Pancreatic Cancer Risk: Management and Options for BRCA+ British Columbians
In this session, Carol Cremin, Genetic Counsellor with the BC Cancer Hereditary Cancer Program, discusses the increased risks of breast, ovarian, and pancreatic cancers linked to BRCA1 and BRCA2 mutations in both women and men, as well as their potential role in other gastrointestinal cancers. She covers screening and management options for BRCA+ individuals in British Columbia, including how to access and navigate care for those who qualify.
Key topics include pancreatic cancer risk and the latest research on BRCA’s role, screening recommendations like endoscopic ultrasound (EUS) and MRI, risk management strategies (such as smoking cessation and diabetes control), emerging treatments like PARP inhibitors, and an overview of the BC care system.
The session also includes a Q&A segment, offering expert insights on early detection, prevention, and tailored care for BRCA+ individuals. This recording provides valuable information for those seeking to understand and manage BRCA-related cancer risks.
You can find the recording here.
NCCN Cancer Risk Statistics
CHARM Study Slide
PRECEDE Study Slide
Transcript of Q&A with Carol Cremin (Identifiers removed)
Tess
a couple questions came in, and I'll just invite folks as well. Let me reopen the chat back up here. There we are. You are welcome if you have a question to pop it in there, or if, if you're so inclined, we love hearing voices, so please feel free to unmute and ask a question that way too. And maybe, as folks type questions in or or reflect, I'll just start with a couple of the ones I have. So a few folks message to say, am I going to get the recording so I can answer that one and say yes, once it has been uploaded on the BRCA and BC website, it will be sent in a follow up email with the link. You might need to be a bit more patient this month than previous, just because the time of the year we're in right now, we're heading into a time of a lot of vacations, so it might take a bit longer than normal, but you will get that link. And this next question, it's a two part question, and this one might be for you Carol, and I know we have some other folks who might be able to speak to this, to somebody asking, I have metastatic breast cancer, and when I was initially diagnosed with stage three in 2010,I had BRCA testing that tested negative, and their question is, in the 14 years that has passed, has BRCA testing become more accurate, or are there more markers, and thus, would it merit having that testing repeated?
Carol Cremin
I think that's a really important question. 2010, things have changed even in the past two or three years. So I think if somebody has had testing more than three or four years ago, it's always a good opportunity to check back with your genetic counselor to say, is there anything new? Yes, panels have changed. So before, where we used to often just test BRCA one or two, we now look at a whole group of hereditary breast cancer genes. Some of them overlap with the genes you saw today with hereditary pancreatic cancer. And so I would, I would encourage you to reach out to your if it's the hereditary cancer program you know us and and and just say, hey, this this, am I eligible for updated testing? And it's, it's, it's likely that that could be the case and, and I think it's always a very good question to ask.
Tess
Thank you, Carol. Okay, and the second part is, would somebody with breast cancer or another cancer diagnosis be at higher risk for developing pancreatic, pancreatic cancer, even if they don't carry the BRCA mutation?
Carol Cremin
Yeah, that's a great question, and I'm happy if any of my colleagues want to take any questions too. They can jump in there…generally we think about the increased risk for pancreatic cancer in that setting of either a familial kind of history in the family, or a pathogenic variant in one of these genes. Having breast cancer, in of itself isn't an independent risk factor for developing pancreatic cancer, but we have to think about kind of that genetic basis of what's going on for that individual, and that there might be susceptibilities there to it due to a gene or a familiar, a familial risk, but not not generally would we say that there's an increased risk of pancreatic cancer just because someone was diagnosed with a non hereditary breast cancer?
Tess
Thank you, Carol and I see that Jennifer kindly put the contact information for the hereditary cancer program in the chat and said, This is the good email to use to be in touch regarding updated testing or maybe those other questions, so that can be one that you use for that.
Okay. Next question, I am a BRCA two and have a first cousin who has just been diagnosed with pancreatic cancer. Should I ask for a referral to GI for screening?
Carol Cremin
Yeah, that's a great question. So this is exactly it kind of, how do we, how do we appreciate the family history, and what do we do when we've, you know, have those details in front of us, and I think that is worth a discussion right away with your family doctor. You know, this is my result. This is what I've just found out about. Found out about for my cousin, BRCA two does have a stronger association than BRCA one with pancreatic cancer risk. As you saw, these aren't, you know, risks that are putting us into the 5060, 70% chance of getting pancreatic cancer, but they are an important increase over the general population. And, and although, you know there are different guidelines on, you know, when somebody should do screening, I think that it would be reasonable to discuss this, you know, with your doctor and ideally make an informed decision based on the pros and cons and the risks and benefits of the procedures available. You know, imaging is making a difference in earlier stage diagnosis and I think especially with that history and a cousin, it makes sense to using the information from tonight to really highlight that, that there's this connection with BRCA two and pancreatic cancer.
Tess
Okay, and where does pancreatic cancer usually metastasize to?
Carol Cremin
I wonder if Dr Cheifetz wants to take that one um, just in her role in the high risk program?
Dr. Rona Cheifetz
Hi, thank you. So there's kind of two patterns for spread for pancreatic cancer, one is to the liver, which is a common site for organs, but the other is it has a tendency to just spread throughout the lining of the abdomen. Kind of similar the way that ovarian cancer spreads. So sometimes, people with pancreatic cancer will end up with fluid collections in their abdomen because tiny little bits of the pancreatic cancer cells have spread everywhere.
Tess
Thank you, Dr Cheifetz. And will they start screening all BRCA, two people like they do in the US, in the near future?
Carol Cremin
In the future, what we need to think about is, again, how to complement the imaging with other tools. And so the screening itself, you're right. NCCN, that guideline group that I mentioned, they have just updated things to say that BRCA two could consider screening even without a family history. It's hard to say when or if the hereditary cancer program will officially recommend that for all BRCA, one or two, if that might happen in the future. But at this point, I think it's kind of watching very carefully where the research and the evidence goes, and especially with groups like pre seed, to try to increase that sensitivity and specificity of screening. Dr. Cheifetz, I'd be curious for your input on that one too, just the difference between the United States and Canada at this point, or at least the NCCN particularly
Dr. Rona Cheifetz
Well, I think, first of all, back to the question the United States does not screen everybody who's a mutation carrier for pancreatic cancer. I mean, this is hot off the press, and even at a recent webinar that I was it in attending from the United States, the group also addressed that we don't really know how what the what I would say is the risk benefit. So if you're going to have an unnecessary whipple procedure, for example. So that's removing half of your pancreas, because we saw something on imaging that looks suspicious. That's a really bad thing to happen. It's very high risk operation with lots of long term consequences. So I think we really need to be careful and be confident that the screening is going to have enough of a benefit to warrant all the potential negatives number one and number two, that realistically we actually have the capacity to do this. Even the group in the US acknowledge that they do not have the capacity, this is in Chicago to screen all of their BRCA one and BRCA two carriers with alternating EUs and MRI. And I'm sure you all know that they have a million times more machines and doctors than we have in Canada. So it's always hard when you get a recommendation, but you can't actually apply it practically to a healthcare system.
Tess
Thank you both. Okay, and this next question is, is it helpful to do a baseline screening of the pancreas on a one time basis if no issues are found,
Carol Cremin
There are some sites that to PROCEDE, and our collaborations with you know such a variety of options are being pursued by different locations that focus on individuals at increased risk. And there are some sites that have looked into this strategy again. We don't know. We don't know if that's an effective approach. So we really can't even answer that question. You know, longer term data is needed, ideally in kind of a very structured kind of protocol, and that is what proceed aims to do. Yeah.
Tess
And is a regular ultrasound effective for screening?
Carol Cremin
No, it's not, unfortunately helpful. And really the imaging tools are MRI or MRCP and endoscopic ultrasound Dr Cheifetz. Do you want to comment on that just the rule of ultrasound? Just generally speaking, might be a common misconception, the pancreas is very poorly seen on ultrasound because all of your intestine is in front of the pancreas, and your intestine is full of air, and the sound ways that you use for ultrasound don't pass through air, so it's really pretty useless for looking at the pancreas.
Dr. Rona Cheifetz
It's different, like the endoscopic ultrasound is different because the ultrasound there is being used looking through your stomach, right at the pancreas, which is right beside the stomach, so you don't have the loops of bowel in the way when you're when you're doing an endoscopic ultrasound, compared to an ultrasound probe put on your abdominal wall.
Tess
Thank you both and and I'll turn it to you in one second. Gailey, I'll just point to a note in the chat here. Our next question was actually, when will the CHARM study be enrolling patients in BC, and Jennifer has very kindly answered that for us in the chat, saying that the charm study is now open to BC patients with sample collection starting in the new year, and she has given a contact there in order to join. And I'm thinking of how we can get that contact onto the recording. I will read it aloud so it ends up in the transcript. The contact for that to join, if you have a pathogenic variant in BRCA, one or two is Sarah Singh, S, A, R, A, dot, S, I N, G, H, at, BCC, cancer.bc.ca, or to phone 604-649-7081.
Tess
okay, go right ahead. XXXX.
XXXX
H, thank you for taking my call. I don't know how to ask the question online, so I just thought I raised my hand so I'm almost 7X years old and BRCA two positive. I have a cousin first degree and an uncle that both died from pancreatic cancer. So I'm just wondering if there's an age restriction to joining the screening program at 7X
Carol Cremin
from our perspective, at least with the Proceed study, but we think that if somebody is very healthy and they have a good kind of longevity status, they don't have comorbidities, that pancreatic strain could still be a reasonable option. Again, kind of just looking at pros and cons in their own situation and and, you know, precede research involvement and screening, can be up to the age of 90, but certainly that would be a unique situation depending on your health scenario.
XXXX
Okay, thank you.
Tess
Thanks for the great question. XXXX, thanks for sharing with your voice. And another question here, What do you consider family history of pancreatic cancer? So would a second cousin count if you knew that cancer was caused by a BRCA gene in that person?
Carol Cremin
So that's a really good question. Generally, family history, we consider close family history as being more relevant to our risks for developing a particular cancer, so close, we usually mean first or second degree. So first degree would be siblings, parents, children, second degree would be aunts, uncles, nieces, nephews and grandparents. When it gets beyond that level, it's it's not as impactful, if at all and kind of the way we use that family history and it would, it would not factor in as much to our kind of family history assessment.
Tess
Thank you. Carol. Okay, and this person is saying, I am a BRCA, two carrier, also currently fighting slash, winning breast cancer. I am 4X no family history of pancreatic cancer. The high risk clinic has discharged me. My oncologist, oncologist will be discharging me soon, and my GP is retiring. Where do I go to follow up regarding the pancreatic cancer or the pancreatic piece?
Carol Cremin
I think the CHARM study would be an awesome option, and hopefully you get randomized to the test arm. I think you know some of the things we've talked about today in terms of lifestyle prevention, really thinking about that diabetes link and getting annual diabetes screening could be a value. Yeah, and then it's going to come down to how you feel about imaging. It's going to be that, that consideration about your own medical situation, the fact your BRCA two, that you have a prior cancer history, and, and weighing the pros and cons of imaging in your particular case. So we might not be standardly telling everyone they have to go and get pancreatic screening if they don't have a family history. But the fact is, is that there, there are some benefits to it. What we recognize is that, you know, there, this is not a perfect tool yet, and that we do need, we do need a better strategy than imaging alone. And so I think tonight has given maybe some of that context for you to take that next step, hopefully and think about kind of that whole perspective of cancer risk management and hopefully early detection.
Tess
Thank you, Carol, and thank you for that question. This person is sharing. My dad was a BRCA two carrier, and passed it to me. He passed from prostate but his mom and dad both passed before he was 20. Not cancer related. He did not have contact with siblings, so we don't know about others with pancreatic cancer in the family. I had stage three, Non-Hodgkin's at 2X and DCIS at XX in 2014 I have noticed that my A1C continues to increase. Should I be concerned and what other symptoms should I keep an eye out for?
Carol Cremin
So I think obviously today is not to provide you with medical advice for your own particular situation, I think you absolutely should take those questions comments to your family doctor. But just want to make one point on it, because it's a very valid question about what if you don't know your family history. And I think one thing to take some reassurance from is that pancreatic cancer in general is quite rare. If you were looking statistically at how many people have a family history of pancreatic cancer, it is a small number of people. Estimates are in the range of less than 1% of people might have a close relative with pancreatic cancer. And so it's a bit different than some of the common cancers where it really there, there might have been a high likelihood that an adopted person had a relative with, let's say, prostate cancer. So there's, it's a little bit of a different scenario with pancreatic cancer for adopted individuals. I think the issue as well, is that there isn't an easy, straightforward, low risk test with high sensitivity and specificity to recommend, and this is why it's not recommended in the general population. And so it's coming down again. More to that newer scenario that guidelines are starting to move towards, which is, you know, should we think about evaluating more thoroughly the benefits and risks of pancreatic screening in BRCA to even without a family history. And I think that is an excellent, you know, point of further work that we need to do, not just in BC, but internationally, to kind of really understand what, how it changes outcomes for people. And so we're we don't have all the answers yet, but just wanted to put that in context, that the likely to pancreatic cancer might not be as high as what we think when we don't know the family history. Again, probably less than a 1% likelihood of having a relative first or second degree affected and and the other part is just staying on top of emerging evidence about pancreatic screening for BRCA two alone, and hopefully putting some of these pieces into practice about diabetes, and even maybe having a baseline consultation if you, if you're motivated, you Know, with a GI specialist if you wish to.
Tess
Thanks, Carol, I see Go ahead. Yeah, thank you, Dr Chefetz.
Dr. Rona Cheifetz
Just because correct me if I'm wrong. But I thought the person who asked the question said that her hemoglobin, a 1c has been rising. So, so that's different, right? Because we're not talking about screening now somebody who doesn't have a problem, like you have a problem, and our recommendation would be that you have imaging done of your pancreas to exclude something there. So it's really in this situation, it's not screening anymore, it's actually investigating your current problem.
Carol Cremin
Yeah, thank you so much. I missed that part. So that diabetes piece is really kind of an association we want to highlight. And you know that that that time period, that three year time period in recent research, was kind of the most significant time period after a new onset diagnosis of diabetes, especially the first six months after a new onset diabetes Is diagnosed. So, yeah, exactly what? What Dr Cheifetz said that should be an independent kind of pursuit of further evaluation.
Tess
Thank you both. Okay. And another question here that says no confirmed BRC, one or two yet, no confirmed familial history of pancreatic cancer, for now, family history of breast cancer and other cancers, one possible ovarian cancer, but one family member with breast and lung cancer has a 10 year history of positive imaging of pancreatitis with the radiologist. Note of chronic pancreatitis is what ongoing screening would be necessary in the case of this one family member?
Dr. Rona Cheifetz
I think it's really hard to get specific matter. Yeah, it's tough to kind of just so specific to this person, I think they need to discuss that with their own attending physicians, because, again, this is not screening. This is now somebody who has a problem, and you're asking about what more needs to be done given that problem, right?
Carol
Thank you both.
Tess
Okay, though I think I've reached the end of my collected questions, folks, but please let me know if I missed one. You can pop it back in the chat again if I skipped over yours, or please feel free to unmute yourself or pop it in now if you have a question you you want to ask,
Dr. Rona Cheifetz
I just have one comment if I can make the charm study, just in case, anybody online who might be a high risk clinic patient is wondering why we haven't told you about this yet. I was just waiting them, for them to send me the patient introduction letter so that we could send it out, and that hasn't happened yet. So the plan was for an E blast to go out about the charm study to all of the active, high risk clinic patients. So don't feel like we I wasn't attending to this on your behalf. We're just waiting.
Tess
Just a note came into the chat from that person who had asked that last question with the pancreatitis, saying, thanks so much for taking a stab at it. And one other question has rolled in, how does the PET scan compare in being able to diagnose pancreatic cancer compared to an MRI with or without the genetic predisposition.
Dr. Rona Cheifetz
PET scan is not a screening test for pancreatic cancer.
Tess
Okay. Anyone else? Any lingering questions out there. Just going to hold tight and pause for a second in case anyone is mid typing or building up the courage to unmute. You're welcome to do that. One person just commenting, if I knew whether I was BRCA one or two positive, I would be lining up for the study.
Tess
Is the other study PROCEDE for those with BRCA one, two and a family history of pancreatic cancer. And I think this is two clarifications, and the CHARM is for those with BRCA one and two?
Carol Cremin
Exactly. Charm is regardless of your family history. BRCA, one or two and proceed. We're really focusing on that group with the family history, but if you are a motivated person and wanting to get screening, even in the absence of family history, you've weighed the pros and cons with your doctor and your GI specialist, we do think that proceed is still a good place to go and be part of in terms of kind of the other factors that we're looking at and so you're more than welcome to contact us about pre seed if you end up getting annual imaging Despite not having a family history.
Tess
Thank you, Carol.
XXXX
If your father refuses to get tested for pancreatic cancer, but he seems to have all the symptoms, how would I How do you recommend I deal with that for my own self, who has had breast cancer and is a Bucha two carrier, knowing that I got it from my paternal side, I.
Carol Cremin
Yeah, that's a hard one. And I'm sorry to hear that your dad's having symptoms, because that's, it's such a it's a challenging diagnosis and I think, you know, from a genetic counselor perspective, you know, understanding the types of cancers in a family is so fundamental to kind of, you know, what we would normally use to advise, advise patients so I can understand your struggle as well, wanting to have that information and it sounds like a very, you know, specific situation for you and your dad and I, I don't know how to how to help with that one. I know some patients are, you know, might accompany their loved one to appointments, and I don't know the extent to the appointments that he's gone to. So I think that's a tough one. I don't know if anybody else wants to comment on that. I
Jen Nuk, HCP Liaison
think maybe the only thing I was going to add, I agree with those sentiments. Carol, yeah, also sorry for that situation. I think you said, BRCA2. And there are these discussions now that even without a confirmed history of pancreatic cancer in the family, there could be the option of screening through some of the expert centers that Carol talked about. So I think if, if you're someone who wants to try and have a referral to those gi specialists, acknowledging your genetic results, your own cancer history, and then this potential history in the family to see what options are there. I think that's reasonable, whereas before, we weren't really talking about that as an option if we didn't have confirmed close relative with pancreatic cancer. But what's hot off the press is now there is some consideration potentially for those who don't have a confirmed history. So we're all, I think, hopefully that's fair to say, Carol, we're all sort of navigating this a little bit alongside you right now to see what's available and where the access is going to be those pieces, but it seems like it's moving in a direction where even without that confirmed diagnosis, you could have a referral to a GI specialist and have the conversation. Yeah.
Tess
Agree. Thank you both. Thanks for that question.
Catriona
It sounded to me, what she was looking for, also was just a little, I mean, I don't know if there's any thinking or guidance on, you know, how to talk to older male relatives about about their health and how to, you know, and proceeding when they're when they're symptomatic. I mean, I don't know if anyone's got any brilliant ideas or suggestions.
Jen Nuk, HCP Liaison
I don't know how old he is, but I think some of the information we covered today just about stage and how it impacts survival and so trying to be, you know, mindful of, you know, trying to get to an early diagnosis. Of course, this is such a individualized, you know, very specific situation, but maybe just very generally talking about how, you know, listening and following up on symptoms. Can, can, can actually make a difference in terms of treatments and treatment outcomes, and the earlier, the better, really, just to to maybe frame it that way.
Catriona
One I wonder if XXX or maybe Tess you can advise on this. If someone talking to one of the counselors at Inspire health might be helpful.
Tes
Yeah, yeah. I think there's certainly a place and a role for that to explore what communication might look like for us, to better understand what the history of communication is, because, of course, that's very relevant, but certainly, if that's something for you, Sarah, thank you for that question, or for anyone else that you're looking for support, talking to family Members, figuring out how to navigate that, that's certainly where, where counseling can have a role in that side of things. So I'm about to put up the resources after we're done with the questions here for how to make contact. So please feel free to utilize those.
Tess
My last thought about that. Thanks, Catriona for sort of prompting. A little bit more discussion is, you know, maybe sometimes if people have a lot of fear about their own medical history or where things are going to take them, and are kind of focused on self, maybe having that perspective, that knowing a bit more about what is or is not going on for him could be helpful in planning your own care, may be a different way for for him to look at things, so that it may not be about self, but about about your care and your future screening, is maybe another way to look at that.
Carol Cremin
Yeah, beautiful addition. Jennifer,
Tess
Okay, folks, well, thank you for all of those incredible questions, and thank you again, Carol for that amazing presentation, and for all of that thought and care in that, in that Q and A period as well.