Calling ALL Colorectal CANUCKS !

[smokeyjoe]

CanadianGirl, I saw on your posting to Ashley that you're not on chemo??? And you're watching and waiting?? I hope I have this right, correct me if I'm completely out to lunch What are they watching with your scans. I have two "nodes" and a spot on my spleen they've been watching, 10 months of Folfiri and "stable disease". Took a three month break...spot on spleen showing calcification now....other two spots nothing, stable scan.....onc. says safe to go another three months as scans are "less worriesom" whatever that means.....next set of scans still stable...so now bumped to 4 months till next onc. visit. I'm just curious if your in the same situation I'm in. Onc. is not 100% sure those are cancer or not. How long can something that's cancerous sit there and be inactive when your not on chemo?? I have appt. 11th april with surgeon, suppose colonoscopy.

[Future_Med]

Hi Katrina,

Welcome to the best club that no one wants to join I do understand feeling over-whelmed. 3 weeks seems to be a normal length of time. I know with me, I met with my surgeon the first week of December, and his first opening for surgery was January 13th. He said colon cancer is slow growing, so that amount of time wouldn't make a difference. He did end up getting me in before Christmas (surgery Christmas Eve morning) but that was because he said if I was going to worry the whole holiday then he'd get me in before Christmas

In terms of words of wisdom. Keep yourself busy with family and friends as much as possible. It really helps to distract from the waiting. Also, I don't know what exact surgery you're having... but for me I was having my whole large intestine removed (along with the 1 cancerous polyp, I had 100s of polyps throughout my colon so it was the only option) and the doctors had warned me that there would be some foods I wouldn't be able to eat after surgery. So, I made a list of my favorite foods and my family and I worked through the list to make sure I got to enjoy them all one last time just in case I couldn't eat them anymore after surgery.

Also, know that it will take your body a while to get used to it's new situation after surgery. It can be discouraging, but don't lose hope. It took me a little over a year to reach my new "normal", and even now I think I'm still adjusting slightly.

Hope some of this will help, and know we're always here if you have any questions or just need to talk.

Aideen

Hi everyone,
I am a fellow Canuck who happened to stumble upon this forum. I have just been told I have a polyp that is malignant. So I am now going through the process of preparing for surgery, getting blood work & having a CT scan. I'm feeling a bit over-whelmed with a lot of the info that I have been reading & was wondering if anyone has any words of wisdom, advice, etc... I am scheduled to have my surgery in 3 weeks (is that a normal length of time?) & from there they will be able to tell what stage I'm at & what's the next step. I'm afraid that I'm not ask the right questions (or not enough). I guess I'm just looking for advice & suggestions from those who have been there. Any comments are welcome! Thank you!
Katrina

[triciah]

So I had 3 radiation treatments on 3 bone mets, finishing yesterday. It was a little rough at times but already my leg pain has really decreased.
My issue this time is that my onc has refused to give me Xeloda. She said she doesn't think it will help. I said I don't know how she can make that statement until we try it. She has my original onc backing her up on this so I can''t do a thing about it. I don't get it, I'm pretty sure it's still covered for me. I thought maybe the Xeloda would help keep the bone mets at bay for a little longer. They say it won't help because when I was on 5FU during my original radiation 2 years ago, my lung mets showed up a few months later. I didn't progress while on FolFox + Avastin, went off due to side effects.
Anyway, another probelm with being in Canada, can't get another opinion that's different.

Tricia

[IceGal]

Hi Tricia!

I'm wondering why your onc isn't looking at either FOLFIRI or XELIRI, since they are considered standard second line treatment. I can see them thinking that just the Xeloda might not be enough, but it looks from your sig line that you haven't had any treatment with iri in it yet.

I'd definitely be asking them to not just give you their best recommendations, but for statistical support for their rejections of your suggestions.

Sending you strongest thoughts,
Laurie

[triciah]

Yes, I did have irinotecan in March 2011 and June 2011 (a break due to a trip). I had progression in July 2011 so I was taken off the iri.

Tricia

[triciah]

It's a good suggestion to ask them for statistics to back them up. I'll think I'll do it.
Tricia

[westie68]

Hi Tricia: I understand your problem. I am having similar problems as I have mets to the peritoneum and to the liver. I had to pay for my oxaliplatin + irenotecan + 5FU chemo even though I can't afford it. I start again next week (been off since Nov 4 saving money!). Not sure what will happen if things don't stabilize as they did before. Raise a stink, go to the press, do what you have to. Although there is always the fear of rocking the boat too much and you are out of the boat! Are you in Ontario like I am?
Cheryl

[triciah]

No, I'm in Alberta so Xeloda is paid for. I did send off an email asking for statistical support so we'll see what that gets me.

Tricia

[westie68]

Hi Tricia: Ah, my home province (I'm from Calgary originally and planned to retire there but cancer reared its so ugly face ...). Another thought. You can actually get another opinion - but make sure you do that out of wherever your city is (Edmonton?). Some private insurance plans cover second opinions in other provinces and even from the US (called BEST something or rather). I was told that getting a second opinion from your home hospital or even home city and possibly province is too incestuous. It might even be worth paying for it.
Cheryl

[CRguy]

..... (called BEST something or rather).

I think tammylayne once had a referral through "Best Doctors" bestdoctorscanada.. it is offered as a part of some private health insurance plans (I've never seen it in the publicly funded government health care benefits) and it was recently mentioned to me from an insurance agent I was discussing private health care and travel medical insurance with. Check with tammylayne for more info.

Cheers all
CRguy

[tammylayne]

Yes...it was me.

Best Doctors can either be purchased as a stand alone product, or is sometimes offered as a bonus product/service attached to an individually owned health care product - usually a Critical Illness Insurance.

It is awesome...I got a second opinion on my treatment plan from a top notch oncologist in the States. They gather up all my history....I did nothing by grant permission.

The down side of this is you have to own it BEFORE you need it...kind of like life insurance. You can't get it once you have been diagnosed with cancer.

What I do encourage people to do though is look at it for OTHER possible illnesses ( heart failure, burns, stroke, brain injury etc etc etc...)....and for your family (who would be covered for cancer if they have never had it). I believe the stand alone coverage is $100 a year, for family coverage. A pretty sweet deal....my second opinion would have cost me thousands. They also redo the pathology of the tumour....which in my opinion is always a great thing. They also use only top facilities to do this. As for the doctors they use...they have been voted on by their peers...so they ask doctors WHO WOULD YOU GO TO FOR THIS PROBLEM??? I think that says alot. I think they are all Harvard educated as well.

We have used this service twice...once for me and once for my husband....and we were very impressed with the 20 page document we received, plus the follow up calls from a Canadian doctor that over sees the case.

I now it can't help anyone with what you are going through right now, and that is unfortunate....but it might be worth it for future medical situations.

And no, I do not work for Best Doctors...just a happy customer!

[westie68]

HI: That's too bad. So, then, how does one get a second opinion in Canada that is really an unbiased second opinion? Any ideas out there?
Cheryl

[tammylayne]

The Best Doctor's Consultant told me to go to one of my other team docs that was not the oncologist...either my family doc or even my surgeon. Most of them have connections at other facilities outside of where you live. And someone please corect me if I am wrong, but I don't think you can be turned down when asking for a second opinion...yes?

It would be worth a shot. I don't think you would have to go out of province....but most certainly out of your city...or at least that is what was recommended to me. You are more likely to get an unbiased opinion from a doctor that doesn't go to the Christmas party with your current oncologist. I know in the perfect world this wouldn't happen....but for me personally...have not yet found that perfect world....

Good luck to all looking...

[nicola smith]

Hi all, I came across this study conducted in 2011 but only published in Feb 2012 (I would have seen it sooner but was out of the country). For me, it answers a lot of the WTF questions I have had related to the arbitrary use of PET scans as a diagnostic tool in Ontario. It contains a lot of good info that helps understand the various routes for getting access to this tool in each province.

As we all know, each province's health system operates separately and often very differently. PET access is a case in point. This study describes the situation with respect to the use of PET scanners across Canada. The chapter in Ontario is particularly disturbing. Ontario has more PET scanners than other provinces but it performs far fewer PET scans relative to population size than other provinces. This is because Ontario has an access protocol that is extremely limiting, appears to be out-of-step with practice elsewhere (except for Australia), and is a source of some tension between oncologists and practitioners of nuclear medicine. This is fascinating to me as I have been pushing for a PET scan since my initial diagnosis since 2009 and stonewalled until now (thank you mystery lung nodules). I caveat that the report has been written for Triumf-AAPS, a BC-based nuclear research centre that partners with area universities to identify and commercialize nuclear medicine applications. CR Guy may know more about this outfit. Nevertheless, the report is full of good information and I hope fellow Canucks find it useful.
http://www.triumf.ca/sites/default/files/TRIUMF-AAPS-Martinuk-PET-Across-Canada-REPORT.pdf

press release Here
powerpoint slides by same author

[CRguy]

Thanks nicola smith for the info. I am just going to look at it but had a problem with the contracted link in your post...
I added what I think is the paper you refer to, and a couple of pages, if that is NOT it please PM me or post here and we will get the right one up !

I know a bit about these folks, as my alma mater is one of the Tri University Meson Facility participants, and the UBC site was the actual producer and daily deliverer of the isotope tagged glucose used at the BCCA for its PET scans. Part of the overload in BC is due to the fact that TRIUMF also produces all the isotope for the private clinic scanners and therefore their ability to service any overload is restricted. When I was seeking my first PET scan to diagnose my Lung Thang in 2009 - 2010, a private facility was re-locating. I am not sure if they are able to source isotopes externally ????? I believe the provincial regulators used to require sourcing from the TRIUMF approved reactor. The private clinic is now in the process of getting its own cyclotron.
The BCCA now has its own, on site cyclotron producing an internal source of isotope for PET scans.

I have not found reluctance to do PET scans at BCCA. My mother ( now 8+ years BC survivor ) was in a pro-active study to compare PET scans with sentinel node biopsy for breast cancer diagnosis and treatments.

Cheers
CRguy