What was your diagnosis? Cervical Cancer
What are your career goals? I would eventually like to work in a cancer organization, possibly as a counsellor or as a fundraiser organizer. I generally just want to help people.
What is your occupation?Optician
Your Cancer experience:
My beautiful daughter, Brynn, was born on July 29, 2008. My husband and I had been married for six years, and I had wanted a baby for a long time. It was the happiest moment of my life (clichéd, I know, but true!).
Six weeks after she was born, I went for my routine follow-up and pap test with my gynecologist and went about my life not thinking anything of it. One month later I got a phone call saying the tests had come back abnormal, and I needed to have another test done. An appointment was set up for the following month. Still, I thought nothing of it. I have a friend who had abnormal cells before, and just had to go have them removed; I figured mine would be similar.
On November 19 I went for my biopsy and colposcopy, and even the doctor thought it would turn out as nothing—at worst it would be the HPV virus which she said would be entirely manageable. On December 19, 2008, exactly one month later, I got my results. The phone rang—my daughter was four and a half months old and napping, my husband was at work, and I was alone. The doctor was incredibly sympathetic, but told me she didn’t want me to have to wait to come into the office to give me the news. She just told me over the phone, “You have cervical cancer.” I was 27-years-old.
I acted very in control of the situation on the phone with the doctor. I mean, what good was it going to do to cry to her? I held it together, but I started to cry as soon as I got off the phone. I have to be honest, even though people had said it was nothing, I think I always had a feeling deep down it was going to turn out to be something—I don’t know why.
I called my husband immediately, and through tears I told him I had cancer. He told me he was on his way, and just left work without even telling them why. He came home, and he held me and I cried.
I already had an action plan that no matter what happened we had to get rid of it, no matter what it entailed—a hysterectomy, whatever! At that point we had no idea what stage it was at, or really any idea at all of what were the options for cervical cancer. The doctor was nice enough though to give us her direct number so we could talk to her anytime during the weekend (although later we found out we still had to go through a secretary who wasn’t as willing to be as accommodating).
I was diagnosed six days before Christmas and 12 days before our trip to South Africa where our daughter was going to meet her grandparents for the first time. We had no idea if we would still be able to go.
We told my family that night, and they had no idea any of this was going on and were completely caught by surprise. Of course they were supportive, and just as we did, they wanted answers. We made some phone calls to the doctor, tried to get a few answers, but still felt very in the dark even after getting off the phone. There wasn’t really anything we could do until we had the scans, saw the oncologist, and could determine what stage the cancer was at. In the meantime I could go to South Africa, enjoy my holiday as it would not delay my treatment since mostly everyone would be on holidays over Christmas. I was told cervical cancer generally moves very slowly, so it would not do any harm waiting a month or so. Of course, this is never what you want to hear, as all of us wanted this dealt with like yesterday.
We went to South Africa though, surprised my in-laws with a visit from their first grandchild and then surprised them a few days later with my diagnosis. They were also devastated, but very supportive. We didn’t tell anyone else until after I had more answers as to the stage of my cancer, as we wanted to be able to give people more information.
My first scan was on January 26, 2009. I finally saw the oncologist on January 29. I was fully prepared to have the hysterectomy, but he told us of a new procedure called a trachelectomy that removes the cervix and upper vaginal canal but leaves the uterus and ovaries in place to hopefully maintain fertility. This procedure was only done two places in Canada, so I would have to travel, but he really felt it was the best option. With the idea that my husband and I always wanted to have more than one child, we decided to go ahead with the procedure, and the doctor told us he would get us in within a couple of weeks.
After a week, I still had heard nothing of my impending surgery date, so I started making phone calls to Toronto (where I had been told I would be sent). The doctor in Toronto said he would get me in quickly, and not to worry because cervical cancer is generally a very slow moving cancer and I had nothing to worry about. His receptionist told me different stories each day, and said that my situation was very complicated and there would be no way she could get me in that quickly; I would just have to wait. Later when I got to Toronto I found out one of my files was still sitting on her desk and had never even been opened. I finally got my surgery date for March 12, 2009.
In order to travel to Toronto my family and friends threw a fundraiser in my honour which raised over $8000! I felt so lucky and truly blessed. Cancer may be terrible, but I definitely realized how many wonderful people I had in my life.
When I got to Toronto I had a few days of appointments with various parts of the Cancer Centre there to get all the information I needed for the surgery. One was another colposcopy that resulted in the doctor telling me my tumour had nearly grown to three centimetres, and may be at the point where he could not do the new procedure, but he wouldn’t know until he was in surgery. Luckily, he was able to perform the trachelectomy. I was only supposed to be booked as a day surgery, but ended up spending three nights in hospital because of complications with low blood pressure and intense bleeding.
Finally I got to go home and be with my family during my recovery. My husband had come with me to Toronto, but I had to leave my daughter for the first time and that was the hardest part of this entire journey. During my recovery I was not allowed to pick my daughter up for six weeks, so I had to depend on people to hand her to me. I would rock her to sleep every night so I still felt like I was being active in her life (it made for some very bad sleep habits later on though). My mom was fantastic and took sick leave from work from the time of my surgery until the time of my final treatments to help take care of me and my daughter.
A week or so after my surgery, I went in to see my oncologist in Saskatoon, and he told me that the cancer had spread to my lymph nodes, which would require radiation and chemotherapy, and also an ovary suspension to keep my ovaries out of the radiation beams and prevent early menopause.
I had my ovary suspension April 23, 2009, and had another six weeks of not being able to lift my daughter. My mom continued to help me, and my mother-in-law even flew from South Africa to help for two weeks. My radiation started in the middle of May: 25 rounds, and my chemo at the same time, five treatments of cisplatin. I was very lucky and didn’t have a large enough dose of chemo to lose my hair, although it did thin. Luckily I have very thick hair so no one could tell but me. I completed my treatments June 18, 2009.
Since finishing my treatments, I continue to see my oncologist now every four months. There have been a few scares a couple times with abnormalities arising, and new biopsies being done, but thankfully everything comes back negative. I have had quite a few trips to the emergency room as well, for complications arising from my surgery (a few bleeding episodes, ovarian cysts).
After all is said and done, I have never felt sorry for myself or been angry that I have cancer, but I do question the decisions that were made in my treatment. If I were to have to do it again, I don’t think I would have had the trachelectomy as there are so many complications and unknowns that have arisen from it, answers that people can’t give me, and because of the radiation and chemo I can no longer have any more children. I’m not saying I regret it because I believe we are always learning from our experiences, I just would’ve done it differently and want to share my experience with others so they know to educate themselves with their options instead of just taking the first thing they are told.
In which hospitals were you treated?
Sunnybrook Cancer Centre, Toronto – Allan Blair Cancer Centre, Saskatoon
At what level of education were you at diagnosis?
What were your first thoughts when diagnosed?
I am going to beat this; my daughter needs me. I don’t know if I’ve still ever dealt with the emotion of the diagnosis. I have always felt like I’m telling people about someone else who has cancer.
How did your family react?
Sad, scared, and supportive. My sister’s best friend died of breast cancer one month after my diagnosis; she was 31. I think dealing with that on top of my diagnosis really freaked my family out, although they never said that to me.
How did your friends react?
My friends were amazing and still are!
What is your current medical status?
Clear, but no one will use the words remission or cancer-free.
How is life different for you now post diagnosis?
I feel like I have a story to share, not just with my cancer experience, but with the events in my life that I now believe have lead to my diagnosis. I want to change the world, in a manner of speaking, and more so I want to change the face of cancer in Canada so it is more recognized that young adults are being diagnosed more and more every day. I don’t feel like the petty things in life are worth worrying about anymore, and I sometimes have trouble being around people who I feel are negative and have bad energy in a matter of speaking. I like to surround myself with positive people, with a great energy, as I feel now more than before that energy from other people affects me more than ever.
What is the toughest part of your challenge?
I find the waiting in between treatments, and appointments to be the hardest. I always felt very positive while going through everything, and like I said, as though someone else was going through it. The time in between though, I find questions arise about my health and treatment, that is sometimes hard to deal with; and whenever I have something wrong with me now there is always the thought that comes to my head—is the cancer back? I don’t know if that ever goes away.
What was the best lesson you took away from your challenge?
To cherish the time I have with my daughter and to enjoy life more and try not to stress so much. I don’t know if I’ve lived up to the latter part of that statement as much as I could, but I had always planned to go back to work full time after having children. Now I’ve decided to only work part time, and it was the best decision I ever made. I have more time with my daughter, more time to do the things I love, and be with the people I love.
What really motivated you to keep going while you were sick?
What are your thoughts and feelings about your illness now? How have they changed since before your diagnosis?
I feel now, nearly three years after my diagnosis, I am just starting to deal with the emotions that surround it. I find I want to reach out more, and find people that have gone through similar experiences, and get answers from professionals about the treatment of cervical cancer—answers I maybe should have sought out at the time of my diagnosis.
What are some preventative measures people can take to lower their risk of having an experience like yours?
Educate yourself, and have an advocate for yourself (family, friend whoever) that can help you get the information you need to make the right decisions with your treatment, and make all the critical phone calls to health centres. You are dealing with enough when you are diagnosed, it helps to have someone there to deal with the stressful stuff so you can just relax and concentrate on yourself for a while.
Did you attend any support groups during your challenge?
I did not. I always felt very detached from my diagnosis, and it is only now that I am trying to connect with people in similar situations. I am looking to start a support group now in Saskatchewan for young adults with cancer, as I have since found there is not much in my city for that.
How are you connected with Young Adult Cancer Canada?
I put out an ad on Kijiji and Facebook saying I wanted to start a support group for young adults with cancer. That connected me to two individuals who are helping me make that a reality, and directed me to websites of groups that supported my same vision and idea.