Colleen

I guess I'm different in that I always had a nagging feeling I would develop cancer. There were many people in my family that had cancer...some had survived and others had not. By the time I was 30 all the women older than me in the family had one form of female cancer or another. I was sure my turn was just around the corner.

I was 32 when they found a lump in my breast. I had Ductal Carcinoma In Situ. This is a non-invasive form of breast cancer. It had been caught early and I had a lumpectomy and took tamoxifen for a few years and was on my way. I stuffed it deep down inside. I had been so lucky! I thought my turn had come and gone and wasn't I the fortunate one? So I went on about my life without ever thinking about it again. Funny how the brain works. You think you aren't thinking about something....but it is always there. While I "wasn't thinking about it" I made sure I went to every PAP and every Mammogram each year. The further I got from the time I had the cancer the better I felt. In 2005 at my annual PAP, I questioned my doctor. I hadn't been feeling well. My cycle was off and I had gained weight I had never had a hard time with before. I was tired and I had no sex drive. My PAP came back normal and after all....these symptoms could all be attributed to aging, work, family and major stress....right? I had that same nagging feeling. Just to give you a little background on me...I am not the type to ask for help. When I was diagnosed the first time, I didn't tell anyone but my mom (not my husband, sister or friends).

I've always been the person who is on a mission...time to change the world...make a difference...no time to be sick or feel bad. So when my PAP came back normal, I went about my everyday life. Working hard, playing harder and loving every minute of it. In the summer of 2006 (age 38) things changed a bit. I was so tired most days I had to take a nap and sometime in July, I started to get a clear or almost grey discharge (thought it was hormonal/no odor). We had just bought a new home and I can remember rolling over in bed one morning and looking out the large glass doors to my beautiful backyard and thinking "something is wrong".

I called the doctor that morning and by afternoon I was in. I will spare you all the details of getting my final diagnosis as it was a process due to the rarity of this cancer. I will tell you, that I had no other symptoms other than that discharge and that was because the large tumor covering my cervix was so big it was dying and the cells were shedding. I had Neuro Endocrine Small Cell of the Cervix. This type of Cervical Cancer is very rare and grows rapidly (within months) unlike most cervical cancer which can take years to develop. A lot of pathology was done on this tumor trying to decide which type I had and there was no HPV DNA of any kind in this tumor. I just got it. I was devastated. Along with a diagnosis of cancer I was also getting a prognosis of about a year. How could this be? I couldn't run to mom this time. She had passed away a few years before from ovarian cancer. If I might not make it, then I needed to get things in order. How in the world would my husband be able to take over all that I do and my children were so young....how could I do this? How could I leave them...then I realized I didn't have to die just because they said I probably would. What was I thinking? I gave myself a mental slap across the face and turned directions. I was going to fight and fight like hell I did.

Because so little is known about Small Cell in the cervix, they knew very little about how to treat it. I started chemo and external radiation almost immediately. There was no time for surgery as small cell is systemic and travels without warning. They hit my body with whatever I could handle. After external radiation came the internal radiation. Something akin to a dark ages torture device. But, 9 months later I was cancer free. I couldn't work as the treatment for me was completely debilitating and although we had insurance it wasn't very good when it came to big things like beating cancer. We lost everything by mid 2007, but I was cancer free. I stayed that way until 2009 when I was re-diagnosed. Small Cell likes to spread and usually when it comes back it metastasizes all over the place. Mine didn't. It came back to the same spot. This time I had more chemo, but couldn't have any more radiation to that area. After the chemo I had a full hysterectomy and in November 2009 I was cancer free once again.

In 2008 I started a website called Cancer Comrades with a woman that I shared this disease and my birthday with. We became instant friends as it had been so hard having a diagnosis of something so rare and no one to share it with. We started CC for women out there that had SCCC or had just been diagnosed with SCCC to come together and find other women in their same boat. I cannot tell you how life altering it has been to meet and have a relationship with these few wonderful women who's lives have been changed forever by this disease. We have lost a few a long the way, but we comfort each other and the families of the ones we lost and it gives us purpose and the fact of having cancer doesn't seem to be in vain. I still have a hard time asking for help. I am definitely on a mission and want to change the world so none of that has changed. But I am truly changed by this journey in ways I cannot put into words. I no longer ignore the fact that I had cancer and may live with it for my entire life. I embrace who I am and hopefully share in my experience so I can help others.

If you are reading this and have not been diagnosed with any type of Cervical Cancer, I am so happy for you. Please keep in mind that not all Cervical Cancer is caused by HPV and to not have a PAP or HPV test done every year is playing roulette with your body. Take care to all and my best wishes.