Surgical Breast Cancer Prevention with Savannah Campbell

Women who have never been diagnosed with breast cancer, yet know they are at a very high risk of the disease through genetic screening or testing, have options to help reduce her risk of the disease down the road. MUSC medical student, Savannah Campbell, shares her journey of testing positive for a mutation in a breast cancer gene and undergoing a prophylactic double mastectomy to reduce her chance of breast cancer in the future. She also talks about In Our DNA SC, a MUSC Health community health research project that can screen for cancer and heart disease mutations in the DNA of any South Carolinians interested in taking part.

“My situation, and many women who are diagnosed with a genetic mutation that puts you at an increased risk of breast cancer, the two kind of recommended decision options are to either proceed with pretty intensive screening, where you're getting an MRI every six months from a pretty early age, or to go ahead and move forward with a prophylactic double mastectomy. And so after talking about it, I felt like for me, the mastectomy was the best option.”
—Savannah Campbell

Topics Covered in This Show

• Campbell first found out that her father was a carrier of the BRCA1 genetic mutation when he was found to have stage 4 pancreatic cancer after complaining of abdominal pain. When the doctor realized that the family had a history of breast cancer, he recommended that her father get his DNA tested where he tested positive for the BRCA1 mutation. Shortly after, Campbell underwent genetic testing and was also found to be a carrier of the mutation.
• She talks about her decision to get a preventative double mastectomy, recovery, and what her risk of cancer is now. Campbell says she found resources to prepare herself for surgery and post-op. She has no regrets about the surgery and it took her about a month before things returned to normal.
• In Our DNA SC is a program offered by MUSC that provides an opportunity for South Carolinians to undergo genetic screening free of charge. Campbell says getting screening before a potentially stressful time, such as during a loved one’s cancer treatment, can potentially allow someone to have the luxury of time and be able to digest their results, positive or negative. Genetic screening also allows people to get involved in the fast-moving area of science and understand themselves on a genetic level.
• Campbell recommends for anyone feeling uneasy about genetic screening to talk to their health care provider and family members to allow for better awareness about their risk. Whether someone gets tested or not, she emphasizes that having a good relationship with a care team is extremely important.

Read the Show Transcript

Erin Spain [00:00:04] Welcome to Advance with MUSC Health. I'm your host, Erin Spain. This show's mission is to help you find ways to preserve and optimize your health and get the care you need to live well. Women who have never been diagnosed with breast cancer yet know they are at a very high risk of the disease through genetic screening have options to help reduce her risk of the disease down the road. Today's guest is a member of the MUSC Health community who underwent a double mastectomy at the age of 22 after discovering a BRCA1 mutation in her DNA through genetic testing. Savannah Campbell is a medical student here at The Medical University of South Carolina, and joins me with her story. Thanks for being here, Savannah.

Savannah Campbell [00:00:50] Thanks, Erin. I'm excited to be here.

Erin Spain [00:00:52] Your story with genetic testing for cancer starts in 2018. Take me back to that time. You were just 20 years old and your father received some difficult news. Can you share that story with me?

Savannah Campbell [00:01:04] So I had actually been out of the country for the majority of the summer. It was August and had just got back two days before we got my dad's diagnosis. When I had been out of town, had been complaining a little bit about some abdominal pain, had been following up with our primary care doctor and our PCP actually thought it was possible that he might have a gallstone. And so I wanted to get him checked out to see if he should get that further worked up. He ended up being referred to get an ultrasound of his right upper quadrant to look at the gallbladder, also get some of the liver in there. And when that happened, they saw some suspicious masses on that ultrasound. So he ended up getting sent for a CT scan very urgently the next morning. And that afternoon we were called into the doctor's office where they told us that he had pancreatic cancer and because it was in the liver already, he was stage four.

Erin Spain [00:01:56] At some point during this time. Your dad's DNA was tested as well. Tell me about that. Why did they test his DNA?

Savannah Campbell [00:02:03] We're very lucky. We have an astute primary care provider and he did a little bit of digging. My dad was 53 when he was diagnosed and it was suspicious to our doctor because 53 year olds should not get pancreatic cancer and it should definitely not be stage four. So he kind of dug further into the family history. And what my dad ended up sharing was that his mother had been diagnosed with breast cancer in her late thirties, early forties, passed away from it, ultimately in her early fifties, as well as her three sisters, also all diagnosed with breast cancer. All of them had had mastectomies. Everybody on that side of the family ended up with breast cancer, basically - four for four. After that, he realized that some up and coming at the time information was that up to 10% of pancreatic cancers can actually be associated with genetic mutation. And so he started to become concerned that with that very strong history of breast cancer and the fact that my father had pancreatic cancer at such a young age that there may be a genetic mutation at play. He decided to go ahead and recommend we get genetic testing done at that time, or my dad get genetic testing done at that time. So my dad underwent the genetic testing. He had a blood test done that looked at a bunch of genetic mutations, and he ended up testing positive for a BRCA1 mutation.

Erin Spain [00:03:16] And so you followed suit then thereafter and got a blood test as well?

Savannah Campbell [00:03:21] Exactly. I was a good little biology major and immediately after his result came back, knew that I was going to get testing and showed up at the doctor's office the next day to get my blood drawn.

Erin Spain [00:03:31] So no hesitation on your part?

Savannah Campbell [00:03:33] No. So the testing takes about two weeks to come back. And so we had a lot of time in the interim to think about what that may look like, especially given his history, our family history, we were all pretty suspicious that something would come back. And so I think during that time, I had some time to process. And I felt like for me the best option would be to know, because otherwise I'd be wondering the whole time.

Erin Spain [00:03:53] And sure enough, what did you find out?

Savannah Campbell [00:03:55] I did find out that I also had a BRCA1 mutation.

Erin Spain [00:03:58] So when you found this out, how did your care team counsel you? What did they say?

Savannah Campbell [00:04:03] Again, I'm very lucky. We have a very good family medicine physician, so I was able to go with him. He, knowing my dad, taking care of my dad, taking care of our family, kind of understood a lot of the family dynamic. Though, we had a long conversation about what the next year would look like in terms of my dad's treatment, what my risk looked like, and ultimately talked about the different pathways you can take. And my situation and many women who are diagnosed with a genetic mutation that puts you at an increased risk of breast cancer, the two kind of recommended decision options are to either proceed with pretty intensive screening where you're getting an MRI every six months from a pretty early age, or to go ahead and move forward with a prophylactic double mastectomy. And so after talking about it, I felt like for me, the mastectomy was the best option.

Erin Spain [00:04:52] So how soon did you undergo surgery after you received the news?

Savannah Campbell [00:04:57] It was within the year, I think probably nine months after.

Erin Spain [00:05:00] And this was at the same time that your dad was undergoing some treatment as well. Tell me about that.

Savannah Campbell [00:05:05] So at the time that I had my mastectomy, my dad was finishing up his 14th or 15th round of chemo. I think he ended up doing 16. For him, it started to become intolerable after about a year just because of the strength they were using. But he had a very good response to his treatment plan. So it was a really tough decision what to do because he was responding so well, but physically he was really struggling to make it through the treatments. Ultimately, I have been very involved with advocacy work through Facing Our Risk of Cancer, Empowered or FORCE, and they have a very strong connection to the Basser BRCA Center up at the University of Pennsylvania, who funds a lot of research on BRCA. Their specialty is BRCA mutations and cancers related to those, and through that realized they were doing some trials on new medications that my dad might be a very good candidate for, given his response to his chemotherapy.

Erin Spain [00:05:56] So he was able to go get some specialized treatment and at the same time you were recovering from your surgery. Can you tell me about your recovery?

Savannah Campbell [00:06:05] I think I went in with a very prepared mindset. So luckily a lot of women have come before me and have given some great resources on what to expect in kind of ways to prepare ahead of time for things that are going to happen. So for instance, in our area, you can't shower while you have drains in after surgery. For me, that was about three weeks. So that was something that I think was good to know ahead of time. And so people had a lot of really good resources and like checklist of like these are clothing items you can wear that are easy to wear. You should get like a grasper if you need to get something off the shelf. You can't really lift your hands for a while. Use the grasper. So I went in with that preparation in mind. I would say my recovery immediately after actually went very well because I had a nerve block put in, so I didn't feel much, which was great. And afterwards I spent a little while in physical therapy to make sure that I had full range of motion, mostly because I was concerned that after surgery that big, I wouldn't want to lift my arms up or pick things up too soon. It was about three weeks before my drains came out, and then after that things started to become a little more normal within the month. At the time I was working virtually, so I went back to work pretty immediately within the week after the surgery, but overall it was probably a month or so to get somewhat back to normal. That being said, I think something that a lot of people don't realize when they have a surgery like that is it can get you far, but a lot of times you need revision surgeries to maybe get the exact look that you want or that the plastic surgeon kind of thinks you can get. And so I ended up having a revision surgery. I think my surgery was in June. I had a revision in December and then another revision the following June. So it was a more drawn out process than some people kind of initially think of.

Erin Spain [00:07:50] So this is no small decision to do this. Do you have any regrets at this point or would you do it differently?

Savannah Campbell [00:07:57] Not at all. For me, I think I tried to make the decision that I felt like if something were to happen later on, what would I regret more? For me, I would have regretted not having the surgery more than I would have ever regretted having the surgery. And so once I thought of it like that, it made the decision pretty easy to move forward with.

Erin Spain [00:08:15] So it doesn't bring your risk down to zero. You still have to have some follow up care and screenings?

Savannah Campbell [00:08:21] Correct. So the mastectomy greatly minimizes your risk of breast cancer. However, at the end of the day, it's impossible to remove everything. And when it's done prophylactically, a lot of times it's done nipple sparing, which means you still have breast tissue. For me, that looks like I follow with a surgical oncologist that I see once a year for a physical exam. I don't really have to get imaging, but he will examine stuff and he has taken out a small lump in the past that I was just like, I don't want it anymore. And then I also - because it's not just breast cancer that it puts you at risk of - with my particular genetic mutation, I have really close follow up with my gynecologist around 35. 35 actually is the recommended age where with the current guidelines, it's recommended that you undergo a surgery that removes your fallopian tubes as well as your ovaries. So I keep following up with a gynecologist and just make sure they're up on my exams and that things are caught up knowing that that is probably happening in the future. And then because of our family risk of pancreatic cancer, BRCA1 has a lower association with pancreatic cancer than BRCA2. But with my dad's diagnosis, that is something in the future that I will be screened for when I get a little bit older, that will look closer to 40.

Erin Spain [00:09:32] You mentioned you were working during the time after your surgery and now you're in medical school. I'm wondering if this whole experience with your dad and yourself, did this influence you to become a medical doctor?

Savannah Campbell [00:09:44] I would say yes. So I originally actually was accepted to dental school. I thought I was going to be a dentist right around the time I had applied, right before my dad got diagnosed and interviewed around that time. When it happened, though, I realized that I personally did not want to be confined to just the mouth and felt that given my experiences that I could bring a lot of value to our profession, the medical profession. And so I ended up actually turning down my acceptance to dental school and taking the MCAT, which is the entrance exam for medical school, and applying early decision to MUSC, where you just apply to one school. And if you get into that school, that's where you go. So it definitely shaped my decision.

Erin Spain [00:10:21] Here at MUSC Health, there is a program called In Our DNA SC, which invites all individuals in South Carolina to have the opportunity to undergo genetic screening for certain cancers, including breast cancer and heart disease, for free. What would you say to someone listening who's considering taking part in this program as someone who has gone through this process, in a sort of a different sense, but had your DNA tested and found these results?

Savannah Campbell [00:10:48] So I think one of the most important things when thinking about these decisions. I have done a lot of counseling for women, especially young women, who find out they have one of these genetic mutations. A lot of times when this happens, it's in a very tumultuous time. For example, like my family, where someone gets diagnosed with cancer, that person gets tested, they realized a lot of the other family members are tested. That individual ends up getting tested, realizes they have this risk and then want to do something. And so it's at a time where there's already a lot going on and it can be really stressful in that situation to just throw more stress on essentially by more people finding out their genetic testing results. And so a program like this gives people the opportunity to really take their health into their own hands and look at their risk before when maybe things aren't just hectic. It's a little bit... I don't want to say easier, but you can think more level headed and clearly when you're not under the pressure of like seeing your parent with cancer and thinking, Oh, no, I don't want that to be me, or a sibling, or somebody else in the family. And so a program like this really gives you the opportunity to do things to a degree on your own time frame and gives you time to work through some of these decisions that you may not have otherwise.

Erin Spain [00:12:00] So as a soon-to-be new physician, what is your opinion about programs like In Your DNA SC. This is relatively new in that there's free genetic screening and that every South Carolinian can have this opportunity. Why do you think this would be something that people should consider?

Savannah Campbell [00:12:19] I think that as science advances, things like this are going to become a lot more common and a lot of different treatments are becoming more individualized based on people's genetic results, whether that means a mutation at the DNA level, like a BRCA mutation. That can also mean tumor molecular testing, where they look at your specific tumor and see what mutations are in the DNA of that tumor. And then there's all sorts of different things in terms of prevention, looking at people who may be at a higher risk of some sort of heart disease and better understanding why they're at that risk and what we can do to prevent it. And so I think programs like this are a great opportunity to get involved and not only better understand your DNA essentially, and kind of what you're at risk for and what that looks like for you. But as well as give back to the scientific community to help some of these changes develop. And I think, for instance, my dad is in a trial and trials are extremely important because you get a lot of data that help people make decisions later on and change what the treatment looks like going forward, what the standard of care is. And that's not done without people who volunteer to do that. And so while In Our DNA SC isn't a trial per se, it's an opportunity to help better understand what the genetic makeup of this state looks like as a whole and help people at different institutions like MUSC have a grasp on what areas can we work on to make the biggest impact possible for the constituents of the state?

Erin Spain [00:13:46] How is your dad doing today?

Savannah Campbell [00:13:48] He is actually doing really well. He just had his four year "cancer-versary" we call it. His life expectancy originally it was about six months. So he has greatly outlived that and is for the most part living a normal life, working. He takes his treatment, which are pills every day, follows up with his oncologist in Pennsylvania and other than that, lives a really normal life.

Erin Spain [00:14:09] What would you say to someone out there listening who is maybe feeling a little uneasy about getting screened because there is a family history and they're worried about what the results could say. What would you tell them?

Savannah Campbell [00:14:23] So I think that it is naive to assume that you can make a decision like this and it doesn't open a giant can of worms. So I think people who are worried have a right to be worried. Genetic testing results, even when they're negative, also create a lot of anxiety and worry with them. What I would say is it's really important, even if ultimately people decide not to get tested, to have the conversation with their health care provider, to have the conversation with their other family members, because that allows there to be better awareness about the risk in a family and about different things that they may be concerned about. And then I think it's important to have a good relationship with your care team. And if you don't to seek out other people you can talk to, for instance, a genetic counselor who can maybe help you better understand your risk in a way that you can process and you can digest to see if once you have that information, this sort of testing might be a better option for you.

Erin Spain [00:15:16] What are your plans for the future and your medical school journey? Where do you see yourself going? Maybe an oncologist someday.

Savannah Campbell [00:15:24] I am actually going to be a family medicine physician. I am in a program where I actually will do my training here at MUSC. So I will stay here for my residency and I think it's important to have these conversations early. So for me, I felt family medicine gave me an avenue where I can work with the entire family and talk to people before these things happen. And ultimately, even if someone that does get diagnosed with cancer down the line, you can do a lot for prevention, but you can't prevent everything. Having a good relationship with your primary care physician is an integral part of going through that journey, and for me that was very important.

Erin Spain [00:15:57] Some people listening may see you as their physician next year in your residency program.

Savannah Campbell [00:16:02] Yes, they can come and see me. I will be taking new patients.

Erin Spain [00:16:06] What do you do to optimize your health and live well?

Savannah Campbell [00:16:09] I think there are a lot of different ways to optimize your health and live well. I try and make sure I'm getting a decent amount of exercise, even if that's just walking to and from campus, going to yoga. And I also have tried to really cut out processed foods. There's a lot of data that's coming out to suggest that processed foods are causing a lot of issues. So I would say those are my two biggest.

Erin Spain [00:16:34] For more information on this podcast, check out advance.muschealth.org.