Elissa Alter’s Story

In 2002, I started experiencing a persistent ache on the right side of my abdomen. It was with me all the time, day and night. When it didn’t go way after several weeks, I went to see my family doctor to discuss what might be causing this ache. She didn’t know but sent me for blood tests. At the same time, I had my annual appointment with my gynaecologist. I mentioned this persistent ache to her and she arranged an intravaginal ultrasound to see if there was something inside my vagina and lower abdomen that might be causing my discomfort. The technician spent a lot of time doing the test and called in his superior to discuss something that they saw on the screen. They put it down to a swollen lymph node in the lower abdomen and sent this report back to both doctors.

I had a colonoscopy around the same time to make sure this ache wasn’t related to my colon. Everything was fine. The ache stopped suddenly and I felt like a deafening silence had just descended on me. I enjoyed the sensation. Then all of a sudden, after a few weeks, the ache returned. At that moment I decided that my body was telling me something important and I needed to be even more proactive. I went back to my GP who ordered an ultrasound of my abdomen, which immediately showed a mass on my right side. A CT scan followed up this ultrasound the next week, which confirmed the mass. I underwent surgery the next week. In December 2002, the surgeon performed the operation laparoscopically and found a Meckles diverticulum with a tumour inside it and a second one beside it. Pathology showed both to be carcinoid tumours.

I remember when he called me, he asked me to get a pen and paper and write down the name he was going to give me- “carcinoid cancer”. He said it was extremely rare. He thought that he had removed all of the tumours (curative surgery) but because there was always a chance that some microscopic cells were floating around, he arranged follow-up with an oncologist. I also remember the surgeon saying that I was very lucky and that “someone up there liked me”. He said that the tumours weren’t causing the ache, but rather the diverticulum. If it hadn’t been for the ache that signalled something was wrong, the tumours, which he said had been growing for a few years, would have spread to the liver and elsewhere before I became aware that I had them.

So I started my follow-up with an oncologist who arranged six month CT scan of my abdomen, pelvis and lungs with three-month regular blood tests. I really liked him, but he was upfront with me from the very first visit. He said that he had only had one patient with carcinoid cancer in his 30-year career. He never ordered a CgA blood test or had me do a 5HIAA urine test. But follow-up via scan and blood tests indicated that there was no evidence of disease.

I went to him from February 2003 to February 2006, when all of a sudden, I began to flush and have diarrhea. Because of all the reading I had done over the years into carcinoid cancer, I knew immediately that I had developed carcinoid syndrome. I knew I needed to see a specialist right away.

At the same time, I found Maureen Coleman and her CNETS group by googling a website that listed support groups in the US and one group in Canada- Maureen’s Toronto group. I called her, introduced myself and went to my first support group meeting where I met many other NETs patients. I made some friends and realized for the first time in three years that I wasn’t the only person in Toronto with this disease. My feelings of loneliness and isolation disappeared. Through the support group, I heard of doctors who specialized in this disease, both in Toronto and in London, Ontario. I asked my family doctor for a referral to Sunny brook Hospital which is close to my home. And at that point, in February 2006, I started a patient/doctor relationship with a young oncologist at Sunnybrook who was interested in NETs. He set up a schedule of diagnostic tests to establish benchmarks for following my disease. He started me on Sandostatin for symptom control. I had regular imaging tests, specialized blood tests (CgA) and 24-hour urine tests to follow my disease.

A CT scan in August 2007 showed that I had two small tumours in my abdomen, one being so subcutaneous that it could almost be felt by pressing my abdomen and one in the mid gut where the primary one had been removed in 2002. My oncologist made an appointment with a surgeon at the hospital to remove these two tumours.

While I waited for this appointment, in October 2007, everything changed quickly. The subcutaneous tumour started to make a small bulge on the right side of my abdomen that was painful when anything pressed against it. I went to emergency (at the recommendation of my oncologist who couldn’t see me immediately). There a CT scan showed that I had numerous tumours in my mesentery and in my liver. They had multiplied and spread in the space of one month. My oncologist referred me again to the surgeon for an immediate consultation and in January 2008, I had an operation. The surgeon who was excellent debulked my tumours in the abdominal area, did a rerouting of a part of my bowel where a tumour was wrapped around the small intestine and removed some tumours from my liver. My ki67 came back at 17, an indication that my tumours were aggressive. I remember both the surgeon and my oncologist telling me that they had good and bad news: The bad news was that my tumours were aggressive, but the good news was that now I could have chemo which had proven to be effective with more aggressive carcinoid tumours. I remember laughing when they said this – this was the ultimate in positive thinking. Talk about the glass being half full. By their positioning of my situation, I felt thankful that I could have chemo.

My oncologist sent in a referral for me to London, Ontario. But while I waited for an appointment, I started on five sessions of chemo at Sunnybrook from March 2008 until July 2008, a combination of cisplatin and etoposide. Unfortunately, the chemo did not work. While it did cause some tumours in the liver to reduce in size, the ones in the abdomen were growing.

My oncologist looked me in the eye and said there was no other chemo that he could suggest. We still hadn’t heard back from London, Ontario, so with the knowledge and support of my oncologist, I looked outside the country for treatment.

I had heard of a Centre of Excellence in Europe where another young woman in our group had gone for treatment, which was working for her even though she had been told that, at age 21, she should prepare for her death.

I emailed Dr X, introduced myself and asked him if he would see me. He emailed back immediately to say “yes” and tell me what diagnostic tests and reports I needed to send him, including my pathology slides from my January 2008 operation. I gathered everything up and sent everything off to him a week before my husband and I left to meet him.

During the week I was there, he ordered blood tests, a 24-hour urine test, a CT scan and an octreoscan. On the final day of our stay, I met with him and he said “don’t worry, I can help you”. I felt so thankful. He prescribed a regimen of two oral chemo pills that I started on in September 2008 in Toronto.

I emailed my oncologist from Europe to tell him the results of my discussion with this doctor. My oncologist was very interested and made an appointment for me to discuss my experience with him upon my return. We both received comprehensive reports from the European doctor.

My oncologist sees me regularly. He fills my prescription for my chemo pills that I take for fourteen days each month. He orders regular blood tests, specialized blood tests, urine tests and scans for me. My latest CT scan in March showed that, with the exception of one tumour in the liver that has grown a small amount, the rest are stable. I equate the effect of the chemo pills like holding back Niagara Falls. I send the results of my CT scan and reports to the doctor in Europe.

I had another CT scan this month, June 23rd, and get the results in July when I see my oncologist. I always feel frightened about hearing the results but I try to balance this fear with three things. Firstly, I am doing everything I can to manage this disease. Secondly, I feel great and enjoy a good quality of life. And lastly, I find things to occupy my mind, like involvement with CNETS Canada. It has provided a very positive focus for me, as have my loving family and friends.

I continue to move forward and live my life according to this mantra:

Yesterday was history
Tomorrow is a mystery
Today is a gift
That’s why it’s called “the present”

Cheers, Elissa