Small study showed high accuracy but hurdles remain, two experts said
by Cancersurvivor052007 on Fri Jul 13, 2007 12:00 AM
This is the letter that I sent to my family the day my oncologist released me from his care. It tells my cancer story, emotions, of hope and strength, and I just thought I would share it with others.
Dear Mom, Dad, Russell & Nichole, and Ronnie,
I figure that I would write a letter about what I have had to go through with my having cancer, and let you all in on some things that I hadn’t told anybody except for Michael. I was being my usual self, taking care of other people’s feeling instead of focusing on me. Do you know that upon having the doctor tell me I had cancer, the only reason I cried for 15 minutes was because I was thinking, “How the hell am I going to tell this one to Mom, Dad, Russell, and Ronnie?” I didn’t shed one tear for myself. In the last four years of being under my doctor’s care for cancer, that is the only time I cried. From the get-go, I was ready and determined to kick cancer’s ass. And I have succeeded!
Maybe one day I will realize that nothing with me is simple. I always do things the hard way and I am stubborn to the bone. I went to the gyno for a simple check up and came out with cancer. Not just any cancer either, it had to be the rare of the rare. And one of the most aggressive. And in the process, I found out that mother nature forgot to fill my order for two kidneys and only gave me one. Well, what more could I expect - I had just turned 30 and that meant my warranty had run out. Go figure! Sometimes it pays to but that extended warranty if they offer it.......
My doctor visit was going just fine until he told me I had a polyp on my cervix. He told me he was going to twist it off and have it tested, saying that most of the time polyps are benign, but it’s always best to check. Well...... When I came home from work a few nights later, I had a message from the doctor telling me that he needed to talk to me. Right then, I knew that couldn’t be good. I called the doctor’s office the next morning and his words were, “I really hate to tell you this over the phone, but...... the polyp we removed had cancer cells. I’m sorry........ You have cancer.” There are three words that you don’t want to hear in a row. You... Have... Cancer. My response was simple, “Ooookkkkaaayyyy..... what do we do now?” I talked to him for a little while and he said that the polyp was really full of cancer cells. His words were somewhere along the lines of “We couldn’t believe how full this polyp was of cancer cells. We are really amazed.” He also gave my cancer a name - adenocarcinoma.
From there, appointments were made, CT scans were run, and several other tests that I can’t think of! I had so much blood drawn that I thought I was going to have to borrow some from the next person in the blood drawing room! Before my one CT scan, they give you this drink mixture to drink. It has something to do with the dye that they inject you with for the CT scan. I don’t think I will ever forget that taste of that stuff - kind of like chalk water. They try to flavor it with some vanilla, but it doesn’t do much to hide the taste, believe me! When they inject you with the dye, the nurse warns you that it makes you feel like you are peeing on the table you are laying on. Know what? It feels like you are peeing on the table - definitely a very weird feeling! This dye interacts with the chalk cocktail you just drank and makes any cancer that is in your body glow.
Just as a side note, when I called to find out the results of my CT scan, whether the cancer was localized or spread out, I found out that I had congenital absent left kidney. Mother Nature’s crew must have stopped for their union break and when they got back from it, they weren’t paying attention and only put one kidney in me. Goes to show that you just can’t find good work these days.
An appointment was made for me to go the Camelot Woman’s Center and meet my oncologist, Dr David Cohn. He’s a very wonderful man! Not only is he my hero for saving my life, but he is doing a lot of work with gynecological cancers and is currently doing a lot of research on finding a vaccine for ovarian cancer. Maybe one day you will hear his name on the evening news! After an examination with him, we consulted in his office about my options. He explained that my cancer was a very rare type of cervical cancer not associated with the HPV virus as most of the cervical cancers are. Ninty-percent of cervical cancers are linked back to the HPV virus which most people have and it can possibly turn into cancer. Only seven to ten percent of woman get the adenocarcinoma. He also explained that the cancer was very aggressive. He was very thorough in his explanations about everything and answered all questions I had. I could’ve went with the one procedure that attempts to kill the cancer but it allows you to keep all your reproductive organs in case you want to have children one day. He also said I could have a radical hysterectomy which was remove my cervix, uterus, an inch or two around the uterus (I have no idea how to spell it, but it is something like perametrium), one-third of the vaginal canal, and some lymph nodes. He would leave the ovaries so I wouldn’t be thrown immediately into menopause. That was probably a good thing for Michael. He said it was totally up to me, but with the type of cancer I had, he suggested the radical hysterectomy. The adenocarcinoma is a type of cancer that doesn’t grow through tissue, it grow alongside it and grows quickly. He said that with the position that the cancer tumor was in, it would climb up the cervix and into the uterus, then branch out like a tree. I chose the radical hysterectomy. Of course, I had to ask the common question of “how long” I would most likely have if the cancer had gone undetected and untreated. About three years. That is only 36-months. I have a car loan that’s longer than that! I was determined to make it longer than three years, so I signed paper after paper stating that I was aware of the option I had just chosen, that I understood that I would never be able to have kids. I had to sign a paper stating that I understood the paper I had just signed about not being able to have kids. Then I had to sign a paper stating that I understood about understanding that I wouldn’t be able to have kids. By the time I was done signing papers, I was starting to show signs of carpal tunnel!
My surgery was scheduled for April 16, 2003 at the Arthur James Cancer Hospital in the Ohio State University Medical Center. Aside from the reason I was there, the facility is absolutely wonderful and the staff is fabulous. There are a lot of interns and students that come in with the doctor so they can learn. We arrived at the hospital at some ungodly hour in the morning, like 4:30 or 5:00. Ugh! I went through the registration, signed some more papers, and got prepped for surgery. I had IV’s and tubes all over! I remember them taking me into the operating room and getting ready to administer the anesthetic and thinking, “I am here for surgery aren’t I and not lethal injection?!?!?” You lay on this little table and they place your arms out and it reminded me of shows they have about the death penalty on A&E. The nurse told me, “I am going to put the tube in your IV for the anesthetic, then count down from ten.” She put that tube in, the juice started to flow and I didn’t hear her pronounce the ‘n’ in ten. I was out. Some hours later I woke up and boy what a groggy feeling! They transported me to my room, hooked me up to some more tubes, and put these neat things on my legs for circulation. Then they hooked up with what became my favorite thing - the magic button. Every ten minutes, I could press it and get a buzz. The magic pain medicine. I could get the magic medicine every ten minutes, not any sooner since it was set up for ten minutes. If I pushed it and it didn’t click, I knew it hadn’t been ten minutes since the last magic button push. I think I growled at the nurse when they took it away on the day they released me. No, not my magic button! Bring it back! Ahhhhh! Every fifteen minutes after they brought me to my room after surgery, they would come in and check my vitals. In the morning, the doctor woke me up and there were 8 students staring at me. They ask to look at your incision in front of the students to check it. I had tubes sticking out of everywhere. I would raise my head up a little, see a tube, and wonder where the hell that tube was coming out of or going into. The one night I couldn’t get to sleep, so the nurse came in and gave me some benadryl through my IV. Wow, that worked fast. As she put it into the IV, I could feel it going through my veins and all over my body. Mom stayed in the room with me and a few moments after I got the benadryl, I started to get loopy. I said, “Mom, I can’t lift up my head.” Then I told her, “I can’t feel my arms” which was followed by, “Mom.... hey mom! I don’t have any arms!” I don’t remember anything after that until the next morning when the doctor and the students came into my room to check my incision. As every morning, the doctor ask if I minded if she pulled the covers back to check the incision, but unlike the other mornings, my answer this time was somewhat colorful (thank goodness I can blame the benadryl for this one!). I looked at them, smiled and giggled, telling them, “Sure.... most everyone in this hospital has seen my koochie so you might as well too!” I must have fell back asleep since that is the last thing I remember saying until the breakfast tray came in.
The worst night of my stay at the James was the night there was a lady who was in a lot of pain from her cancer. She wailed and moaned from the pain continually. I could hear the nurses scrambling and talking about how much pain medicine they had given her already and they were trying to find a way to make her comfortable. Those moans of pure pain coming from that lady that night is something that I know I will never forget, it’s a noise that I can hear plain as day. I felt such sympathy for her. I hope that I never hear that kind of pain in someone’s voice again as long as I live.
Eventually, they made me get up out of bed, which was a feat in itself seeing that my stomach muscles had been cut and insides had been taken out. And eventually, they decided to release me. Then they took away my magic button. I was like, come on, let me have just one more magic button push! Please!
A week after going home from the James, I had a follow-up appointment with my doctor to go over my surgery, to go over the findings, the cancer removal, the lymph node removal, etc. They had gotten the cancer, and the nineteen lymph nodes they had removed were negative for cancer. Everything looked good. There would be no chemotherapy or radiation for me! They was just one little thing that he wanted to tell me. The adenocarcinoma which was the rare cancer to get has two types, and I got the rare type of the rare cancer. I had the clear cell type. Three-percent of woman who get adenocarcinoma get the clear cell. He said that the three years he had told me about at my appointment was based on me having the “common” type or the rare adenocarcinoma. He told me that if I hadn’t found out about the cancer, the cancer would have taken over my body and my life within 9-12 months. He said it was a good thing that the cancer was caught when it was because it was growing fast. The tumor that he had seen on the first visit on March 27 had grown considerably by the date of my surgery. I am lucky!
For the first two years, I was going up to Columbus for follow-up visits every three months. Everything always looked good, so at my two year mark, I graduated to follow-up visits every six months. During my last appointment, my doctor told me that if everything looked good on my next appointment May 17, he would release me a year early. I have never had any type of recurrence or abnormal check up since my surgery so he feels it would be all right to release me. Yippie!
Every day I think of my cancer and the changes it has brought about in my life. i have a seven inch scar that smiles at me every day. I just call it my life scar. I have some other problems that I have to deal with for the rest of my life due to my surgery. Because of organs being removed during surgery, it causes the bladder to lay low, which increases risk of urinary tract infections. Those are definitely no fun. After a radical hysterectomy, the muscles of your bladder are affected by all the changes, so UTI’s are common. They were getting a little too common for awhile with the infection causing my bladder to become badly infected before any UTI symptoms occurred. With only one kidney, the doctors said they couldn’t risk the kidney getting infected so I am on a prescription medicine that I take for that every 3 days for the rest of my life. There are times that I have no hormones and people tend to run when they see me coming. I think it is the hair sticking up and my screaming that clues them in.
In these last four years, I have been concerned for other people’s feelings about how they are handling ‘my having cancer’ that I never took a single moment to grieve for myself about ‘my having cancer’. I kept some details back, such as the three years life expectancy and the 9-12 months life expectancy, because I didn’t want anyone to worry or be upset. It might seem kind of strange that some things haven’t really hit me until now. You can hear your doctor tell you some things, but sometimes they just don’t sink in at that moment. So I wasn’t ever keeping things from people to be secretive, but out of concern for how my family would feel.
On June 9, I will walk in the opening lap of the Relay for Life alongside other survivor’s. For the opening of the Relay for Life, the survivor’s walk to first lap. There is a gathering of survivor’s in the Survivor’s Tent before the first lap where they all get together, meet other survivors, talk, and share their stories. This year, I will among them!
On June 10, it is National Cancer Survivor Day and the James Cancer Hospital is holding an event at the Columbus Zoo from 6-9. It is free of charge for survivors and a few people. I am registered and excited to go! There is a dinner, different activities, a meet-and-greet with the innkeepers and some of the animals, and a special gift for the survivor.
I have become active in some online support groups for other woman facing cervical cancer and some groups dealing with all types of cancer. We try to spread cancer awareness and to stress to women to be aware of changes in their bodies. I have met some great people. Whether we are fighting or surviving cancer, we are all in this together.
I just wanted to let my family most of what I went through and some of the things I will go through for the duration of life. The surgery has left me with a few problems, but I can’t complain. I would rather plant flowers rather than push them up.
Thank you for the support during my cancer journey and know I appreciate things that were done. I understand and have no hard feelings towards some family and friends who shied away from me, not knowing what to say to me, or becoming uneasy around the “cancer” subject. I never mean to make anyone feel uncomfortable but I will warn you that I will throw the word ‘cancer’ around like some people throw the ‘f’ word around. If it makes you uneasy, sorry. It’s just something you have to get over.
I love you all very much and am glad that I am able to spend many more years with you all. I am sending you each a copy of this letter although I addressed it to you all as a whole.
by Raes_Daughter on Fri Jul 13, 2007 12:00 AM
Thanks Shannon for letting me read your letter. It is good to hear about the positive results, but that doesn't mean you don't go throught a lot to get there. Cancer touched my life through my Mother 2 years ago and it is a constant battle. I have admired her so much and have learned so much through all of this. I love your sense of humor!! We also have been going to the James and the doctors and nurses there are great....can't say enough good about them. Well what is it that Joe Dirt says "keep on keeping on". Good Luck and sorry about the absent kidney, someone had better have lost their job after that screw up.
by Ltk7321 on Mon Jul 30, 2007 12:00 AM
Thank you for sharing this letter on the website, it definetly made me cry. It made me cry for two reasons... one, because it is so unfortunate and unfair what you had to go through, and two, becasue it mirrors my life recently and it brought up so many emotions. I was diagnosed with stage 1b1 adenocarcinoma in March and had a trachelectomy in May. Pretty much everything you described from emotions, to what happened in the hospital, to how friends and family treat you is what I have and continue to experience.
I wanted to ask you a couple of question if you don't mind. What stage was your cancer when it was diagnosed. I also thought I had a polyp anbd turns out it was cancer. Also, I thought that HPV did cause the adencarcinoma as well, but from what you are saying it doesn't. Does that also include the high risk HPV types (18 and 16 I think)? It is scary to hear that 3 years is all it would take, and even scarier to hear 9-12 months. Do you know how big your tumor was when it was removed? I'm coming up to my first follow up appt and I am scared to death. Scared that I didn't make the right decision treatment wise (have the hysterectomy as opposed to the trach), scared that they will find another, scared that becasue of the nature of the cancer that there is some in my uterus. Even though they scrapped the uterus and had clean margins of all the tissue that was removed and all lymp nodes clean, we both know that you could still have a clean margin and a tumor "pop" up somewhere up in the uterus as they think this cancer can have multiple sites.
Any info from your experience you can share is greatly appreciated. You're right, you have cancer are the scariest 3 words you hear back to back, and I am trying to stay positive, but some days I just can't handle it and I struggle to reconcile what I went through and what I will continue to go through.
Congrats on being released and remaining cancer free! You are an inspiration at a time when one was sorely needed!
by kellkyle on Sun Oct 07, 2007 12:00 AM
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.