Stage 3. The MyChart App results from the PET scan identified my cancer as being in stage 3. Our current medical system enables patients to access their results through an app called MyChart. Results from scans show up in the app days or even weeks before the patient has the opportunity to meet with a doctor. This can be a double-edged sword. You have the results in a timely fashion, but you still need to interpret them. This was the case for me. I would have at least a week to wait before meeting a doctor.
I took things into my own hands, I went to the internet — Hello Dr. Google. I looked up at least a few dozen words and many different sites for Nodular Lymphocyte-Predominant Hodgkin’s Lymphoma (NLPHL). My advice to anyone who is using Dr. Google is to beware the deep rabbit hole you go down. It’s hard to filter through all of that information and sometimes the tunnel gets very, very dark.
I am thankful I have a few friends who are doctors and they were willing to translate the medical lingo into plain English. I am also grateful for my friend who can read at lightning speed as she filtered through sites and sent me reputable ones.
NLPHL is a rare, indolent (slow growing) cancer that accounts for 5% of all cases of Hodgkin’s Lymphoma (HL). The outcomes for patients with NLPHL are generally regarded as better than those with classical HL. Of interest 75% of NLPHL cases are in males and most cases of NLPHL are diagnosed in stage 1 or 2. This made finding statistics or case studies related to my situation tricky.
“The estimated 5-year survival was 92% and 81% for early stage (1 or 2) and late stage (3 or 4) disease, respectively.” As a friend pointed out, if the facts are on the internet, they are likely already 5 years old. Thus, the success rates are even higher than published. I love numbers and mathematics, so I clung to these with my life. And as my oncologist said when she first met me, “You are healthier than 95% of my patients.” Thus the odds were ever in my favour.
In addition, my oncologist explained she and I would become friends for life, or until she retired, as there is a possibility my cancer may come back. There is about a 1% chance per year of recurrence and the effect is cumulative. So in year 5, there would be a 5% risk and in year 20, a 20% chance of it coming back.
If the PET had shown stage 1 or 2, I would have continued with ABVD chemotherapy followed by radiation. As I was stage 3, we were going to switch to R-CHOP, a more aggressive chemotherapy that would have different long-term side effects, but I would not undergo radiation. I was thrilled. I had heard too many negative facts about radiation so I was delighted to not go down that path.
Here was the kicker. Rituximab, the R in R-CHOP, is not covered by the provincial health care system for the type of cancer I have. Rituximab is covered by the province for the treatment of many diseases, but not NLPHL.
My oncologist explained the cost was $5,000 a treatment and I would require at least 6 treatments. I joked that we could use the money we had set aside for the kids' university funds. LOL! Thankfully, she didn’t think we would need to go that far. She was going to apply to our insurance provider and to Roche pharmaceuticals (the maker of Rituximab) for compassionate coverage for the cost of the treatment. In less than a week, she had good news. Roche had come through. I will forever be grateful for this turn of events.
Continue to My Diagnosis Story — Part 3 (My Cancer is Back)
#cancer # chemotherapy #rituximab #Hodgkinsdiease
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