Amy's Story: cervical cancer

Listen With ( 10 minutes 17 seconds )

Amy's experience as a cervical cancer survivor

My name is Amy. I'm 35 years old. My husband and I just recently moved to Texas. I don't have any children as I was diagnosed with invasive cervical cancer when I was 29 years old. And I'll go ahead and tell you about this. About a year before my husband and I wanted to begin trying to have children, I had decided to change gynecologists because I was needing to get in with a group of physicians who delivered babies. So I went in to the doctor and this was in 1994, summer of 94 and discovered or told anyway that I had some sort of a cervicitis. So for several months after that I took antibiotics and tried to get over the problems that I was having, and the antibiotics didn't do anything for me because as it turned out, it was cancer. Finally, in November I had a culdoscopy done which is the biopsy of the cervix, where they take a cone shaped area of tissue out. That was done, that was right before Thanksgiving. Monday morning after Thanksgiving I got a phone call at my office and was told it was invasive cervical cancer. Went on and had the surgery, the very next morning and it turned out it had moved into my lymph nodes, and so along with it being a radical hysterectomy, also all of the lymph nodes were taken out and lower and upper again.

An emotional struggle

I recuperated I guess for several weeks and then began radiation therapy in Little Rock, and that went on I guess for six or eight weeks, because I had internal and external. And then I started wondering what in the world had happened, you know, I thought that I was healthy. Didn't have any idea at all that there was anything wrong, and as I had all these questions running through my mind I finally one day I walked into the laboratory where the pap smears had been read. I checked all of the slides and records out for the entire fall, everything that they had on me, every pap smear. And I went and had them independently reevaluated, and I learned some pretty shocking news. And that was that for three years prior to the time that I was diagnosed, that I actually had had these abnormalities or cancers that were showing up, and apparently the people who had read them had not detected those abnormalities. So basically I guess what I'm saying is that it's the physicians and the lab technicians who had examined those abnormalities on the pap smears, well, especially the one in 1992. The cancer could basically have been prevented.

Anyway, so, knowing all that, you know of course I struggled with the whys and what-ifs and all that, and at that point you know, started trying to move forward again with my life. I guess my major issue with the whole ordeal was the fact that I wouldn't be able to have children. That was something that my husband and I had long wanted, and so biologically, or physically, anyway, I'm not able to do that. And for some reason that part just didn't turn out for us. So since all that has happened and you know, I went through the treatment, and I did go through a lot of emotional problems and adjustments. I had to really work hard to overcome some real sadness in my life and in my marriage, you know, with not being able to have kids. So, at this point everything is back on track. I'm five years out and really happy about that, and I do a lot of work with CARTI , which is the Central Arkansas Radiation Therapy Institute, and the Arkansas Cancer Research Center and I've also begun spending time at Arkansas Children's Hospital, volunteering my time there. And I have found that the volunteering effort definitely helps with my inner spirit and inner peace, and makes me feel that I'm perhaps giving something back to those who definitely were there for me during such a low time.

Get a second opinion

So, I hope that, everything is working out fine. I guess if there were something that I could tell, or maybe advice that I could give, the one thing that came out in my situation was that you know I have talked about the pap smears and the different routine testing that goes on, especially for women. I really feel like even when you feel healthy and you think that your test results are normal, that you don't think that you should doubt those results, but I think sometimes, and not often, but sometimes, those test results are wrong, as that happened in my situation. And I would just encourage women when you have your pap smear done, not every single year but every once in a while, go ahead and get a second opinion. Or what I've done in my situation, every time I have a pap smear done at this point, I have it, it's read by the one particular lab that the doctor's office uses, but I also have them go ahead and send it to an outside laboratory. There are several new labs that offer this, it's computerized reading of the pap smear test itself, and the accuracy is just unbelievable. After my result comes back from the doctor's office, they just automatically go ahead and send it out. Now, it does cost a little more, but to me it's definitely worth it to have that done.

So, you might think about that, and also, when you're choosing a gynecologist, choose one who's certified by the National Board of Medical Examiners, and make sure that the gynecologist that their certification indicates that the physician has stayed up to date on the latest research and techniques. If you're sexually active or over the age of 18, you should have a pap smear taken every year, and ask your gynecologist about the accuracy rate of the lab that will be interpreting your results. One thing that I think is important, and I think a lot of women don't realize this, but you are entitled to a copy of your pap smear report each time you have one done. When you get that report, they're not difficult to read, they're easy to read. Take a look at it yourself and read it and discuss it with your doctor and ask any questions that, if there's some area checked on the form itself that you're not understanding of or something that might alarm you, call the physician back and ask them those questions. And just in general don't be afraid to talk with your gynecologist about the interpretation process before and after your pap smear, because asking those questions and establishing a dialog with your physician, helps insure that you're going to receive the highest quality of care.

Dealing with the side-effects and moving on

Okay, I was talking about the effects of radiation, mainly. Anyone who's had radiation to the abdominal region, in my situation it was the exterior which were the beams that actually go into your body. But then additionally I had some of the internal implants done, and with the hysterectomy itself, I think about a third of the vagina itself was removed. And then on top of that, with the radiation, it shrinks that tissue and the inside of the vagina or the wall I guess, the vaginal wall, and it makes things a lot smaller. My husband and I had some real difficulties sexually. There were a lot of challenges with that, especially with the radiation and your, your insides, they are irritated and they talk about how strong the radiation beams are, and it's true, they are. We had challenges with that, as well as I had a lot of digestive issues, too. I lost a lot of weight, and but I guess, I guess it's difficult to tell one thing. I guess the two main things that the radiation really gave me problems with was the digestive functioning, and the sexual aspect of things, because it made sex very painful. There was bleeding, and it was one of those things that eventually sort of starts affecting you mentally, too and emotionally, because you're feeling like you're not good enough, or you're not pleasing to yourself, and we really had to work through some issues with that. And just make sure, I guess I would say, if you find yourself having these problems, help each other. Don't be afraid to talk about it, and don't be afraid to get professional help, too, because there are all different ways to look at things and think about, you know, what's going through your mind and in your heart and there is help. Eventually, things do become pretty much normal again, and that's the good news. So, I'm five years out now and I can tell you things are pretty good. Anyway, I hope that helps.