ATM 2026 NCCN Guidelines
I had genetic testing done in 2019 and have a ATM variant. I was diagnosed with BC in 2017 (Stage 1 and tumor under 1 CM) and had a lumpectomy followed by radiation treatments. Took the Breast Cancer Index Test and results showed benefit of taking Arimidex for 10 years so I have one more year to go yay.
The question I have is I’ve looked at the new NCCN 2026 guidelines and it seems that they’re recommending yearly pancreas screenings because there’s a 5 to 10% risk of pancreatic cancer with ATM. Family history is a factor as well which helps only if you know your family history. Is anyone else getting annual pancreatic screenings?
PS I was on this site quite regularly a while back but I have to admit I’m having trouble navigating with this new interface.
Love to all.
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Hi @butterfly1234,
Fellow ATM’er. I am doing the surveillance and am participating in the CAPS5 study. I believe the current age recommendations for regular screening for those without family history is age 50. There are guidelines for people with family history. I don’t know what the recommendations are for people who do not know their family history.
I had MRCP and EUS to begin with. Then I will alternate MRCP and EUS annually. Also do CA19-9 every 6 months. As part of the CAPS5 study they also do a test to see what the participant’s “normal range” is for CA19-9.
I have been seen at 2 different NCI Clinics. At one, my genetic oncologist was on the NCCN panel that created the new guidance. Funny enough, she was skeptical of the new screening protocol. She implied it’s a death sentence usually even if found, so why bother. I had my MRCP there and found a side branch IPMN. She made the point that since I have ATM, I am more likely to have IPMN.I then went on and joined the CAPS5 study at the lead hospital, a different NCI hospital, with the lead study doctor. They said they have found 3ish dozen early stage patients out of 1500 ish enrollees.
They did say that patients with ATM & side branch IPMN do not have any additional risk of developing cancer than a non ATM’er who is found to have a side branch IPMN. So 5 - 10% which aligns with the general ATM risk.I found the pancreatic screening team at both NCI hospitals to be really responsive to discussing screening options for ATM’ers. And I really feel comfortable with the CAPS5 group. Since they are doing the research study they seemed more invested in long term monitoring than the non CAPS5 NCI hospital. If you Google the CAPS5 study you can see the contact information and sites for the study. Even not being close by, when I contacted the lead institution from 2,000 miles away, I was able to have a courtesy phone appointment with the lead nurse coordinator. I found the call alone to be super useful.
It’s definitely another layer of “fun”. I hope you find the answers that work for you:-)
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Thank you very much for this information. I scheduled a virtual appointment with the genetic doctor I met with back in 2019. I’ll ask her about this study. I’ve passed this on to my daughter which makes it even worse for me. I did have a MCRP of pancreas last year which was normal, I asked my MD for one not knowing about the new guidelines. I’ll have to bring my doctors up to date. Best of luck to you.
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I just had genetic testing in December. I was told that I had a VUS on the ATM gene. Is yours something more specific than that? She didn’t have any information about what that meant, just that it is unknown at this time. My dad died a year ago from pancreatic cancer so this has me concerned.
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@butterfly1234 Glad you have an appointment scheduled. Hoping you get some good guidance.
My sister passed along the mutation to one of her kids. It stinks. The only lipstick to put on it is the knowledge is power part. At least she can start surveillance and decision making early.
@cosun10 So sorry about your Dad. And about your new finding of the VUS ATM mutation you carry, in addition to stupid breast cancer. I am speculating that with your VUS and family history you would qualify for screening as high risk even if not for ATM mutation. My mutation is not VUS, it is Pathogenic. As I recall, the age for screening is 50, or 10 years earlier than your Dad’s diagnosis, whichever is earlier.
Colorado University Cancer Center offers specialized screening for high risk people. I would reach out to them. (I think you are in the Denver area). They are National Pancreas Foundation Academic Center of Excellence. They would probably be your closest best bet. You want to make sure you are at a high volume, specialized screening center with the right equipment and the right physicians.
Sorry you had to join the group. I hope you find there is a lot support here for you!0 -
@cosun10 I’m so sorry that hear about your dad, I can empathize with your loss. Your particular variant is unknown and I think a discussion with a genetic oncologist would be helpful to discuss your possible surveillance plan. My daughter and I have annual mammograms and breast MRIs . I’m so sorry you’re in this club with us.
@simonerc thank you for sharing all your knowledge. I’m meeting with my gastroenterologist and scheduled a colonoscopy since these new guidelines have now included a risk for colorectal cancer into the mix. It’s always something right?
I’m trying to keep my anxiety levels in check.Love to you both.
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Thanks to you both for the information and the kind support! I hope for the best for you.
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@butterfly1234 Yes to colorectal and stomach cancer risks. I have a sibling with the mutation who had CRC. After that diagnosis there was only one other polyp ever found in 17 years.
I on the other hand have had over 70 polyps, annual colonoscopies and frequent endoscopies. Developed chronic heartburn in my 20’s.
But I have to say, the colonoscopies don’t bother me as they find and remove the polyps that could become a problem. And I happen to love the propofol nap:-)Glad to hear you are meeting with your gastroenterologist! We have an increased risk of stomach cancer as well, so maybe inquire about adding endoscopy as well while they are scoping you. I frequently bring information and guideline with me to appointments with specialists just in case they are not aware of ATM and all of the nuances of screening recommendations and implications of the mutation.
Will be thinking of you and sending all best karma for a sparkling clean and normal scope!@cosun10 Thank you and right back at you!
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Thank you for the information. I meet with my Gastroenterologist tomorrow and will definitely bring up the endoscopy. I also have GERD. The propofol is the best part . Sorry to hear you have had so many polyps. To date I haven’t had any. I’ve done some research about the different variants and they do differ. It’s too complicated to explain fully. My variant is very rare but likely pathogenic. Probably about a 90% accuracy and hasn’t been reclassified to pathogenic, yet. The same screening protocols apply to me any way . Thank you again. Will keep you posted.
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