What to Expect After a Gynecologic Cancer Diagnosis

Podcast Transcript

Erica Newlin, MD:

Welcome to Ob/Gyn Time, a Cleveland Clinic podcast covering all things obstetrics and gynecology. These podcast episodes are intended to help you better understand your health, leaving you feeling empowered to live your best. We hope you enjoy today's episode.

Hi, everyone. I'm your host, Dr. Erica Newlin. Welcome to Ob/Gyn Time. During this season, we're focusing on topics related to gynecologic oncology, meaning cancers of the female reproductive organs. On this episode, I'd like to welcome Dr. Debernardo and Tiffany Jagielo, CNP, who will be talking to us about gynecologic cancer and what to expect if you receive a diagnosis.

Dr. DeBernardo, Tiffany, thank you both so much for joining me on the podcast.

Robert DeBernardo, MD:

Well, thanks-

Tiffany Jagielo, CNP:

Thanks for having us.

Robert DeBernardo, MD:

Yeah, thanks. It's a pleasure to be here.

Erica Newlin, MD:

Can you each tell us a little about your role in Cleveland Clinic and about your background?

Robert DeBernardo, MD:

Sure. I'll start. So I'm Rob DeBernardo, and I run the section of gyn oncology and see patients with gynecologic cancers. I've been here about 10, 12 years.

Tiffany Jagielo, CNP:

I'm Tiffany Jagielo. I'm a nurse practitioner in gyn oncology. I've been with the clinic for 17 years. I started out as a nursing assistant, and then a nurse, and I've been in gynonc for the last 7 years.

Robert DeBernardo, MD:

Working with me, unfortunately.

Tiffany Jagielo, CNP:

(laughing)

Erica Newlin, MD:

(laughing)

Robert DeBernardo, MD:

(laughing)

Erica Newlin, MD:

So, diving in. Many people may receive their cancer diagnosis from a primary care physician, primary gynecologist, or maybe even in the hospital or emergency room, and be referred to a gynecologic oncologist. Can you tell us about how a gynecologic oncologist or gynonc differs from an ob/gyn specialist?

Robert DeBernardo, MD:

Yeah. So we go through sort of the same training as an ob/gyn, and then following that, spend three or four additional years just doing the cancer-related stuff. So what we don't do any longer generally, is obstetrics. So we don't deliver babies, we don't do a lot of non-cancer gynecology. So it's mostly focused on surgery, as well as the chemotherapy aspect of these cancers.

Erica Newlin, MD:

And what condition specifically would a gyn oncologist treat?

Robert DeBernardo, MD:

So, any cancer of the female genital tract. So cancer of the ovaries, tubes, uterus, cervix, vagina... Which is very rare, and then the vulva, which is basically the skin of the outside of the genitals.

Erica Newlin, MD:

And what should someone look for when they're trying to find a gynecologic oncologist?

Tiffany Jagielo, CNP:

I think somebody that has a lot of expertise. There's a lot of resources on the internet now. Like new patients that we see will talk about Facebook groups that they see. I feel like a lot of the patients that we see are referred from their regular gynecology office, so they have, you know, the feedback of the doctors that they are comfortable with and are already taking care of them, and patient referrals as well.

Robert DeBernardo, MD:

Yeah, I think that's a great place to start. I mean, the internet's an awesome place, so you can generally get a good idea of people's personality.

Erica Newlin, MD:

And then in preparing for that first visit, what would you recommend someone bring to their visit?

Tiffany Jagielo, CNP:

I would say an extra set of ears, if they have a support person they can bring with them. And if they don't have that, just a notebook to jot down their questions, thoughts they may have... And just to kinda keep notes as we're talking through things, so that they can reference them. Because I feel like the initial visits are pretty overwhelming, and so they don't catch a lot of what we say the first time we have a discussion.

Erica Newlin, MD:

Mm-hmm.

Robert DeBernardo, MD:

The other thing I'd probably add to that is medical records. A lot of times, as you said, they're being referred from, "Oh, I was in the emergency room," or, "My primary care." We see patients from all over. It's nice when they're in our system 'cause we can see everything, but a lot of times people will be coming from other systems. So it's probably wise to have a copy of whatever pertinent medical information, because a lot of times that becomes very critical to our recommendations.

Erica Newlin, MD:

Great.

And I'm sure when people come they have a lot of questions, but are there any questions you would recommend someone ask at that first visit?

Robert DeBernardo, MD:

Oh, that's kind of a hard question to answer, just because of the scope of what we're doing.

Erica Newlin, MD:

Sure.

Robert DeBernardo, MD:

I think for most patients… Like Tiffany was saying, we have to take this in multiple different bites. It's very overwhelming to get all of the information at once, so I think having a notebook, taking some notes, and then thinking.

The questions that people should be asking that they don't, I think experience. I mean, very few people ask, "Oh, how many patients with this cancer do you see on a day, a week, a month, or a year?" That kinda thing. I think experience is really important when it comes to these type of cancers, 'cause they're, they've relatively rare.

Tiffany Jagielo, CNP:

I would agree with that.

Robert DeBernardo, MD:

Yeah.

Erica Newlin, MD:

And you've touched on this, in saying that people should bring all of the medical records that they've had, but are there certain things that you wouldn't... And again, this is kind of a vague, broad question, but things that would help to have done before that first visit? Sometimes people want to get in as soon as possible, but would it be better if they get their imaging and lab work done beforehand?

Robert DeBernardo, MD:

So that's a really great question, because the first interaction that we have, we want, that to be as productive as possible. And so there's always a trade-off, as, "Oh my God, I'm told I have cancer. I wanna get in immediately," but if you just show up the next day and we don't have a final biopsy report or we don't have imagine, it kinda limits what we can do. Do you agree, Tiff?

Tiffany Jagielo, CNP:

Yeah, I agree. And we've been trying to work on that specifically in our department. So we have been having some new patients see the nurse practitioners, and we can kind of talk to them about what is going on, what imaging would be helpful, do they need an ultrasound, a CAT scan? Tumor markers, have they had this workup? And then if they haven't, of course we can order that and then get them in with the appropriate surgeon. And if they have had it, kind of give our interpretation and what the next steps would be.

Robert DeBernardo, MD:

We try to kind of move very quickly with all of this, so we're doing multiple things at the same time. Some of that's even done before the patient's visit. So as they call to get scheduled, we're putting records together. And a lot of times before they come in to see us, they'll get a phone call from Tiffany, say, "Hey, you're seeing Rob next week, but we really do need a CAT scan. Let me help you get that."

So, we try to make it as efficient as possible.

Erica Newlin, MD:

Sure.

And then we've spoken a lot about the gyn oncologist and surgeon, but there are a lot of people on the care team for each patient. Can you talk about -

Tiffany Jagielo, CNP:

Yep.

Erica Newlin, MD:

... who's on the care team? Who might be-

Tiffany Jagielo, CNP:

Yeah.

Erica Newlin, MD:

... involved in their care?

Tiffany Jagielo, CNP:

It kind of depends on the patient's situation, and if we're doing strictly surgery or if it's a combination of surgery and chemotherapy. I think all of our care teams have a nurse practitioner, a nurse and one of the physicians. And then if surgery's involved, we have the surgery coordinators, who are reaching out to schedule pre-op and post-op appointments. If chemotherapy's involved, we have our chemo coordinators, the chemo nurses. We usually try and get our social worker to also see each newly-diagnosed patient, just so they have resources they may need and contacts.

Robert DeBernardo, MD:

We also have pretty strong interaction with our palliative care team. So some patients are having a lot of symptoms from their cancer or their therapy, and so they're part of the care team. And if their surgery happens in the hospital, that they're gonna be there, we have a very large inpatient team that has residents and fellows, PAs. So yeah, it's a big team. This is complicated stuff that we do, and, you know, as much as I like to take the credit for everything,-

Tiffany Jagielo, CNP:

(laughs)

Robert DeBernardo, MD:

... I mean, it takes a village.

Tiffany Jagielo, CNP:

We do also work pretty closely with radiation oncology too, so they have their own separate care team with a nurse and the physician as well. So there's a lot that goes into the care for each patient, depending on exactly what we're dealing with.

Erica Newlin, MD:

Great. And you mentioned palliative care... And we'll speak a little on this in the survivorship episode, but I always like to highlight that palliative care is not specifically end-of-life care, but helps with a lot of symptom-management and-

Robert DeBernardo, MD:

Correct.

Erica Newlin, MD:

... and might be involved early.

Robert DeBernardo, MD:

Yeah, for sure. I think honestly, the therapies that we give are life-altering and life-saving. At the same time, if you're gonna have to go through chemotherapy or you're gonna have pain from surgery or whatever, why not try to manage those symptoms as best as possible, so that you can live as well as you can?

Tiffany Jagielo, CNP:

And in the same sense, like with chemotherapy there are a lot of side effects that we manage really well, but I'll usually tell my patients if I feel like I'm not doing a good enough job... Or we need to think outside of the box with the medication that we don't generally prescribe that may help with this specific symptom, we like to bring palliative care on board because that's their specialty.

Erica Newlin, MD:

And then each cancer is staged differently, and we speak about that in the specific episodes, but can you explain what cancer staging means and how it might impact someone's treatment?

Robert DeBernardo, MD:

So it's kind of just a way for us to organize the cancer at the time of diagnosis. So in other words, Stage 1 cancers are gonna be cancers that are typically confined in the organ where they started, and haven't spread anywhere, and those cancers are almost all curable. As we move up the stage... Stage 2, Stage 3 and Stage 4, they've just spread further and further away. The more advanced the stage, the more serious the disease and the worse the prognosis in general.

So staging for each cancer's done a little bit differently, but we try to sort of organize the system so that we can kinda risk-stratify people. So people with a Stage 1 cancer, in general are gonna do very well. People with a Stage 4 cancer are gonna have a lot bigger fish to fry, so to speak.

Erica Newlin, MD:

Sure. And when speaking about treatment, chemotherapy might come up. Can you speak as to what chemotherapy is and what kinds of chemotherapies might be used in gyn cancers?

Robert DeBernardo, MD:

Do you wanna talk on that one?

Tiffany Jagielo, CNP:

Go ahead.

Robert DeBernardo, MD:

All right.

So, I'm gonna give you my like really oversimplified view. Chemotherapy... I'm gonna backup and make the question a little broader, if you don't mind.

Erica Newlin, MD:

Sure.

Robert DeBernardo, MD:

When we're talking about systemic therapy, this is something that we would say give by, into the bloodstream, so something orally or something through an IV. Chemotherapy's the first thing that we think of, and it's really nothing more than poison. The medications that are chemotherapy are designed to kill cancer cells, but they're gonna in general get into all your cells, which is why there are so many side effects, because they injure those cells. Our healthy cells are just able to repair that damage better than a cancer, so that's how they impact cancer.

Other systemic therapies now, today we have immunotherapy. So, you guys have all seen these commercials on television. Those are not chemotherapy drugs in that sense of the word. What they're doing is they're allowing your immune system to identify the cancer, and then your immune system is actually responsible for killing those cells. So in general, that therapy is gonna be a whole lot better-tolerated.

We have now gotten more sophisticated with chemotherapy, so we have something called antibody drug conjugates So, we take the chemotherapy and bind it to something that's gonna be very specific to the cancer, so when we inject that chemotherapy it goes right to the cancer instead of everywhere else, and then it is generally a little more, more effective at killing the cancer without as many side effects.

And then we have a whole series of drugs that identify targets that are important for these cancer cells. So they're not chemo, but they block a pathway that the cancer needs to survive.

So we've gotten very sophisticated in the way we treat the cancers. So I probably went a a little bit long, but I think it's important that when we say chemo, we're probably talking about a whole bunch of different options.

Tiffany Jagielo, CNP:

For sure. And I would just add to that, that for most of our cancer types there's more than one chemotherapy that we give. So most people are getting two drugs, sometimes three drugs at a time.

Robert DeBernardo, MD:

And it's helpful, because... Each of these drugs are gonna act in a particular way, and so by kind of giving more than one agent, we're treating the cancer more effectively.

Erica Newlin, MD:

And should someone expect that additional chemotherapy or additional treatment to be managed by their gyn oncologist, or by another physician?

Robert DeBernardo, MD:

Typically we manage all of our own chemotherapy patients, with very rare exception. Different practices across the country, and across the region, will practice differently. So some gyn oncologists just do surgery, others do both surgery and chemo. That's our practice model here, is both.

Erica Newlin, MD:

Great. So, something for someone to clarify maybe at that first visit.

Robert DeBernardo, MD:

Exactly.

Erica Newlin, MD:

And then, how is radiation used in gyn cancers? When might that discussion come up?

Tiffany Jagielo, CNP:

That depends on the specific cancer type. So for instance, some endometrial cancers, once we start with surgery based on the final stage from that pathology, they may need additional radiation based on their stage after that. For vaginal or vulvar cancers, sometimes it's also a combination of surgery, sometimes we start with radiation. And I'd say it's pretty limited use in ovary cancer, just depending on how that-

Robert DeBernardo, MD:

Right.

Tiffany Jagielo, CNP:

... disease is behaving in the specific subtype of the disease.

Robert DeBernardo, MD:

Cancer of the cervix is probably one of the cancers that we use a lot of radiation for, just because... If we find that cancer early, we can treat that surgically, but the more advanced stages, we're treating with radiation and a combination of chemo. So, you know, as Tiffany said, it depends on the situation.

Erica Newlin, MD:

Sure. And then, what support resources would you recommend to someone recently diagnosed with a gyn cancer?

Tiffany Jagielo, CNP:

I think we have a lot of great supports, specifically here in Taussig, information you can get on the first floor when you come into the building. The Gathering Place is another reference for families and patients newly-diagnosed with cancer. And like I had said before, I find a lot of online support groups and information that way, for resources.

Robert DeBernardo, MD:

Yeah, the internet's a fantastic place, but like Abraham Lincoln said, "Don't believe everything you read-

Tiffany Jagielo, CNP:

(laughing)

Erica Newlin, MD:

(laughing)

Robert DeBernardo, MD:

... (laughing) on the internet." But I think the internet's a great place, Facebook and Twitter, and there are a lot of support groups out there. I think there's something for everybody. So some people really do like the face-to-face piece, other people like the anonymity. So there's that, I think. Friends and family can also be a pretty helpful resource. It's awfully difficult sometimes to share everything that's going through your mind when you're dealing with a cancer and everything that's involved, with your spouse or your, you know, child.

Erica Newlin, MD:

Are there newer treatments for gyn cancers that excite you?

Robert DeBernardo, MD:

Tons. I mean, honestly, in the last couple of years... Tiff, what? We've had an explosion of new treatments.

Tiffany Jagielo, CNP:

Oh yeah.

Robert DeBernardo, MD:

Immunotherapy is really exciting. That's... You know, we're curing more people now with recurrent disease than I probably have in the rest of my career combined in the last couple of years, which is really exciting. And these antibody-targeted drugs... I mean, there are five, I believe now, and three of them have targets for gyn malignancies, which is huge. And we're moving into more sophisticated immune therapies for our patients. So yeah, there's a lot going on right now. I mean, it's a time to be very, very hopeful.

Erica Newlin, MD:

Great. And on that note, can you describe what a clinical trial is, and when someone might want to look into clinical trials?

Tiffany Jagielo, CNP:

Go ahead.

Robert DeBernardo, MD:

All right, I'll tackle this one.

Tiffany Jagielo, CNP:

(laughing)

Erica Newlin, MD:

(laughing)

Robert DeBernardo, MD:

So clinical trials in short, represent kind of our latest, greatest thinking in terms of what's going on with cancer. So here at the clinic, we have some of our own in-house trials. We have some cooperative group trials, so smaller groups of organizations, and then we have international trials.

And basically what we're doing, is most of these trials are gonna be a new drug, or compound, or a combination that we're studying. And you know, when you come to a place like the Clinic, that has these clinical trials, you can offer people therapies that they couldn't otherwise get. And so, that's really important.

So when we study these drugs, sometimes we have to learn about the toxicity, sometimes we have to learn about how efficacious they are, and what's the next best thing? So our clinical trial program is something that we're really proud of, and a lot of our patients are able to benefit from it.

Erica Newlin, MD:

Great. And just closing out, if you could give one piece of advice to someone with a new gyn cancer diagnosis, what would it be?

Tiffany Jagielo, CNP:

That's a tough one, but I think I would say, just give yourself some grace. Because depending on the day and exactly what you're going through, I think you're gonna have good days and you're gonna have bad days. Whether that's related to recovery from surgery, just emotionally and mentally processing everything, dealing with whatever stressors you have going on around you, just give yourself some grace and don't be afraid to ask for help.

Robert DeBernardo, MD:

Wow, that's perfect. I could've have... I mean, done. (laughing)

Tiffany Jagielo, CNP:

(laughing)

Erica Newlin, MD:

(laughing)

Well, perfect. Well, thank you both so much for joining me.

Tiffany Jagielo, CNP:

Thank you.

Robert DeBernardo, MD:

Thanks, Erica.

Erica Newlin, MD:

Thank you for listening to this episode of Ob/Gyn Time. We hope you enjoyed the podcast. To make sure you never miss an episode, subscribe wherever you get your podcast or visit ClevelandClinic.org/Ob/GynTime.