+ Reply
Log in or Register to participate in these discussions
Pushing against walls for clear diagnosis & worried about cancer care in Ontario
sarc0
4 Posts

How do you get plugged into to timely diagnosis and, if necessary, treatment in Ontario? Any helpful advice welcome!

I feel like I'm pushing against walls. It has only been because I have insisted to my family doctor that something is wrong that I've gotten a series of tests. Symptoms started in February; now it's November.

A specialist I see for sarcoidosis in Toronto told me “nothing to worry about" on CT Scan. I drove to the US to get a second opinion as the wait would have been 4 to 5 months to see another specialist in Ontario. The US doctor firmly stated that there are concerning lymph nodes near my pancreas which need PET scan and possible biopsy, as this is possibly lymphoma (but not pancreatic cancer).

Now the PET scan has to be approved by a radiologist who's never examined me and then by CCO. More uncertainty, more waiting. Weeks have turned into many months.

8 Replies
Boby1511
720 Posts

@sarc0

hi there,

I don't know how these things get pushed along. I can tell you from experience that those PETs are hard to get approved in Ontario as they cost more and the material used does not get housed at all hospitals. My hospital in Northern Ontario has to get this material from down south. There is a certain criteria used and if you don't meet this list than your doctor has to fill out several pages of referral for consideration. Its quite a bit of paperwork for the doctors, which is my guess why they are less recommended. They are just putting mine up.

Sending you best wishes as you move along in diagnosis.

Whitelilies
1667 Posts

@sarc0 Hello and welcome to our caring community……I am sorry to hear of your lengthy “insistence” for tests, and then some.

I am in Ontario too; but not sure I have any “answers” for you….CCO (Cancer Care Ontario) I believe, follows rules, regulations and guidelines. (ie for colon cancer….they will only test CEA bloodwork, every 6 months)……

Sometimes, self advocacy is best……getting a wonderful/skilled Dr-Oncologist helps too…..and timing and luck may “play” into things.

It is challenging….to say the least.

Regards

Whitelilies

ACH2015
2192 Posts

@sarc0

Good for you for pushing for testing. The PET scan will show any possible cancer or other issues - as well as what may be forming (and not yet solid masses) within your body.

Like you, I had to push limits for testing, and fought and won against CCO for PET scans they said did not meet the funding criteria. So the surgeon that needed the PET scan got her required information for correct diagnosis and correct treatment plan.

Let us know what you discover as you move forward.

Keep Well

ACH2015

sarc0
4 Posts

To @Boby1511 : Thank you for your perspective. I'm glad to hear that it seems you will be scheduled soon.

sarc0
4 Posts

To @Whitelilies I really appreciate your reply, especially regarding the need to get a good oncologist. Someone at the CCS told me that your generally don't get seen by an oncologist until you've been diagnosed with cancer, yet it seems that oncologist's are the doctors who normally order PET scans. This sounds like a Catch-22.

It seems to me that if serious indications exist that someone has cancer, it only makes sense that an oncologist be brought in at that point to help facilitate and make the best determination & diagnosis possible.

sarc0
4 Posts

To ACH2015: It makes me sick to my stomach that you had to fight CCO on this. If a medical doctor in Ontario requests a PET scan based on clinical evidence, there shouldn't be a bureaucracy able to deny the doctor's reasonable request. I'm sensing this all has to do with the lack of and adequate number of PET scan machines – not on the often touted principle of “evidence-based medicine," especially because PET scans are a way to get the necessary evidence!

ACH2015
2192 Posts

@sarc0 - to tag a member, type the @sign and start typing the members name, and click on the member you want to tag. I just happened to open the site and see your post.

Lack of PET scanners is part of it. Money is the other part, so Ontario does the least number of scans they have to. Fighting for what is right is what I do, and hopefully make it easier on others to get their needs met.

Like I told CCO, my surgeon does not have time to be a lawyer for their patients. She is busy enough! And they figured I was not going away. And they were right.

Keep well

ACH2015

@sarc0

I'm glad you reached out to our community here for support.

For additional information and tips on navigating this situation you can give our Cancer Information Helpline a call at 1-888-939-3333.

I hope this helps,

Lacey

+ Reply