Share this:
alvinw
@alvinw

Posts: 8
Joined: Oct 30, 2016

Lung Cancer - Improved Diagnosis and Prognosis

Posted by @alvinw, Oct 30, 2016

Two years ago, cancer was identified on a lobe of my left lung and the lobe was surgically removed. Now, a non-specific lesion has been identified on the remaining lobe of that lung (CT Scan). Is this new lesion likely to become malignant? The Mayo Clinic has developed a new analysis technique, based on CT Scans, for assessing the risk that one of these lesions will become malignant (the technique is referred to by the acronym “CANARY”). Supposedly, the new software that is the core of the CANARY technology is being commercialized by a firm called IMBIO. In the interest of getting the best possible diagnosis of my new lesion, I am interested in determining the availability of this new technology. However, attempts to contact the Mayo Clinic as well as IMBIO appear to have fallen upon deaf ears, as I have received no response after more than a month of inquiries at both institutions. If the CANARY technology is indeed now commercialized, why can’t I simply find out where, and under what terms, it’s available to cancer patients (including me)? I would appreciate a response and some appropriate guidance from a Mayo Clinic professional. Thanks.

REPLY

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

@colleenyoung

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

Jump to this post

Colleen, Thank you very much for the prompt and informative reply. To the extent that CANARY is still in the pilot phase, I’m curious about the nature and extent of the “piloting”. For example, does this piloting involve a protocol whereby many institutions are testing out the CANARY software in a prescribed manner, so that the results from all of these participating institutions can then be aggregated and analyzed? If so, can we be made aware of which institutions are participating, and of the anticipated time frame for developing a marketable product? If, on the other hand, the pilot phase is purely software-oriented (e.g., consists of tightening up the existing software logic, and making it more user-friendly), then perhaps we just have to wait until we’re notified that the software is ready for marketing. Any further insights in this regard, including anticipated (estimated) time frame to bring the product to market, would certainly be appreciated. In making this request, I’m assuming that IMBIO, as the firm which signed an agreement some time ago to commercialize this Mayo Clinic technology, has prepared and implemented a development plan.
Thanks again.

@colleenyoung

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

Jump to this post

Personally I find it frustrating when medical breakthroughs are touted in the news only to discover that the new drug or device is only being tested on mice and that wide-spread use in humans is years away and likely not a solution for people dealing with the condition now. Media reports are usually not very clear about this.
In fact, in 2014 there was a study published called “The media and cancer: education or entertainment? An ethnographic study of European cancer journalists” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3998657/

As you mentioned, it was 2013 when the agreement was brokered with IMBIO. I’ll do some further sleuthing, but initial internet searches return the same results you reported.

@colleenyoung

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

Jump to this post

Colleen, I will look forward to any further light which you are able cast on this situation. As I understand it, CANARY does not involve a new drug or a novel surgical procedure, but rather the use of math (statistical analysis) to better categorize lesions that appear on CT scans of human lungs, so that a more refined diagnosis (and prognosis) is achieved. To accomplish this, as I understand it, the Mayo Clinic team applied their new technique to CT scans of human lungs and carried out follow-up work so that they could correlate their diagnosis/prognosis, as generated by CANARY, with actual outcomes over subsequent years. Therefore, I don’t understand why commercialization of this technology (which consists of software), would need to undergo the various stages of testing, and the long periods of evaluation, that are required in the case of new drugs or invasive procedures, Thanks again. Alvin

In 2008 I was finally properly diagnosed and treated with non small cell lung cancer at Mayo Clinic. I had VATS surgery to remove a 3cm tumor and my upper left lung lobe along with a wedge in my lower lung lobe.
Here’s the kicker: I never smoked. Because I am athletic and neVer smoked
Local doctors had no clue I had lung cancer firc2 years! Some thought my choking cough was psychological.

My awesome support stove Mayo Doctors and their teams have taught me so much about Lung Cancer & Lung Health ! They watched a lung module for several years until it passed! whew!

I have follow up CTs each year and I love learning about the amazing advances with lung cancer diagnosis and many treatment options. So many positive changes for all lung cancer patients since 2008!

I have also become involved with several research studies at Mayo Clinic. I encourage everyone to reach out and ask about research study involvement. I learned how truly engaged researchers are to find a lung cancer cure. Being a part of these studies has given me support and hope!

In the Paced Breathing Research Study in 2008 lead by Dr Amit Sood, I became a new human being, taught me how to meditate with breath and understanding how healing it is to talk to my body about healing as I relax my nervous system, mind, body & spirit! I practice this meditation for 10 minutes each day and it helps keep my lungs healthy!

To often dealing with lung cancer we see, hear and feel the disabling unfair stigma for a disease ! This stigma I believe also unfairly affects desperately needed research funding! My life insurance was cancelled 5 years after my surgery. Statics said “I should be dead”! So to fight back
As a lung cancer patient who was diagnosed in time ! I ran a 5k race in 50 states from 2012-2014! & I hated running
But it made me breathe deep and I felt better physically and mentally.

I attended classes held by Dr Amit Sood and realized our care givers suffer the same stresses we as patients do. So my husband and I started WortmanLungCancerFoundation non profit
& Running Lungs Race Research Results Events to raise funds for lung researchers!

We have had opportunities to meet with NCI, NIH, ALA and share our lung cancer story. So keep asking questions and think about calling Dr Ping Yang secretary Amy Bennett to ask about a lung cancer research study program for you. Here I have learned about so many research opportunities like targeted therapies and more!

Let’s stay connected with this amazing Connect outreach! I know together we can make a difference in our quality of life and help save lives!

You deserve a hug! I commend your bravery in sharing your story! Thank you
Linda
WortmanLungCancerFoundation.org

@colleenyoung

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

Jump to this post

Hi Alvin!
I just replied to your story! Thanks for sharing.
I just had my 9 year follow up exam and CT, with a new CT scanner!
In the last 9 years of my lung cancer journey as a survivor
The research and advancements have been amazing and mentally healing as well!
Please read my 1st reply to you. I think it will give you help & hope.
I can somewhat understand your questions. I can assure you Mayo Teams will give us the best quality of life…one day at a time, right!
My 9 years post lung cancer have been the best of my life!
I just summited Mt Kilimanjaro with a Mayo Research Team!
So continue to reach out! Let’s stay connected and kick lung cancer out the door!
I commend your courage to share your questions and story.
Linda

Hi @alvinw, I was able to speak with Dr. Peikert who has been leading the development and research of the CANARY technology at Mayo Clinic. He explains:

“CANARY technology is used at Mayo Clinic, and Mayo Clinic patients have access to this type of testing when applicable to the patient. While the test has been thoroughly studied, included a number of validation studies, it has not yet been approved by the FDA. Thus it is used only at Mayo Clinic at this time.”

Alvin, should you wish to seek a consult at Mayo Clinic (if you are not already a patient here), please contact our Rochester campus at the contact number on this webpage http://mayocl.in/1mtmR63

Furthermore, we apologize that your earlier queries went unanswered and we would like to investigate how they fell through the cracks. I will send you a private message so you can share with me where you submitted your questions. We would like to ensure this doesn’t happen to anyone else. Please let me know if you have any other questions.

@colleenyoung

Hi @alvinw, I was able to speak with Dr. Peikert who has been leading the development and research of the CANARY technology at Mayo Clinic. He explains:

“CANARY technology is used at Mayo Clinic, and Mayo Clinic patients have access to this type of testing when applicable to the patient. While the test has been thoroughly studied, included a number of validation studies, it has not yet been approved by the FDA. Thus it is used only at Mayo Clinic at this time.”

Alvin, should you wish to seek a consult at Mayo Clinic (if you are not already a patient here), please contact our Rochester campus at the contact number on this webpage http://mayocl.in/1mtmR63

Furthermore, we apologize that your earlier queries went unanswered and we would like to investigate how they fell through the cracks. I will send you a private message so you can share with me where you submitted your questions. We would like to ensure this doesn’t happen to anyone else. Please let me know if you have any other questions.

Jump to this post

Colleen,
Open Sesame! Your efforts (very much appreciated, and very effective) have paid off. This morning, I received an email from Dr. Bartholmai of the Mayo Clinic, whose on-line technical paper initially spurred me to make this inquiry about new Mayo Clinic diagnostic technology for improved analysis of lung cancer CT scans. He apologized for the delay, indicated that I should expect to be contacted by IMBIO, the firm which will be commercializing the Mayo Clinic technology, and provided me with some further on-line leads in this area of technology which I will eagerly follow up. Shortly thereafter, I received an email from IMBIO, who confirmed that the Mayo Clinic’s CANARY diagnostic technology is not yet FDA approved, but that they were open to further discussions on the broader testing of that technology. At their suggestion, I hope to have further conversations with IMBIO in the very near future.
Thank you again for your interest and your help. And when it comes to offering thanks, I will be following this up in the next few days with an email to Linda in appreciation of her wonderful comments and encouragement.

Alvin

@colleenyoung

Hi @alvinw, I was able to speak with Dr. Peikert who has been leading the development and research of the CANARY technology at Mayo Clinic. He explains:

“CANARY technology is used at Mayo Clinic, and Mayo Clinic patients have access to this type of testing when applicable to the patient. While the test has been thoroughly studied, included a number of validation studies, it has not yet been approved by the FDA. Thus it is used only at Mayo Clinic at this time.”

Alvin, should you wish to seek a consult at Mayo Clinic (if you are not already a patient here), please contact our Rochester campus at the contact number on this webpage http://mayocl.in/1mtmR63

Furthermore, we apologize that your earlier queries went unanswered and we would like to investigate how they fell through the cracks. I will send you a private message so you can share with me where you submitted your questions. We would like to ensure this doesn’t happen to anyone else. Please let me know if you have any other questions.

Jump to this post

Fantastic Alvin. I hope you’ll keep us posted as your discussions continue and especially if you do the testing. I look forward to your ongoing participation on Connect as we grow the lung cancer group.

@colleenyoung

Hi @alvinw, I was able to speak with Dr. Peikert who has been leading the development and research of the CANARY technology at Mayo Clinic. He explains:

“CANARY technology is used at Mayo Clinic, and Mayo Clinic patients have access to this type of testing when applicable to the patient. While the test has been thoroughly studied, included a number of validation studies, it has not yet been approved by the FDA. Thus it is used only at Mayo Clinic at this time.”

Alvin, should you wish to seek a consult at Mayo Clinic (if you are not already a patient here), please contact our Rochester campus at the contact number on this webpage http://mayocl.in/1mtmR63

Furthermore, we apologize that your earlier queries went unanswered and we would like to investigate how they fell through the cracks. I will send you a private message so you can share with me where you submitted your questions. We would like to ensure this doesn’t happen to anyone else. Please let me know if you have any other questions.

Jump to this post

Colleen,
As an update to my previous comments, I had a very good telephone conversation today with the Chief Technology Officer of IMBIO. He was very knowledgeable, informative and generous with his time. It is now clear to me, based on the information he provided, that the CANARY technology, whose status I’ve been trying to clarify, is still under review by the FDA and is probably still a few years from being commercially available.

This really has addressed my concern. I had wanted to understand whether the CANARY technology was available, or was soon to be made available. As with any cancer patient, if it had been available and had already proved to be very prospective in enhancing the accuracy of long nodule diagnosis, I would have wanted to avail myself of it. But, as this is not yet the case, I believe I can feel assured that I’m not missing out on a medical opportunity. And while this technology is not available at this time, hopefully it will come to fruition in the not-too-distant future and will be of great value to those who can benefit from it.

I believe in “paying it forward”, Colleen. Therefore, first I will keep you apprised of any significant developments that I become aware of. Second, if you believe that I can be of some assistance, as a non-expert, in providing a measure of guidance to others based on my own investigations (again, achieved with your considerable help), I would be very pleased to do so. In this regard, although my question regarding CANARY’s availability has now been answered, I will nevertheless continue my research into the overall topic of lung nodule diagnosis and prognosis.

Best Regards,

Alvin

@colleenyoung

hi @alvinw. I can understand your frustration and am somewhat surprised that you haven’t received a response. From my understanding, CANARY is still in the pilot phase and not yet universally available.
For anyone else reading this, here is more information about the testing Alvin is referring to:
http://mayocl.in/2e6Gz3v and audio http://mayocl.in/2eNUlvV

Alvin, as you may know, Mayo Clinic Connect is an online community where patients can share experiences and ask each other questions about any health issue. I wonder if @llwortman has further information about CANARY.

Jump to this post

Linda,

Your story is amazing and inspiring! My family and friends regard me as one who is emotionally very strong (I also survived prostate cancer 15 years ago, and afterwards counselled a number of other men who were facing similar challenges). However, no matter how emotionally balanced a person may be, there is no doubt that learning of the life experiences of people, such as yourself, is a tonic and means a great deal to those of us who are coping with a good deal of uncertainty. As I proceed along this journey, there are many things to think about (and think over). And certainly, among those things, I will be mindful of, and inspired by, the considerable challenges which confronted you and the way in which you have met and continue to meet them.
Thanks so much again for the gift of your good words!

Alvin

@alvinw
Hi Alvin: we just returned home after being away for two weeks. I thought about your comments about post lung surgery pain. Have you noticed if limited activity makes your pain more noticeable?
Now, I’m getting g back into my daily exercise and breathing routine and acupuncture all which helps me physically & mentally? Your thoughts? Thanks.
Linda

@llwortman

@alvinw
Hi Alvin: we just returned home after being away for two weeks. I thought about your comments about post lung surgery pain. Have you noticed if limited activity makes your pain more noticeable?
Now, I’m getting g back into my daily exercise and breathing routine and acupuncture all which helps me physically & mentally? Your thoughts? Thanks.
Linda

Jump to this post

Hi Linda,You have me at a disadvantage. Although I had a lobectomy for lung cancer some 2 1/2 years ago, and have been an interested participant in the Mayo Clinic Connect group in the past, I have not been part of any recent conversations. Furthermore, when I did have my lobectomy, which was done using the VATS procedure, the pain was very minimal during my hospital stay and has been basically non-existent ever since. There is an area of my rib-cage that has some numbness, which is probably a permanent condition. But, fortunately for me, there is no pain. So I’m not sure whether you contacted me in error, or whether you have a record of something I’ve discussed within Connect in the past, but am now failing to recall.Alvin

@llwortman

@alvinw
Hi Alvin: we just returned home after being away for two weeks. I thought about your comments about post lung surgery pain. Have you noticed if limited activity makes your pain more noticeable?
Now, I’m getting g back into my daily exercise and breathing routine and acupuncture all which helps me physically & mentally? Your thoughts? Thanks.
Linda

Jump to this post

Dear Alvinw: Can you tell I’m a newby on Connect? I’ve been reading a lot of interesting cancer journeys and yours struck a nerve of understanding. It sound like you are doing well, if I may say so? I am always happy to hear about how surgeries have advanced along with all of the medical miracles often as a result of our brilliant Mayo doctors and their teams. Thank you fir your reply. The Lung Health and Lung Cancer site was just launched a few days ago, and I’m excited that people have a place to Connect. Perhaps you can check in time to time and share how & what you are doing.? You are an inspiration! Have a great evening. All my best,Linda 

Please login or register to post a reply.