Canadians: treatment question

[triciah]

Have any of you Canadians out there had rfa for lung mets, microwave ablation, SBRT, or cyberknife?
The chair of our Gastrointestinal Tumour Group wrote to me (I wrote to them in Dec) and said that all these procedures were still experimental and not licensed for use. He said that there have not been enough clinical trials to approve them. I'm a little stunned.
Tricia (in Alberta)

[disco nap]

Does the letter specifically state that they wouldn't cover it?

The reason I ask is that in Ontario, they say the same of HIPEC yet they still cover it, even if it's performed in the States. We would have to travel there because so few surgeons in Canada can do the procedure.

The provinical health care systems are sometimes very mysterious: there are a lot of rules that aren't well-publicized so make sure to do careful research.

[Canadianmom]

Hi Tricia,
I haven't had any of those treatments but believe that there is cyberknife in Ottawa.
I'm in Calgary, where in Alberta are you? Last year I learned that two MDs at our cancer center were doing HIPEC before the big cancer centers in the US.
Have you heard of the laser lung surgery they can do in the UK and Germany?

[triciah]

I'm in Edmonton and they do HIPEC here and it's in the provincial guidelines.
I had checked into what's in the guidelines because a thoracic surgeon in the States said he could do rfa on my lung tumours. My onc here wouldn't do the application for out-of-country care because she said it wasn't medically necessary (they told me I had finished all standard treatments in Sept) and there weren't enough clinical trials done on these procedures. She said that there wasn't proof that doing the rfa was better than doing nothing! Now the head of the gastrointestinal tumour team has told me that these procedures are not licensed (even though I know rfa for lungs and cyberknife are available in Canada). Cyberknife is available in Ottawa, Hamilton and in Quebec.
So now I'm trying to find out if others have been told the same thing or if someone really has had something other than chemo.

[triciah]

I haven't heard of the laser lung surgery. Do you have details?

[weisssoccermom]

Eve in Vancouver (username vancouver eve - with the space in between the names) did have sbrt to her lung met on one side (not sure which one) and is talking about having it done on the other. Send her a PM. Not sure if she had any other treatments. Have you asked CRGuy??

[vancouver eve]

Cyperknife, RFA and sterotactic radiation are available in Canada. I had sterotactic radiation. There is also vats surgery.

I was reading an article in our local paper that stated that sterotactic radiation is as good as surgery. There is a trial in Holland, Vancouver and I can't recall the other center. I do know that apparently the article states that there has been some very good results. It sounds like you need a second opinion.

[Canadianmom]

Google Dr. Axel Rolle in Coswig Germany and Dr. George Ladas UK. They do laser lung surgery even if there are many mets.

[CRguy]

..... Have you asked CRGuy??

I had VATS (Minimally Invasive Surgery) and glad that vancouver eve has posted, because she has the most direct info and had the stereotactic option herself.

Just a note on Canadian health "authorities" calling things experimental and saying not enough evidence :
My experience is that if a facility doesn't have enough evidence in house, they will be very conservative and may be in the process of conducting their own mini-trial. Also, some procedures are designated as experimental by Health Canada whether they really are or not. If they haven't been, or cannot be integrated into the routine health care matrix across the board... HC has not yet "blessed" them as being standard. They will still be available, but you may have to do some pushing and digging to get them, as this topic is showing with the various "lung thingy" options. Part of it is having a more proactive and aggressive doctor to work with; someone who knows how, and is not reluctant, to navigate the Health care system.
JMO and experience dealing with local Cancer outpatient clinics and the BCCA "big house."

Cheers
CRguy

[IceGal]

Hi there!

Another thing to keep in mind is that approvals vary from province to province, so not only does a treatment have to be approved by Health Canada, it also has to be approved for coverage by that particular province.

As CRGuy mentioned, if you've got an aggressive onc, they can help you navigate the system to get the province to cover a treatment that is already approved in any other province. I haven't had to try this with AB Health yet, but a few years back I was able to get a monoclonal antibody for my late husband in MB when it wasn't approved there yet (but was covered in BC and ON).

I found that the trick to it was to find out where the treatment I wanted was covered and get their trial information to bring back to my onc. If yours is willing to work with you, they can take the abstracts (and contact info if you can get it) in for approval by the province.

You might also want to ask your onc if there are any trials recruiting with the treatments that you are interested in.

Good luck!

[CRguy]

triciah I didn't want to hijack your thread here, but the idea of sharing info on different treatment options across Canada is a very good one, so I started a "Calling all Colorectal CANUCKS" topic so we can exchange info from province to province, when we come across something to be shared, or ask a question, such as yours. Hopefully, keeping all the info in one place will make it easier to find when we need it.

Cheers
CRguy

[smokeyjoe]

Interesting thread....I'm in Ontario too, would be interested to know what is available out there. Seems all these different procedures are done all the time in the States.

[triciah]

Got to speak to an interventional radiologist on Friday (Hurrah!!)
He told me that, contrary to the head onc here, rfa for lungs is not experimental and is licenced by Health Canada and is done in many provinces. He also said that microwave ablation is not experimental and he thinks it's licenced but no one is doing it yet in Canada. Cyberknife was licenced by Health Canada in 2006 even before it was available here. It's now available in Ottawa, Hamilton and Montreal.
I'm in the middle of a fight with our provincial crc tumour team to recognize these procedures as valid treatment options.