Navigating the Canadian System

Hello all. Firstly, thank you for the wealth of information and inspiration each of you provide through your contributions on this board. A very close loved-one (friend but chosen close family member) was diagnosed with Stage 4 prostate cancer (spread to regional lymph nodes) at the end of August following a hospitalization for what we first thought was kidney stones. His only symptoms were increased frequency of urination which started about one month prior to his diagnosis. Due to the frequency he requested a PSA test from his family doctor. When he went in with flank pain a CT was performed to find a kidney stone. Although no stone was found, they saw the enlarged lymph nodes and his PSA test came back at 60. He was diagnosed following a biospy few days later.
My friend is 69. His father died of prostate cancer and his sister had breast cancer and yet his family Dr “didn’t believe” in doing PSA testing; needless to say I’m furious.
One bright spot is that he was seeing Dr. Gleave at the Vancouver Prostate Centre. He was placed on two different ADT medications and the Dr was going to request permission to use another medication which isn’t covered by our medical system. He wasn’t scheduled to go see Dr Gleave again until a follow up appointment in December. He recently had another appointment with the B.C. Cancer Agency where they needed to get permission for another unapproved medication. There he found out that no one ordered a lung scan to rule out lung mets.
He heard from a coordinator Friday who informed him that no one has sent in a request for either special medication and that Dr Gleave will no longer treat him because the cancer spread outside of the prostate (which we knew before he saw Dr Gleave the first time).
My concern is that we feel like we have been falling through the cracks between Dr Gleave and the Cancer Agency. No one has requested the medication, no one has ordered the lung scan, no one is monitoring his PSA levels between August and December, no genetic testing has been done, we have no Gleason score. Is this normal protocol? I know things are different in Canada than the US but I expected more than this! I want to make sure my friend is given the best chance possible to extend his life (from what I understand a cure is out of reach now).

Thanks for any insight you can offer!

Canadian system is very different then the US when dealing with serious chronic diseases. As Trailguy says, in the US we can take much more charge and see different providers even if we choose to pay them out of pocket. Much different in Canada and each Province has its own system.

Belly Donna, I suggest you find patient advocates that know the system and how to navigate it effectively. I am sure they exist. Also see if there are any Canadian specific forums that can help. We have had a few Canadians on this forum and all had significant issues dealing with the system regarding delays, limited access to providers, drugs, etc. Hopefully some of them will see your post and come to the your rescue.

Regarding his treatment, do you know what drugs he is on? Has he had another PSA test? What are the results?

Bellydonna said...
Hello all. Firstly, thank you for the wealth of information and inspiration each of you provide through your contributions on this board. A very close loved-one (friend but chosen close family member) was diagnosed with Stage 4 prostate cancer (spread to regional lymph nodes) at the end of August following a hospitalization for what we first thought was kidney stones. His only symptoms were increased frequency of urination which started about one month prior to his diagnosis. Due to the frequency he requested a PSA test from his family doctor. When he went in with flank pain a CT was performed to find a kidney stone. Although no stone was found, they saw the enlarged lymph nodes and his PSA test came back at 60. He was diagnosed following a biospy few days later.
My friend is 69. His father died of prostate cancer and his sister had breast cancer and yet his family Dr “didn’t believe” in doing PSA testing; needless to say I’m furious.
One bright spot is that he was seeing Dr. Gleave at the Vancouver Prostate Centre. He was placed on two different ADT medications and the Dr was going to request permission to use another medication which isn’t covered by our medical system. He wasn’t scheduled to go see Dr Gleave again until a follow up appointment in December. He recently had another appointment with the B.C. Cancer Agency where they needed to get permission for another unapproved medication. There he found out that no one ordered a lung scan to rule out lung mets.
He heard from a coordinator Friday who informed him that no one has sent in a request for either special medication and that Dr Gleave will no longer treat him because the cancer spread outside of the prostate (which we knew before he saw Dr Gleave the first time).
My concern is that we feel like we have been falling through the cracks between Dr Gleave and the Cancer Agency. No one has requested the medication, no one has ordered the lung scan, no one is monitoring his PSA levels between August and December, no genetic testing has been done, we have no Gleason score. Is this normal protocol? I know things are different in Canada than the US but I expected more than this! I want to make sure my friend is given the best chance possible to extend his life (from what I understand a cure is out of reach now).

Thanks for any insight you can offer!

I am sorry to hear about your friend. I have been treated and still am being treated by the Canadian system. I am in Ontario, where I saw a Urologist who broke the news to me and started me on Lupron. She quickly when in a few weeks had me set up with a Medical Oncologist who also brought in a Radiation Dr. After a biopsy they came up with a treatment plan. What is the drug your friend is looking at cause in Ontario Zytiga is covered over the age of 65 or there are other ways around it if not.

Edit: I cannot give enough praise to my M.O. and his staff they where all top notch. I have moved to another city and have a new M.O. I feel I am still looked after extremely well. I see the Dr. ever month for my lab results.