Question for Canadians re genomic testing

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NeVadasMitis
Posts: 20
Joined: Thu Feb 02, 2017 3:34 pm

Question for Canadians re genomic testing

Postby NeVadasMitis » Tue Jan 02, 2018 5:18 pm

Hi there,
I was wondering what have been the experiences of my fellow Canadians when it comes to requesting and obtaining genomic testing to determine the specific characteristics of their cancer. We brought it up with the oncologist once at the beginning (when we were still hopeful that surgery would take care of the mets) and at that point he kind of blew it off as not necessary (despite the fact that he's a well-respected immuno researcher).
So question for Canadian patients: how and when have you obtained this testing? Was it only only upon request, or in response to a specific situation? Reading the posts of our friends to the south, it kind of sounds like it's done there at major cancer centres as a matter of course....wondering if we should start pushing, and if so what reaction we might get....dad's starting folfox + avastin next week...
Thanks
DD dx Dec.2012, age 57, Stage I CRC
2013/01 complicated resection
2016 summer/fall CEA slowing rising...(2.1, 2.8, 3.1)
2016/12 scan shows "something" on RL of liver; fna biopsy ordered
2017/01 confirmed 1 met to liver (1.5x2 cm); Stage IVa; cea 3.1
2017/02 5mm node on lung
2017/03 liver resection
2017/05 wedge resection of lung node
2017/09 CEA rising....5.6, 8.9...
2017/12 pet confirms cancer is back in hepatic lymph node

User avatar
CRguy
Posts: 9639
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question for Canadians re genomic testing

Postby CRguy » Tue Jan 02, 2018 7:35 pm

No personal experience with my own "tissues" so far ...... BUTT
we do have Canucks who have had it.

BCCA is using an Oncotype lab for some breast cancer patients ...
the POG program is an option if your Onc is willing to investigate and patients need it .... ?
there are private testing labs which are gearing up in the private sector ( as per the US situation )
and we would all be able to access these for a cost.

Harmony
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Achilles Torn
Posts: 109
Joined: Fri Dec 16, 2016 2:41 pm

Re: Question for Canadians re genomic testing

Postby Achilles Torn » Tue Jan 02, 2018 11:05 pm

NeVadasMitis wrote:Hi there,
I was wondering what have been the experiences of my fellow Canadians when it comes to requesting and obtaining genomic testing to determine the specific characteristics of their cancer. We brought it up with the oncologist once at the beginning (when we were still hopeful that surgery would take care of the mets) and at that point he kind of blew it off as not necessary (despite the fact that he's a well-respected immuno researcher).
So question for Canadian patients: how and when have you obtained this testing? Was it only only upon request, or in response to a specific situation? Reading the posts of our friends to the south, it kind of sounds like it's done there at major cancer centres as a matter of course....wondering if we should start pushing, and if so what reaction we might get....dad's starting folfox + avastin next week...
Thanks


From BC here so dealing with the BCCA as an un-resectable stage 4 patient. My own experience was that dmmr (MSS/MSI) status testing was only done on my tumour because of my circumstances and my diagnosing surgeon pushed for it. I requested further testing and they did their standard panel (which is essentially just for alterations that impact treatment options such as KRAS/NRAS/BRAF). When all this was negative - I pushed for a second opinion and that Oncologist was able to get me a (off protocol) Foundation One Panel for free (but this was only because he had a personal contact and used a favour) which identified the mutations in my signature.

In BC anyways they aren't that interested in anything outside what might impact their fairly narrow protocols....this is fine for up to Stage 3 - but for Stage 4 my advice is to get as much information on your cancer as possible.

Hope that helps.
AT
40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

mozart13
Posts: 140
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Question for Canadians re genomic testing

Postby mozart13 » Wed Jan 03, 2018 10:39 am

I was told by my surgeon that I automaticlly qualify for it since I am bellow 60, surgery didn’t happen, so no testing in my case.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

NeVadasMitis
Posts: 20
Joined: Thu Feb 02, 2017 3:34 pm

Re: Question for Canadians re genomic testing

Postby NeVadasMitis » Wed Jan 03, 2018 1:41 pm

Thank you for your responses. We're in Ontario. So it sounds like we'll have to fight for it. And if I understand correctly, we'll definitely need this knowledge for applying to clinical trials.
Hurry up, private sector testing labs!
Thanks again.
DD dx Dec.2012, age 57, Stage I CRC
2013/01 complicated resection
2016 summer/fall CEA slowing rising...(2.1, 2.8, 3.1)
2016/12 scan shows "something" on RL of liver; fna biopsy ordered
2017/01 confirmed 1 met to liver (1.5x2 cm); Stage IVa; cea 3.1
2017/02 5mm node on lung
2017/03 liver resection
2017/05 wedge resection of lung node
2017/09 CEA rising....5.6, 8.9...
2017/12 pet confirms cancer is back in hepatic lymph node

mozart13
Posts: 140
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Question for Canadians re genomic testing

Postby mozart13 » Wed Jan 03, 2018 2:40 pm

I am in Ontario as well, my understating is , that testing is offered automaticlly if under 60 years old.
For trials I would check Princes Margaret Hospital in Toronto.
There is scientist on UofT that discovered potential cure for lung cancer, it looks like they gona start trial soon, might be worth checking: the name is Igor Stagljar
http://www.telegraf.rs/english/2924509- ... r-is-ready
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)
I don’t come much to forum , so if this is not updated it means I remain negative!
Wish good luck to all!

henry123
Posts: 138
Joined: Sun Oct 08, 2017 3:25 am

Re: Question for Canadians re genomic testing

Postby henry123 » Thu Jan 04, 2018 3:08 am

NeVadasMitis wrote:Thank you for your responses. We're in Ontario. So it sounds like we'll have to fight for it. And if I understand correctly, we'll definitely need this knowledge for applying to clinical trials.
Hurry up, private sector testing labs!
Thanks again.


You should definitely get yourself tested for msi and Lynch even if you have to do it in an overseas lab or out of your own pocket.
I am sure that by now you would be aware that msi-high responds better to immunotherapy as compared to chemos .
In fact there is an opinion that chemotherapy can actually aggravate the situation in msi-high cases.
That certainly seems to be the outcome in my case.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

Dionca
Posts: 14
Joined: Sat Dec 02, 2017 2:04 am

Re: Question for Canadians re genomic testing

Postby Dionca » Thu Jan 04, 2018 5:52 am

Isn't testing for MSI, the standard in Ontario? The following is from my pathology report:

Histologic type
Histologic grade
Histolic features suggestive of Microsatellite Instability (MSI)
Intratumoral Lymphocytic Response
Peritumor Lymphocytic Response (Crohn-like response)

edited to add - In case it's not clear, I don't have all these things, it's just what they are required to test for.
Last edited by Dionca on Thu Jan 04, 2018 12:35 pm, edited 1 time in total.
May 2015 right hemi CC cecum
removed terminal ileum, illeocecal valve, appendix, cecum and ascending colon, omentum
stage 3b T3 N1b MX 2/27 nodes (isolated tumour cells in 1 additional node)
moderately differentiated
PNI - positive
LVI - positive
Folfox 12 sessions (oxi discontinued for 11 & 12)
Neulasta with 3-12 due to low WBC count
CEA at diagnosis 8.6 and after surgery 1.2
CEA during chemo 4.6 / 3.3 / 2.3
CEA after chemo 1.5 / 1.2 / 1.2 /1.2 /1.2 / 1.4 / 1.1 / 1.2 / 1.9 / 1.3 / 1.6

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

Re: Question for Canadians re genomic testing

Postby NHMike » Thu Jan 04, 2018 7:09 am

I'm not Canadian but my local hospital did the MSI-H testing using ImmunoHistoChemistry which is presumably less expensive and easier to do than a full Genomic Tumor workup.

One distinction that I like to make is that Genomic Tumor Testing to identify your Gene Mutation(s) is done on a tumor biopsy, while the MSI/MSS testing is done with a blood sample. If you want to get the Genomic Tumor Testing, then you would contact your testing service and sign a form giving them permission to request your biopsy block be sent to them from your hospital so that they can do the NextGen Sequencing and analysis on it. There also has to be enough material left in the biopsy block for them to work with.

I do not know how long pathology labs keep samples around so this is a consideration as well. Different hospitals may have different retention periods.

Some US high-volume centers have labs onsite. My biopsy was sent to the Mayo Clinic for IHC testing for MSI testing. Part of it was also sent to Mass General Hospital for Genomic Tumor Testing. I know for a fact that Mass General Hospital does Genomic Tumor Testing. A friend went to Dana Farber two years ago with Lung Cancer and he had the Genomic Tumor Testing done. I don't know whether or not DFCI does it onsite but they certainly have the volume of patients to justify the equipment and staffing to do so. It might be handy to have a list of places which provide this service in the future.

One last thing: Genetic Testing refers to testing your blood for your body characteristics. This is useful to determine if you have a condition which would predispose you to getting cancer. Genomic Testing or Genomic Tumor Testing refers to sequencing your tumor biopsy sample so that they know what your gene mutation(s) are. This can be useful for treatment or it can indicate that some treatments should be avoided. If the TIL therapy at NCI takes off, then I could see Genomic Testing becoming part of the standard of care. The testing that they did on me checks some 175 known mutations and also lists additional mutations that haven't been researched or catalogued. I can provide the format if anyone cares to see it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

Re: Question for Canadians re genomic testing

Postby NHMike » Thu Jan 04, 2018 7:30 am

Primer on genetic/genomic cancer testing. I received this link from Dana Farber this morning:

http://blog.dana-farber.org/insight/201 ... =spotlight

Cancer therapy is increasingly aimed at the fundamental abnormalities within cancer cells – the genes and proteins that normally keep cell division under control, but are damaged or faulty in tumor cells. To understand which genes are abnormal, where they’re located within the genome, and how they affect cell growth, doctors and scientists use a procedure called DNA sequencing.

BTW, the Genomic Testing done is more accurately called "whole exome sequencing" but I think that most people will understand what you mean from "Genomic Testing".

One other benefit to doing testing is that researchers have more data to do research projects on various kinds of cancer in terms of incidence and demographics.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

NeVadasMitis
Posts: 20
Joined: Thu Feb 02, 2017 3:34 pm

Re: Question for Canadians re genomic testing

Postby NeVadasMitis » Sun Jan 07, 2018 2:05 am

Thank you NHMike for this info! I had no idea of these distinctions. It's hard to advocate for your loved ones when you don't even know what questions to ask! As the original tumour was removed in 2012,I imagine the biopsy material is likely long gone, but, according to what you're saying, at least an MSS/MSI-high test could be done.

I wish all these tests had been presented as options from the start, even if we had to pay out of pocket. We are in a major city (not Toronto, but still with a cancer centre) and the onc is a researcher so I don't really get it. :? Cost, I guess?
DD dx Dec.2012, age 57, Stage I CRC
2013/01 complicated resection
2016 summer/fall CEA slowing rising...(2.1, 2.8, 3.1)
2016/12 scan shows "something" on RL of liver; fna biopsy ordered
2017/01 confirmed 1 met to liver (1.5x2 cm); Stage IVa; cea 3.1
2017/02 5mm node on lung
2017/03 liver resection
2017/05 wedge resection of lung node
2017/09 CEA rising....5.6, 8.9...
2017/12 pet confirms cancer is back in hepatic lymph node

NHMike
Posts: 1799
Joined: Fri Jul 21, 2017 3:43 am

Re: Question for Canadians re genomic testing

Postby NHMike » Sun Jan 07, 2018 7:46 am

NeVadasMitis wrote:Thank you NHMike for this info! I had no idea of these distinctions. It's hard to advocate for your loved ones when you don't even know what questions to ask! As the original tumour was removed in 2012,I imagine the biopsy material is likely long gone, but, according to what you're saying, at least an MSS/MSI-high test could be done.

I wish all these tests had been presented as options from the start, even if we had to pay out of pocket. We are in a major city (not Toronto, but still with a cancer centre) and the onc is a researcher so I don't really get it. :? Cost, I guess?


The testing may not have been that useful back in 2012. Remember that Keytruda and Opdivo were only approved in 2017 so they wouldn't have been generally known about and you'd have to be in a clinical trial before 2017 to get it if you were MSI-high. I believe that MSS/MSI testing is now part of the standard of care as I had the test without asking for it. It maybe a Stage 3 thing (not sure).

It's also unclear whether or not knowing your tumor mutation would help that much in the treatment of CRC. That has improved considerably in the last five or six years. It's somewhat of a chicken and egg thing: if you get the gene mutation, then you can generate statistics on what people have and figure out their likely prognosis by aggregating their data. But you have to collect the data on enough people so that the data becomes useful. I suspect that the insurance companies wouldn't pay for this as it was quite expensive back in 2012 and it wouldn't necessarily benefit CRC patients - but it would benefit research and, eventually, patients that got cancer many years later. It would also benefit drug and therapy development.

Today we have more targeted drug therapies for lung cancer as it is generally much harder to treat than colorectal cancer but you need to know what your gene mutation is to know whether or not a drug will work. So it may be that Genomic Testing is part of the standard of care for lung cancer. I don't know if that's the case but one of my coworkers got it, had the Genomic Testing and was given a drug, then later a second drug and he's still alive today. But he would have been dead a year ago without the Genomic testing that identified that a particular drug would work on him.

I asked my son whether or not NextGen Sequencing (the technology that allows testing of a large number of genes in the tumor at the same time) was available in 2012 and he said that it was. I then asked him for an estimate of what it would cost and he said $10,000 to $20,000. So it was far more costly than it is today.

I was diagnosed in June 2017 and I could not convince my oncologist to get the tumor testing so I imagine that the insurance companies (and the health boards in Canada) don't think that it's required for treatment for Stage 3.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
CRguy
Posts: 9639
Joined: Sun Feb 10, 2008 6:00 pm

Re: Question for Canadians re genomic testing

Postby CRguy » Sun Jan 07, 2018 1:12 pm

..... (and the health boards in Canada)

It seems all the provincial health systems have created a bit of a mosaic across Canada.
What you have access to, what they can access for you etc., depends as much upon how wired in your Onc team is and who they connect with and where they come from.
Another issue is that Health Canada will sometimes have overriding regulations and guidelines which affect access to treatments and diagnostics.
Personal, paid third party health insurance will have its own compendium of what is covered / not covered under any given group insurance package.
Finally, there is a culture of "not invented here" governing the delivery of some modalities at Cancer Centers' administrative levels. Again, who your doctors are and where they are "connected" can go a long way to overcoming some of the mentioned limitations.
I wish all these tests had been presented as options from the start, even if we had to pay out of pocket.

This is a very important and valid consideration which I encourage all patients to address with their Docs.
You may not need to leave the country for a given treatment BUTT your Doc may be able to assist you getting treatments which would not normally be available as first line of treatments.

Educate yourself and then your Docs about what IS the level of care you require ... AND keep pushing until you get it.

Best wishes all
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

DarknessEmbraced
Posts: 3156
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Question for Canadians re genomic testing

Postby DarknessEmbraced » Wed Jan 10, 2018 12:56 pm

I asked for oncotype testing and was told that it was only for breast cancer so it wasn't done. I was tested for Lynch Syndrome and MAP, both tests came back negative. I'm in New Brunswick.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

Stewsbetty
Posts: 135
Joined: Thu Jul 14, 2016 7:08 am

Re: Question for Canadians re genomic testing

Postby Stewsbetty » Thu Jan 11, 2018 7:28 am

I pushed to have my tumour tested for MSI status and it was done on the tumour sample, not a blood test. I also asked about mutations and that was done as a standard I think. I live in BC. I would enquire as to whether there are still samples of his tumour left. I wouldn’t be surprised if there were still. Being proactive asking for these tests saved my life. Chemo didn’t work for me and my cancer was spreading rapidly because I was MSI I pushed for immunotherapy off label. Since starting in September my tumours have shrunk dramatically. Best of luck in advocating for your dad.

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots


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