect any unusual findings and that he’d see me in three weeks for a follow-up.

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But just four days later, his nurse called and said my pathology report was back; the doctor wanted to see me in his office the following day. When he sat down, I noticed the somber look that came over his face. He told me that I had endometrial adenocarcinoma—a.k.a uterine cancer.

Had I been a lot younger maybe my ob-gyn would’ve dug a little deeper.

A drum started beating in my head, drowning out everything he said after that. My mother was with me and I saw her stiffen and look straight ahead at the wall behind me. I watched his mouth moving, but no words were coming out—at least none that I could hear. Finally I heard him ask, “Do you have any questions?” My mother responded for me, “Do you have to take her ovaries?” He said yes, they would need to take “everything.” What I’d missed him saying was that I’d need a radical hysterectomy with bilateral salpingo-oophorectomy—my ovaries, uterus, cervix, and fallopian tubes would all be removed. I was getting the mother of all hysterectomies.

Admittedly, I resented my original doctor at first; I thought he had dropped the ball. But after doing research of my own I learned that early-stage uterine cancer symptoms really do mirror those of menopause. Had I been a lot younger maybe my ob-gyn would’ve dug a little deeper. I had also never had a negative Pap test and I had no pain at all, so I understand why he went with what seemed obvious. I still wonder, though, had he been at my return visits, would he have taken the same proactive approach as the last doctor?

Fortunately for me, the cancer was caught early enough at stage one that I didn’t need radiation or chemotherapy. I do, however, have to see my oncologist every three months for two years, then every six months for three additional years. After that is when I will hit the magical five-years-cancer-free mark—the benchmark for when a person is considered cured.

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A little more than a month after my hysterectomy, my niece, a surgeon, mentioned Lynch Syndrome.

My hysterectomy was a major surgery—pretty much the most extensive one they do in the gynecologic world. I know there are a lot of women who say they don’t feel the same after having a hysterectomy, but that has not been my experience at all. I don’t feel as if anything ever happened, mentally or emotionally. Even my physical changes, other than the surgery, are only an occasional mildly warm flash on my face that lasts about 60 seconds. I have some vaginal dryness, but not to the degree that I need lubricants.

A little more than a month after my hysterectomy, my niece, a surgeon, mentioned Lynch Syndrome. She had brought it up a few years earlier, but I don’t think I really understood the gravity of it then. Three percent of people with colon cancer have Lynch Syndrome, which is a genetic predisposition to colorectal cancer, while 50 percent of their family members have it, too. While Lynch is widely correlated to colon cancer, it isn’t the only type that can develop. Uterine, stomach, ovarian, small intestine, kidney/urinary tract, brain/central nerve system, pancreatic, and more are all considered to be cancer risks for people with Lynch Syndrome.

After losing her daughter, my cousin decided to get tested, and it came back positive. And after explaining my family’s cancer history to my oncologist, he recommended I also be tested. And it came back positive. 

Knowing what I now know, I’m in a better position to be more vigilant about taking measures to prevent the types of cancers I’m predisposed to. Of course, I will never get ovarian or cervical cancer, and my doctor thinks a recurrence of uterine cancer in the walls of my vagina is not very likely after my extreme hysterectomy. But I do still have a lot of body parts that Lynch Syndrome targets. I now have to get a colonoscopy annually, as opposed to my former every two to three-year routine. But, knowledge is power. And I am now empowered.

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Today I urge women to: 

• Know your family history. If there have been instances of colon cancer, get DNA testing to find out if you have Lynch Syndrome.
• If you do have Lynch Syndrome, make sure you understand what it is and that it is not colon cancer specific.
• There may be no pain or discomfort with early-stage cancer, so make sure to pay very close attention to what your body tells you.
• Keep a close watch on your menstrual cycle. Clearly, at a certain age it may become irregular, but pay attention to your flow, look for excessive clotting and anything that just seems out of the ordinary.  

Our bodies have a way of giving us clues that something is not right. I listened to mine and was persistent about getting answers. And that is what saved my life.