Tumor Testing

LadyMox

 

While this was mentioned in an earlier thread, I wanted to make this it's own topic. In case anyone reading this don't know I am on the chemo/surgery/chemo route and I am on my third chemo this Thursday for a diagnosed Stage 4B Endometrial cancer and at last check had a 5x5x4inch tumor near my ovary in my pelvis, I am hoping it's smaller now. I am hoping then I can get scanned and move towards surgery in the coming weeks since my CA-125 numbers took a nosedive after the first chemo and I hope that keeps up.

What kind of testing should I be asking for? I was told in the other thread a Tumor Assay, any helpful links of tumor assays on what they do? Are there other tests I should be asking for? Are there tests to see what chemo/drugs my cancer might be receptive to? What kind of tests would I need to see if I might be eligible for Immunotherapy should this bugger come back or stops cooperating with the current treatment protocol etc. I assume once it’s all said and done I should ask for the pathology report.

 

 

MAbound

Tumor Assay

The tumor assay you would be looking for tests for tumor cell sensitivity and resistence. Most doctors just start with the standard treatment like Carbo and Taxol, but as Der Maus can attest, that doesn't always work and finding out after you've had months of infusions of something that doesn't work is heartbreaking. The information would also be helpful in the event of reoccurence so that drugs you might be resistent to wouldn't be used. It sounds like the chemo you've been recieving has been helpful for you, so your doctor may or may not be amenable to doing this test. Like genetic testing, it would be another tool in his chest for treating you and it's something you needed to be aware of to consider before your surgery. Most of us never had the opportunity to become aware of this option before we had our surgeries and going on chemo.

The genetic testing would help identify characteristics that would help identify if you would be a canidate for immunotherapy. It could also tell you if you have Lynch Syndrome, which might explain why you got this cancer at such a young age and alert you that you are also at much higher risk for other cancers, especially colon, and need to have screening for it more frequently and at an earlier age. And yes, you can still get other cancers at the same time as this one or in the future. What else you find out depends on what one gets tested for. The more that gets tested, the higher the cost, so you can prioritize what to test for and what to omit to fit your pocketbook if insurance won't help.

LadyMox

Lynch

I would not be surpised if I had Lynch now that you mention it, my Mom had a small bout with colon cancer when she was in her 60s (she is still kicking though and in her 70s) and my Sister got Uterine cancer at about my age about 3 years ago and she is 4 years older then me. Main difference is hers was caught in her pap smear unlike mine, and they got to her at stage 1 (I falsely assumed mine would be caught too in the Pap smear if it ever cropped up, and I didn't push for more testing since I felt fine until it was too late). They just treated her with just surgery.  So far so good for her and she is going to her 3rd year checkup this week.

SF73

Genomic Profiling of Your Tumor

After getting the genetic testing to see if you have Lynch, I would recommend you getting a genomics profiling of your tumor to see if you have microsatellite instabilkty in your cancer cells. Genetic testing only checks germline mutations (the mutations you were born with, genomic profiling lets you know all the somatic mutations (acquired changes due to lifestyle, exposure to environment elements and pure bad luck) If you happen to have MSI-H (likely due to your family history) or POLE variants you can qualify for some new and promising therapies. Genetic testing can be done at your hospital, if your hospital does not offer genomic profiling then you can use Foundation One.

Best of luck with your treatments. We are all rooting for you!

derMaus

 Tumor Testing & Microsatellite Instability

Depending on your hospital's surgical protocols, they may do tumor testing as part of your initial pathology report. Mine did, in November 2016, and my tumor was flagged MSI-H, or microsatellite instability high. There was some other basic testing included in the report, but that was the most important one.  Because of that, I was referred for genetic counseling and discovered to have Lynch syndrome. What's tricky is that nobody in my family meets the diagnostic criteria for Lynch (Amsterdam scale); mine was a spontaneous genetic mutation. I have no children so there's no chance I could pass it on, but now others in my family are looking into getting tested. 

Knowing if you have Lynch is useful in monitoring for future cancers. Tumor testing is useful for treating the cancer you have now. Medicare policy recently changed and they agreed to pay for genetic tumor testing, e.g. Foundation one. That's important as it legitimizes such claims for insurance purposes, although you may still have to fight to have yours paid. I did. Here's the notification:

nca-decision-memo.aspx

Also, the American Society of Clinical Oncologists has recommended testing all MSI-H patients for Lynch syndrome. Here's their position paper from June 2018; it, also, may help with insurance justification if needed.

https://am.asco.org/msi-h-status-may-predict-lynch-syndrome-across-varied-tumor-types

 

CheeseQueen57

derMaus said:

 Tumor Testing & Microsatellite Instability

Depending on your hospital's surgical protocols, they may do tumor testing as part of your initial pathology report. Mine did, in November 2016, and my tumor was flagged MSI-H, or microsatellite instability high. There was some other basic testing included in the report, but that was the most important one.  Because of that, I was referred for genetic counseling and discovered to have Lynch syndrome. What's tricky is that nobody in my family meets the diagnostic criteria for Lynch (Amsterdam scale); mine was a spontaneous genetic mutation. I have no children so there's no chance I could pass it on, but now others in my family are looking into getting tested. 

Knowing if you have Lynch is useful in monitoring for future cancers. Tumor testing is useful for treating the cancer you have now. Medicare policy recently changed and they agreed to pay for genetic tumor testing, e.g. Foundation one. That's important as it legitimizes such claims for insurance purposes, although you may still have to fight to have yours paid. I did. Here's the notification:

nca-decision-memo.aspx

Also, the American Society of Clinical Oncologists has recommended testing all MSI-H patients for Lynch syndrome. Here's their position paper from June 2018; it, also, may help with insurance justification if needed.

https://am.asco.org/msi-h-status-may-predict-lynch-syndrome-across-varied-tumor-types

 

Foundation One

Been fighting Aetna for a year to get my genomic testing paid. Currently in External Review stage. Hopefully they will come to their senses. 

linmk

Genomic Testing

At MD Anderson, genomic testing is done only after a recurrence. I had it done. I am MSI-Stable.  MSI-Instability is rare. Please keep that in mind.

SF73

It is actually not that rare.

It is actually not that rare. 16% of endometiral cancer patients have MSI-H. Another 7-10% have POLE variant. You may have both. There is a paper that shows having POLE variants are equally likely among MSI-H and MSI-S patients. In our world these are not small numbers. So I would definitely go for the test but wont be disappointed if nothing actionable comes out of it because the scientists have just started uncovering the molecular landscape of endometrial cancer. An insight that is not actionable today might be actionable in next year. The more data the better. 

bluehyacinth

I agree get foundation one

I agree get foundation one genomic testing if you can afford it in case insurance does not cover and I also agree MSI-H is not that uncommon. I did not pay for the testing but happily would have had I known about it when diagnosed.  I am MSI-H and also had a bunch of other mutations though not POLE. I have been on Keytruda for over 2 years. Never responded to chemo and rads, was stage 3CII when diagnosed (UPSC) got mets while on chemo, had lots of lymph and vascular invasion. I would have died for sure in 2016 were it not for Keytruda so I am happy to put up with the side effects (on levothyroxin due to it).

Also everyone here says don’t use google I say the opposite. I used google from the start as new nothing about endo cancer and still use it all the time as that is how I gain knowledge. If you need emotional support this forum is good, but for knowledge google really is great, but that is me, I need to be informed. Who cares what the statistics say, but it should not hurt to read them if you understand what you read. Statistics are of course using historic data and there is so much new stuff happening. Keytruda will be outdated before long and  better stuff be will be available round the corner because tons of money can be made if you beat current therapies. Good luck. Stay informed, make sure you have an aggressive medical team.

linmk

bluehyacinth said:

I agree get foundation one

I agree get foundation one genomic testing if you can afford it in case insurance does not cover and I also agree MSI-H is not that uncommon. I did not pay for the testing but happily would have had I known about it when diagnosed.  I am MSI-H and also had a bunch of other mutations though not POLE. I have been on Keytruda for over 2 years. Never responded to chemo and rads, was stage 3CII when diagnosed (UPSC) got mets while on chemo, had lots of lymph and vascular invasion. I would have died for sure in 2016 were it not for Keytruda so I am happy to put up with the side effects (on levothyroxin due to it).

Also everyone here says don’t use google I say the opposite. I used google from the start as new nothing about endo cancer and still use it all the time as that is how I gain knowledge. If you need emotional support this forum is good, but for knowledge google really is great, but that is me, I need to be informed. Who cares what the statistics say, but it should not hurt to read them if you understand what you read. Statistics are of course using historic data and there is so much new stuff happening. Keytruda will be outdated before long and  better stuff be will be available round the corner because tons of money can be made if you beat current therapies. Good luck. Stay informed, make sure you have an aggressive medical team.

Thanks for correction

I think that everyone should have their genome tested. Foundation One does have a program for those who have low incomes. 16-17% is not that low considering that we're dealing with cancer and trying to outwit it. bluehyacinth I Google too, but like you I take it all with a few grains of salt.

pato58

bluehyacinth said:

I agree get foundation one

I agree get foundation one genomic testing if you can afford it in case insurance does not cover and I also agree MSI-H is not that uncommon. I did not pay for the testing but happily would have had I known about it when diagnosed.  I am MSI-H and also had a bunch of other mutations though not POLE. I have been on Keytruda for over 2 years. Never responded to chemo and rads, was stage 3CII when diagnosed (UPSC) got mets while on chemo, had lots of lymph and vascular invasion. I would have died for sure in 2016 were it not for Keytruda so I am happy to put up with the side effects (on levothyroxin due to it).

Also everyone here says don’t use google I say the opposite. I used google from the start as new nothing about endo cancer and still use it all the time as that is how I gain knowledge. If you need emotional support this forum is good, but for knowledge google really is great, but that is me, I need to be informed. Who cares what the statistics say, but it should not hurt to read them if you understand what you read. Statistics are of course using historic data and there is so much new stuff happening. Keytruda will be outdated before long and  better stuff be will be available round the corner because tons of money can be made if you beat current therapies. Good luck. Stay informed, make sure you have an aggressive medical team.

blue

I agree with you about Google information besides this forum
My Dr is great but if I had to rely on him for extended information, I would be lost and more scared 

NoTimeForCancer

LadyMox, please know that

LadyMox, please know that there are many of us out here thinking of you.  Hope you are doing ok.  Hugs dear one.

BluebirdOne

NoTimeForCancer said:

LadyMox, please know that

LadyMox, please know that there are many of us out here thinking of you.  Hope you are doing ok.  Hugs dear one.

LadyMox

We are all thinking about you and rooting for you. Miss your photo with your fabulous curly hair and great smile. 

 

Denise