So, getting back to my original story I had been through a lot of scans and tests and although they gave my doctors a good idea of where my cancer had spread to there was one last scan that could possibly give the clearest picture yet. It is a scan called the Gallium 68, and it’s paramount in detecting neuroendricine tumour cells. In Ontario you still have to be approved for a clinical trail in order to get one, which is something our organization is trying to change, otherwise I believe the cost to get it done is I believe around $2500, but unsure. I was fortunate enough to be approved.
When my Brantford team referred me for a second opinion to the Hamilton Juravinski Centre, I received a phone call to come down for an appointment in two weeks, that put the date in the middle of November 2020. I went down and met with, he’ll have to forgive if I spell his name wrong, Dr. Oren Lavine, I’ve only met him once. We talked about the usual, my symptoms, pain, mental stress(anxiety). I came prepared as I usually do, I think the Doctors like when I come prepared and full of information I’ve gathered through my support group and have questions ready to ask. We spoke about the scans I’ve had and my incinsistant lab work, meaning my blood and urine markers fluctuated quite a bit between tests. I mentioned to him the Gallium 68 scan that I had read about and been discussed on group sites. He agreed with me that was what he wanted me to get done next, he would have to submit an application for my to the Princess Margret Hospital, in Toronto on my behave to see if I could be approved to be part of the trial. I was told I may here back in a month or two if it was going to happen, hopefully by the end of 2020. Besides wanting to get the scan done he told me he believed that he was in agreement with my Brantford team with the treatment I was receiving and wouldn’t change anything, unless this GA68 scan showed them something different.
To my surprise I received an e-mail from the Princess Margret Hospital a week later stating that I was accepted intro the trail study use of the GA68 scan, my appointment was booked on December 28th and I believe the trials were ending on December 31, but don’t quote me on that. Now when you are booked for one of these scans they are very clear that it’s imperative that you arrive on time, as the radioactive isotope injected in you has a short shelf life once activated. The morning of my appointment I gave myself two hours to get there, even though it’s only an hour drive, but heading into Toronto you just never know what you’re getting into to. Thanks to the pandemic the drive was completely clear and I arrived extra early. Walking down University Ave in Toronto is a nice area, very busy, as I walked into The Princess Margret Hospital, I looked back across the way to see Sick Kids Hospital and it puts in all into prospective, there is a lot of very ill children and people behind all these walls and I even said a little prayer before pushing through the doors. Once inside the older exterior of the building doesn’t match the modern, updated feel of the hospital. Walking up the area I needed to be in this huge building I really had my eyes opened to the amount of very sick people there is dealing with different varieties of cancer, A real sense of despair can easily come over you.
I made it to office where I was admitted and given my hospital bracelet, on a side note I wish I had kept all my bracelets over the past year or so, they’d probably fill a small photo album. I was moved into hallway down by where the scans were completed, I sat across from an older man and I believe he was there for the same reason I was, I kick myself now for not striking up a conversation with him. After short wait, I saw I biohazard cooler go rolling by, inside was my isotope. The nurse came by and put in my IV to prep for the injection, I tell you it’s a weird feeling having something labeled nuclear medicine injected in you, considering less then a year ago I didn’t even know there was such a thing. After the injection I was moved to basically a closet to drink the barium solution and wait the hour needed for the isotope to circle the inside of my body.
After the hour had past a tech came to get me and lead me to the room with the Gallium 68 scan machine or PET/NET is another name for it. The machine itself is identical to the CAT scan machine. The whole process of the scan lasts a couple minutes, then you’re up and on your way out of the hospital.
The results were in two weeks later and it was my Oncologist from Hamilton that gave me a phone call to give me the update on my condition, now that they had the clearest view, I was driving at the time to Hamilton for the appointment, but there was a mix up and a phone appointment was on the docket today instead of an in person one, no biggie, less driving.. So I pulled over while he gave me the rundown, like I expected the cancer was in my liver, abdomen, lymph nodes in abdomen and a spot on my lung, all the same size since my CT scan three month earlier, so stable, a good thing. What I wasn’t expecting was that the cancer had been found in my bones now, middle of back and third rib down on right side. “Well that’s not good” was my response from me. He told me that the spots were small, little comfort to me, and that he figured they were there the whole time and the the prior scans hadn’t picked them up. I was to meet with my Brantford team in a week and we would go over what this meant and if any new treatment would be necessary…..
Pulling back on the road after news like that isn’t easy, trying to stay mentally tough since then still isn’t…..
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It can be a roller coaster ride but don’t doubt for a minute …You’ve got this! 🦓🤗
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