1. < Gynecologic Cancers
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Has anyone had Signatera testing (genetics-based cancer test)?

Posted by amywells @amywells, Jun 16 11:24am

I'm wondering if anyone here has heard of or had Signaterra testing? I just learned about it from a neighbor who works for the company that developed it. I have Stage 3b ovarian cancer and apparently that's one of the indications for having the testing done. It sounds like a good thing to do but I've never heard about it before and that makes me wonder....
Thanks for any information!

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laseifer | @laseifer | Jun 20 8:12pm
In reply to @pissedoffmark "Can you share the location of the lymph node and how it was surgically removed? My..." + (show)
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Can you share the location of the lymph node and how it was surgically removed?
My wife had 2 peritoneal lymph nodes infected and told Not surgically removable.
Any details appreciated.
Ovarian cancer 3A in 2020.
Mark Edwards

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The node was in left groin area. It was done at UCSF using robotic surgery and I was able to go home the same day. Peritoneal nodes may not be subject to this kind of intervention.
Hope this helps.
Rainy Seifer

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pissedoffmark | @pissedoffmark | Jun 21 9:07am
In reply to @laseifer "The node was in left groin area. It was done at UCSF using robotic surgery and..." + (show)
Profile picture for laseifer @laseifer

The node was in left groin area. It was done at UCSF using robotic surgery and I was able to go home the same day. Peritoneal nodes may not be subject to this kind of intervention.
Hope this helps.
Rainy Seifer

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Thank you. Wife's are peritoneal beh I ND the kidneys and very difficult to remove. Treated via multiple chemo and radiation. Now on Keytruda. 3rd round. Been at it for 5 plus years. Coupled with severe spinal stenosis and gastric issues.
Pain management is major issue along with recurring ureter stent replacements. How was your experience with UCSF?
Thanks for sharing. Tough enemy.

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laseifer | @laseifer | Jun 21 4:09pm
In reply to @pissedoffmark "Thank you. Wife's are peritoneal beh I ND the kidneys and very difficult to remove. Treated..." + (show)
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Thank you. Wife's are peritoneal beh I ND the kidneys and very difficult to remove. Treated via multiple chemo and radiation. Now on Keytruda. 3rd round. Been at it for 5 plus years. Coupled with severe spinal stenosis and gastric issues.
Pain management is major issue along with recurring ureter stent replacements. How was your experience with UCSF?
Thanks for sharing. Tough enemy.

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Top notch care but not above seeking consults at other major centers if nieed be.
You just can't let it win!

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catsanddogs2025 | @catsanddogs2025 | Aug 27 8:56am

Regarding Signatera testing, it is a good test yet need to be very concerned about the home draw. They hire phlebotomists who use their PERSONAL CELL phone to take photos of your filled blood vials, paperwork which has your name, address, CA diagnosis listed, doctor's name, all of your HIPPA protected PHI (Personal Health Information). The photos are not secure or protected.
The concerns are:
1) Who else & what apps have access to their PERSONAL CELL photo files?
2) How are the photos transmitted to Signatera, what platform is used, if it is SMS it may not be end-to-end encrypted.
3) The photos of your HIPPA protected PHI remains forever on their personal cell phone.
If the draw is done at an MD or hospital no photos are taken and the patient can take the package to FedEx themselves or the MD/hospital uses their FedEx pick-up.
The question is why are home draws subjected to separate rules, why aren't their phlebotomists trusted with taking the draw without photos? I have asked these questions and after multiple emails cannot get a clear answer from Natera - Signatera. Please ask these questions of Signatera and PLEASE join me in objecting to photos being taken with personal cell phones. Thank you.

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2 replies
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amywells | @amywells | Aug 27 10:47am
In reply to @catsanddogs2025 "Regarding Signatera testing, it is a good test yet need to be very concerned about the..." + (show)
Profile picture for catsanddogs2025 @catsanddogs2025

Regarding Signatera testing, it is a good test yet need to be very concerned about the home draw. They hire phlebotomists who use their PERSONAL CELL phone to take photos of your filled blood vials, paperwork which has your name, address, CA diagnosis listed, doctor's name, all of your HIPPA protected PHI (Personal Health Information). The photos are not secure or protected.
The concerns are:
1) Who else & what apps have access to their PERSONAL CELL photo files?
2) How are the photos transmitted to Signatera, what platform is used, if it is SMS it may not be end-to-end encrypted.
3) The photos of your HIPPA protected PHI remains forever on their personal cell phone.
If the draw is done at an MD or hospital no photos are taken and the patient can take the package to FedEx themselves or the MD/hospital uses their FedEx pick-up.
The question is why are home draws subjected to separate rules, why aren't their phlebotomists trusted with taking the draw without photos? I have asked these questions and after multiple emails cannot get a clear answer from Natera - Signatera. Please ask these questions of Signatera and PLEASE join me in objecting to photos being taken with personal cell phones. Thank you.

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Thanks for that very useful information!

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Colleen Young, Connect Director | @colleenyoung | Aug 27 11:19am
In reply to @catsanddogs2025 "Regarding Signatera testing, it is a good test yet need to be very concerned about the..." + (show)
Profile picture for catsanddogs2025 @catsanddogs2025

Regarding Signatera testing, it is a good test yet need to be very concerned about the home draw. They hire phlebotomists who use their PERSONAL CELL phone to take photos of your filled blood vials, paperwork which has your name, address, CA diagnosis listed, doctor's name, all of your HIPPA protected PHI (Personal Health Information). The photos are not secure or protected.
The concerns are:
1) Who else & what apps have access to their PERSONAL CELL photo files?
2) How are the photos transmitted to Signatera, what platform is used, if it is SMS it may not be end-to-end encrypted.
3) The photos of your HIPPA protected PHI remains forever on their personal cell phone.
If the draw is done at an MD or hospital no photos are taken and the patient can take the package to FedEx themselves or the MD/hospital uses their FedEx pick-up.
The question is why are home draws subjected to separate rules, why aren't their phlebotomists trusted with taking the draw without photos? I have asked these questions and after multiple emails cannot get a clear answer from Natera - Signatera. Please ask these questions of Signatera and PLEASE join me in objecting to photos being taken with personal cell phones. Thank you.

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@catsanddogs2025, I can understand that you are concerned about your health data, security and privacy. Photos on a personal phone are not secure or encrypted. Health data shared on your behalf by health providers should only be transmitted through a secure, encrypted portal.

I recommend that you contact Natera, the company responsible for the Signatera test.
https://www.natera.com/company/contact-us/
You might also wish to let your doctor know about this breach.

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catsanddogs2025 | @catsanddogs2025 | Aug 27 1:19pm
In reply to @val64 "No Evidence of Disease. (This means they can't detect your cancer on a CT/PET scan, but..." + (show)
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No Evidence of Disease. (This means they can't detect your cancer on a CT/PET scan, but doesn't imply that you're cancer-free.)

@juliejane on the "Has your doctor..." thread said her insurance paid for it. I was under the impression that insurance didn't pay.

Definitely seems worth doing, as long as it doesn't cost an arm and a leg. Sequencing tests like that have the potential to generate monster bills. So I'd definitely try to check beforehand.

I had Caris DNA testing done over a year ago. The insurance company wouldn't pay and declared that I owe Caris $21,000. I've done a lot of complaining to Caris, and they still haven't tried to bill me for this. I'm starting to wonder if they're hoping to get it out of my estate, since they know I'm going to cause trouble if they send me a huge bill. I'm sort of afraid to ask about it, in case they've just forgotten.

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Well said: "No Evidence of Disease. (This means they can't detect your cancer on a CT/PET scan, but doesn't imply that you're cancer-free.) Also Signatera test, which is a very good test doesn't have false positives yet it can have false negatives because the test was unable to detect the cancer. It is still a valuable test

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jandrew1922 | @jandrew1922 | Sep 24 10:59am

Has anyone with stage IV Ovarian Cancer had the Signatura blood test for circulating Cancer DNA? I am hearing there can be false positives.

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6 replies
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laurelmarie | @laurelmarie | Sep 27 5:42pm
In reply to @jandrew1922 "Has anyone with stage IV Ovarian Cancer had the Signatura blood test for circulating Cancer DNA?..." + (show)
Profile picture for jandrew1922 @jandrew1922

Has anyone with stage IV Ovarian Cancer had the Signatura blood test for circulating Cancer DNA? I am hearing there can be false positives.

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Asked my Oncologist about it. Not part of protocol here as they are not confident at this point as to how to manage the results. Could ‘cloud’ the picture..

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sistermarcy | @sistermarcy | Sep 28 9:10am
In reply to @jandrew1922 "Has anyone with stage IV Ovarian Cancer had the Signatura blood test for circulating Cancer DNA?..." + (show)
Profile picture for jandrew1922 @jandrew1922

Has anyone with stage IV Ovarian Cancer had the Signatura blood test for circulating Cancer DNA? I am hearing there can be false positives.

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I’ve had the Signatura several times. It confirms negative cancer as well as my pet and Ct scans. It does not agree with my CA125 which is very high. Quite confusing.

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