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There are 18 million cancer survivors in the United States, thanks to advances in care and treatment. Cancers that used to be death sentences are now treatable, but the effects of chemotherapy, radiation and surgery can last long after treatment ends. An emerging field of cancer care called survivorship focuses on helping people manage the short- and long-term or late effects of cancer treatment.
On our Fred Hutch podcast, From Bench to Bedside and Beyond, Hutch News writers/editors Bonnie Rochman and Diane Mapes explore the many facets of survivorship in a new series that dives deep into what it means — physically, emotionally and spiritually — to survive cancer.
Key takeaways:
The term “survivor” applies to people from the moment of diagnosis. Mapes shares her experience as a breast cancer survivor and advocate Barb Regis, PA-C, discusses her melanoma treatment and how it inspired her to help launch the Survivorship Clinic at Fred Hutch. Why Regis shares her own story of survival with the patients she cares for What patients can expect at the Survivorship Clinic
This initial episode is timed to coincide with National Cancer Survivors Day, held annually on the first Sunday in June.
Find out about Fred Hutch’s survivorship offerings, learn more about survivorship issues from the American Cancer Society and explore the National Cancer Institute’s Survivorship Resources.
Listen to the audio interview
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Tune in for more episodes of From Bench to Bedside and Beyond. And if you’re interested in being a guest, please reach out to brochman@fredhutch.org.
Transcript:
Bonnie Rochman
Welcome to From Bench to Bedside and Beyond. I'm Bonnie Rochman.
Diane Mapes
I'm Diane Mapes.
Bonnie Rochman
And we're writers at Fred Hutch Cancer Center. And today we're introducing a podcast series about survivorship. So survivorship is a pretty new concept as we've talked about, Diane, and certainly it's a new area of focus for cancer centers like Fred Hutch. And that's because for years and years and years, people didn't actually survive a cancer diagnosis. But with advances in treatment and the tireless research that's going on right here at Fred Hutch and around the country at comprehensive cancer centers, more and more people are starting to survive cancer and living with cancer. In fact, there are now 18 million cancer survivors in the United States alone. And sobecause of that, our survivorship programs are growing. Now, a lot of people might say, what's a survivorship program? And we're going to get to that. So we'll tell you how Fred Hutch is evolving its survivorship program and actually what a survivorship program is in the first place in a later episode. But for now, we're going to really focus on what survivorship means to someone who has firsthand experience with it — Diane Mapes, who was diagnosed with breast cancer 15 years ago. Diane, take it away. What do you think about the term?
Diane Mapes
Well, we need some kind of term to describe what happens to you after you're diagnosed with cancer. They came up with survivorship. I don't have a problem with it. Some people do, particularly the people who have metastatic or stage 4 cancer, and many feel that they're not actually going to survive, per se, their cancer. But other people really like the term. When you're diagnosed with cancer, you become a survivor automatically. Thank you. You're welcome. Yeah, that's the American Cancer Society's definition. Good enough. I was diagnosed with lobular breast cancer in 2011, early 2011, and had sort of the full Monty when it comes to breast cancer treatment. I had a double mastectomy. I had tumors in both breasts, didn't have a choice. I had chemotherapy. Then I had about six and a half weeks of daily radiation. You do get weekends off for good behavior. And then I had 10 years of anti-hormone treatments. And then, of course, there was also reconstruction, which involved multiple surgeries. So the more treatment you have, the more you are surviving, so to speak.
So I went through all of that in 2011. Treatment lasted pretty much the full year. About three years later in 2014, I came to work at Fred Hutch because I was really mad that I had followed all the rules, got all the mammograms, got all of those, had lots and lots of scans and everything was always very clear. I had followed those rules, but cancer did not follow those rules. So I came here to write about cancer research, to write about the cancer experience, trying to help make sense of it for people, or better yet, help them avoid it. So, it's complicated. You're not really surviving just cancer. You're actually surviving a lot of things.
You're surviving being diagnosed with cancer. You're surviving the cancer treatment, primarily. You're surviving the U.S. healthcare system, straight-up learning curve, if you've never been in the hospital before. You're surviving financial toxicity because of the high cost of care. You're surviving the PTSD of getting diagnosed and all the immediate side effects that you get from your treatment, as well as the long-term side effects that you can get from a treatment, which can be physiological, emotional, psychological. Again, I mentioned financial toxicity. So you're surviving a lot. Basically, your body has betrayed you on a cellular level. So you come away with a few trust issues, shall we say.
Bonnie Rochman
And we're going to go into, we're going to break all of those issues down in future episodes. But I want to circle back to something you just said about survivorship. Sowhen we first started kind of rolling this idea around in our heads, one thing that you said that really stuck with me is you're not surviving the cancer. And I'm like, wait, what do you mean? You're surviving the treatment. And you just listed, I think, four different treatments that you underwent. So I thought it could be valuable to talk a little bit about how cancer is a conglomeration of different diseases, even within just breast cancer. It's a different disease for every person.
Diane Mapes
It's a different disease for everybody.
Bonnie Rochman
And the treatment is personalized to what your specific cancer is, what your needs are, what your state is. Yeah. It should be. And so can we talk a little bit about the various kinds of cancer treatment and what they can do?
Diane Mapes
First what I would like to differentiate is I think a lot of people get confused between early stage and late stage cancer. There's other names for it too. You've heardadvanced cancer, metastatic disease, stage 4. In England and the UK, they call it secondary, secondary cancer. It means the cancer has spread beyond the original primary location, your breast, your colon, your lung, you know, your throat, and it's traveled to other organs of the body. Early stage patients rarely are sick from their cancer. I was stage 3, had no idea. Never felt healthier in my life, right? So you don't really have side effects if you're early stage. I, as I said, I got all my mammograms. Everything was always clear, but since I had lobular cancer, which does not make tumors, it doesn't stick together and make a clump. It grows in lines.
So a mammogram didn't pick it up. And because I had dense breast tissue, mammograms didn't see that because cancer appears white, and dense breast tissue appears white. So it gets lost in there. So there's a really big difference between your cancer experience if you're diagnosed with early stage and your cancer experience if you were diagnosed with late stage. The thing is you may not experience any side effects of cancer itself when you're early stage. I noticed a change in my breast. That drove the whole, you know, scanning and diagnosis and all.
Bonnie Rochman
That's what kind of tipped you off that something may be going on.
Diane Mapes
There was a change in my breasts. It was just a little tiny dent, a little tuck. Looked like nothing. I could have completely ignored it, and I might not be here. But I followed up. Doc said, hey, you're due for a mammogram anyway. Let's get you in for one of those, right? So again though, I had never felt healthier in my life, so it was very counterintuitive to be feeling so healthy and to walk my healthy body into the surgical suite and have body parts removed. What I wanted to point out though, is that I understand why people hesitate about doing the traditional cancer treatment. Because again, if you feel healthy, it is really counterintuitive to have doctors telling you, you have to remove those body parts, you have to do this, you have to do that.
So I understand why people will look for alternative treatments. The problem is they do not work. You have to do the treatment that is proved to be effective and evidence-based. Otherwise, you know, you don't make it...We're hearing a lot about early onset colorectal cancers, people under 50. Same thing happens with breast cancer with moms. Postpartum breast cancer, a new mom will develop breast cancer in her 30s. After having a child, stage 4 patients, they might have painand they might be experiencing cancer pain and cancer debilitation. They might have back pain or a blinding headache or shortness of breath. The questions, these questions, are the ones that pop up every time a cancer survivor shows up for their follow-up appointment. They say, do you have any shortness of breath, have you experienced a fall, do you have any pain anywhere?
Bonnie Rochman
They're not just kind of interested in you. These are very specific targeted questions.
Diane Mapes
These are specifically targeted questions to find out if you have a metastatic recurrence somewhere in your body where cancer has invaded other organs like your lungs, your brain, your bones. So that's what that is. So for early stagers, it's all about the side effects of treatment and the aftermath of treatment and the surgery and diagnosisand PTSD. With late stagers, they have the treatment that they're dealing with. The PTSD of a diagnosis and a terminal diagnosis, but they're also dealing with the pain and the hardship of cancer itself on top of the treatment that they're getting. They're dealing with that on a day-to-day basis. They are in treatment until the end of their life. So, except for a few outliers, you know, who look really, really lucky.
Bonnie Rochman
So that's kind of the distinction there. So with all these different treatments that you underwent, there are short-term side effects and long-term effects of every single treatment. And then in addition to the physical and physiological side effects, you've also got emotional side effects, spiritual side effects. Often cancer can impact all sorts of relationships — romantic, parent-child.
Diane Mapes
Well, sexual side effects for sure.
Bonnie Rochman
Sexual side effects. I mean it just does not leave an area of your life untouched.
Diane Mapes
Your friends will dump you too. I mean, there's that as well and spouses. Oh yeah, two really good friends, their spouses were out of there.
Bonnie Rochman
They just couldn't handle it, it was just too heavy for them.
Diane Mapes
I don't know. Some people are just not comfortable with cancer. I mean, who would be, right? It's just a matter of being there for people or not. Some people aren'tequipped for that. And treatment is very, very different depending on the type of cancer that you have. I had breast cancer, that is considered a solid tumor. So the treatment for solid tumors is more like the chemotherapy, the radiation, the surgery, the anti-hormones, whether you're a prostate cancer patient or a breast cancer patient. But treatment for a blood cancer or a lymph cancer is quite different. Like if you have to do a stem cell transplant, basically that is an immune system transplant. They kill your own immune system with highly toxic chemo and then transplant somebody else's, a relative or somebody who matches into your system.
But they have very, very different side effects. A lot of it comes from being severely immunocompromised. They will have side effects like GVHD, graft-versus-host disease, which can cause all kinds of issues in all different parts of the body. So there's that kind of treatment. Now things are changing a lot.
As you mentioned, we've got immunotherapy. Solike an early stage solid tumor patient might get surgery, chemotherapy, radiation. Maybe they get tamoxifen or aromatase inhibitors if they're a breast cancer patient. Maybe if they are a prostate cancer patient, they might get an androgen deprivation therapy. They might be put on Lupron, like for ovarian suppression, women might get that if they still want to have kids. You'll be put on steroids. You will be put on checkpoint inhibitors maybe if you're high risk now, if you are a breast cancer patient, early stage. After chemotherapy, they commonly give patients a shot of either Neulasta or Neupogen, a colony-stimulating factor, a granulocyte colony-stimulating factor, and that boosts your white cell production. So it fights off infection because a really common side effect is you get some kind of infection because you are severely immunocompromised from your treatment, from your cancer.
Bonnie Rochman
So with all of these treatments that we're talking about, all this, I mean, just listening to you, I'm feeling overwhelmed. So with these different treatments, there are, in some cases, late-term side effects that we are still discovering because, let's go back to the beginning of when we started having this conversation. Because people historically haven't survived for years and years and years, we don't have the longitudinal data to even really know how these treatments impact people over 10 years, 20 years, 30 years out. And then you take immunotherapy, which is harnessing the body's own immune system to fight your cancer. And that is much newer. We really don't know what the long-term side effects are of that. And that is one reason why research is really so important. That's what we do here at Fred Hutch.
Diane Mapes
Yeah, I mean, if you think about how cancer treatment has changed over the years, I see it as someone who's 15 years out. When I was diagnosed, there was no MammaPrint or diagnostic tests that would tell me, you know, if I should have this treatment or that treatment. So these things have been developed since then. There were no checkpoint inhibitors, CDK4/6, for people if they were at high risk. That is new. They're using radiation in different ways, they're using chemotherapy in different ways. It's much more finessed now, much more of less is more. They are discovering and they're discovering this because of research, because they keep going back and looking and saying, do we have to give that much? How about maybe if we don't give that much?
Another thing that's really common with breast cancer particularly is that when you get a mastectomy, they used to, and some surgeons continue to do this, harvest all your lymph nodes. Well, your body needs those and without your lymph node, women and men will get, you know, swelling of the limbs, lymphedema, because it cannot clear the body of all of these, the toxins and stuff. So again, that could be a short-term or a long-term effect of cancer treatment.
You know, we all know the short-term stuff, chemo, you lose your hair, it grows back. You have nausea, but they have really good anti-nausea meds. So like when I had chemo, I didn't throw up once. I was very proud of that. But I assumed I would be living in the bathroom, right? Because that's what you see on TV all the time. Everybody knows it's the, you know, really skinny, pale, bald woman, but it's really not like that so much. You do have a lot of short-term stuff that you have to deal with. Nausea, hair loss, mouth sores. You know, weak fingernails, that sort of thing, because chemotherapy kills fast-growing cells like cancer and hair and mucosa. And you know that's why you get nauseous in your stomach.
Then you also have these long-term issues, you know it could be the cognitive effects of chemotherapy, the old chemo brain where you're just sort of kind of foggy, the sexual side effects that we mentioned, where you lose your libido. You know, when they start you on chemotherapy, or they put you on an anti-hormone, you are in menopause. Immediately. It's like you hit it. There's no transition. You hit it like a brick wall, 60 miles an hour. So there goes the libido! There goes everything. Here come the creaky knees and the creaky joints.
And I used to wake up every morning and my hands would feel like glass, like they were going to break, just shatter. So some people know about some of these, some people don't. When you're about 10 years out, you know, which is where I am 10, 15 years out. Then you have to think about things like the cardiotoxicity of chemo, what the effects are on your heart. And there are certain chemotherapies that really impact your heart and your heart functions. So you have to get checked out for that. You have to be checked out if there's any damage to your lungs. I have radiation on the left side. So that's a lung and a heart, you know. And I have to really be cognizant of that and make sure that I get scanned. I got a scan. I got a cardiac CT. And wouldn't you know it, they found some lung nodules. So now I'm seen to make sure that it's not a new primary lung cancer or metastatic disease, breast cancer in my lung. So there's always something fun you’ve got to check out.
Bonnie Rochman
Yeah. So that is a great way to segue to the fact that treatment, even once you are done with your treatment and you're — when did you finish your anti-hormone therapy? Five years ago? Mm-hmm. Okay. So you've been out of treatment for five years now, right? But you're still, it doesn't end. So there are side effects, after-effects, so many things can and are really changed forever. And that doesn't need to sound like, oh my God, doom and gloom, but...
Diane Mapes
Things are going to change things. Yeah, and it's important for people to know that cancer doesn't end when you're out of surgery, chemo, radiation, you know, whatever. You're still dealing with all the cumulative effects of all of this. And sometimes they, you, know, come back and visit you unexpectedly, you know, where you realize, you'rean unwelcome guest. Yeah, exactly. They pop up on your doorstep. Say, hey, remember me? I'm fear of recurrence. It's definitely not something that I am fussing and thinking about every day, although I do work at a cancer research center, so you know, writing stories about cancer a lot. It is top of mind, but I am not brooding and gloomy about my own cancer and the treatment and the things that are changed all the time.
Yes, I am uncomfortable every day because I have implants under the muscle. And it feels like I'm wearing the most, you know, the world's most uncomfortable bra that I can never take off. Yeah, yeah, that's part of it, but I'm alive. You know, I'm here to complain about it, right? So it's just a matter of getting the tools that you need, getting the resources that you need, knowing what you're supposed to pay attention to. You know like, right now, I think I mentioned to you, I have to go to the dentist quarterly to have my teeth cleaned, because I have dry mouth permanently from chemo, you know? I have, as I said, I have a cardio-oncologist, I'm going to a lung nodule clinic, you know, my energy level is not the same as maybe it should be, right? And I also have to be aware that I have to look for signs of recurrence. Always be on the lookout for anything that might be something that needs to be explored further.
Bonnie Rochman
Now, how do you balance that — the evidence-based awareness that that is something you need to look out for without freaking out about every, I don't know, little twinge you might feel.
Diane Mapes
It's a balance, it really is. I think about the things that I'm doing to stay healthy. I probably walk four or five miles a day, I do yoga a couple times a week, a little bit of strength training, and yoga involves some meditation and breathing, and there's also medication. I'm on anti-anxiety meds, you know? Might as well throw those out there too, because I'm using all my tools, you know? And working at a cancer center, too, and having a lot of people that you know and love dealing with cancer and dying from cancer, it's anxiety-producing. But I don't sit in that place where, I don't sit in the place of fear and worry. I sit in a place of power and determination, I think, moreso.
Bonnie Rochman
I think it's an amazing place to end unless you have something specific that you want to add.
Diane Mapes
Sure. I'm trying to, you know, move forward. Just keep swimming is what I always tell people.
Bonnie Rochman
So this has been an awesome conversation. Diane, thanks for sharing your experience both as a patient, as a professional, and as a survivor. Next, we're going to be joined by Barb Regis, who is a PA who has really helped build the survivorship clinic here at Fred Hutch. She is a survivor herself, and I'm going to let her tell us in her own words how she made it to Seattle from Arizona, where she practiced for almost three decades. Thank you so much for joining us. I just introduced you at the end of my conversation with Diane, and I'm really interested in hearing your story. You were given a 60% chance of living five years when you were diagnosed with cancer. And I'mwondering if you could tell us about that diagnosis, what that diagnosis was, and especially what it was like to get that diagnosis both as a person and as a primary care provider.
Barb Regis
Thanks for the opportunity to chat with you today. Yeah, I was diagnosed with a rare form of melanoma called amelanotic melanoma back in 2018. The melanoma didn'teven look like a typical black mole, you know, it was nodular. It just didn't at all look like it. So I really wasn't too concerned when I went to my dermatologist, except for it was growing very quickly.
So think about this, I'm seeing my patients and it's noontime with my team. And I get a phone call and the phone call is, you better sit down. I go, I'm sitting, so let me have it. So my friend, the dermatologist says, you have a very rare form of melanoma. We're really worried about you. We need to get you in as fast as possible for treatment. And so, you know, we need to take this really seriously. So I said, do you have people in mind that I can go to? And she's like, yeah, I have this doctor and this doctor. And these are people I had referred to in my practices before, so it was like, yeah, good, let's get it going. So I sit back and I'm with my team and I just take a deep breath, I'm like, trying to process, like, what did you just say, right?
And so basically I looked at my team and I go, we've got patients to see this afternoon. And the first thing I thought of was like how do I keep it together for my patients? But more importantly, how do I go home and tell my family that I'm in trouble when we didn't think there was really anything going on. You know, it was just, it was daunting. It was crazy. So I just went in, I saw my patients for the afternoon, I went home and told my family, told my husband, basically said, here's the deal. And then I got a call and I was very blessed to be able to get into a surgeon, to an oncologist within, you know, three or four days. And so, yeah, it was crazy. As a provider, when you're somebody who diagnoses people with cancer a lot, you know, when it's your turn, it's a whole different feeling and perspective, that's for sure.
Bonnie Rochman
You're here now. So walk us through, how did you get from Arizona to Seattle? And I'm curious about the treatment too. Is it just surgery?
Barb Regis
With the treatment let me I'll tell you what happened basically was I went in and we did surgery and basically they took a huge wedge out of my arm so they were thinking they might have to do like a skin graft but we lucked out and they were able to do a closure but if you look at my arm I do look like a shark took care of business but I won at the end and then I was very blessed because it sounds terrible I was stage 3C. But I was blessed because I knew I qualified for immunotherapy. So I knew that if I was2D, I would not have qualified unless I got in a trial, but being at 3C, I would qualify.
So I did immunotherapy for, you know, for a year. Things were fine. Things seemed to be great. Well, July 4th of 2020, I felt my arm right here and I went, oh my goodness, it's back. So at that point, I called up my oncologist, she goes, Barb, I just saw you two weeks ago. I go, I'm not kidding you, it's back. So I get the PET scan and luckily I was still just more involved in the arm and some lymph nodes. More surgery. Fast forward, the plan is now, from what they knew back in 2020, we would do a combination of two immunotherapies. We'd do Ipiniv and we'd do radiation. We do it all at the same time. So basically what happened was they hit me. I had radiation burns.
Diane Mapes
It was the immunotherapy that...
Barb Regis
It was, it was.
Diane Mapes
A reaction or something.
Barb Regis
So I ended up permanently with adrenal insufficiency, so I do rely on steroids for the rest of my life as a result of that. And I had colitis and I had a lot of different things. But we elected to stop three out of four, finished the radiation. And the great news is I'm now, this year, a patient at Fred Hutch, and I'm without evidence of cancer. So, it was worth it.
Diane Mapes
Yeah, NED — no evidence of disease.
Barb Regis
Yeah, it's a beautiful term, isn't it?
Diane Mapes
My favorite guy.
Barb Regis
Yes, that's right.
Bonnie Rochman
That's right. How many years is that since?
Barb Regis
It was 2020, when I really had the problems, it was right around my birthday, October, and then it's been six years.
Diane Mapes
Yeah, so that's great for our patients because you have a lot of experience in the newest therapies out there. So that's really beneficial for people because immunotherapy is just continuing to grow. When you went through it, it was pretty new. It was only being used for melanoma and only a few really advanced melanoma cases, correct? Right. And now they’re using it more and more in solid tumors as well.
Barb Regis
Keytruda, you know, was the therapy that treated Jimmy Carter back in the end, and they didn't know it was going to cross the blood-brain barrier, and it did. And now Keytruda is indicated as not necessarily first-line, but second-line, third-line for over 40 different diagnoses. So it's very exciting. I am so excited about what immunotherapy can do for patients, how much hope it gives patients, and what we're seeing in the breast cancer space with triple negative breast cancer and those kinds of things. There's so much hope and I am so grateful that I qualify because I know if I had been diagnosed a decade earlier, I can honestly say I would not be speaking with you today. And that humbles me a lot.
Bonnie Rochman
And additionally, you have the expertise and the firsthand experience of immunotherapy and side effects to be able to talk to your patients who are survivors of all sorts of cancers, melanoma, and anything else too. You just have that additional, I think, level of empathy that someone who hasn't gone through it wouldn't have.
Barb Regis
You know, we still don't know, we're learning more about the late effects and all these kinds of things. And I just share with patients, just stay the course, try to be healthy and be grateful that we have more tools in the toolbox as we have concerns with people that are not responding to some of the traditional therapies and stuff like that that we've been used to forever, that kind of thing.
Bonnie Rochman
So, thanks for sharing everything about your experience with having cancer, being diagnosed, being treated. We're happy you're here. We're so happy you are here. Our patients are so happy you are here. Your diagnosis, if I'm remembering correctly from when we talked last month, your diagnosis, I think it would be fair to say it directly, it's directly correlated with why you're here.
Barb Regis
Yeah, I've been in Arizona since I went to college and I never expected to stay there. I'm an East Coast girl. And my husband and I came this close to moving here in 1992. And the only reason we didn't move here was because my parents announced that they were going to be snowbirds in Arizona and they were coming our way and I'm like, oh great. So we had, you know, his parents, my parents, so we elected to stay to see them through. And my parents had very great longevity genes, and so my parents were in their — my mom, early 90s, my dad, late 90s — before he passed. And so while I was dealing with this diagnosis of melanoma, I was also dealing with a lot of issues with my parents, and my husband was amazing in helping me with that. But...the moment my dad passed away, I know this is going to sound terrible, but he passed away and he was 98 and a half. He had a great life. I looked at my husband and I said, if I die here, I will never forgive you.
We wanted to be in Seattle so bad, so bad. We both did. We were done with the desert. 115 degrees, now I'm wearing long sleeves. I want seasons. Oh my gosh, it's fresh air here. I challenged him. I said I know we're a little bit older, but get a job. I always knew I wanted to get into the cancer space. So I actually started applying for jobs and it was like, you have no experience in the cancer space, you know, you’re primary care. That's how I ended up at Fred Hutch. It was just finally having an opportunity and an interview and somebody saying, okay, we'll take a chance on her.
Bonnie Rochman
So did you, did you even know what survivorship was? Had you done survivorship in Arizona? Like,what were you applying for?
Barb Regis
All I knew was it was for cancer survivors and I was like, you know what? I've got a lot of primary care experience. I'm a cancer survivor, thriver. I think I can talk the language. And I also knew that I had learned in the interview process that they really wanted to build the clinic and they really want to get survivorship out there and start helping it thrive. And I got a sense that they were struggling with that. So one of the things that I bring to the table is I have built practices. I built a huge practice, two practices in Arizona, my own, and then at Premise Health, I really helped build practices, build relationships.
Bonnie Rochman
So tell us what you're doing. What did you build? What did you put into place and then what is actually working?
Barb Regis
You know, someone is considered a survivor, technically, from the moment of diagnosis all the way through. But what I noticed here was people were getting invited or coming to Survivorship when they were done with active treatnebt, when they were done with surveillance, when they were way out. I was like, whoa, whoa whoa whoa, no, no no no. People need you in this program when the people feel like they need us. So I asked for latitude there. I said, if I get a patient who's in active treatment or even newly diagnosed, as long as they have a diagnosis of some sort of cancer, why can't we see them? Because there's something we can offer them, you know? And so I said just give me a chance. And so I went around and talked to some of the providers. I said hey, I know you're not referring too much. Just refer a couple of patients and just get feedback from the patients and see if it's worth it. Can you do that for me? And so I had a couple providers start taking me up on that. And I saw that the number of referrals coming from within Fred Hutch were pretty minimal. It was like, you know, less than 40% at the time. And now it's well over 60 to 70%, you know even more. And so once they realized, wait a second, these patients are getting some benefit from this. Why not?
And so you know, I've had patients come to me before active treatment and say, hey, what can I do to just feel stronger and healthier as I start on this journey? So I'm really clear with them. I'm like, listen, let's talk about diet, exercise. Let's get you a nutrition appointment. Let's talk about how you can emotionally start working with this. Like, maybe we should get a counselor right now or maybe we should wait. And so you meet the patient on their terms, whatever it is that they want. We're here to serve them. So it was really fun. And so I have several people that are stage 4. I had people that have recurrences that are scared to death about what's going to happen next that I see on a regular basis. And then I see people that aren't perfect candidates, those that are transitioning from active treatment into surveillance. They're the perfect ones because they see their oncology teams all the time. They're being supported all the time. Then the oncology team is like, hey, we're done. They're NED, we've done it, ka-ching, boom, boom boom, pat myself on the back, hey, see ya. Great news, I'll see you in three months. And the patient's like, uh-oh. You can feel like you're being dropped off a cliff.
And they're like, but I'm tired, but I don't feel well, like what do I do? So they're the perfect patient. They're ready to go, they're what can I do. And so, you know, it's been great. So, we're really expanding that concept across all of Fred Hutch right now. And so it's really exciting times to get that feedback from patients that they see so much value in this. Because what we're doing is just giving them a time where they can just be really open, organic about what their needs are and see how we can help them start progressing and thriving again. That's what it's all about. And so here, or here, or here. That's awesome. 60-70% of the patients seen in the clinic now are coming from Fred Hutch referrals, whereas when I started, it was much less than 50.
There are self-referrals. They come from other community providers, like Swedish. Yeah, you know, some of the Kitsap area. A lot of people out in the area.
Diane Mapes
We'll see patients from outside.
Bonnie Rochman
You had mentioned you have some international patients, right?
Barb Regis
Yeah, it's kind of fun. We have a couple of patients from Canada, a patient from the Philippines. There's one from Vietnam and what the skinny is like, they come over here twice a year to visit family and they heard about the clinic and they self-referred. They really want to dial in on what they can do to be healthier. They want to know what the state-of-the-art recommendations are. And they know Fred Hutch is the place to go. How do you think the word is getting out? Uh, it's, you know, what I learned in practice over these years is word of mouth. You treat people well, the word gets out on the street and eventually it happens. And that's why I begged for some time because I knew at year three, which is where we're at, the clinic would be full and it would be really thriving. It takes about three years to really get it going and get that word out. You know, Cancer Lifeline is a great resource, you know, Survivor Northwest, a lot of different places are just getting the word out, we get quite a few referrals, like I said, from the islands and stuff like that. It's pretty exciting.
Diane Mapes
Is that Team Survivor Northwest that you're talking about, a group for women cancer survivors?
Barb Regis
Yeah, they're great!
Diane Mapes
Now, Barb, we have at Fred Hutch, not just a survivorship clinic where people can come in and see you and your colleagues, but we also have a research program that'sled by Dr. Scott Baker and Dr. Eric Chow that you've mentioned. And then we also have Dr. Vidhya Nair who is also part of that. Survivorship is going to be divvied up a little bit differently now moving forward here at Fred Hutch.
Barb Regis
Okay, I'm going to do the best I can. So we're really thrilled to have Dr. Nair and Theresa Wittenberg to join us. And what they're doing is they are working with the different service lines to start integrating survivorship in the service lines when people transition from active treatment.
Diane Mapes
Just for our audience, when you say service line, that's not a term that most people use. You're talking about the different clinics, like a clinic, a lung cancer clinic. Yeah, different specialties. The different specialties.
Barb Regis
Yeah, the different specialties. It's going to be a program that's going to take a long time to launch because they're being very mindful and methodical about it. So they'restarting with, you know, GU first. They're launching that.
Diane Mapes
Genitourinary.
Barb Regis
Yeah, so you know, our prostate cancer folks, our bladder cancer folks, those kinds of things. They're sharing with that group first and then they're going todetermine which groups go next. And so they're really setting the stage for what this is going to look like system-wide across Fred Hutch. But you know it's something that's not going to happen overnight. It's going to take a while. But the idea is just like you know when you're in surveillance you just start talking about survivorship topics along with this and to help patients get more confident.
Bonnie Rochman
There was something that you said when we spoke initially which really stuck with me. And I'm wondering if you can talk a little bit about how you as a provider care for patients coming into survivorship. Specifically, you said you start by saying you're sorry. You don't even turn on the computer because you are so steeped in their story. That you know it upside down, back and forth, and you just talk like you're talking to a friend. So I was wondering if you could expand upon both of those.
Barb Regis
Yeah, I will be totally transparent. I don't ever turn on the computer when I'm in person with a patient. And the reason I do that is because I feel like I'm not treating the computer, I'm treating the patient. And I want to gain their confidence and I want to gain their trust and their knowledge. And I want them to know that I do know them inside out. Our nurse spends three to four hours on some of these patients. I spend an additional hour or so. And we really drill down to really get a feeling for each patient, so it's really nice and organic. You know, it's one of those things where you walk in the room and you just give them that chance to just tell you what they want to say. And there's times where patients have not had the opportunity to say things that they just need to get off their chest. So I will give you an example. A patient who shared with me that she had a year and a half of delay in diagnosis. And the reason was is because she was told, quote unquote, you are too young to get breast cancer. Yep. So she was probably initially stage 1. And by the time she was diagnosed, she was stage 3C. And unfortunately it made a difference in whether or not she was going to be able to bear children moving forward. She needed to get that off her chest once and for all so that she could finally start processing and healing.
That's why when I start each visit, I say, you know, basically I go, how are you holding up? How are you? And usually that's when it starts. And so at the end, I look at them and I go, I'mreally sorry this happened. I'm deeply sorry. But now that we've chatted about this, we need to start thinking about moving forward. How can I help you do that? And it'svery powerful. It's time when the tissues come out. It's a time when someone will say, You know how many people I've seen and no one's ever had the courage or thought about saying, I'm sorry. And I learned early on in my career, you're humble and it's okay to say you're sorry. It really is. And people sense, yeah, we're all human here, but they need to be validated. And they will say thank you. And sometimes they'll say, I need you to hug me. Is that okay? And I go, yeah sure. So do you really want to have the computer on in the room when that happens? Does it mean that I spend a heck of a lot more time doing my notes because I replayed the tape and all this and my notes are pretty extensive? It's worth it to me.
Diane Mapes
So, Barb, what are some of the things that you would recommend if someone came in and they had, in my case, I had double mastectomy, chemo, radiation, 10 years of anti-hormone treatment? What would be your concern?
Barb Regis
Well, I'll tell you based on whatever therapy you would have, you know, I'd want to, you know, make sure that you're aware of things like secondary cancers. So you know with certain kinds of chemotherapies like cyclophosphamide, for example, secondary cancers, radiation. So I want you to know that and your primary care provider know that and in the care plan, which I send to them, I go, please make sure you're doing a CBC every year. And so what happens sometimes is like, you'll see a little ditzel and you'll go, ah, it's probably nothing. I want the primary care provider to remember, oh, this person was on a certain therapy, I should work it up. And so with medications like Adriamycin, for example, if you're having issues with exercise or shortness of breath, chest pain, something doesn't feel right, please make sure you let your care provider know. And I recommend for example to the primary care provider, have a baseline EKG in the chart. To have something to work with so that if someone does come in with something, we'll have more data to work, with those kinds of things.
Diane Mapes
Make lifestyle changes too. They could get out and exercise more. They could look at dietary changes to make sure they're not taking in too much, you know, saturated fat or something like that. You got it. That would be the cardiovascular disease risk.
Barb Regis
Yep, and what's neat is if people are interested, I'm able to refer to one of our nutritionists for another appointment to meet them where they are, not only to talk about the cancer part of it, but a lot of the patients are really into working out and doing things, and so they're really curious about their macros and things like that. So we can give them kind of like a two-for-one there. So I really emphasize that. Exercise, absolutely, you know, is something we talk about, but I really want to make sure that patients don't do too many things too fast. We have guidelines, I get it, but I want to see what the baseline is and then very systematically, let's start, you know, working ourselves up. Let's not do things too fast. I don't want you to injure yourself and also let's, you know, be mindful. You know, we're recovering. We're not what we were before necessarily. And in normal aging, it's the same way, right? I'm a huge proponent for acupuncture for some of our folks that have hot flashes, peripheral neuropathy, someof the more mental health needs. You know, finding a good acupuncturist to work with is a game changer for a lot of folks. Sleep is juice. Sleep is another one. Yep.
Bonnie Rochman
I wonder — and thank you for all the time you spent with us, I know you actually have real patients to go tend to — so this is my last question. I don't know if you have anything additional that you want to ask, but I'm wondering when you meet with patients, do you tell them that you yourself are a survivor and why or why not?
Barb Regis
Yep, that's the first thing we do. When I introduce myself, I have the same thing I do, especially with telemed patients. I show them my ID and then I say to them, you know, we're going to have hopefully a really great conversation today, but I think if it's okay with you, can I give you a little background about myself and why I'm doing this role? And they're like, yeah, sure. And so I spend probably about two minutes telling them and sharing with them what I shared with you today. And then I always say,enough about me. Let’s not talk about me anymore. This appointment is all about you. And then, I segue into, how are you holding up?
Diane Mapes
That's great. Wow. I imagine that there are quite a few people here at Fred Hutch who went through cancer themselves and then came to work here. You, me, I know some of the other folks in our department in communications and marketing and a lot of the other folks that are staff at Fred Hutch. You want to do your part to take this disease down.
Barb Regis
That's right. One patient at a time, we're getting there too. There's so much hope.
Bonnie Rochman
Thank you, Barb. This has been really, really helpful. And Barb, thank you so much for joining us. This has been amazing. I'm Bonnie Rochman.
Diane Mapes
I am Diane Mapes. Fred Hutch News. Thank you.
