My Story | Karen, Alberta, Canada
I can see now, in retrospect, that the result of my first pap smear was an ominous indicator of my future gynecological health. That was in 1979, just after I'd become sexually active at age nineteen, and it showed "cervical erosion" and inflammation. The doctor shrugged it off, and told me to have regular pap smears.
After the birth of my first child in 1986, my paps started showing moderate dysplasia (abnormal cell changes), which progressed quickly to severe dysplasia. I had laser surgery in April 1988. This is a procedure that uses a laser beam to burn and destroy the abnormal surface tissue of the cervix, using a local anesthetic. It wasn't particularly uncomfortable, but I was quite anxious through the procedure. I remember dissolving in tears in the change room afterwards, and being thankful to have it behind me. The doctor told me that it's completely curative over 90% of the time.
Our daughter was two; we'd been putting off another pregnancy until after my recovery from the laser treatment. My husband wasn't convinced it was time yet for another baby, but a little voice was telling me to get on with it. A few months later, I was pregnant again, and our second daughter was born in March 1989. At my six week postpartum check up, my pap came back abnormal again, and by 1990, it was showing "CIN lll/carcinoma-in-situ". (CIN is "Cervical Intraepithelial Neoplasia", the new term for dysplasia.) The doctors recommended a cone biopsy: under general anesthetic, a cone-shaped piece of my cervix would be surgically removed to be examined by a pathologist. It was expected to be therapeutic (ie., a cure).
I had the cone biopsy in April 1990. It was my first experience with general anesthetic, and I was violently ill when I woke up, vomiting repeatedly over the next eight or ten hours. I don't remember if I was given anything for the nausea - as I was still nursing my baby, they had to be careful that medications not be harmful for her. I was finally released from the "Day" Surgery unit, at about 10 pm that night! I had also lost a fair amount of blood; the doctor said my cervix was quite "vascular". I was advised to take iron supplements to help my iron levels come back to normal.
About ten days after my cone biopsy, when the spotting had just about ended, I started bleeding. I wound up taking a trip to ER for "packing" - that is, my vagina was filled with gauze - and I was sent home. The next morning, when I was examined again in ER, they discovered that the problem was a couple of small "bleeders" (blood vessels), which were chemically cauterized.
Well, so much for "therapeutic" - the results of the cone biopsy were not as good as had been expected. I had "micro-invasive" cervical cancer - the cancer had already gone through the epithelial (surface) layer of my cervix, had penetrated the "basement membrane" and was beginning to grow into the deeper tissues of the cervix. The cancer also extended up into the cervical canal. And the margins of the biopsy were not clean - not enough had been removed to be completely sure all the cancer was gone. For these reasons, a hysterectomy was recommended.
I was a little hesitant to undergo a major surgery without a second opinion. My doctor (an ob-gyn) was confident that my cancer had been caught at a very early stage, and assured me I had time to see another doctor. I was referred to a gynecological oncologist and saw her in July. However, my pathology slides had not arrived, so there was a further delay until they were reviewed again by another pathologist. Eventually though, the doctors were all in agreement, and my hysterectomy was scheduled for November.
It now seems strange to me that I could have gone all those months - April through November, knowing that I had cancer, and yet, not being worried about waiting. There was always something to wait for - the next test, results from tests, the next appointment, the slides to be reviewed again etc. - and so, at the time, I guess there was a sense of progress, step by step. Through all of it though, the reality of the word "cancer" really hadn't hit me. It was so microscopic, it had been caught so early, and the prognosis was excellent. I really didn't take it seriously. I still thought of medicine as a science, rather than one part science, one part art.... and a good measure of luck thrown in. Knowing what I know now about cancer, I think I should have pushed for things to move faster - but who knows? I was also recovering from an undiagnosed postpartum depression, dealing with two small children, and in a bit of a rough spot in our marriage. My plate was rather full....
One thing that didn't concern me about the hysterectomy was losing my fertility. Two children felt just right for us, and my husband had already had a vasectomy a few months before my cone biopsy. My biggest concern was the anesthetic. I just could not imagine waking up from abdominal surgery and puking like I had after the cone biopsy, only with an abdominal incision this time. However, the anesthesiologist decided to use a different drug to put me out, and to give me anti-nausea medication in the I.V. I had no major problem with it in the end.
I also talked to my doctors about the risk of an early menopause, but they assured me that was unlikely to happen.
My hysterectomy was supposed to be here, at our local hospital, but the doctor couldn't make it because of a snowstorm closing the highway, so I had to drive four hours to the city the next week. on December 7, 1990, I had a total abdominal hysterectomy (TAH) with a horizontal incision, keeping my ovaries. I was thirty years old.
I lost a lot of blood during the surgery and had to have a couple of transfusions. I guess it was more than just my cervix that was vascular! Despite my youth, I didn't bounce back as quickly as I should have. I expected to be three to four days in the hospital, but stayed a week, and only just felt ready to go home when I did. I think they were hesitant to release me until they were sure I was up to the drive home.
I should mention that I was breast-fed my daughter through my hospital stay, and during my recovery period - she was nineteen months old. I have always been an advocate of child-led weaning, and she just wasn't ready yet. Knowing I wouldn't be having another baby, it was important to me not to rush into weaning her, to enjoy that special bond until we were both ready to give it up. In the hospital, most of the nurses were supportive; one or two were not, but I just blew off their comments. I've always been stubborn. Or is that "determined"?
About two weeks after my hysterectomy, right over Christmas, I developed a hematoma and infection at the incision site. I think that was the most painful part of the whole experience. I was given antibiotics, and after that, I recovered quickly - good thing, too, as "taking it easy", and the six week prohibition from lifting was impossible with a baby in the house, family thousands of miles away (my mom had already come and helped out for five weeks, leaving my dad alone over Christmas), a husband who was away at work for 24 to 36 hours at a time, and a bed and breakfast business to run.
I believe it was after the hysterectomy that I was told that I carried the Human Papilloma Virus (HPV), and that a few of the many strains are associated with a higher risk of cervical cancer, including the one I had. HPV - the wart virus? I'd never had warts!!
But again, the significance of this was downplayed. I was told that the cancer was very unlikely to come back, and that the first two years held the greatest likelihood for that. So, I continued with frequent vaginal pap smears, and life went on. Although I no longer menstruated, I was quite sure that my ovaries were still functioning - I still felt that I was having cycles, just no periods.
Then, on Dec. 7, 1994, on the fourth anniversary of my hysterectomy, my local doctor's office called with the results of my pap the previous week - it indicated cancer in my vagina, and "luckily" for me, a specialist was doing a colposcopy clinic at our local hospital that day, and could squeeze me in. I went in for a colposcopy and some biopsies, and discovered that vaginal biopsies are much more unpleasant than cervical ones. They were done by the ancient, long past "should-have-retired" doctor who had done my first colposcopy - the one with no "bedside manner". He scared me to death with the spectre of a vaginectomy (removal of the vagina) and/or radiation treatments as treatment for my condition.
I still don't know how I got through that day - my husband was at work, so I was alone with the kids. I would break down completely in the bathroom for a few minutes, and then put my brave "mommy" face back on and go out and do what I had to do... until the next wave of panic hit. My kids were too young to notice my red eyes and frequent absences.
The biopsy results were inconclusive, so I needed to have more done. That was scheduled for January, at the cancer centre in the city, to be done under general anesthetic. It was a surreal Christmas season for me that year - gaiety with family and friends, cancer looming just underneath. Not knowing how serious the cancer might be, I would lie in bed at night, especially nights my hubby was away at work, and my mind would create all sorts of horrible scenarios. The worst were to do with my daughters growing up motherless.
The second set of biopsies were also inconclusive, and the official diagnosis was "VAIN lll/can not rule out invasive carcinoma". (VA - vaginal IN - Intraepithelial Neoplasia) There were a number of small lesions scattered about the upper part of my vagina, which meant that surgical excisions weren't an option, and because the depth of invasion was not known, laser treatment was also not an option. Radiation was thought to be as successful a treatment as more radical surgery, while still preserving sexual function.
So off we went again to the city to see a radiation oncologist. He explained everything to us in detail and answered all our questions.
In mid-February, I had HDR (high dose rate) brachytherapy treatments. These are internal radiation treatments, done on an outpatient basis, using a "tampon" type of insertion in the vagina. I had five treatments, all in one week. The first appointment was the longest, and also the most difficult, as I had no idea what to expect. One of the radiation technicians, Rita, was very warm and caring, and answered all my questions. I think it was her, more than anything else, that made everything "alright" through all of this.
Side-effects were mild: some bladder irritation, and mild diarrhea and again, I was thankful that I had a type of cancer that could be treated so "easily".
Then came menopause. When I had asked, it had been mentioned as a possible side-effect, but "highly unlikely". At 35, I knew very little about menopause, and as the symptoms developed in intensity over the next few months, I thought at first that it was "all in my head". My main problem was regulating my body temperature - I was having fairly severe hot flashes regularly through the day and night - but I was also just unbearably hot almost all the time. Summers are generally cool here where I live in the Rockies - but going outside, even in 70 degree temperatures was quite uncomfortable. It was like my thermostat was set on "high" all the time. My husband tells me I was also very moody, but I tend that way anyway, so I didn't really notice it. Inability to concentrate and "menopausal moments" were also a problem for me for quite some time.
Aside from treating those symptoms, my doctor and I decided that estrogen replacement was a good idea for me because both osteoporosis and heart disease run in my family. I went on Premarin first, and a year or two ago, after trying other oral estrogens and then a couple of brands of patches, I switched to "Vivelle" brand patches, which I find much easier to use, as they only need to be changed twice a week, and they stick really well. There is some controversy about how Premarin is produced (it is extracted from the urine of pregnant horses), and if a plant-based estrogen can offer me the same benefits, then I would much rather use that.
Loss of sexual function, due to vaginal scarring had also been mentioned as a possible side-effect - and after my last radiation treatment, I was given a vaginal dilator, a brochure, and an explanation about the importance of either using the dilator or having sexual intercourse regularly. If the tissues in the vagina are not stretched regularly, not only is intercourse difficult, but pelvic exams, so necessary for follow-up, are also difficult.
After a couple of weeks, I tried the dilator, and was encouraged that it caused no discomfort. The first few very careful attempts at intercourse were also successful. But once the relief at everything still "working" ended, I realized I had NO sex drive, and intercourse was uncomfortable most of the time, and downright painful sometimes.
It is only now, over the past year, (and five years since treatment) that sex is getting to be "fun" again. There are still positions that are uncomfortable, but most of the time there is no pain or discomfort anymore, and I even have *some* libido (sporadically - but that's better than none at all!)
What I found hardest though, was the fear of recurrence. Having not taken the "C" word seriously the first time, it seemed to hit me all the harder the second, and the realization that I seem to be especially susceptible - my HPV status, and maybe genetics (my maternal grandmother also had cervical cancer) - has made it hard to put the whole thing behind me.
Also distressing to me was that I consistently seemed to be in the minority side of any statistics - the laser treatment was supposed to be a cure. But I was among the 10% in whom it wasn't. In most women, CIN never progresses to cancer. Mind did, quite rapidly. For most women, the cone biopsy would have been enough treatment. Not for me. The risk of recurrence was very slight, but wouldn't you know it....
Those who haven't been through something similar just don't understand that cancer is an experience not easily "put behind you". After a short while, my family and friends seemed to have forgotten what I had been through, and moved on. It wasn't as easy for me though. I spoke a couple of times to a local woman who'd had a different kind of recurrent cancer, and her positive attitude and assurance that the fear would eventually subside were helpful. I'm sure many people had heard through the grapevine about my problems (small town life!), but because of it being gynecological cancer, most people wouldn't stop you on the street and ask how you were doing.
I got internet access and found a gynecological cancer email support group in 1997. It was amazing to me that there were other women out there who had been through similar things, and who shared similar fears. Being in contact with others, and learning more about gyn cancers and their treatments has really helped me in dealing with those fears. After making it past four years (i.e. not repeating the past pattern), I started to feel optimistic that I would put it behind me, and now, over the past few months, coming up to five years, I think I can say that I think I *am* finally starting to put it behind me...
In April 2000, I went back to the city for a colposcopy and check up and got the "all clear". Because it's been five years, I no longer have to go see the specialist at the cancer centre, but she recommended that I should continue having paps "at least annually". As if! For my own peace of mind, I think I'll stick with the six month schedule. It's the old "needle in the haystack" thing - the more often I have pap smears, the better the odds that any future problems will show up early.
Hmmm, is that last comment just caution, or a vestige of that fear?