Charles Ryan: Hello. I am joined by Dr. Pamela Munster, my friend and colleague from the University of California, San Francisco, and most recently, an author, of the book Twisting Fate: My Journey with BRCA from Breast Cancer Doctor to Patient and Back. It’s a remarkable story. I really enjoyed reading it. I knew you, your office was three doors down from me when you were going through this. It was touching and really wonderful for me to read about your experience from a personal level, but you really have a story to tell a lot of people. Not simply women with breast cancer, but anybody who loves a woman with breast cancer or faces that risk. Tell us what prompted you to write the book.

Pam Munster: You know, like many things in life, you don’t often set out to do something, right? I never set out to be a writer. I got encouraged from a dear friend of mine, however, I was a breast oncologist for many, many years, and then by fluke was diagnosed with the early stage of breast cancer. When I looked at my pathology, it just looked really odd and I had this niggling sense this could be a BRCA mutation. 

Charles Ryan: You saw lymphocytes. You had DCIS, right? You saw lymphocytes near the tumor-

Pam Munster: Yes.

Charles Ryan: Or near the DCIS-

Pam Munster: Yes.

Charles Ryan: So that was the key, right?

Pam Munster: And I just looked like something we would typically see in the very, very early stages of ovarian cancer associated with the BRCA mutations. So I went to the doctor of pathologist and we talked about it. But then I couldn’t shake that sense that I may have a BRCA mutation, except I don’t have a family history. I didn’t have a family history of breast cancer. My grandma had breast cancer, but she was older. My father is a single child, didn’t have any cancer in the family. So, I did not meet the criteria of testing for BRCA mutations.

In 2012, the test was not universally available. That was before the Supreme Court struck down the ability to patent genes. Then I got the testing done and I remember my genetic counselor calling me saying like, “Darn. You’re positive.” Then what prompted me to write the book, really was, just as I’d gone through all the prophylactic surgeries that a woman has when she has a BRCA gene mutation, like mastectomy, oophorectomy, my father presented with abdominal pain. In any 78 year old with abdominal pain, you would say like just take an antacid, right? But I knew my father had the BRCA2 mutation, so we pushed for him to be worked up pretty quickly. Despite the fact that he had symptoms for less than a week, his pancreatic cancer was already nine centimeters. 

Charles Ryan: Hmm, wow.

Pam Munster: Then for a 78 year old with pancreatic cancer that was advanced and not operable, that would have been really a very challenging situation, but because he was BRCA2 positive, we actually treated him with chemotherapy that would be much more likely for him to shrink the tumor. He then was going through chemotherapy, then through surgery, and he lived with his metastatic pancreatic cancer for six years.

Which again, is something I really wanted to bring out as like, we are very in tuned for women to do BRCA testing-

Charles Ryan: Right.

Pam Munster: When women have breast cancer at a young age, ovarian cancer at a young age, but I believe we don’t think about men.

Charles Ryan: Right.

Pam Munster: And we don’t think about men and their risk for prostate cancer, and we don’t think about men and their risk for pancreatic cancer. Now that we actually do everything differently, we treat them differently, we prevent them differently, we screen them differently, I feel it’s important.

Charles Ryan: Well, we’re trying to get the message out from the medical oncology perspective for prostate cancer that men with metastatic or advanced or high T stage prostate cancer should be tested. But those are patients who are already diagnosed. 

Pam Munster:: Right.

Charles Ryan: What we’re not really thinking about, I guess, what you’re saying, is the man who is otherwise healthy in his 40’s and considering whether or not he should have a PSA screening test done.

Pam Munster: Right.

Charles Ryan: That brings the question of whether or not the primary care physician should know about these things, let alone the oncologist, right? And should a man who’s healthy at the age of 42 with a father with pancreas cancer, and a sister with breast cancer, should he have some sort of PSA screening? We just don’t know the answer to that.

Pam Munster: I think that was actually bringing me to the point that as I was writing this book, this created actually, a lot of tension in my own professional approach to patients. While we have usually separated patients into the breast cancer patient, the ovarian cancer, the pancreas, but really as a BRCA carrier, you’re a little bit of all of it.

Charles Ryan: Right.

Pam Munster: I’ve seen so many young patients presenting with a large tumor. If we had known that they were BRCA positive, we would have screened them. We would have not let them present with a 10 centimeter tumor. I think for women that awareness is really rising much quicker than that awareness is rising for men.

But also wanted to portray that we really have an opportunity to actually eliminate this mutation-

Charles Ryan: Right.

Pam Munster: You could really approach your children before they have their own children to actually think of whether they want to do pre-implantation diagnostics, or what we could do not to passing on these mutations.

Charles Ryan: So where are we with that approach? You say it’s technically feasible where we could eliminate 2. Is that actually being done? Is that something that needs to go through clinical trials or is it something that is many years away from happening?

Pam Munster: No, I think pre-implantation diagnostics has been done for many other diseases and illnesses, where we know that we have an inherited disease that we don’t want to pass on. It has been historically a question is carrying a cancer gene that actually predisposes you to risk of cancer, not something that you have… You don’t have cancer, so it’s like if this is something in the future, would you really feel like even-

Charles Ryan: It’s a risk. [crosstalk 00:06:14] It’s not the disease.

Pam Munster: Not everyone who has the mutation has cancer and maybe you never get cancer. But I would still have liked not to have to pass this on.

Charles Ryan: Right. Interesting. Interesting and admirable. You’ve highlighted a number of issues that cross the boundary between breast cancer to prostate cancer and other malignancies. I know that based on your experience, and your knowledge, and your abilities as a researcher, you were at the forefront of establishing what, I think, is one of the first and only BRCA centers at the University of California, San Francisco, with Dr. Alan Ashworth, also a pioneer in this area of research. Tell us what you do at the BRCA Center.

Pam Munster: You know, a lot of it came from my personal experience from a physician and a breast cancer survivor, if you will. I think having a BRCA mutation, you take care of your breast cancer risk, and that’s one thing. Then you need to take your ovaries out. Then you still have the risk for pancreatic cancer and other cancers. BRCA is a little bit of a cancer enabler, not necessarily cancer causer. But as you know, we are very specialized. It was actually quite difficult for me as an oncologist to find my way of like, who’s taking my ovaries out and who’s going to screen me for colon cancer? We wanted to have a place where we can bring expertise to the patients and not send the patients to different experts.

Charles Ryan: Mm-hmm (affirmative).

Pam Munster: I think having seen the evolution of bringing the experts together, bringing research together, has been a really rewarding. There’s another BRCA Center, the Basser Center, at the University of Pennsylvania. We work very closely with them. As I said, it’s been very rewarding. We, surprisingly, in the last two years, three years, we’ve seen over 2000 patients-

Charles Ryan: Really?

Pam Munster: Of those, 30% are men.

Charles Ryan: Really?

Pam Munster: I think it’s really reassuring to see that we’re getting the men in and the awareness that this is not a female disease.

Charles Ryan: Right.

Pam Munster: This is a mutation that happens in 50% in men and 50% in women.

Charles Ryan: Right.

Pam Munster: It’s really important to raise the awareness, as the men as the patient and the men as the father and potential carrier of a mutation that gets-

Charles Ryan: So if somebody is watching this video right now, and they’re thinking, “I want to be seen at the BRCA Center.” Should I be seen at the BRCA Center because of my family history, or I’ve just been diagnosed with a BRCA mutation? Is this a clinic where they can come and be evaluated?

Pam Munster: Yes. Anyone… We actually, the research is The BRCA Center for Research. The clinic is The Clinic for Hereditary Cancer. We are not limiting patients to BRCA1 or 2. We see anyone with a hereditary mutation. We see people and folks with a strong family history of any cancer because, in the end, we may just not have learned enough.

Charles Ryan: So a prostate cancer patient who is found to be BRCA2 positive, may have a younger brother, for example. That brother would come to you and you would be PSA screening-

Pam Munster: Yes.

Charles Ryan: Or what? How would you… 

Pam Munster: So we do two things. First, we want to get family members in and get them tested because it’s often not easy for the family members to find out where do they get tested, who does the test, and who conveys the results. But then, also the question and what was quite interesting, is as you said. The PSA screening is all over the map.

Charles Ryan: Yes.

Pam Munster: We have by no means clarity around how we screen for PSA, for BRCA carriers, so we brought experts together. What’s very interesting, and in our long discussion, we had a lot of opinions, and not quite as much consensus, but now over the years then, people have come back together and discussed what we going to do, what we think in 2019, this by the best criteria have. It’s a good screening approach. I’m not saying perfect, but a good screening approach.

I think in another step that I really found was really important, we have this BRCA Clinic. Historically, you get diagnosed with the mutation and then you’re sort of like, out there. But every year, we have new research and how does this research, and the knowledge, and the changes in practice, how does this come back to the patients? Seeing the patients regularly now in our clinic will allow that.

Charles Ryan: Great. Of course, not all BRCA2 mutations are the same. There are various different mutations in the whole gene that may have different areas of influence and penetrance, as well. 

Pam Munster: I think that this also brings us the opportunity to actually do research and find out what I’m of course most interested in, is what is the secret for the protected carriers, a term that we recently loosely coined as these are the patients who have the mutation but never have cancer. 

Charles Ryan: Uh-huh (affirmative).

Pam Munster: We’re starting to recognize this, in a sense. We see a fair number of patients, they are 72, 75, they have a daughter who got diagnosed with a BRCA mutation-

Charles Ryan: Right.

Pam Munster: And now, the mom comes in and says, “I’m 75. What do I do?” On one hand, if you have made it to 75 without breast cancer, the chance that you have BRCA-related breast cancer is probably now only about 5 or 6% over the rest of your life. So what makes you protected? I think giving an idea-

Charles Ryan: That’s a really interesting biological question.

Pam Munster: Right. Is it lifestyle? Is it polymorphism? What is it? 

Charles Ryan: Well, you’re doing a lot of interesting work. This is The Center for Hereditary Cancers at the University of California, San Francisco, Helen Diller Family Comprehensive Cancer Center, and Dr. Pamela Munster. Congratulations on the publication of your book. It’s really a delightful read for clinicians, for medical people, but also for regular people who want to hear a good story and a compelling story and learn a little bit about BRCA and its relationship to cancer. Congratulations and thank you so much for joining us.

Pam Munster: Thank you. It means a lot coming from a fellow author and colleague.