I am writing this article because I searched the web tirelessly for someone, somewhere who could relate to what I was going through in the months that I dealt with HPV and Stage 0 Cervical Cancer.
Although I had almost no threat to my life, the raw emotion, terror, and desperate impatience that I felt combined with the confusion and lack of real information made it one of the most trying times of my life. I learned a lot along the way and was amazed to find that almost no one I spoke with knew anything about HPV and its link to Cervical Cancer. Here is my true story and information that every woman really needs to know.
I'd like to preface this article by saying that I am a normally sane and rational human being. I'm educated, an experienced mother, and a professional. Please excuse my behavior in the following article.
I hadn't visited the gynecologist since my youngest child was born. He was six. I started having some pain during sex and some lower back pain about 2 years before. I thought of going to the gynecologist, but it was just so uncomfortable and seemed silly to me since I was happily married, had had a tubal ligation, and had been dealing with uncomfortable female issues since I was in my teens. What was the point? I knew that I was "supposed" to get a pap smear every year, but why? I had already been diagnosed with a "tilted uterus" and assumed that it why I was experiencing the pain. I had always experienced a little pain because of it. One night, I experienced such an excruciating pain after making love to my husband that I finally made an appointment.
Did you know? It is recommended that women have a pap smear once a year until they have had three normal pap smears and then once every three years. - Institute for Clinical System Improvement (1)
I went in alone and it was business as usual. There was no grandeur or impending doom. I had a pap smear and the doctor attributed my increased pain to my uterus further repositioning. He scheduled an ultrasound only because I had a history of ovarian cysts and he wanted to rule that out. I went home with instructions to call and set up my ultrasound. It appeared uneventful. I, consequently, did not schedule my ultrasound as I had enough history of ovarian cysts to know what the pain feels like and this was not it. I, also, attributed it to my further repositioning uterus and resigned myself to have to live with it.
When I saw on my caller ID that my gynecologists office was calling, I ignored the call. I was busy, after all, and they were likely just going to ask me why I hadn't come in for the ultrasound. I didn't need that kind of harassment, I had work to do. When I listened to the message that night before I went to bed, I realized that of all the phone calls I've ever missed, this one is the one I regret missing the most.
My doctor's voice stated, "I need to speak with you about the results of your testing. Please call me as soon as you get this message."
First, I don't know about any of you, but I've never had a doctor personally call me. His nurse or his secretary will call or I will call and talk to one of them. And so my first thought was, Doctor's don't pick up the phone unless it's bad news. I've never even known the results of my pap smears. No one called me to tell me when they were normal. No one even called me to tell me that there was any such thing as pap smear results. What did this mean? What makes a pap smear abnormal?
I'll admit it. The first thing I did was turn to my husband and ask him if he had an affair. He looked at me with pure shock, but I didn't care. I'd been with the same partner (my husband for heaven's sake) for years. The only thing I could think of was that I had an STD and he had given it to me. Since you all are not aware of the intricacies of my marriage, it is more likely that Obama would choose Jeb Bush as a running mate than that my husband would have an affair. I flew into hysterics and demanded to know what he had been doing behind my back. He, not having any idea what I had just listened to on the phone, must have been thinking that I'd lost my mind. I was merely thinking, "What's her name and why did she do this to me!" All the while, I didn't even know what having an abnormal pap smear meant!
Did you know? A pap smear indicates if there are any changes in the cells of your cervix. These changes can indicate cancerous or pre-cancerous cells or are infected with HPV. -HelpPreventCervicalCancer.com (3)
As any person of my generation would do, I immediately went on the Internet. My husband joked to me that I should know better because I always end up diagnosing myself with cancer by the time I get off of the Internet. When I noticed that every thing I looked up indicated that I had cancer, I laughed and decided he was right. I put down the computer.
A brilliant idea struck me and I went searching in the very bottom of my trash can for that little slip of paper that I vaguely remember the nurse telling me I could call if I wanted the results of my pap smear. I suddenly remembered that pap smears did have results. Apparently, you have to call them to find out what the result is. This made me twice as anxious. Now I started thinking that it was even more bizarre that my doctor called to personally to give me my results. I called the line. It said, in a very mechanical voice, "Your result is abnormal. Please contact your doctor." Wait! I'm supposed to contact him? He contacted me? What does that mean?
By the end of the very restless night, I was still convinced that some bimbo had stolen my husband and I was suffering the consequences. I was furious with his poor sleeping self and I was furious with my doctor for having the nerve to upset me like this. I was furious at the clock for not moving fast enough. I had suddenly developed about 10 different symptoms of every STD I had ever heard of and became terribly afraid to go to the bathroom. I'm still not sure why I was afraid to go. I guess I thought my urine had become toxic and the fumes would contaminate my ceramic tile. At any rate, I was not myself.
Did you know? Pap Smears do not test for common STDs, but does test for HPV. STD testing can be done in a number of ways including physical examination similar to a pelvic exam for women, urine, blood, and swab collection. -Plannedparenthood.org (2)
Did you know that most medical offices don't turn their answering services off until about 15 minutes after they are supposed to start answering the phone?
I finally got through and I breathlessly asked to speak to my doctor. Have you ever tried that? The receptionist very calmly explained to the obviously hysterical person on the other end of the phone (aka me) that I could not speak to my doctor as he was doing (something... who knows... I stopped listening at I couldn't talk to him). I'm sure that the receptionists at gynecologist's offices are quite used to dealing with hysterical women. It is sort of a hang out for all those with hormonal imbalances of every kind. It is kind of what they do. She was very patient as I (did I mention I was hysterical) explained that HE had called ME and I needed to TALK to him. I was transferred to his nurse.
The nurse seemed to understand as soon as I said my name. That did nothing for my panic. Why was this nurse in a metropolitan clinic that I had had exactly one visit to familiar with my name? I really needed to pee. I held it out of fear for my tile.
I waited very impatiently for her to find my chart so she could break the devastating news to me that my husband was leaving me for Pamela Anderson and I was going to have to go to the free clinic for Syphilis treatments. My chart, it turns out, was on the doctor's desk. Look. I wish it on no one to find out that their chart is on their doctor's desk.
And she said, "Your pap smear results were abnormal. We need you to come in for more testing." ARE YOU KIDDING ME? I kindly (I'm sure) explained that I already knew that and would like something more specific (so I could pee and kill my husband.) She stated that my pap smear had indicated that I am positive for HPV and I would require further testing. The first thing I thought of was those commercials you see on TV about how 12 year old girls should get the HPV vaccine. That is the extent of knowledge I had on HPV.
The nurse then asked "Are you familiar with HPV?" I relayed the extent of my knowledge. The nurse stated that I should schedule an appointment immediately for my ultrasound and for a consultation with the doctor. I did that. My appointment for my ultrasound was in one week and then my appointment with the doctor was in two.
Now I knew three things. I had an STD. I had HPV. I had an abnormal pap smear. That was it. I knew nothing else. I had an STD! Initially, I felt disgusted. I felt like I'd done something wrong. I felt like I was contaminated. I felt, well, dirty.
Did you know? 8 or 10 women will become infected with HPV in their lifetime. 12,000 people ages 15 to 24 are infected daily with HPV and you do not have to have sex to contract HPV. - HPV.com(4)
My husband be damned, I hit the Internet. I gained a lot of information. The problem with that information is that it did nothing but make me panic. So far I had very little information and very little to go on, but it appeared that HPV could lead to a number of very undesirable things including genital warts and cervical cancer. I am, by nature, not one to jump to the very worst conclusion (as you can probably tell from my story so far). My anxiety level rose to immeasurable proportions, but deep down I was certain that there was no way I had cancer. I didn't know, at this point, what type of HPV I had or what it meant that I had it. With more research, I discovered that my particular circumstance meant that I had the type of HPV that can lead to cervical cancer. My honest reaction to this was a bit embarrassing. I said "Thank God I'm not going to get genital warts." Now, looking back on my particular state of mind at the time, I guess this seemed appropriate enough. I was in a very different sort of place and still feeling the shame of having an STD. Genital warts, at that point, was much worse to me than cancer. My husband's face when I said this said it all.
Speaking of my husband, I feel it would be irresponsible not to address how he reacted to this information. His first reaction was, "Does that mean I have it?" For anyone who is reading this article and is still in round 1, let me save you some research. Men are infected with HPV as well. Generally, men do not have any health effect whatsoever. HPV can lead to anal or penile cancer in men and can also lead to genital warts. The type that leads to genital warts is different from the type that leads to cancer. It is rare for men to contract cancer from HPV and there is currently no test for men to detect HPV. - Centers for Disease Control (CDC) (5)
Did you know? There are about 30 types of HPV that can affect the genital area. Certain types of HPV can cause genital warts and certain types of HPV can lead to cervical cancer. HPV often has no symptoms at all. -HPV.com (4)
My second appointment was for an ultrasound. In my mind, I was being tested to ensure that the cancer that I must have had not spread to my ovaries and whatever else surrounds your cervix. Although this may have been the reason, I'm not sure that it wasn't just to check for ovarian cysts. At that point, my mind was a wanton wasteland of very bad thoughts that all lead to me being somewhere in the middle of that wasteland. It turned out, though, that I did have an ovarian cyst that had just burst and that I was otherwise quite fine. The ultrasound technician who gave me this information did little to help my questions regarding HPV or my abnormal pap.
My next appointment was with my doctor one week later. If I could put it into perspective for you, one week in this particular situation is little like the opposite of dog years. A year in human years may be seven in dog years, but week of this was like 7 human years. At some point during this week, I began to realize that I had symptoms such as abnormal discharge, lower back and pelvic pain, and pain with sex. This is why I went to the gyno in the first place. The most common symptoms of cervical cancer are these plus abnormal bleeding. Three out of four ain't bad, unless they are three of the four symptoms of cervical cancer. By the time I got to my doctor's office for this second appointment, I was expecting a real answer.
A real answer I did not get. My doctor, poor guy, sat me down to explain to me that an abnormal pap could be nothing and that we needed another test called a colposcopy to find out. My doctor, poor guy, did everything he could to make sure that I knew that the chances of me having cervical cancer were very slim and that I would likely be just fine. He did all this, poor guy, without ever having used the words "cervical cancer" until the very last sentence.Through the interview, I chanted "cancer, cancer, cancer" the entire time. I think he could see it in my face. He made reference to terms that I later had to look up like "cervical dyplasia." I didn't feel better. I had the Internet at home! I knew what was up! He finally asked me if I had any questions. I had only one. "You said that this could mean other things, but what else could it mean?" He, poor guy, looked at me dead in the eye and said that he couldn't tell me anything until we had the test. It was scheduled for a week later (7 human years.)
Did you know? "Cervical dysplasia is when the surface cells of the cervix show abnormalities when they are viewed under a microscope. Cervical dyplasia is not cancer, but is considered precancerous and can lead to cancer if not treated. -National Institute of Health (6)
This is when I started to tell people. To this point, my mother and husband knew what was occurring and no one else. Who do you run to tell that you have an STD? At this point, I told a couple of friends, my brother, and my in-laws. Each and every person I told got a little too freaked out by the "C" word and started to treat me just a little too carefully. It was bizarre. I didn't tell anyone at work what was happening and why I was mysteriously going to doctor's appointments once a week. I didn't tell anyone why it looked like I hadn't slept in a month and my hair was always sticking up over my puffy eyes. I didn't tell anyone why I had suddenly lost focus and couldn't seem to complete, well, anything. They asked. I didn't tell. And I decided it best not to tell my children until I knew something to tell them.
My husband started to treat me like I was very precious and began bringing me coffee in bed and ensuring that I didn't do anything at all. I felt terrified. Absolutely terrified. But, again, deep down I still felt it was all just a little silly. There was nothing really wrong with me. I couldn't possibly have cancer. Things like that just didn't happen to me. It was all a little much about nothing.
When I arrived for my colposcopy, I was fully armed with knowledge on what to expect. After all, I had researched the procedure like it was my doctoral thesis. Interestingly, none of that research really prepared me for the chair. For that, you need a girlfriend. Here I am. Your colposcopy will occur in this chair. At first, you will be asked to disrobe and then you will be asked to sit in a chair that feels a bit like you're grandma's formal dining chairs. Features include very high straight back, small seating area and uncomfortably cold vinyl. You will likely be given a towel or paper blanket that is much too small to actually cover you given that you have disrobed. You will then be told to put your legs on the outside of what you thought was the arms of the chair and had been resting your arms on. Turns out, those are the leg holders. Have you ever gone to the gym and tried out that thigh machine where you have to spread your legs and then push the weight in by bringing your knees together. It's like that, only adjusted for a yoga master. The doctor will arrive and if he is as funny as my doctor, he will make reference to the amusement park ride that you are sitting in. This will not make sense to you until he pushes the button. When he does, your uncomfortable, high-backed chair will then spring into action. The very small seat that you were sitting on will disappear and you will move into a position where you are exposed, fully, at eye level, for all of the room to see. You will be laying on your back now (by no action of your own) and you will feel a bit like that chair levitated you up to where you can only see people's faces, but they can see every thing you ever tried to hide under a bathing suit. Any remnant of the too small towel or paper blanket will now be impossible to use due to the gravity-defying nature of the chair. You will feel uncomfortable, to say the least.
Your doctor will then take out tools that you are not sure you want to see. He will then swing around an instrument that looks very much like your high school science lab microscope, only it will be suspended from the ceiling or possibly that fantastic chair. He will push that microscope toward your very most private area and then he will look through. You will feel uncomfortable, to say the least.
After this, I expect that things deviate a bit from situation to situation. For me, the doctor made strange noises and said things that I could not really hear or understand. He said something that sounded like an "Oh", only it was the bad kind of "Oh" that you don't want to hear while trapped atop a contraption such as this in a yoga master pose while disrobed and finding out whether you have cancer. He then told me where I could hear him that he saw two spots where he was going to take a "sample" for biopsy. I heard him say something about 3 o'clock and 6 o'clock and then I tuned out. I'll be honest, I had no reaction to anything that occurred at that time except being put in the position that I was in on the strange chair that I was on. I was jolted at one point by the feeling that someone had taken a pair of garden sheers and cut a piece off of an apple inside my pelvis. It felt something like when you have an uncomfortable moment with a tampon and it pokes you inside only the tampon has teeth and the tampon takes a little piece with it when you remove it. It wasn't particularly painful, just a bit of a shock. I tuned out again. My doctor finally came up for air. He had to say my name several times and ask me if I was OK several times before I answered. I heard him and thought I had answered, but apparently I was not actually speaking until the third time or so. I'm not sure where I was or what was happening, but surreal seems to describe it adequately enough.
He then told me that he had seen some "irregularities" but couldn't tell me anything until they came back from biopsy. The abrupt way in which he said it. The way he did not give me any real information, and the way he seemed so sympathetic without wanting to seem sympathetic pushed me back into the dream state. The chair then miraculously turned back into my grandmother's dining chair and I hazily remember getting dressed and leaving.
For those of you in Round 3, I did have spotty bleeding and some pin-point type pains after this procedure for about a week. This, according to my doctor, is normal. It felt something like someone was poking an ice pick around once in a while.
It didn't occur to me until long after I'd gotten home that the doctor had to take two "samples" and that he had used garden shears to take them. The word sample roughly means a portion of a whole. I didn't know and still don't know if that is normal or not. What I did know was that it seemed bad to me. The first sample he took was small enough that I did not feel it at all. The second sample was large. I didn't see it, but I knew it was large. You would have known too. It also didn't occur to me until long after I'd gotten home that the doctor didn't tell me anything. I interpreted every thing I could remember about his words and his face and came up with the conclusion that it was a bad sign. The biopsy results wouldn't be back for another week. I knew as much as I did after the first phone call. This was complete hell.
I want to point out that this is not the first time I had analyzed every word that the doctor, nurse, or anyone else who I thought knew more than me had said to me. I was like Sherlock Holmes combined with my toughest English Composition professor. I took every word and dissected it until it was dead, dead, dead. The word the had several different meanings by the time I was through with it.
At this point, I prepared myself for the worst. I told my closest friends and my supervisor. I told my supervisor that I did not know what the results were going to be, but it was possible that I would be missing a significant amount of work. It could also be possible that I'd miss none. I wouldn't know until next week. I didn't tell anyone else. I didn't post it on my facebook page or blog about it. I didn't want anyone to know. Somewhere deep inside, I still felt like this was all pretty silly. Of course there was nothing wrong with me.
I'd love to tell you in more detail what that week was like. Through this whole experience, this was the worst time of all of it. I knew nothing, inferred everything, and felt ridiculous for feeling so terrified. But terrified I was. I'd use a lot of synonyms for that word, but I can't bring myself to do it. That word became a manta in my head, "Terrified, terrified, terrified." I knew I wasn't going to die. I really did. But, all the same, I felt like I could and I started imagining what my children would do without me and what I would say to them. I started writing them letters in my head about the advice I would give them about life. I started feeling the low back pain more and more until I was convinced I was being eaten from the inside out. I imagined my insides as black, shriveled things. I was out of control inside my head. And as I was out of control, I can't remember a lot. What I can remember is impossibly brutal.
And finally my doctor called. He told me that I had cancer. He didn't say it as plainly as that. I can't tell you how he said it. All I heard was that I had cancer. It was like one of those moments you see on a movie where the world around you moves and you are suddenly very alone and everything around you is very far away and has stopped moving.
Then he said that it was Stage 0. What? Stage 0. Wait. What? My doctor, poor guy, then tried to explain to me that that meant that I had cancerous cells, but they hadn't spread and weren't full-blown cancer. So, I had cancer, but I didn't really. I had pre-cancer, but I had cancer. Cancer, Precancer, Carcinoma in Situ, gobble gunk, goulash, what did all of that mean? My doctor, poor thing, tried to explain. I heard, "You have the "c" word."
He then immediately started telling me that this was good news and that he was going to schedule an emergency hysterectomy and that he needed to know how much time I needed. I told him I could be there in half an hour.
Did you know? Stage 0 Cervical Cancer is actually carcinoma in situ which means that there are abnormal cancerous cells on the surface of the cervix that have not spread away and grown deeper into the tissues of the cervix. This type of cancer is not invasive. - Cancerhelp.org (5)
This may come as a surprise, but I was elated when I got off the phone. I felt so relieved to have actually gained some real information and actually knew what had happened and what was going to happen that I felt like jumping for joy. I suppose that isn't the normal reaction to finding out you have cancer. For me, though, the waiting and wondering had been so much hell that I was beyond being concerned for my body and was celebrating for my mind. I had cancer, sure, but it was Stage 0 and easily "cured." If I had to have cancer, I felt lucky to have a kind that actually has a "cure." I didn't worry at all about the surgery or the hysterectomy. That was nothing compared to what had played out in my head.
I still didn't tell anyone. At this point, I'd seen how people reacted to the "c" word and it warranted far too much explanation in order to make people understand Stage 0. I felt like telling people I had Stage 0 cancer was a bit like telling people that I had a Ferrari then telling them that it was a Matchbox car. I didn't want to overreaction of those who would overreact or the scrutiny of those who would scrutinize, or the criticism of those who would criticize. As a matter of fact, most of the people who read this article that know me probably will not know why I had surgery. They will probably all know I had surgery, but not know why. To this day, saying I had cancer seems to be a bit of an overreaction. Stage 0 is almost not worth the impact of the word. And I still feel a little bit guilty like I am being disrespectful to people who are in actual stages of Cervical Cancer.
A week later, I had a hysterectomy. As I had already had a tubal ligation, three children, and all kinds of problems with my hormonal system, this was a welcome removal. The problem child of my inner workings was finally shipped off to boarding school and I could be free of it forever.
The details of the hysterectomy and all that came with that is a story for another article. I'll tell you that my experience with it was not a bad one and I certainly don't miss my cervix or my uterus. I kept my ovaries, if you were wondering (I'm sure you were wondering.) I've remained problem free and actually feel better than I have since I was a teenager in regard to my female parts.
The only surprise I have left is to tell you that after my post-surgical follow-up with the doctor, he didn't want to see me again for a year. At first, I thought that was far too long. I wanted to be seen every month to make sure that I wasn't growing cancer in other parts of me. After all of that, I was a little gun shy. But I am healthy and happy and it is all a memory.
Did you know: HPV is the most common cause for cervical cancer. It can take 10 or more years for cervical dyplasia to turn into cervical cancer. Cryosurgery, cone biopsy, LEEP procedure or laser vaporization are the most common treatments for dyplasia. Hysterectomy is rarely used to treat dysplasia. Mild displasia may be treated with regular pap smears and monitoring. - National Institute of Health (4)
Hysterectomy can cure cervical cancer and prevent it from coming back in the early stages. - Mayo clinic. (6)
Cervical cancer is one of the only cancers where there is a known cause, a great detection tool, and can be wiped out before it ever really begins - My doctor.
The pearls of wisdom that I gained from this experience amount to these tips for anyone who is reading this article for any reason. I know that I write sometimes humorously about the experience, but I am serious about helping others not have to go through what I did and not have to go through more.
Written by Mark Riegel, MD
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