Nancy’s Story: How Quickly Things Can Change
As I recall that one-day in late June 2002, I shudder with the memory. I got called out of my classroom to receive a call from my family physician saying she had the results of my ultra sound and needed to see me immediately. My world came crumbling down, as I knew it couldn’t be good news.
I had suffered for years with severe heartburn and was given many things from Maalox, Pepto-Bismol, Tums, Zantacs, and Losec. All temporary relief for what turned out to be a hiatus hernia. I had suffered with this type of pain from the age of 13 when my family physician at the time claimed I was just overweight.
Subsequently, I decided to begin eating healthy and working out. However, the pains continued and got progressively worse as I aged. By the time I was in University it got to the point that at least once a month I would have a severe acid attacks which, would cause a burning pain in my chest and a piercing knife pain in my upper back left side. This would last a few days to a week and would also cause me to have extreme nausea, cold sweats and sleepless nights. It was in 2002 that I decided enough was enough and my new family physician ordered an ultra sound.
Upon arriving at her office I knew the news would not be good, as I was told that a hiatus hernia can lead to stomach cancer. As she entered the room, my family physician told me they had found a mass in my pancreas. I replied, “I have cancer!” She replied that they did not know if it was cancer and that it could be a cyst. They then ordered a CT scan for the next day, June 22, 2002.
Still living at home I drove home tears pouring down my face. As I opened the door, my family was shocked to see me arrive so early from work, not knowing where I had been. I could not control the tears and I fell to my knees, mentally and emotionally exhausted. My family collapsed, our worlds changed and all our lives took a turn for the worse.
The next day my father and mother accompanied me to the hospital for my CT scan. A few days after we received a call from my family physician to come in. “The mass you have is cancer”. Everything happened so quickly. I then was referred to an oncologist at Grand River Hospital in Kitchener. Not knowing what cancer I had, I began my search on the internet thinking I had pancreatic cancer and realizing my days were numbered.
After meeting with my oncologist she stated that I had a mass in the tail of my pancreas and multiple lesions in both lobes of my liver. She was not sure what type of cancer it was but needed to have a biopsy done to confirm exactly what it was. My biopsy was scheduled for July 4, 2002 and it was an extremely difficult day for my family and myself. After my biopsy my family and I headed up to the cottage to try and continue on with our day. However, things were not the same as my family walked on eggshells and all of a sudden I was treated differently although I felt fine.
It was at this point that I decided to call on my family to discuss this “cancer”. I was depressed, angry and confused. I was only 26 years old. I had just graduated from teachers college with a Masters of Education. I had principals calling with job offers and my life was finally beginning. I was healthy, ate well and worked out routinely. I did not smoke or drink. Life was not fair. But then again who said it was? Therefore, I told my family enough was enough. I had no symptoms and I did not feel sick. Besides what all the doctors were telling me I felt fine. That is when I decided I was in control over this cancer and not the cancer over me. I told my family that the long faces had to go and I wanted my family back. We were strong and had a deep faith that could get us through this battle. I wasn’t going down without a fight.
After the results were in, I met with my oncologist and found out that I had what was called Neuroendocrine Cancer. Never hearing the word before I was confused and got even more confused as all the jargon and paper work got thrown at me. Yet, the one thing that stuck in my head was, “it’s a slow growing cancer and you can live for many years with this”. These words for me were words of hope. Although simple I uttered them over and over in my head. My oncologist then ordered multiple blood tests, a 24 hour urine test, lung x-ray, MIBG (bone scan) and an Octreotide scan. From there it all began.
My oncologist then referred me to two other oncologists at the London Health Sciences Center. From there I did various other scans including another Octreotide scan and CT scan. After receiving my results I sat with my Doctors and decided what my plan of action was going to be. I was going to begin a 15-week treatment plan of Indium 111-Octreotide and chemotherapy. I received three doses of the Octreotide, Epirubicin, and Carboplatin in London during my 15-week treatment plan. This was a two-day procedure as I was admitted on Monday and was released on Wednesday. I also received the Epirubicin and Carboplatin every three weeks at Grand River Hospital in Kitchener. Lastly, I was also taking the 5FU infusion through my Picc line.
In my 15-week period I focused on being positive, staying informed and giving it my all. I had good days and bad days like anyone else. I also decided to look at other treatment options. I visited a naturopathic Doctor who prescribed numerous vitamins and minerals to merely keep my immune system strong during my battle. I did fairly well considering but it was a long 15 weeks. A lot of prayer, and meditation helped me along the way. I suffered many side effects including, hair loss, mouth sores (which I combated with Magic mouth wash), and swelling of the hand and feet, which resulted in my skin peeling. I had a few fevers and days where I was exhausted. Then again there were days you couldn’t hold me down because all I wanted to do was get out of the house, which I did! My mother kept me going and made sure I ate right, keeping my immune system in tack with kale, beets, spinach, liver, eggs, and sardines. You name it and I ate it!
After the 15-week period the results proved successful. I had shrinkage both in the mass in the tail of my pancreas from approximately 6 cm by 5 cm, to 4 cm by 3cm. I had shrunk various lesions in the liver as well. Things were looking up! After my treatment I did various other CT and Octreotide scans to make sure things remained stable. Approximately two years passed and it appeared that things were active again. That is when we decided to do 3 more treatments of Indium 111 without the chemotherapy. Once again, the results looked good.
The years passed and we continued to monitor my situation with scans and blood work. I also found myself another naturopath in Toronto with whom did multiple treatments. Numerous treatments consisted of detoxifying and cleansing, and others targeted the cancer. One of the numerous treatments I had done was Infrared Therapy. This is a treatment, which uses infrared heat to destroy cancer cells as cancer cannot survive in intense heat. To this day I still continue to do this treatment and find it worthwhile.
About two years later, I was to get married. This is when my life took another turn for the worse. I had spoken to my Doctors about the possibility of being able to have children and if Neuroendocrine cancer was hereditary. The answer I got was if I wanted to have children I should do it sooner than later and that no studies had shown that it was hereditary. Therefore, after getting married my husband and I decided if it was meant to be it would happen. In the meantime I went in for a routine CT only to find out that the cancer was active again and my blood work indicated that my liver enzymes were very high. I also found out a week later that I was expecting. My heart sunk once again, as I was faced with another extremely difficult decision.
My Doctors were extremely concerned for my well being. They felt going through with the pregnancy would jeopardize my life and the life of my baby and my best option would be to terminate my pregnancy. I was dumbfounded and couldn’t believe that I was faced once again with such a difficult decision that now would also affect the life of my unborn child. My heart was telling me all would be fine and my faith was telling me this child was meant to be.
I then flew to New York City to get another opinion that resulted in the same response as my oncologist had given me. I saw another Doctor in London in regard to possible treatments during pregnancy and again felt like I was hitting a dead end. I then let God decide and told myself that I had lived my life and was ready to continue on with this pregnancy and carry my child to term. Whatever was to happen, I would deal with it.
I did various research on Neuroendocrine cancer and pregnancy. I joined chat groups in the U.S. and then discovered CNETS Canada. I met many amazing people who told me their stories and gave me advice. I learned of Carcinoid Crisis and made sure I was prepared for anything that might come my way. I had an amazing OB in London who followed me closely with ultrasounds and routine blood work. He worked together with my oncologists and I knew I was in good hands. In the end my faith persevered and my beautiful son entered this world safely on August 3, 2006.
Following the birth of my son, I had promised to do another CT and Octreotide scan to see what happened during my pregnancy. Things were still active although there appeared to be very little change since my pregnancy began. My Chromogranin levels had fluctuated throughout my pregnancy and my liver enzymes had also varied. Once my son was about 8 months old I decided to go ahead with more treatment, for now, I had more reason to fight.
I was given the option to either do: chemotherapy with a radioactive isotope, Interferon or Yttrium-90. I decided to do Yttrium-90 because I had done well with my past treatment of Indium 111 and knew I was a candidate. I did three treatments of Yttrium-90, which were administered in London, England at the Royal Free Hospital. My first treatment was in February of 2007 and I just finished up my last treatment in September of 2008.
Preparing for my treatment in London England was an adventure. I had to sign the necessary forms to be accepted by OHIP. Once approved I got the letter from Royal Free with my date for treatment. I then set my flights and booked a hotel after extensive searching. The first time around was difficult. However now I feel somewhat like a pro.
As for the treatments themselves, they went fairly well. Before the treatment, I had a kidney scan done to make sure my kidneys functioned well. I also was given amino acids before treatment to help protect the kidneys. Like the Indium-111, the Yttrium-90 is administered intravenously and takes minutes. I was nauseated and did get a burning sensation in my veins due to the amino acids but overall, it went well. I received anti-nausea medication and made sure to get a prescription for the trip home. I drank lots of fluids and checked out of the hospital in three days. I then proceeded to take advantage of the fact that you must wait two days post treatment before leaving the country. So I did some sightseeing. Overall, I had enough energy and only felt a bit nauseous. I have received my CT and Octreotide results from my Yttrium-90 and things are looking good. My tumours once again have significantly reduced in size.
All in all, my last seven years has been an unforgettable journey. I’m now 33 years old, married with a wonderful and loving husband, a precious and adorable 2-year-old son and a full time teaching position, which I still managed to go to every day. I feel blessed that I have such tremendous support, both from family, friends, naturopath and physicians that have given me a fighting chance. My faith is stronger, my family is stronger and I am stronger. Don’t get me wrong. I have my bad days, but I thank God for each and every one of my good days that I am alive!
Nancy