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Hi there, hope everyone is surviving this winter blast.

I'm wondering if anybody has an experience in knowledge of and/or working with third party cancer advocacy groups. I had a meeting with one group, Cancer Treatment Options and Management (CTOAM.com) just curious if anyone has heard anything about them. There are 2 other companies I'm looking into BlueGuide (blueguide.ca) and Navexio (navexio.com).

In my conversation with the CTOAM they talked about the bind that stage IV puts doctors in with a limited amount of options they can offer to us. As they described it, once you're diagnosed at stage IV, there's "only so much" a doctor is actually able to offer you and that they are guided by provincial guidelines. These groups, as they describe themselves, get to the bottom of things using research, trials and technology in ways that our docs might not have available to them.

Appreciate any insights, experience or advice on this from our brave and courageous women.

Best, Jill 

@jbirch hello and thank you for your post. I do not have any experience in this area however am wondering if @GloHo might be aware of anything from her travels. 

Out of curiosity, how did you find these organizations? Were you referred through your medical team? I'm wondering what options CTOAM discussed with you that may be different than what your doctor offered and then how your doctor gets engaged. NOTE: that may be too personal to share so please don't if I've overstepped. My questions come from a place of learning and inquiry.

Thanks

#Treatmentandsideeffects 

@Alwayslearning

I did not look into third party organizations so do not have anything to add to the conversation.

@jbirch Thank you for sharing this information. I, also, am interested in hearing as much as you care to share as you explore these options.

Good luck as you navigate this process. 

Hi Always Learning, good to connect

I was chatting a couple of weeks ago with a neighbour and she mentioned these third party organizations that I'd never heard of. They are private organizations who help cancer patients navigate their treatment by providing extensive tumour testing and then identifying drugs, trials and tests etc.

I want to start by saying I'm receiving excellent care (stage 4B) but I'm platinum resistant, with a third recurrence in 2 years and now in weekly treatments until at least June (if I can keep still standing!). As it was explained to me, these organizations support your current team by doing research that they perhaps don't have time to do as well as providing extensive genetic testing to identify genetic mutations that oncologists may not know to target for treatment. They claim that in standard cancer agencies, patients are not offered thorough DNA panels, nor are they offered RNA or specific HER2 IHC to identify the benefit of an entire new subset of targeted therapies, called anti-body drug conjugates. They claim that patients who are able to benefit from this have "unprecedented complete response rates". 

They also claim that patients who are told they don't have "any markers for cancer", that this is physically impossible. Or if you're told "you're not a candidate for immune therapy" (which I was told) that it could be your doctor only tested for PD-1 status but there are apparently 13 known ways that cancer evades the immune system. 

Long story short, by testing your tumour(s) and performing other tests, their services are designed to provide personalized research to ensure they put together the most comprehensive review of the most current medical science pertaining to you. They then generate a treatment plan and educate you on your options. They provide all of this info for you to share with your oncologist. 

I'm still digging away on this, have 2 more organizations to interview. The one that I met was CTOAM (Cancer Treatment Options & Management Inc.). 

I'm curious what my colleagues think of all of this. It's especially important for those of us who have now been given a "poor prognosis" (which is what I have). 

Best wishes to all, Jill

Hi @jbirch and thank you so much for this detailed and very clearly written overview. I am glad to hear you continue to receive excellent care. That is always so important regardless of what part of the journey we are in.

The information you've provided is greatly appreciate by myself and I'm sure many other Teal Sisters who may not realize these types of resources exist. Out of curiosity, I did hop on the CTOAM website when you first posted. I guess the caveat for everyone is that these are, as Jill says, private third party organizations and I am thus assuming, you need to pay for their services (e.g., they aren't covered by our provincial health care plans). That's not a statement on whether they are good or bad. It's just a heads up. 

I appreciate the diligence you are doing in your investigation of these organizations. Good on you for doing that. Also, I appreciate your continued sharing of your learnings. I'm certainly curious as to whether their 'recommendations' are for treatments available within Canada and/or Canada and elsewhere. I'm also curious if any Teal Sisters in this forum have ever used their services.

Thank you again for sharing. If, as you continue to learn more, you are willing to share that would be so appreciated. Every day there remains so much to learn! It's why I love the Teal Warriors here so much. 🩵 

#Treatmentandsideeffects

Hi Brendalee

Thanks for your encouragement. I'm interviewing 2 more companies and will let you know what I find out. There's absolutely nothing to lose from getting these tests done but I do want to work collaboratively with my oncologist and get her views on them too before we proceed. I'd hope that she would see them as a help but not sure how doctors view these 3rd party organizations.