I like to share with everyone other people's stories, if they let me. Today is Lindsey's Birthday and she has kindly allowed me to share her story with you. Please read what she has written, comment and wish her a happy birthday :)
Another Chapter in my Book: A Survivor's Story By Lindsey aka Lynz
I was too young, according to doctors, to have anything wrong with me. Every PAP I've ever had has been normal, although my cervix always looked "funny."
Unfortunately, none of this is funny.
At 19, I started noticing abnormal vaginal discharge, I never had discharge before. I had tons of pelvic pain and abnormal periods. As the year progressed, the discharge became more discolored, sex began causing me pain and bleeding.
In 2004, I moved to Davis, CA to attend the University of California, Davis (UCD). I needed my birth control prescription renewed so I went to the UCD Health Center. When I was getting my PAP my cervix started bleeding so heavily that the Nurse Practitioner couldn't get an accurate smear. She told me my cervix looked "funny." I mentioned to her that for the past 3 years every time my GP gave me a PAP she said I had cervicitis, but that my PAPs always came back normal. She said it was all ok and she'd send in what she got from the smear and let me know. She informed me later that my PAP was normal but my cervix looked funny, it was nothing to worry about and that I needed to take some antibiotics and reschedule with her for a follow-up. Being a full-time pre-med student, I thought she was full of shit and unprofessional. This was in late September of 2004.
In Feb. of 2005, the same NP at UCD Health started calling and emailing me, so I made an appointment to go see her. Then and only then, did she inform me that in September I had a tumor on my cervix and now it had grown to about 3 times the size of what it was 5 months before. I was completely outraged, how does a tumor constitute "funny" and how did she neglect to tell me there was a tumor there to begin with? I immediately informed her I wanted to see a specialist.
Within 2 weeks, I was at the Sutter Women's Health Center in Davis, CA. The GYN I saw was amazing. She took one look at my cervix, informed me that it was entirely abnormal and that she wanted to remove as much of the tumor that she could get at right that instant. I, of course agreed. I thought I had a STD. I prayed for a STD.
30 minutes of excruciating pain followed, while the GYN did what is referred to as a pinch biopsy. This is a procedure in which forceps are used to pinch and rip off tissue. I bled so much that she had to stop half way through to slow the bleeding so she could make sure she got it all. No pain pills, no topical anesthesia, nothing. I left in complete shock, sat in my car and freaked out. I was a 20 year-old college student, all alone, in a new city, praying for a STD.
Days later on March 31st, 2005, my GYN called me, as I sat waiting for my class on the first day of Spring Quarter, she told me I had cancer. Not only did I have cancer, but the tumor was a larger sized tumor, and a very rare form of cervical cancer.
I had adenocarcinoma of the cervix, only about 15% of all women who get cervical cancer get this form of cancer. It is very aggressive and I needed to see a specialist right away!
The next week I was sitting in front of one of the best GYN Oncologists in CA. Dr. Dalrymple. This man is amazing, I owe my life to him. He was the most considerate, caring doctor I ever met.
By May, 2005 I was scheduled for a cone biopsy. It went well, or so we thought. The results came back with evidence that the cancer may have spread to my lymph nodes. Due to the rare form of cancer, my age, and the size of my tumor (over 2 cm), everyone was stumped. No one wanted to believe I had cancer, I was too young!
My case went before the Tumor Board, they were stumped, so it went out to MD Anderson in Texas, still stumped, Stanford, and countless other places, everyone was still stumped!
My GYN-ONC wanted to make sure he was making the best choices for me and my fertility. After about 12 second opinions, and extremely close monitoring, I was scheduled for a radical trachelectomy and laparoscopic lymphadenectomy. This was to provide me with a chance of having kids, but I was crushed because it meant I couldn't carry twins to term.
I had to drop out of school, move home with my dad, and I sunk into incredibly deep depression. I felt so alone, and scared. I could feel myself dying. I suffered from muscle atrophy and lost 28 pounds in about 3 weeks.
My surgery was November of 2005. A radical tracelectomy is a fairly new and modern procedure. At the time about 300 women worldwide had undergone the surgery. What they do is remove the cervix, surrounding tissues, lymph nodes, and add a cervical cerclage (it's a permanent stitch to close up where the cervix once was).
My surgery took 6 hours, it was at UCDMC in Sacramento, CA (the worst hospital in Sacramento). Needless to say, after the 6 hours; I woke up in the worst pain I had felt in my life, I couldn't talk, the nurses were mean and rude to me, I was in recovery for 8 hours, and I stopped breathing, woke up and was entirely alone because my nurse neglected me. Needless to say I checked myself out of the hospital 2 days early.
It took over 6 hours to make a 3 hour drive home, my dad was terrified. I was delirious with pain. I looked like someone had hit me with a 2x4; I was bruised from hip to hip, about 4 inches wide. I couldn't see my feet.
My doctor told me that the surgery in Nov. went well, that I was done. I went home to recover, and found my current boyfriend, D.
By Jan 2006, we knew he was wrong. I sat in Dr. Dalrymple's office, holding my new boyfriend's hand, when he told me the worst, I needed to have a hysterectomy and another lymphadenectomy. I was stoic. The calm before the storm. Anger rising, heart breaking, fears flooding me. I was so consumed; I looked so pulled together and strong, but I was dying all over again.
They gave me 6 months to heal from the Nov surgery. I switched Oncologists so that I could have the surgery at a better hospital in Fresno, CA where I was living with my dad. But I kept Dr. Dalrymple because I needed him, he told me everything straight, and even gave me the information most patients never get, because I was going to be a doctor too, and he had faith in me.
My new Oncologist was a complete jerk. He was a great surgeon though! He didn't give me any information about menopause, hysterectomy, nothing! I told him to take my ovaries, since I was always having problems with them and didn't want another major surgery in 6 months to go in for them. He said I was stupid. I persisted! The biopsy on my ovaries informed me I wasn't stupid, they were full of cysts!!!
Everyone says, "you're so young, what about kids, what about menopause?" Well, in Nov I lost my chance for twins, with the surgery, I had a very high risk of miscarriage, and all I ever wanted was twins. So, my heart broke then. When it was time for my hysterectomy, I was so over having cancer that I just wanted to get it over with. My chance for my own twins was gone, freezing my eggs just wasn't an option, and really? would I want to have my genes passed on? NO! These genes are the reason for my cancer! I wouldn't want to have a daughter with the same fate!
Menopause...Well, because I am so young, I have no choice but to be on Hormone Replacement Therapy, so I don't have hot flashes. I do have vaginal problems. I am dry, which frustrates me to no end! And lube is so expensive, and it takes away from spontaneity. Luckily D was here during the worst part of all this, he knows and he is pretty understanding.
So now, I'm 24 as of Sept 3rd, 2008. I am menopausal, cancer free (thus far), in a long-term committed relationship with the love of my life, a UCD graduate, and a lab manager at UCD working on research pertaining to couples and their emotions over time. I am happy and alive.