Hi, my name is Colleen Marlett and as you know from my last article, I am a cancer survivor. I survived a rare and aggressive cancer called Small Cell Carcinoma of the Uterine Cervix, or SCCC. It is a rare form of cervical cancer and although Small Cell Cancer is not rare in the liver, lung or brain; it is extremely rare when it originates in the cervix.
My purpose of this article is to help women who have been diagnosed with this disease find information they are searching for (there is almost nothing about it on the web) and give them hope that they can make this journey just like I did.
First let me start by reminding everyone that I am not a doctor and I do not have all of the answers. This is information I was able to find on my own and by asking questions. Please ALWAYS consult your health care professional before making any assumptions about your diagnosis or prognosis. We are all different and respond differently to treatment. What was right for me and my body, may not be what you need. This is just a starting point; A place to go and read about someone who has survived. My wish is to be able to give you the hope to sustain yourself through this journey and come out the other end, cancer free. I hope you find this article helpful.
Like I said, I asked questions. Where I live, they had a hard time diagnosing my tumor as it had never been seen by any of the doctors that were examining me. Cervical Cancer, as we know from all the HPV commercials out there, are usually caused by this sexually transmitted disease. They have even linked a certain strain (HPV 18) that is not as common as other HPV’s, to SCCC. However, I did not have any form of HPV. I had just had my well woman exam 10 months earlier (no sign of anything wrong)and I was not scheduled for another for 2 more months. That’s how fast and aggressive this cancer is. Unlike other forms of cervical cancer that take years to develop and can be headed off when a PAP comes back abnormal, there were no such warning signs. Female cancer ran ramped in my biological family, so I was pretty persistent about making all of my doctor appointments. I had been under a tremendous amount of stress for some time and we were in the middle of moving back to our home town when I started to notice symptoms. I had a discharge. There was no odor and no color and it was very infrequent and really caused me no issues. I asked a friend in the health care field what she thought and she said it could be hormones or stress. I dismissed it as I had more pressing issues to deal with. Two months went by and the discharge was more frequent and had an odor. I was home, so I decided to go and see my trusted and true Physician. Not a moment too soon. I did not have irregular bleeding or pain with intercourse. I understand that these are some of the symptoms that other women have suffered. I had a huge black tumor inside me. It had started to kill of the tissue and looked to be very advanced. I had several PET CT scans and an MRI over the next week. I searched and searched on the web for information while I waited for the pathology to come back and tell us what form of cervical cancer this was. There was one article on SCCC but I wasn’t looking for it at the time. Everything about the more common forms of the cancer did not fit. I went to my Well Woman exams every year faithfully. Something would have shown up before this. Maybe not, but I thought it had to have shown up before now if it were of the more common variety. I went back and found the one article on SCCC and prayed it wasn’t this form.
It was. Because all the doctors that had examined me (4 in all); were not able to see the difference between the tumors, made me weary. Not so much of their ability to treat me, but I felt if they had never seen it or dealt with it, how would they ever know how to treat it. I searched again to find the one article I had come across before. I read it more intently this time. The prognosis was horrible. It wasn’t giving me 5 or 10 years; it was basically saying that I had a year or two and almost no chance of ever being cancer free. No one really knew much about the disease. Because it was so rare, there really was no data on it and no one could give me a good (or bad prognosis). What my doctors did say was that I was young and strong and they would fight it with whatever I could take. If I could get rid of it completely the first time around, I had a good chance of surviving. If I could stay cancer free past the 18 month mark after the end of my treatment, I had a great chance of being cured.
I went ahead and did some research into Small Cell of the liver, Lung and brain. What I found out was that it responded well to chemo coupled with radiation. My doctors of course already knew this and that was the plan. The one thing that hung heavy on my mind was surgery. The usual plan of attack for all cervical cancer was a hysterectomy first, heal, then start treatment. But when the small cell was in other places, no surgery was done; the patients went right into treatment. Remember, this cancer is aggressive and moves fast. The women in the article that I read….. That hadn’t fared well, all had hysterectomies first. I did not want a hysterectomy. I asked my doctor the day we discussed my treatment plan; “Would you operate if this were Small Cell of the liver, lung or brain”? His answer was “No”. I did not have a hysterectomy and although there is no medical data to support my feeling on this, I believe that decision saved my life. Like I said before; check with you doctor. I am not telling anyone not to have a hysterectomy. For me….it was right. I will have one eventually as keeping all of that inside of me only raises the chances of recurrence in that area.
It has been 18 months since the end of my treatment. It has been 17 months since I was officially “cancer free”. My next PET CT will be in November and at that point, if I am still “cancer free”, I will have definitely beaten the odds. They tell me this type of cancer likes to come back and the target period is usually 6 to 18 months after treatment. So, OK….I have already won that battle. But it could come back at any time. The doctors want to see me cancer free for 5 years. Some information says 3 years. But for me…… Even if it does come back…I’ll fight it again…and I will win! I have no expiration date and I can’t let statistics dictate my survival. They are making strides every day. They hit me with everything my body could take and there were days I could barely get out of bed. But I am good now. Recovery from the treatment has been rough, but no matter, I will do it all again if I have to. I plan to stay cancer free, but I want everyone to know that attitude is key to survival. Keep your chin up. Be stronger than the cancer. It’s just a “thing” and you are a human being. You are stronger than anything that may come your way. Dig deep down and you will find the strength inside of you.
Because this disease is so rare, I found myself feeling alone and isolated. I could relate to women with other female cancers, but only on a certain level. No one had what I had. There was so much uncertainty involved with this disease that I felt no one could understand. When I was first diagnosed I found a message board on a website called cancercompass.com. I went back to the message board a few months ago. The women and family members who had been posting were not around. I could read and see that some had not survived and maybe others I thought, had just moved on, not wanting to think about it anymore. I posted a message saying “I am here and cancer free”. A couple of months later I heard from another woman who was also cancer free; about 1 year since the end of her treatment. We started to email each other and we have become fast friends. Our lives are very similar, but very different at the same time. She did not have a hysterectomy either, but the biggest similarity is that our birthdays are on the same day. Her name is Melanie. I live in California and she in Michigan, but I can tell her things I have never said out loud. I am thankful for her and she is grateful for me.
We have brained stormed and have put up a website where people can go to connect with others that have the same cancer. There is no worse feeling than being alone in all of this. We all have our Friends and family, but unless you have someone who has “been there, done that”, you really do feel isolated. The web address is [http://www.cancercomrades.com]. Please check it out and pass it on. The search for a “Cancer Comrade” is always free.
I Hope this story has been helpful. Remember to ask questions and be strong. Stand up 2 Cancer! That’s right…I said it…there is a [http://www.standup2cancer./org] website. Check it out and be sure to watch the telethon airing September 5th, 2008 on NBC, ABC and CBS. It’s time to take a stand and we can beat this. Thank you for reading.