Living With the Risk of Recurrence

For me personally, the greatest stress of living with cancer has involved making difficult medical decisions regarding my course of treatment. There is also the constant pressure of waiting for outcomes that I cannot completely control. When I was diagnosed with endometrial and ovarian cancer in late 2011, I was referred to the Tom Baker Cancer Centre where my case was reviewed by the Gynecologic Oncology Tumour Board. This team of doctors and specialized pathologists reviews all new referrals to ensure correct diagnosis and to recommend the best treatment plan. Almost instantly I became the patient of one of Western Canada’s most renowned pelvic cancer surgeons, Dr. Prafull Ghatage. I’ll never forget our first encounter with Dr. Ghatage, as my mother and I sat in stunned silence, he calmly explained that I required surgery as soon as possible. This news was overwhelming, especially since I had just undergone a total abdominal hysterectomy performed by my gynecologist. “I just had a hysterectomy and now I’m dying of cancer,” I tearfully blurted out. “You’re not dying, I’ll inform you if you are dying,” a voice immediately responded. These rational words jolted me back to reality, and before we left I signed a consent form for a laparotomy—a specialized procedure in which abdominal organs are removed, biopsied or repaired and a definitive diagnosis can be made.

That first meeting with Dr. Ghatage now seems like a lifetime ago. In a few weeks I’m scheduled for another routine checkup at the cancer centre. It’s essential that I be monitored regularly for a possible recurrence or any signs of malignancy—ovarian cancer has a notoriously high recurrence rate. Many women with the disease face at least one recurrence within five years of their first diagnoses. Since my cancer is considered to be fairly advanced, the standard course of treatment that was recommended included a month and a half of radiation therapy. Originally over twenty rounds of external beam radiation were advised and were to follow my cycles of chemotherapy. My understanding is that following through with this proposal might have reduced my odds of recurrence to as low as five or 10 per cent.

Last fall I made the excruciatingly difficult decision to forego treatment with radiation, opting for observation instead. The risks of pelvic radiation include the possibility of rectal bleeding—in addition some patients will experience a bowel blockage or a permanent change in bowel habits after their treatments are finished. In some cases undergoing radiation can result in bowel or bladder damage serious enough to be permanent or to require surgical intervention to correct. For most cancer patients the benefits outweigh these serious risks, which are comparatively small. But due to my personal medical history it’s almost certain that radiation would have posed a substantial danger. The radiation oncologist informed me that due to my previous bowel blockage the possibility of acute complications occurring would be much higher than average. Besides, I was undeniably exhausted from three consecutive abdominal surgeries in addition to five cycles of Carboplatin, at the time I felt I could endure little more.

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As I await my appointment on May 23, the encouraging news is that I’m currently in remission—at least I am to my knowledge—and my chances of a complete cure are better the longer I remain in this state. The Canadian Cancer Society defines remission as a decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body. According to Ovarian Cancer Canada, 80 per cent of women diagnosed with ovarian cancer will achieve remission. However, it is unknown if the cancer will come back or how long before it comes back. These unanswered questions linger in every woman‘s mind. In the meantime, I’ve made my health my primary focus—a nutritious diet, an appropriate exercise routine and getting enough sleep have never been more important. Obviously I’m careful to take my daily medication; I’ve been prescribed the drug Megace (generic name megestrol), it has been known to reduce recurrence rates in uterine, ovarian and breast cancer patients. Finally, hope and my steadfast determination to live each moment of my life fully and completely remain my allies in this dreadful waiting game.

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Information Please

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynaecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

I read the words endometroid adenocarcinoma for the first time, I didn’t comprehend until much later that I had learned my enemy’s name. Derived from the words “adeno” meaning pertaining to a gland and “carcinoma” meaning a cancerous tumour, the disease is a formidable adversary. One organ that is commonly affected includes the lining of the uterus, or endometrium. Adenocarcinoma is even more frequently diagnosed in the colon or the lungs. My surgical pathology report contained many confusing and ominous terms. I never thought of my reproductive organs as a possible death sentence, but that’s what the report seemed to be implicating. References to yellowish tan neoplasm and a uterine tumour measuring 11 centimetres at its greatest dimension both sickened and terrified me! At another point I started to pity my tiny right ovary. To make the personification complete, I’m sure she fought a valiant battle, but she was strangled by a separate tumour of about 7 centimetres.

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I’ve come a long way since I first read that menacing pathology report nearly a year and a half ago. My ability to deal with medical information and to collaborate with my health care team has improved since then. Today, I offer the following advice to cancer patients and their caregivers. In a broader sense these recommendations could probably apply to anyone facing a serious health crisis.

Knowledge is Power

You are the most important member of your cancer care team and it’s essential to actively participate in your care. Pay close attention throughout the process of your care and participate fully in discussions with your oncologist and other medical specialists. Don’t hesitate to raise any concerns with your oncologist or with other appropriate health care professionals on your cancer team. If something doesn’t seem right or you sense that certain issues aren’t being addressed speak up!

Find the Right Balance

Never in my life have I felt so simultaneously overwhelmed by an abundance of medial information and frustrated by a lack of it. This ambiguity of emotions is understandable in cancer patients as they undergo treatment for some of the most complex and difficult to understand diseases within the realm of medical science. Personally, I’ve discovered that tension and anxiety occur unless a balance of information about my cancer is achieved (not too much and not too little). In my opinion, this ideal equilibrium will vary. It also depends largely on an individual’s psychological makeup and is more often than not impossible to maintain constantly.

Use Only Reliable Sources

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our unique physical, emotional and psychological needs. I appreciate that the most specific and reliable information comes from my oncologist and the related medical professionals on my cancer care team. When I access printed materials or the abundance of online resources that are available, I am highly selective. I’d like to conclude this post by listing a few prominent organizations that I recommend.

The Canadian Cancer Society   http://www.cancer.ca

The American Cancer Society   http://www.cancer.org

CancerNet  http://www.cancer.net/cancer-types/uterine-cancer

 Ovarian Cancer Canada   http://www.ovariancanada.org

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