Experiences with Cervical Cancer

Margaret Tobin
Copyright © 1997 Margaret Tobin
Last Modified: November 1, 2001

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Introduction

This essay is an attempt to share my recent experiences with a recent diagnosis of cervical cancer. Just as reading the essays of other cancer patients has helped me put the disease in a better perspective, I hope that other people reading these words will be helped somehow in coping with their particular circumstances. Once the initial shock of my diagnosis had passed, I found that I could still feel positive about life, and that I could enjoy life just as much, if not more so, than before. These are the feelings and attitudes I wish to share.

Life at the time

Just two months ago, before my diagnosis, I had begun to feel that the worst years of my life were behind me and that I was going forth in life with an optimism and strength I had never before possessed. About one and a half years previously, I had finally broken free of a difficult eleven-year marriage to a very controlling and abusive man. For years I had dreamed of ending the relationship, but it had taken a long time to collect my thoughts and strength, and to utilize the unfailing support of some close friends, for me to make the final break. After forcing the separation through legal means, the children and I began a wonderful process of emotional healing, finally free of the oppressive atmosphere that had pervaded our family life for years. I was faced with supporting five children; three children from the marriage, ages five through ten, and two step-children, ages fourteen through sixteen, but the financial difficulties that lay ahead seemed like nothing compared to what we had been through.

(The reason women stay in abusive relationships for so long is not the subject here, but I would recommend gathering some factual information on these relationships before anyone forms a quick opinion. There are some excellent resources on the web that deal with domestic violence and abusive relationships. Often the abuse and controlling behavior begin imperceptibly and slowly, sort of like, shall I say... cancer.)

The first several months after the separation were very difficult financially. Court-ordered support payments arrived monthly, but usually late and at unreliable times, and the amount was not sufficient for us to manage without some additional assistance from my family. I had good computer skills, as I had been working extensively with computers in a home-based desktop publishing venture. However, the work had been forced upon me in many ways, according to the needs of my spouse and his work, and it was hard to document my experience as formal employment. Even so, I decided to utilize my experience as best I could. I had always been technically and mathematically oriented, and in recent years, I had become interested in programming. I also had an M.S. degree in a scientific field, obtained in the years prior to my marriage, and I felt confident that I could apply my background in analytical and logical thinking to another area. A nearby college offered a good certification program in midrange computing, and since the job market was very good in this area, I decided to enter the program.

After several months of taking classes, I found a job in customer support with a local internet service provider. My ultimate goal was to enter programming, but the job helped, and we began to live a little better. On the other hand, I was very squeezed for time, putting in 40 to 50 hour work-weeks while taking three classes for nine credit hours. Two of the classes required additional computer lab time for programming. I remembered how I had managed graduate school years before, when I was a single parent of one child (now a grown man on his own), and I told myself I could handle the current situation for just a few months more. My final goals were almost in sight, and anything was better than the life the children and I had put behind. Despite long hours and little sleep, I often found myself full of energy and optimism.

The struggle paid off quickly. After just a few more months of classes, I finally developed the skills to obtain a position as a programmer with a well-recognized consulting company. My goal had been realized in a little more than a year, and I was ecstatic. I could spend more time with the children, as the hours were much more regular than at my previous job, I was beginning a professional career, and I found myself doing something I truly enjoyed. I still had two months of classes in the semester, but I finished them relatively easily. I was planning that when summer arrived, the children and I would have some well-deserved rest and relaxation. Working 40 hours a week and doing nothing else outside the home seemed luxurious compared to what I had been going through.

Symptoms appear

It was just after these positive turning points in my life that some frightening symptoms appeared, only one week after classes had ended. Getting ready for work one morning, I had one of my usual hay fever attacks, and one good sneeze managed to bring about profuse vaginal bleeding. It was so heavy I knew I would need immediate medical attention if it did not stop, but then it slowed enough for me to catch my breath and drive to an emergency room. There, the bleeding slowed to the point that I could be discharged safely, but the emergency room doctor told me that she saw "lesions" on my cervix, and she referred me to a local gynecologist. She said I should see him as soon as possible.

I was becoming very worried by now, as I had not had a Pap smear for almost five years. During my marriage, I would bring up the issue of annual checkups, but it was just one more issue of difficulty with my husband. He was from another country, that shall remain unnamed, and he used the (untrue) excuse that women in his country did not need these checkups and so why should I. It was impossible that I would go for one secretly or on my own, as he managed and watched as much of my time as he could. After I ended the relationship, I had no medical insurance and already had many medical bills that had accumulated for the children. I decided to wait until I could get medical insurance through employment and then would get that long overdue checkup and Pap smear. Later, the court ordered my husband to obtain medical insurance on all of us, but I did not learn until later that he had followed that order and put me on the plan. Meanwhile, I had been waiting to get on my new employer's plan. I was only one month away from eligibility when the bleeding occurred.

The gynecologist I was referred to seemed very good and I felt confident in him almost immediately. He had recently trained at schools and institutions I knew were highly regarded, and he treated me from the beginning as an intelligent and active participant in my care. I was well aware that the heavy bleeding could indicate cervical cancer, but he reassured me that it could also be due to a number of factors. He recommended that we not jump to conclusions until I had had a thorough exam and more tests were run. On the other hand, I was not very encouraged during the exam when he told me that a growth on my cervix was easily falling apart. He sent samples of the tissue in for pathological analysis. Now I had become extremely worried, but decided to remain hopeful and not jump to any final conclusions, until we obtained the official lab results.

Diagnosis

The following week, I returned to the doctor to hear the results from the lab analysis. As soon as I walked in, I noticed that his staff had trouble even looking me in the eye, and I was 90% sure then that the news was bad. Even so, I held out a 10% chance I was wrong. I would have to hear the diagnosis from my doctor to know for sure. I did not have to wait long. A few moments later, he walked into the examination room, sat down, swallowed hard, and told me the bad news. It was that "badness," and did I want to hear "The Word"? Yes, yes, I had to hear it... OK, then, it's cancer, cervical cancer.

Stunned to have to deal with the moment, but not actually surprised, I tried to remain calm. I felt very angry that this was happening, but all I did was mutter "Damn!" under my breath. All I could think of was getting rid of the disease as quickly as possible. I had already searched the internet for information on cervical cancer, just in case, but had skimmed through the information quickly, not wanting to believe that it would apply to me. About all that I retained from my quick search was that cervical cancer is often treated with surgery if it is still localized, and since a visual exam indicated that there was a good chance my cancer was localized, I wanted to have surgery immediately. However, my doctor reassured me that cervical cancer grows slowly, and he explained that it was important to analyze the situation more fully before determining the proper course of treatment. He called the hospital to order a CT scan, and he told me he would be contacting a gynecologic oncologist at a major medical center and referring me for treatment. He also told me to think positively, and I said I would try, but it was hard to feel very positive at that very moment.

As I left the doctor's office, I tried to stay calm and rational, but I vented a lot of anger too, by saying every expletive I could think of to myself, as I drove home. Here I had made heroic efforts to push a very controlling and abusive person out of my life, struggled for months to reach some very tangible goals, and then had just begun to reach those goals and feel successful. It seemed unbelievable that this could happen now. I was driving carefully, but asked myself how necessary it was now to be careful. Then I thought of my children, and I began to feel stronger. I had just come a long way for us all as a family, and the only way I had done it was by thinking positively and focusing on my goals. Maybe I was not going to have the summer I had planned, but I had picked myself up from setbacks before, and I would just have to take the same positive approach in dealing with cancer.

The next week I felt better after reading more detailed information on cervical cancer. I was well experienced with the Internet, and so it was natural for me to conduct more internet searches for information on cervical cancer. At that point, I did not feel ready to deal with emotional issues, as I did not know what my emotions were going to be until I knew more about my disease and the usual prognosis. I located good medical and scientific sites and was reassured to read that the rate of cure for localized cervical cancer is fairly high. The CT scan had not shown any spread of the cancer, and my doctor had not detected any masses extending beyond the cervix in his exam. I was beginning to feel very relieved. Although I knew that I was not qualified to form a medical opinion on my own, I felt reasonably confident that the cancer was still in an early stage. I looked forward to my meeting with the oncologist and starting the treatment in order get it all over with as soon as possible.

Sharing the news

During this time, I began to tell family and friends of the diagnosis. Actually, all my step-daughters had to do was look at my face when I came home from receiving the diagnosis from the gynecologist, and they knew something was wrong. When they asked, I told them them the truth and told them that we should not worry too much about it yet; that we did not know enough about the cancer yet to know how serious it was. We hugged each other, and they said they would try to help as much as they could. I asked them not to tell their younger brothers and sister yet, as I wanted more information myself before explaining the cancer to them, and they agreed.

Later in the week, I informed a couple of close friends who were already aware of my emergency room visit. They have remained very close and supportive, and other friends have also been very wonderful and supportive as the news spread to them. At a later time, when I was recovering from surgery, they planned a cooking schedule with each other so that we would have to worry about meals, and a friend who lives nearby has often picked up my children to play with her children and give us all a break. I could not ask for better or dearer friends.

I told my younger children of the diagnosis the next weekend, as we were ending a trip to the zoo. I briefly explained that I was sick with cancer and that I might not be able to do a lot of things with them in the coming weeks, because I would be getting treated for the cancer soon. I have spoken with them further and added to that information at various times since. I also called my oldest son, in his 20's and living about 150 miles away, and told him of the diagnosis. He was able to arrange his work schedule to stay with me at times, and it has been wonderful to have him to depend on.

One of the hardest tasks was giving the news to my parents. They had been so happy about my recent successes, that I felt terrible to have to tell them. I was also worried that they would overreact, and in turn try to "manage" the situation, without understanding first that it should be my choice how to deal with my disease. I needed time to formulate my approach before telling them. I collected my thoughts over the next week, and then introduced the news as gently as possible to them. I also asked them to try to understand that while I knew the news must be hard for them, that they please understand that I might not want to talk sometimes about every detail and that I needed to choose the times to talk. They were shocked and upset at the news, but during the next few weeks, they have done whatever they could to help with the children when I needed to be away for treatment. They are quite elderly though, and I have to be careful that I ask them to help with the children in ways that they can manage.

Since I was just beginning to qualify for full benefits at my job, after a three month introductory period, I was worried about how I would fare with my employer. I knew that my co-workers and bosses were very nice people, but I did not know how the company would respond overall to my illness. However, when I told them, I found that they really are a company with a heart. They immediately told me to worry about my health, not my job, and they told me to not worry at all about the time I would need to take off from work. Later, during the time I had to take off from work, I probably received a phone call or card from someone at work almost every day. Considering the horror stories I have heard about some employers, I feel very fortunate to be with such good people.

My estranged husband found out about the cancer after I sent him a fax with the news. Even though he had known that I might be undergoing treatment for a serious condition, when the insurance company sent him copies of the bills for my emergency room visit and some of my tests, he had begun to threaten to drop me from the medical insurance. He continued to make these threats even after receiving the fax. In the first couple weeks of receiving the diagnosis, not only was I going in for doctor's appointments and tests, but I was also making a trip to court to obtain an emergency injunction that would bar him from dropping me from the policy. Not surprisingly, he became very cooperative after the injunction was approved. His behavior did not upset me though, as I had learned a long time ago to not be optimistic where he is concerned. All the other nice people I know more than make up for anything he might do or say.

Initial treatments

When I met with the oncologist at the medical center a little more than a week after the diagnosis, I had managed to come to terms with the cancer in a much more positive manner. I was relieved that he thought that the cancer was probably localized, although he warned me that there was no way to know for sure would be during surgery, when abdominal tissue could be examined microscopically. He also suggested the plan for treatment. Even though the cancer was probably localized, the tumor was fairly large, and he said that it would be best to shrink the tumor before surgery with radiation treatments through implants. Two weeks after the implant treatment, I was to return to the hospital for a modified radical hysterectomy.

I think it really helped me during this time to already understand most of what he was suggesting to me, due to my active use of the internet, and I told him of the information I had found. For the most part, he was very positive, and at one point, he responded to my efforts to collect more information with the comment that he thought "an informed patient makes a better patient." He did add a warning that in addition to good information, there is a lot of bad information on the internet, but I assured him that I had noticed some really bad information as well, and that I thought I had enough sense with my background and education to judge the information. When I told him I had been reading a lot of information from NCI's CancerNet, he was relieved and even directed me to the web site put out by the Society of Gynecologic Oncologists.

Soon afterwards, I returned to the hospital for the implant treatment. While I knew it would be difficult to be confined to lying flat in bed for at least three days, I packed a number of books to take with me, as I thought I could pass the time more easily by reading. However, I had not realized how much I would sleep during the time, nor had I anticipated that it is not very easy to read for long periods while holding a book upside down over one's head. I found that my back did not take kindly to staying basically in one position all that time either, but no matter. The treatment was boring more than anything else, and I was glad to have finally started some kind of attack against the cancer.

Another turning point

Two weeks after the implant, I returned to the hospital for the radical hysterectomy. I was not looking forward to the recovery period, but I was relieved to feel that the cancer would now be removed, and I could begin to put all the upheaval of the past few weeks behind me. My oncologist had warned me that if he went in and found swollen lymph nodes with cancer, that he would close me up again without doing the hysterectomy, as I should then be treated with radiation for all of the cancer. He said that he did not expect that to be the case with me, according to findings so far, but he wanted to prepare me for the possibility.

My family nervously accompanied me to the hospital that morning, but I was feeling very calm and happy. I was wheeled out of the pre-op area towards the operating room, and the next thing I knew I was waking up. However, as I awoke, I sensed that something was wrong, something was "incomplete." Somehow I had an image in my mind of people feeling very frustrated and that the surgery had not been completed. I felt my abdomen for the incision and then knew I had had the surgery, but it seemed to me that I was still "full" and that the hysterectomy had not been performed.

Later that day, my doctor came to my room and told me first that the surgery itself had gone very well and that there had been no complications. Puzzled by my earlier thoughts, I began to feel relieved, but then he added more information to his report. That unexpected "possibility" had occurred. He had found swollen lymph nodes during surgery, and cancer had been found in one of them. He had not completed the hysterectomy and I would need radiation therapy instead. I was unable to handle any more details at that point, and he said he would return the next day to plan the details of treatment with me.

Up until the time of surgery, I had been thinking of cancer treatment in terms of immediate success or failure. I had begun to think that the cancer would be a short term inconvenience, and after treatment, I would just go on with life as usual. The news that cancer had spread to lymph nodes forced me to face the reality that my condition could not be easily treated with one treatment that either would or would not work. The diagnosis of cancer had been a major turning point in my life, and while this latest news was not as major as the first, it was yet another turning point, causing me to again assess my attitudes toward life.

New adjustments

As I write this, I am recovering from surgery and will be starting radiation treatments soon. With the setback I felt from learning that the cancer had advanced to a stage more serious than previously thought, I began to seek ways to deal with the grief I felt. I had read all the factual medical information I could find several times over and did not want to read it any more. I did an Internet search on cancer one more time, only this time I added the keyword "support" to my search, and the search turned up OncoLink as a major site. I had seen the OncoLink site previously, but had used it mainly as a starting point to reach medical information at other sites.

This time I decided I needed to deal with the emotional side of cancer. I looked at some of the artwork by cancer patients or by people who have a connection to cancer patients and felt many of my own emotions being released through the expressions in the art. There was anger and grief, and there was perseverance and joy. I also began to read about other support issues, such as how to deal with family and friends, and how other people should deal with cancer patients. I read the essays by some of the cancer patients too. It helped me immensely to read and experience this information. I feel fortunate to have a life rich with some very wonderful and understanding people, but I think I still needed to relate to the experiences of other cancer patients, and that was something my friends and family cannot give to me very well.

While I am writing this essay for the OncoLink site, it is not meant to be a "promotional." It is just that for me, the Internet has served as a primary source of information for a long time, and so it was only natural that I would use it in dealing with this latest crisis. I think it is more important to realize that it is easier to deal with cancer if one can find others who can understand more fully how one feels, whether the support comes from some kind of organized group, friends who may have already dealt with cancer, or from the Internet. I think I have quickly learned to readjust my attitude and feelings in a positive way, by finding such supportive information.

Currently, I have taken the outlook that I may as well learn to live with cancer as a long-term disease. Just like any such disease, treatments may be ongoing or recurring, and periodic testing and reevaluation will be necessary. I am feeling positive about daily life and have decided to enjoy each day as it comes. In the past year or so, I learned that there is a big difference between acknowledging and expressing emotions, and constantly worrying. The former is good for one's health, while the latter is an emotionally draining waste of energy. I stopped worrying a long time ago about things I could not change, and as a result, I think I have become a truly happy and positive person.

I expect to face some down moments, as when I deal with the side effects of treatment, but I hope to continue to tell myself to pick up and keep on going. I am no longer going to be overly concerned about statistical outcomes, because as I have read from others, each outcome is individual anyway. The worst moments for me now are when I think of my children, because they mean the most to me in my life, and I want to live for them. Sometimes I think that not only does it help to think positively, but maybe it helps to be angry too. I am angry at this these rogue cells that have decided to do what they want, and I keep telling my body to attack them any way possible.

After recovering from surgery, I think it will help to return to the ordinary routine of work and family. I am happy to have the immediate future ahead of me, and I plan to make the most of it. Every moment seems richer, because the uncertainty of the future has become more real to me.


News
Human Papillomavirus Load Linked to Cervical Cytology

Oct 21, 2014 - Levels of human papillomavirus-18 (HPV-18) DNA in cervical tissue are only associated with the severity of cervical cytology in women who do not go on to develop a precursor to cervical cancer, according to a report published in the Feb. 4 issue of the Journal of the National Cancer Institute.



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