My Diagnosis Story - Hodgkin’s Lymphoma (NLPHL)

March 2022

A marble. In the joint where my leg met my hip. A small, hard, round marble exactly where there should never be one. March 11, 2022. I remember the date as we were scheduled to leave for a ski trip with friends in Le Massif. A quick google search revealed that if I went to the doctor, the first suggestion would be to watch and wait. I skipped going to the doctor and followed the watch and wait advice. The ski trip was incredible and upon our return I booked an appointment with my family doctor. 

After telling my family doctor about the “watch and wait” strategy I’d employed for 10 days, he ordered blood work and an ultrasound. I had both done within days. The blood work came back normal and the ultrasound was inconclusive. I’ve learned that inconclusive is a fancy word to mean, “we have a better idea of what it is not, but we can not confirm what it is.” My family doctor seemed unconcerned and ordered a follow-up CT scan which had a two or three month wait time. 

Fast forward to Saturday 16th, April. As had become a habit at bedtime, I checked my groin and “Lumpy”. What had been a marble had grown into a golf ball. “Lumpy” caused me no pain but was ever present. I was concerned, but with the scan ordered, there was little to be done.

The next morning I awoke to a throbbing, shooting pain from my hip to my knee. It started as a mild constant pain, with sporadic jolts of stronger pain, but both increased throughout the day. By Sunday night, I was in such pain that I knew I needed to head to the hospital. A quick check of wait times revealed an eight to 12 hour wait. I opted to sleep in my own bed and headed in at 7 am.  

In the emergency, a nurse came in to see me and to drain what they presumed was a cyst. I let her know that I'd previously had an ultrasound which came back inconclusive. This knowledge put a quick stop to her actions and the emergency doctor was brought in. He ordered a CT scan, which came back inconclusive. They repeatedly asked if I’d fallen or hurt myself, as this was what the scan indicated. I hadn’t. I was prescribed pain medication, antibiotics in case there was an infection, and told to wait at home until the emergency MRI which had been ordered. Within 24 hours of leaving the emergency, a 6” circle on the skin of my leg became bright red and hot to the touch; “Lumpy” had caused an infection in my leg. The infection caused the pain.   I took most of the week off from work as I was unable to stand due to the pain. 

Within a week, I had an MRI of “Lumpy” and his new friend “Mini-Me”. The MRI narrowed down the options, but the result showed no conclusive diagnosis. This in turn led to the order for a biopsy which I was glad to have as “Lumpy” and “Mini-me” had since multiplied and now there were also “Baby” and “The Twins”. “Mini-me” was extracted and biopsied. 

On May 12, I was given my diagnosis. I had Hodgkin’s Lymphoma (HL) — to be specific, Nodular Lymphocyte Predominant Hodgkin’s Lymphoma. A rare type of HL that usually affects men. The upside was that it is an indolent (slow growing) cancer and people are usually diagnosed at stage 1 or 2. We started ABVD, the appropriate course of chemotherapy for what I had. 

At the next appointment, my doctor met with us to reveal the PET scan results. She opened her computer and pulled up an image of the body. She pointed out the 5 red markers indicating the separate cancerous sites spreading across my diaphragm; one in my groin, two in my abdomen, one at the base of my neck, and my right tonsil. My cancer was in stage 3. My entire treatment was about to change. 

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Continue to My Diagnosis Story — Part 2

Continue to My Diagnosis Story — Part 3 (My Cancer is Back)

#cancer #Hodgkin's Lymphoma #NLPHL