Nancy

Life was good. Now I know it still is but it took me awhile to believe it. There are those days I still struggle with it but with a wonderful and terrific husband and an awesome family I get through those days. Cancer, really? My story is similar I am sure to many of the survivors out there. I was 34, newly married and ready to begin a family. I scheduled my annual physical and when the doctor was doing my pap he noticed a “cyst.” He said he didn’t think it had been there very long and knowing that my paps are always fine – he was sure it was nothing but wanted to have a gynecologist take a look – since we were ready for a family. My pap came back normal but I went to the gyn to be safe and to again start talking about making babies. He suggested having it removed using the LEEP procedure. That was a Wednesday and by Monday I was told I had cancer. Seriously? How did this happen? I was not a promiscuous person – all the websites say this is a sexually transmitted disease! Did I do this to myself (the question I still struggle with)? The next day I had a PET scan and the following day I met with the only gyn oncologist in my city. He staged me at 1B1. My husband, who was always by my side, and I asked about a radical trachelectomy. Which looking back I am not even sure how we found out about it – because very few of the “mainstream” websites mention it. When we asked – he blew off the suggestion and said I probably wasn’t a candidate and very few doctors perform them. I wasn’t exactly comfortable with that so we got a second opinion. The Second Opinion In comes in the great Dr. Sachin Apte of the Moffitt Cancer Center in Tampa. He was thorough, kind and respectful. He understood my desire for a trachelectomy and said we wouldn’t know if it was possible until they actually did the surgery to see how bad the cancer was. I woke up from the surgery to find out I indeed was able to have the trachelectomy and everything looked good. My drugged and bleary response was a simple, “Yippy.” My husband and mother made a fabulous team in the hospital and when I got home my family and my husband’s family were amazing caretakers. I also had wonderful support from my friends and coworkers who organized dinners for us for every night for five weeks! The south definitely likes their casseroles! It has been a struggle – emotionally and physically but I can say no matter what happens I am grateful for the experience. It showed me once again that my husband is the most fabulous man on the earth – no catheter can scare him away. My family and friends are wonderful and I now know with complete and absolute certainty that I want a family. I want children. I am not sure how we will get there but I know we will. Frustrating… So I am cancer free and beyond grateful that I had one surgery and everything was removed. But there are things that make me mad. 1. Why is it that the only time cervical cancer is talked about in the media is has to do with the vaccine? The vaccine is great and I don’t want another woman to have to go through cervical cancer if it can be prevented but let’s not ignore the women who have endured it or are continuing to endure it. 2. I hate the stigma of the disease being associated with a STD and us women thinking we did this to ourselves – myself included. I don’t think this disease will ever get the attention it deserves with the STD label attached to it. 3. Why is it diagnosed so late for so many women? I am very fortunate in that my cancer was diagnosed early on so I can preserve my fertility but my doctor could have taken a “wait and see” attitude and my position would have been gravely different. Doctors need to start listening to women more and we need to start listening to our bodies more! The HPV test becoming mainstream is key. Ok, I have vented. So now what? The one thing that I wish all the doctors, blogs and websites would build upon is… Now what? Many of the women I see on these sites are in their 20s and 30s and still want to have children. Where do we go to see a doctor who has seen patients like us? I know the oncologist’s job is to save our lives and make sure we are cancer free; but we now have this amazing surgery that allows us to live cancer free and also preserve our fertility but all the oncologists say is “Good luck and be careful.” I wish there was more to it than that. Fertility doctors aren’t really into people like us – they want the problems they are familiar with – low sperm count and women not ovulating regularly. What about those of us who are missing a cervix and part of our uterus? The regular gynecologists don’t want us either – so where do we go? What do we do? The next stage in this battle that I see is bridging the gap between the oncologists and ob/gyns. There’s a partnership that needs to be there and as survivors we need to build that bridge. Maybe this is my calling…I hope we can do it together and bring some miracle babies into the world.