Saultonline’s Mike Caruso sits down with Holly Ingram to talk about her story of battling Carcinoid Cancer .
September 2012 I became a Net Cancer Zebra, it changed my life forever. Carcinoid and all NET Cancers have been given the symbol of the zebra because NET cancers have symptoms are very similar to common illnesses such IBS(Irritable Bowel Syndrome) or Crohn’s Disease. Doctors are trained that when you hear the sound of hoofs its a horse. With research and education doctors are now starting to hear zebra hoofs.
Carcinoid cancer falls under the umbrella term of NET (Neuroendocrine Tumour). These types of tumours are usually a slow-growing cancer. They develop from cells in the diffuse endocrine system. Most commonly found in the lung or gastrointestinal system. They may also originate in other parts such as the pancreas and the male and female reproductive organs.
Only 10% of patients will be diagnosed correctly mainly due to the fact that it does mimic common illnesses. The average time from original onset of symptoms to a proper diagnosis can exceed 5 years.
Some of the symptoms for NET cancers can include:
Diarrhea, abdominal cramps, flushing of the skin, wheezing or difficulty breathing, pounding or increased heart rate, skin rashes, high or low blood sugar, stomach ulcers that return when ulcer medication is stopped, high or low blood pressure and headaches.
NETS almost always become malignant (cancerous). Surgical removal of very small localized tumours is the only curative therapy. With timely treatment, these symptoms can be controlled and heart damage prevented. This is where the problem lies; patients are too often diagnosed when the damage has already been done.
I have to say that I was one of the lucky ones I was diagnosed quickly my tumour was estimated at having started six to eight months earlier. I totally believe that you have to listen to your body. I knew something was wrong it was a different pain and different symptoms then I had ever experienced before. Upon my initial visit to the emergency room I was given a xray which really didn’t show anything wrong. The doctor wanted to send me home with pain meds. He said he could order a CAT scan if I felt I needed it. I’m not the type of person who is forceful or demanding. I generally just go with the flow. For some reason I said I need and I want the CAT scan now. I was devastated and yet proud at the same time when the emergency room doctor came back with the results, his head hanging low. I knew in that moment that my life was about to take a drastic turn. I was told I had a large tumour on my bowel and that the cancer had spread to my liver. I had and still have several tumours all over my liver.
With that I started on my two year journey!
I started seeing Dr Spadafora at the SAH Cancer Clinic. I was also referred to see a liver specialist at Princess Margaret Hospital in Toronto. I now travel every six months to have an MRI and follow up appointment with Dr. Moulton. I have also starting seeing a specialist in endocrine tumours in Toronto, Dr. Ezzat. I see Dr Ezzat every four months in Toronto. Dr Ezzat is currently working on securing funding for a new clinical trial that I am hoping to be a part of in 2015. I have also seen a radiologist who has suggested that I have a procedure called liver embolization (basically cutting the blood supply to half of my liver). He will do one side let my body recover and then have the other half done. This procedure needs to be completed before I can participate in the upcoming clinical trial.
My treatment as of right now includes monthly injection of sandostatin this is given to help stall the growth to the liver tumours. This had been successful. My last MRI showed no growth and some moderate shrinkage to one tumour. I must say that all of the staff from the cancer clinic are truly amazing people. They walk you through everything before it happens, they encourage and guide us. Not just myself but my entire family. They are a strong group of caring people and I am greatful that they chose the job that they did. It has made my experience easier knowning that you can call on them ask them anything. Everyone tries to make this time in my life easier and more manageable.
I would like to take this time to thank my support system. I could not be doing as well as I am without you all. First is Randy (my husband) he is always there for me keeping my calm through whatever crisis we may go through we do it together. He always knows how to make me see the big picture, not just the little bumps in the road. I won’t let myself be a victim. I may have cancer but cancer does not have me. Randy helps to keep me thinking this way. My parents, my sisters Melanie and Rhonda, sister-in-law Sue, my Aunt Wendy and countless friends who always without haste jump in to help with Chloe when I’m having a bad day. Because of all of you I am able to fight and be strong. I will find away to beat this disease. And finally to my daughter Chloe who gives me reason to fight and fills our lives with love and laughter. Every day is a new adventure with her. Momma loves you to the moon and back Chloe.