Moving Forward After Uterine Cancer Treatment: Surveillance Strategies, Testing, and Watching for Recurrence

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Unknown
Hello, everyone. We'll wait a minute to get started.

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Unknown
Okay. We're going to get started. Hello and welcome to today's webinar Moving forward after Uterine Cancer Treatment. Surveillance Strategies. Testing and Watching for Recurrence. I'm Keri Silverman, the uterine cancer program Director. Share. Before the presentation begins, I'd like to tell you a little bit about Share. Share is a national nonprofit that supports, educates and empowers anyone who has been diagnosed with breast or gynecologic cancers and provides outreach to the general public about signs and symptoms.

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Unknown
Because no one should have to face breast, ovarian, uterine, cervical or metastatic breast cancer alone. For more information about upcoming webinars, support groups and our helplines. Please visit our website at Share Cancer Support. All participants will be muted during the presentation. Once Dr. Mueller finishes presenting, we'll begin the Q&A discussion. Feel free to ask any questions through the Q&A section at the bottom of your screen.

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Unknown
Remember that Dr. Mueller is unable to give specific medical advice, so please keep your questions general in nature. We also have closed captioning available. You can enable this feature by clicking the live transcript button at the bottom of the screen and selecting the subtitle option. This webinar is being recorded and will be available on the share website soon.

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Unknown
Dr. Jennifer Mueller was one of our first speakers when we started Cher's uterine cancer program four years ago, and we're delighted to have her join us again today. And now I'd like to hand it over to Dr. Jennifer Mueller to introduce herself. Thank you, Kitty. It's such a pleasure to be on this meeting and to have an opportunity to talk to everyone who joined today.

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Unknown
Just wanted to introduce myself. I work at Memorial Sloan Kettering Cancer Center. I am a mine oncologist and at MSK CC. That means that I specialize truly in the surgical management of enemy oral cancer, ovarian cancer, cervical cancer. I work very closely with other specialty medical oncologist radiation oncologists, and I am the the section lead of our research group that is focused exclusively on uterine cancer.

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Unknown
It's an area that I'm extremely passionate about and feel very privileged to both research and directly care for patients who have gotten cancer diagnoses and to be able to help them achieve their goals and get them back into their active lives. So to me, this is just another way to connect as as much as I can with folks.

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Unknown
And hopefully this this time together will be a value to everyone. It's at this point, I'll be sharing my screen and my talk and just let me know, like wave a hand or something. Kitty, If you can't see it. Okay. So the topic that we have before us today is what happens after uterine cancer treatment. And I'd like to just start by saying, when we use that word uterine cancer, we're really focused on the most common uterine cancer, which is endometrial cancer.

00:04:01:11 - 00:04:17:10
Unknown
That's cancer is in the lining. And so this talk is about is focused on what do we do after we've completed and the mutual cancer treatment. What are surveillance strategies, testing and watching for recurrence?

00:04:17:12 - 00:05:03:22
Unknown
I have no disclosures at all. The outline, very briefly, is to talk about some very basic terms that we use in cancer care generally. So we'll define those terms to review different risks and risk of recurrence profiles. So what's the risk of recurrence or the cancer returning? If you have initially an early stage cancer versus a late stage cancer or what some people might term a high risk cancer versus a low risk cancer, to look at the current guidelines that we have that, you know, help us determine what makes a mutual cancer surveillance program for people to talk about the different sites of potential recurrence and how risk will differ across groups of people to

00:05:03:22 - 00:05:27:08
Unknown
go through a few frequently asked questions. Literally every time I have a clinic visit, these are the questions that I will be asked. So I think that these will hopefully hit home for for folks to review some of the side effects or costs around treatment and what some supportive strategies are. And then to very briefly touch on future directions that are focused on any mutual cancer surveillance.

00:05:27:10 - 00:05:59:05
Unknown
Okay. So these are, to me, the most important words that if we're using them, I'd like to make sure there's a shared understanding of what these words mean. And these are words that you'll have heard in visits or heard people talking about if they've been to visits. So what does it mean when you're in surveillance? This is where you're being closely watched for a given condition and you're not getting any treatment unless there are some changes in test results or an exam that show that the condition you have is getting worse.

00:05:59:07 - 00:06:30:21
Unknown
So during a surveillance period of time, there might be exams or tests or biopsies that are done to monitor what's going on, but no treatment different from remission. That's where you have no signs or symptoms of cancer. The cancer has essentially disappeared, but theoretically it could still be in the body. Recurrence is a word that we use to say the cancer has returned after a period of time where the cancer wasn't detected at all.

00:06:30:23 - 00:06:50:17
Unknown
It can return where the cancer used to be or it can return to a different place in the body. And that's the word cure, which is a word that we when we get to use this word, it's an incredible word. That means the cancer has gone away. No more treatments needed and the cancer is not expected to come back.

00:06:50:17 - 00:07:19:12
Unknown
And in doing cancer follow up, we typically use the word cure when someone has been in remission for five years. I really like this alternative definition of cure, and that's through the American Cancer Society. This also can apply to the word cure, and that is to heal or restore health. And I think that's another really important emphasis that I try to be mindful of when thinking about the idea of cure.

00:07:19:14 - 00:07:49:02
Unknown
So this is a really common question. I'll get this question. When someone is newly diagnosed, no treatment yet. I'll get this question. When someone has completed treatment, I'll get this question. When someone is cured. This question is on everyone's minds, understandably so. What is my risk of cancer coming back? This is a difficult question to answer directly. And so I want to just say to folks who are on this meeting that if you don't feel like you're pinning down a clear number, that is because a lot of factors can go into this.

00:07:49:02 - 00:08:13:17
Unknown
And so doctors typically are trying to speak in a factually accurate way. That also can give you the sense that, you know, we don't have a crystal ball, but we do have some studies that that guide us a little bit towards numbers. So in general, about 20% of patients diagnosed with enemy oral cancer will experience recurrence. That's one in five people.

00:08:13:19 - 00:08:40:00
Unknown
And for the most part, those recurrences will happen within the first two years of completing all their upfront treatment, including surgery, medical therapy, radiation therapy, any of it. But the risk of recurrence isn't the same for everybody. So on the right side, you'll see this bar graph of five year survival across patients with enemy oral cancer. These are national statistics and localized, which is shown here in dark green.

00:08:40:02 - 00:09:07:00
Unknown
Those are stage one uterine confined enemy oral cancer patients. You can see their five year relative survival is around 95%. Regional shown in this lighter green or even distant recurrence or distant disease where these are folks who present with lymph node positivity or disease in other areas of their body. When they're first diagnosed, it's different. It's 70% or even down to 20%.

00:09:07:02 - 00:09:31:22
Unknown
These are big populations of people with a lot of variation even in these groups. But you can see that that 20% number doesn't apply to these localized folks versus regional folks. So the difference can be literally based on the stage that someone is diagnosed with when they're first diagnosed with cancer. So stage will matter. The cell type very much matters.

00:09:31:22 - 00:09:50:10
Unknown
And we'll talk about that a little bit more through this talk. Whether you have a high grade cell type or a low grade cell type, how old you are when you're diagnosed these none of this is modifiable, right? This is just these are the facts. We know that for folks who are over 65, their risk of recurrence is slightly higher.

00:09:50:11 - 00:10:21:20
Unknown
And whether you need treatment after surgery and whether you've completed treatment after surgery also can matter. So a lot of treatment truly is designed to reduce the risk of recurrence, to prolong quality of life and survival. And so completing treatment also will matter. So these are some areas that I think in the early stage and the mitral cancer that this is these are concepts that I get asked a lot about and I want to clarify.

00:10:21:20 - 00:10:43:05
Unknown
So for cancer, that is stage one and there's a drawing here to show you that is cancer that's confined to the uterus itself. There's even some sub staging and stage one where it could just the cancer could be in the uterine lining and not go anywhere at all. There could also be some little bits of invasion into the wall of the uterus.

00:10:43:05 - 00:11:07:06
Unknown
All of that still stage one. Stage two is where the cancer starts in the lining of the uterus, but could extend down into the cervical part of the uterus. So those two features matter. Even in this early stage, early stage disease. Then we talk about tumor grade and sometimes people are a little confused. Grade and stage aren't the same thing.

00:11:07:11 - 00:11:27:08
Unknown
A tumor grade is just is the tumor, you know, aggressive cell type or a less aggressive cell type? Not says nothing about where the cancer cells have actually spread to. So although a low grade cell type is generally not very aggressive, obviously, if it's spread into the wall of the uterus or cervix, that's a different stage of cancer.

00:11:27:08 - 00:11:52:08
Unknown
So we do spend a little time trying to explain the differences between grade and stage. And the other thing that we try to give a visual or explain is what is this lymph node vascular invasion concept? And so this is a picture to show you that this is something pathologists look at under the microscope. So lymph vascular invasion is where cancer cells can be seen under the microscope.

00:11:52:10 - 00:12:33:05
Unknown
Going into the vessels here you can see vascular invasion and you can see a lymphatic channel in a cell, the lymphatic invasion of a tumor. So this is this does not mean that cancer spread outside of the uterus at all. This is something that the pathologists will look at under the microscope inside the uterus. And so this all relates to whether your cancer is at risk of coming back or not, because when cancers are stage one and stage two, we look at a grade, we look at lymph node vascular invasion, we look at spread in the uterus as as different flags on whether you need treatment after surgery or not, and whether your risk of

00:12:33:05 - 00:13:04:04
Unknown
the cancer recurring or coming back is higher or lower compared to a different stage or different grade of cancer. The highest risk, though, and I think this would make some sense, is if the cancer has spread outside of the uterus. And so these are some pictures to describe what that means. So for stage three, generally, although it can mean that there's vaginal involvement or ovarian spread of disease for the most part, it's if the lymph nodes are involved.

00:13:04:06 - 00:13:24:01
Unknown
And so stage three is what we would consider high risk of the cancer returning. And we we always recommend treatment after surgery, even when there's no visible cancer left behind. You could do imaging and exam. You could look at time of surgery and it's all out. But we just know that there's still a very high risk of the cancer returning.

00:13:24:03 - 00:13:59:16
Unknown
Stage four is a similar scenario of high risk, and this is stage four really means beyond lymph nodes or local to the uterus, cervix, ovaries, vagina. The cancer has spread to organs beyond the pelvic area and beyond the lymph nodes. And when we think about risk, if if you're talking about just what is my risk when I'm early stage versus advanced stage, general numbers are early stage risk of recurrence is around 5% compared to advanced stage like stage three and four, where the risk of recurrence could be as high as 40%.

00:13:59:18 - 00:14:25:10
Unknown
And what we do with treatment is try to reduce that risk as much as possible. But what I would always say to folks is and it's just honest truth, is that the risk of recurrence with great surgery, great treatments, no visible cancer at the end of your treatment is never 0%. And so that's why surveillance and seeing your doctor at regular intervals is very important.

00:14:25:12 - 00:14:57:05
Unknown
So surveillance guidelines, I think this is this one slide is probably one of the most important of this talk. And that's because if you talk to ten different people who are in surveillance for any mutual cancer, you may get ten different journeys of how often they're being seen by their doctors. What's happening at their doctor's appointments, and and whether or not someone could articulate could say to you, my risk is low, intermediate, high, you know, and any of this, it can be very confusing.

00:14:57:05 - 00:15:21:16
Unknown
And when people compare notes, they can see a lot of differences. So I've included surveillance guidelines at MSK, which is where I work. And you can see here, this is the general guidelines that we use. We think about folks in low risk, intermediate risk and high risk. Low risk would be a low grade cell type that maybe didn't even go into the wall of the uterus.

00:15:21:16 - 00:15:43:13
Unknown
That's probably the most easy to spot. That's a low risk cancer. It's removed with surgery. Most folks don't need any treatment after a surgery for a stage one low grade cancer and so those patients will see me every six months for the first year, once a year after that. And when I see them, I'll do a pelvic exam.

00:15:43:13 - 00:16:06:11
Unknown
We'll talk about any symptoms they may be having and if I have any concerns, I might order some imaging, but I won't routinely get any imaging. Intermediate risk might be people who have one or more risk factors like lymph node, vascular space invasion or a high grade cell type, maybe involvement of the uterine wall or the cervix. And again, you know, it's the same idea.

00:16:06:11 - 00:16:28:12
Unknown
They're being seen at some interval, but those intervals change. So the first year we see people in that category more frequently every three months and the second year every six months, we start to de-escalate how frequently because the risk of recurrence will drop over time and then once a year thereafter. And again, no routine imaging for people in this intermediate risk category.

00:16:28:14 - 00:16:53:16
Unknown
High risk is, you know, the advanced stage, stage three, stage four. We were concerned about the risk of recurrence. And so those folks will see very frequently in the first two years every three months, and then de-escalate at year three. And again, no routine imaging unless we, you know, are concerned with something on exam or something that we're hearing when we check in with people we don't routinely check, see a12 fives.

00:16:53:16 - 00:17:21:00
Unknown
We don't routinely do pap smears. And this is our institutions way of, you know, we have 12 different surgeons. So this is our way of trying to standardize. I will say, though, we share these visits with medical oncologists and radiation oncologist. So if you go back to an intermediate risk person or a high risk person, I might be seeing them twice a year because I'm sharing on a team with someone else who's also taking care of someone.

00:17:21:00 - 00:17:51:13
Unknown
And so together we see this person four times a year, if that makes sense. Now in the middle is the Society of Gynecologic Oncology is recommending and this was published a few years ago, you can see instead of low, intermediate and high risk, we have low risk, high risk. It's very similar, though it is checking in with people 2 to 4 times per year, more frequently, a first, less frequently later, and no indications for pap testing.

00:17:51:17 - 00:18:27:13
Unknown
No real indications for CEA 1 to 5. And imaging is really just when we're concerned about something. So when we feel that it's indicated and then you move over to the far, far left where we have the NCCN guidelines, the standardized national guidelines for all cancers and for the in the Metro cancer guidelines, this is what's written. This is examination every 3 to 6 months for the first few years, then every 6 to 12 months up till year 5k1 25 can be checked if it was elevated initially imaging again as indicated.

00:18:27:15 - 00:19:02:06
Unknown
And they also add in some language around educating people on symptoms of recurrence, some of the important interventions around health and wellness and some of the ways that we can help people live better from a quality of life standpoint as people navigate side effects from treatment. Now, I've written kind of in Bold and blue at the very bottom of the slide, 80% of recurrences will be detected by a good physical exam and a doctor and and a person really discussing symptoms together at a visit.

00:19:02:06 - 00:19:27:12
Unknown
That alone gets 80% of recurrences. And there have been studies that say, well, what if we fold in routine CAT scans or MRI's or PET scans? We have not seen any data that show a really big increase in this number. So it's you know, when you think about what are the side effects of imaging can be and the costs and the time and everything, we've we've not been able to demonstrate that.

00:19:27:12 - 00:19:53:20
Unknown
It really adds much. So that's why you'll see here, despite your personal experience, perhaps why imaging is not routinely indicated so this is just a single slide on what do we mean symptom review and what do we mean imaging when indicated So common symptoms that I'm listening for when I am meeting with my patients is when someone saying, you know, something new or persistent for them vaginal bleeding.

00:19:53:20 - 00:20:18:13
Unknown
Absolutely. I want to I want to do an exam. Or if they're talking about rectal bleeding, I want to do an exam and perhaps have a GI evaluation, gastrointestinal evaluation. If someone's got pain that's new or persistent for them coughing is another symptom. I definitely want to hear about weight loss. That's not intentional. Any kind of headaches? A low level fatigue we call lethargy is a red flag for me.

00:20:18:13 - 00:20:39:09
Unknown
I want to hear about that or any bumps in the body, particularly in the neck or the groin area. And when I am thinking about ordering imaging tests, I am listening for new symptoms concerning symptoms that may help me decide on imaging or if I'm doing an exam and someone feels great, they have no problems. They're not talking to me about anything.

00:20:39:09 - 00:21:09:03
Unknown
But I myself am feeling or seeing something on an examination, like a bump or some something new in the vagina. I may want to do a biopsy or additional imaging, and then the type of imaging I order might totally vary depending on the question I'm asking. So it's not right or wrong. If someone's getting a CAT scan or a PET scan ordering an ultrasound or an MRI, it's really the doctor is thinking through, you know, based on the imaging strengths and weaknesses, what's the best test?

00:21:09:05 - 00:21:28:11
Unknown
And this is a picture. These are pictures over to the right on pelvic exam. These are things you can find on Google images. I like them, though, because right now you can see here from a side view, the uterus is still in the pictures. And obviously after surgery, many, many, many people with an image of cancer will have had a hysterectomy.

00:21:28:11 - 00:21:48:06
Unknown
So obviously the uterus and cervix wouldn't be in the body for someone who's having a pelvic exam. But I think you can appreciate from these pictures that there's a view of the vagina. There's a view at the very top of the vagina where the uterus used to sit. And that's a very common spot for cancer if it's going to come back for it to come back.

00:21:48:06 - 00:22:13:08
Unknown
So getting a view of the vagina, which is why we use a speculum, we can look with our eyes and why we do a pelvic exam with our hands is because looking and feeling in this work in this particular area is very important and very high yield. Now, I mentioned risk of recurrence. It's, you know, it's not like only one spot, but the vagina really is the most common place.

00:22:13:08 - 00:22:35:12
Unknown
So that is why pelvic exam is important. We really although there are some situations where I'll do telehealth for folks within a mutual cancer, like if they just had a CAT scan or a local gynecologist examine them. I really do think the pelvic exam is important, and that's because most recurrences are in the vagina. There are also recurrences in the belly cavity.

00:22:35:16 - 00:23:00:18
Unknown
We call that peritoneal the lining of the belly lymph nodes, liver, lung, bone, brain and the genital area. I changed the font size to give you a visual clue of really just how common these are, and they're really uncommon in the brain bone genital area, thankfully, other than the vagina, of course. And then, you know, trying to figure out like beyond pelvic exam, when do we order imaging?

00:23:00:20 - 00:23:29:07
Unknown
Well, it's based on symptom review, physical exam, and whether we're worried about, you know, the potential for something missed. We sometimes order imaging in that situation. Now, frequently asked questions. I have three of these because I get these questions every week, every single week. Should I have a pap test when I'm in surveillance? And the answer is no, not for endometrial cancer surveillance.

00:23:29:09 - 00:24:00:22
Unknown
If you had abnormal pap smears before surgery like you've had abnormal paps and maybe a cone or a sleep in your past, there are still recommendations in place for people to have vaginal pap smears. For that reason, but it isn't for endometrial cancer surveillance. And the reason is, although there there was a time where women and and people within a mutual cancer would have pap tests for the indication of and cancer screening, that proved to be no evidence to support it.

00:24:00:22 - 00:24:22:11
Unknown
It was not high value. It did not improve outcomes or detection of cancer over a physical exam, over actually looking and feeling in the vaginal area. So pap smears really are not in evidence based approach and you do not need them, which is why some people might even have had a period of time where they had pap and now they don't.

00:24:22:13 - 00:24:46:19
Unknown
I also get asked if there are any blood tests that I should be getting, and the answer is not routinely for most people. If you had an elevated C 1 to 25 before your surgery, your treatment, it could be a useful test after you've completed your treatment. And some doctors do order k 1 to 5 before surgery, particularly if you had a cancer or that was the serous cell type or carcinoma sarcoma.

00:24:46:21 - 00:25:07:03
Unknown
Sometimes the C 1 to 5 is elevated in situations like that. So a doctor may have ordered this test and if it was elevated, they may continue checking it. But if you didn't have one of those cell types or you did, but nobody checked your C 125 before surgery, it's really a useless test. It's hard if you have no comparison.

00:25:07:05 - 00:25:33:23
Unknown
And so we don't actually have evidence based blood testing approved for the routine screening of enemy trial cancer. The other question I very often get will be what imaging should I be getting and how often? And this is an area of tremendous diversity. If you compare notes with people. And yet the real answer is I showed you on that very important side, there is no routine imaging that's indicated Frontier Mutual cancer surveillance.

00:25:33:23 - 00:26:02:09
Unknown
And that's because we don't have any evidence that routinely doing imaging for people when they have normal exams and no symptoms will improve detection or prolong their survival. And that is, you know, continues to be an updated finding. But in actual practice and I just need people to hear this, that if you were diagnosed with advanced stage or high risk individual cancer, you do typically get imaging once or twice a year for the first few years.

00:26:02:09 - 00:26:22:13
Unknown
And this is true here where I work in my own practice. And that's because there is a concern, rightly so, that if we could detect recurrence sooner and offer treatments, maybe even more than one, like maybe surgery and medical therapy are options. If we can detect the recurrence sooner, let's do it. But it really is a shared decision.

00:26:22:13 - 00:26:44:06
Unknown
And I do have a range of patients who find the scans to be anxiety provoking. They don't think that they're helpful. They're not worrying about recurrence. In the same way that I might think they are. And so we we make a decision to de-escalate on imaging. Others are quite worried and frankly, on their fourth or fifth year in remission, still want scans.

00:26:44:06 - 00:27:12:14
Unknown
And so, you know, there's a lot of variety out there in terms of scan frequency. The other kind of unique population are those who've had their ovary spared. So people under the age of 50 who may have their ovaries still after surgery, these are typically very low risk, early stage people. We will in some cases discuss ultrasound or even MRI for the first few years to look at the ovaries after treatment.

00:27:12:16 - 00:27:39:08
Unknown
So there are costs within a regional cancer treatment. And I think in surveillance, in the time of surveillance, this is an area where we could really we could do so much better connecting and talking and spending time with everyone who is, you know, you're done with your treatment, you've done it, you're in remission. But now what? You know, there's a lot of things that happen to your body and to your in your general wellness.

00:27:39:10 - 00:28:11:13
Unknown
You might have post-surgical pain that you're either dealing with short term or long term. Fatigue can can persist lymphedema, which is swelling in the legs. We don't see as much anymore, thankfully. But some people it's a chronic problem and all of us can develop lymphedema over our lifetime, even without treatments around and mutual cancer. But if you have lymph nodes removed radiation, these all can accelerate the risk of lymphedema, numbness, tingling, pain in the feet and hands.

00:28:11:13 - 00:28:40:00
Unknown
Typically, this is a chemotherapy related side effect gaining weight, menopause. You know, if you're under 55 years old and you've had surgery in your ovaries removed, that's a surgical menopause and that can be very abrupt pain with sexual activity, that vaginal dryness, particularly with radiation, but also just it's a menopause related symptom and then mental health, depression and anxiety.

00:28:40:02 - 00:28:59:01
Unknown
The the aspect of Vulvovaginal health is something that I do definitely talk about with my patients at surveillance appointments, and I try to bring it up rather than waiting for someone to ask me because I want to make sure we're talking about things that that are important and giving openings and space for people to raise any issues that they may be having.

00:28:59:03 - 00:29:25:03
Unknown
I encourage everyone to consider the use of a vaginal moisturizer, and that's different from a lubricant. Moisturizers are a daily thing. You can literally use them up to five days a week. They can be internally on the vagina, also externally on the vulva, which are the outer lips here around the vagina. These are some of the hydrating moisturizers and natural oils that are recommended by our sexual health professionals at MSK.

00:29:25:05 - 00:29:51:03
Unknown
And so I've listed them here. These are over-the-counter you can buy on Amazon or in a drugstore, and they frequently come with applicators, but they can also come in tubes. And then just a little note to never use petroleum products because it will increase the risk of infection and irritation. But moisturizers you can use immediately. You could use this any time before, during and after treatments.

00:29:51:05 - 00:30:21:11
Unknown
And it can be very helpful for just general health of the Vulvovaginal area. Lubricants are also helpful. They're helpful for when you might have a dilator kit that you're using or sexual activity or a vibrator. Lubricants are not the moisturizer, which is a daily kind of treatment for vaginal and vulva. Our health, this is for use. And so water based lubricants and I have some listed here from again our sexual health professionals at MSC.

00:30:21:17 - 00:30:44:13
Unknown
But also almond oil can be helpful and some sell silicone based lubricants can also be helpful. And again, this can be internally and externally. Just one slide on dilator is because I try to bring this up with every visit. Are you using your dilator? Is how is it going? How frequently are you using them? Were you ever taught?

00:30:44:15 - 00:31:08:13
Unknown
If you haven't been taught and you were given a kit, ask your doctor. You can have a teaching session. If you were taught, but you feel like you need a review, ask for it. It's so helpful. So when I'm doing pelvic exams, I can usually tell when someone's using their dilator because the vaginal stretching as its health in general, particularly with moisturizer use, can really be quite improved.

00:31:08:15 - 00:31:47:06
Unknown
It also makes pelvic exam so much easier, ideally less painful. And that's something I definitely want for people is not to dread the pelvic exams. It also can decrease pain with penetration. And so for penetrative intercourse, this can be very helpful. Using a water based lubricant is a wonderful way to use the dilator, cause I actually advise people to typically before using dilator is to do a few key goals, apply some water based lubricant to be very slow about increasing the dilator size and pick two or three, maybe four times a week.

00:31:47:08 - 00:32:08:06
Unknown
I call it temptation bundling or bundle it to something so if I use my dilator for 10 minutes, then I, I don't know. I get to read another chapter of my book or I get to, you know, call that friend. I don't know, pair it to something that you really do want to do. If you're like dreading the day laters, if you're sexually active.

00:32:08:06 - 00:32:29:06
Unknown
That kind of counts as a session with the dilator. So for some people, they're sexually active pretty routinely and they've drifted away from using their dilator and that's okay. I would avoid daily use of dilator because you can get a lot of irritation and pain. So on off days you could do keyhole exercises or just take a break on your off days.

00:32:29:08 - 00:32:55:07
Unknown
Pelvic floor health is another area that I try to check in on. And you know, this is something, again, that if I don't ask, you don't always get the story. So pelvic floor health is a big deal after hysterectomy, radiation treatments, and it can be very helpful for things you may not even think about. Like urinary incontinence or constipation, pain with intercourse or just general pelvic pain.

00:32:55:09 - 00:33:17:18
Unknown
Pelvic physical therapists are now in most communities. It's a it's an absolute profession. We can prescribe pelvic pain to people. They have a lot of modalities, different ways, not just some of these exercises that I have a picture of over here, but even things like biofeedback. And, you know, it's a real it's a special discipline with some wonderful and dedicated physical therapists.

00:33:17:19 - 00:33:39:09
Unknown
And their goals are to help you improve with movement, your mobility, and to reduce your pain. And, you know, I, I would encourage everyone to consider that menopause is another area that I think we could do a great a much better job talking about. I'm happy to see that in some forms at least, this is getting more time and attention.

00:33:39:09 - 00:33:59:12
Unknown
This could be a talk in and of itself for many folks who are diagnosed with enemy oral cancer. You'll have already gone through menopause. The typical ages are on 51. But the definition is if you haven't had a period in a year that's menopause. The transition can take years. But the actual like I'm done with periods is a year.

00:33:59:13 - 00:34:27:11
Unknown
It can be very abrupt if you have your ovaries removed. So if you're still having regular periods and then you have surgery or treatment and you know your ovaries removed, that's that's a much different menopause than someone who's going through it in a in a way that their body is ready for and timed for common symptoms. Many will recognize many on this talk and this call will recognize hot flashes, vaginal dryness, changes in mood.

00:34:27:13 - 00:34:54:03
Unknown
A big one is sleep disturbance and bladder dysfunction. And although for most people any mutual cancer in their background, we are not going to recommend hormonal therapies because many enemies of cancers have hormone receptors. So we're always a little bit concerned about giving even local estrogen in those situations. We do have non-hormonal options, particularly for hot flash management and vaginal dryness.

00:34:54:03 - 00:35:15:14
Unknown
And I've listed some of the medications that are currently approved and in regular use for hot flashes. If these don't look familiar to you. And this is like, wow, this is news to me, definitely bring this up to your doctor, to your team, because these can be very helpful. I've had some people who say I tried it. It didn't really other people.

00:35:15:14 - 00:35:35:18
Unknown
It was a game changer for them. So the message I want there is if you're miserable, you don't just have to be at home miserable. You can bring these issues up to your doctor and talk about them and if there's any way to help, it's just a great way to get some help. So again, this these each of these slides could be talks in and of themselves.

00:35:35:18 - 00:36:02:12
Unknown
But I think it's worth bringing up physical health and nutrition because we've done just a terrible job, I think in health care of like how how do we even do this? And it's one thing to put these recommendations. I put them in this slide two and a half a week of aerobic activity, some muscle strengthening activity, a couple of days a week, getting a good night's sleep and supplementing with calcium and vitamin D, But like the real magic to me is how to do that.

00:36:02:12 - 00:36:37:03
Unknown
And I do think have been in conversation with my patients is helpful. I think not just, you know, throwing these recommendations at someone as if that's easy to do, you know, particularly if you've gone through treatments, surgeries and all the side effects I just listed, including fatigue. You know, this list can seem impossible. So I just say start somewhere, pick something and don't make it so manageable that it's almost like laughable that it's a new habit.

00:36:37:03 - 00:36:56:23
Unknown
Like when I wanted to start exercising regularly, I think I chose like 10 minutes a week or something. And this is a true story, just 10 minutes a week. And it was so easy. It was like, okay, I can do that. But that's exactly the kind of habits that you can build successfully. If you say, okay, starting Monday, I'm going to exercise an hour a day.

00:36:57:01 - 00:37:23:05
Unknown
Of course, even even the most committed, you know, disciplined individual is going to have circumstances that make that habit hard. So, you know, just trying to be giving yourself lots of grace, lots of room, finding an accountability partner can be really helpful and then not shaming yourself. If if your goals aren't you aren't hitting your goals, giving yourself so much encouragement and and praise for trying.

00:37:23:07 - 00:37:49:13
Unknown
And if if this slide is off putting to anyone, just I want to remind everyone on this call that everyone is struggling with getting good sleep, staying active and eating well. This is this is a broad problem. And so it is particularly helpful when you're a cancer survivor and in surveillance to take great care of yourself. But the ways we do it, I think that's a conversation.

00:37:49:15 - 00:38:13:08
Unknown
And so I love to have this conversation with people, but in a way that's supportive and we could we could do better with that. This is a to me, I could say the same thing about emotional and psychological well-being. You know, one of the most important conversations I have is when people are done with their treatment, they say, you know, everyone's like high fiving and saying, I'm so I should be so excited and isn't this great?

00:38:13:08 - 00:38:37:02
Unknown
And I'm sitting here struggling because I'm worried or I have financial, I have medical bills or my relationship is not the same because, you know, having intercourse isn't the same or, you know, I'm I'm frightened of the cancer. And there's a lot of things in our headspace that can really make surveillance and survivorship and cure all these things, kind of not the celebrations we thought they could be.

00:38:37:04 - 00:38:58:22
Unknown
So I would just go back to exercise and nutrition and rest whenever I'm feeling overwhelmed. I can tell you that if I get outside and move my body, if I take it like if I can take a nap, if I'm putting good foods in my body and avoiding triggers like alcohol or too much caffeine, that automatically lowers my overwhelm.

00:38:59:00 - 00:39:18:12
Unknown
It might be the last thing we reach for, but it does help. And then there's also like, I really think therapy and mental health is a lot like going to the gym. Like, it's just it's like exercise for your head, for your headspace. I think it would be great if everybody had a therapist, frankly. It's just like a wonderful support.

00:39:18:13 - 00:39:46:04
Unknown
And when you've gone through as much as you have, I think having therapy and support groups can be invaluable. There's a lot of like apps and groups that can help with strategies around managing stress. I also have heard from so many survivors that social engagement, whether that's, you know, book book groups, church groups, support groups, close friends, friends that really amplify you bring out good things in you.

00:39:46:09 - 00:40:13:09
Unknown
Staying connected in that way can be very helpful. And then please never forget that the hospital social workers, if there are medical bills that are like really stressful to to pay for or just the costs of time away from work there may be benefits in the hospital are ways to be helpful so that are not just crushed under debt from the care that you really needed.

00:40:13:10 - 00:40:34:09
Unknown
And this visual here is just like another way to think about it. As you know, avoid the rabbit hole of web searches, connect and lean on support systems. Radical self-care. You know, when in doubt, take a nap. I feel like I could talk about this for a long time and really try to connect with my patients every time I see them.

00:40:34:11 - 00:41:00:17
Unknown
In general, health matters to please see your primary doctors once a year. Don't forget that they're a part of your health care team and they they provide a wonderful service of keeping your whole self on track. Annual flu vaccine has really helpful. And then this is just an update on recommended screening tests. And I put it here to remind us, if you're on active treatment, you know, we usually pause on screening because you need that treatment and you wouldn't go off the treatment to do something else.

00:41:00:17 - 00:41:25:19
Unknown
So screening test should be done when you're in surveillance, when you are in remission. Colon cancer screening has now changed to age 45 from 50, and most folks kind of forget about lung cancer screening. So if you were a former smoker or current smoker, low dose CTS start at age 50 annual mammograms and then bone mineral density is usually around age 65.

00:41:25:19 - 00:41:52:19
Unknown
But risk can change. So that's something to talk to your doctor about. All right. Just a few slides and then we can go for Q&A. And I see there's quite a few. Q&A is flagged. So future directions that I think are interesting for us to think about. This is an awesome study, like a randomized study in surveillance. This is social interventions for support sharing, treatment for endometrium, cancer and recurrence.

00:41:52:19 - 00:42:18:17
Unknown
The sister study. This is led by Dr. Kemi Dahl from the University of Washington. And you can see websites, phone numbers this is a study that is underpinned by the idea that we know enemy oral cancer is increasing in incidence. Even death rates are increasing. Year to year, and it is most common among black women. And the highest risk, most aggressive cancers are affecting black women.

00:42:18:19 - 00:42:49:19
Unknown
And so this study is a randomized trial that is assigning patients to one of three groups, one on one support group support or educational support. And you can sign up for this study. It will compensate you for completing surveys. And I'm so excited. See these results. It's really focused in on the surveillance window of time and to see if completing treatments is easier depending on one of these interventions.

00:42:49:21 - 00:43:08:10
Unknown
We also, I do think and I talk to my patients about this, I think I I'll be wrong the minute I say in a few years, maybe 5 to 10 years from now. I do think there will be blood tests that we can we can actually say are evidence based for detecting cancer. And I think it will come in the form of circulating tumor DNA.

00:43:08:12 - 00:43:38:20
Unknown
And we do have some work that's being done in this space. And this is where you basically take a tube of blood and in everybody's bloodstream, we can detect, you know, various little snips and bits and including cancer, cancer cells, little fragments, and that's called circulating tumor DNA. And so there's ways to take a blood sample and actually isolate the cancer cell fragments in in bloodstream.

00:43:38:22 - 00:43:55:15
Unknown
And what we're doing right now is a lot of studies to try and make it valid. So, yes, we can it's a proof. We can prove the concept of it, but that's not enough for it to be a truly useful evidence based screening test or monitoring test. But I would say keep your eyes open for these types of studies.

00:43:55:17 - 00:44:15:03
Unknown
Right now. There's nothing that I would I would say is like prime time ready to go, Although there are a few commercial commercial tests out there, I don't think they're really, truly ready to do the work that we need them to. And this is just a slide showing it at MMS, KCC, We are working on this as well.

00:44:15:05 - 00:44:38:02
Unknown
We have a study where we looked at patients within a metro cancer and we took blood before their surgery after and then at six month intervals and it needs refinement. But we were able to show, particularly for advanced stage patients, we were able to detect recurrences using this type of method. But it needs to be useful for more than just the high, high risk advanced stage patients.

00:44:38:02 - 00:45:06:23
Unknown
We want this to be a useful blood test for for anyone diagnosed with an immediate cancer, for it to be truly useful. So more work in this space and then I do think probably a few people on this call are familiar with the Cancer Genome Atlas. This is an old study from 2013 looking at several hundred and a mutual tumors, and very sophisticated sequencing studies were done to try and figure out if we could do more than grouped them by cell type.

00:45:07:01 - 00:45:33:23
Unknown
And what what happened from this study was practice changing. So what what this group did was show there are four totally unique groups of tumors that were based on like mutation profiles, essentially where the groups in blue, which had hundreds of mutations in the tumor, behaved really well. They were ultra mutated. And then the group in red had a tumor suppressor mutation in the tumor called P53.

00:45:34:01 - 00:45:57:06
Unknown
They behave very poorly, really high risk of recurrence. And then this middle group of yellow and green, this is where you find Lynch syndrome related and the mutual cancers or the really low grade early stage and mutual cancers that are sort of in this middle risk category. We now are using a much more user friendly. You can even look at pathology reports.

00:45:57:06 - 00:46:23:08
Unknown
If you were newly diagnosed, you may you may see mismatch repair, MRI. I see on your pathology report, you may even see p53 immuno chemistry on your pathology report. These are all basically because we're now doing this biomarker testing and categorizing and mutual cancers using these markers. We don't know yet how to change treatments for tumors that have poly or p53.

00:46:23:10 - 00:46:47:07
Unknown
We're still working that out with clinical trials. We do know that P53 specifically is not a good it's like a red flag for risk of recurrence and in the opposite direction, Poly E is is a green flag. It's like, this person might do very, very well. So we're trying to use it more in what we call the prognosis categories and this is the last slide here.

00:46:47:07 - 00:47:12:10
Unknown
You can see this is a proposal for updated surveillance and it's now using you can see here abnormal p53 or mismatch repair deficiency to to change surveillance schedules. So I do think over time we may actually change how we follow folks depending on what they're, you know, on the molecular level, what their cancers look like, even early stage.

00:47:12:12 - 00:47:38:17
Unknown
But stay tuned because we're not quite there yet. That was my last slide and I think everybody for their attention and I'm happy to answer questions. Thank you so much, Dr. Mueller. This was a fantastic presentation and you covered so many of the questions ahead of time. So that's that's wonderful. So we're going to start the Q&A now.

00:47:38:19 - 00:48:09:07
Unknown
There were a lot of pre submitted questions and you can still submit questions at the bottom at the Q&A section, at the bottom of your screen. We'll try to get through as many as we can in our remaining time. So let me start with what are the risks or side effects? I guess risks is the better word associated with CT scans and CT scans with contrast?

00:48:09:09 - 00:48:40:01
Unknown
Yeah, it's a great question. So this is it. This is why it's a balance. With every CAT scan that someone gets, they accumulate a small, totally like a approved dose of radiation. Nobody's giving a lot of radiation, but CAT scans have radiation dosing associated with them. And you can imagine how over five years of getting CAT scans, how that can add up, where if someone has a lot of CAT scans, that's a lot of accumulated radiation in your body.

00:48:40:03 - 00:48:59:06
Unknown
It doesn't mean that having one or two CAT scans is a bad idea. Sometimes it's really important because the tradeoff is we can get some really useful information. But that's one. One potential downfall is, you know, every time we get a CAT scan, I think we have to be thoughtful about it because it does have a radiation component to it.

00:48:59:08 - 00:49:37:03
Unknown
And then the other piece is contrast. You know, if you're someone who has an allergy, then you have to take a lot of medicines to pre medicate for that. So that's a potential it can be time consuming and a little bit more logistically challenging to get them and then it does the contrast is filtered through the kidneys. So if you're on diabetes medications like metformin or you have kidney, your kidney function is a little bit impaired in some way or you have kidney disease, then every time you get a scan, we need to be very careful about hydrating and that and understanding what your kidney function.

00:49:37:08 - 00:50:09:17
Unknown
So it's it's never a simple thing to order one. We have to always be thoughtful about it. Thank you. A couple of people asked, does anyone track recurrence past five years? And how do you truly know that you're cancer free without yearly scans when you when you've reached a certain point? Yeah. And you know, I anecdotally have, you know, over ten years there's one or two folks that I take care of where they're back 8 to 10 years later, and nobody wants to hear those stories.

00:50:09:17 - 00:50:36:14
Unknown
But I know they're out there. And it's true. You know, every so often someone might have a cancer recurrence and then the other piece of it is a very small number of people who have had exposure to radiation treatments for their enemy. Oral cancer can have secondary cancers from radiation treatments. That's a small percentage of people, but that means there's some small slice of this group that rightfully are wondering, where am I supposed to go?

00:50:36:14 - 00:50:58:07
Unknown
How is this supposed to be for me? And I'm worrying about it. So, you know, I think every hospital group addresses this differently. But the way we do this at MSK is we have what's called a survivorship program. So that's different from surveillance. Surveillance is you're you're in a risk category where we think we haven't cured and we want to follow closely.

00:50:58:09 - 00:51:26:04
Unknown
So survivorship is expertise in oncology care embedded in with surgeons like me. And you see these folks once a year and they do the same thing as you probably had in surveillance, maybe not the imaging type thing, but symptom review, examination, screening tests, things like that. That's something that with a really good gynecologist and primary care doctor, you could get that component in your own local health care team.

00:51:26:04 - 00:51:52:22
Unknown
But I think truthfully, a lot of folks feel like they're not getting that kind of quality connection in their health care teams. And so surveillance and survivorship are a little hand-in-hand where I work. Thank you very much. Now, I know you mentioned that circulating DNA tests are not quite there yet, but we did have a couple of questions live and pre submitted about Signatera.

00:51:53:00 - 00:52:39:01
Unknown
So I'm wondering if you can address that particular test. I can't Signatera. I could. I mean, I could I'd have to really look it up. That would have been a good one to know. And it right now, no problem. No problem. But I will tell you these that's a circular I see it circulating tumor DNA that tests tumor or these are all the same flavor of taking a sample of blood and trying to filter out the circulating tumor particles in the bloodstream for that type of test to become valid for endometrium cancer, you need a large pool of people that all are generally of the same kind of group.

00:52:39:06 - 00:53:20:17
Unknown
And and a mutual cancer is not. It's like apples, bananas, oranges, like cell type stage. You know, there's so many variations, the molecular subtypes. So finding what the right threshold is to say if that's someone we're worried about versus that's normal is a really hard process. And so truthfully, a lot of these companies are advertising to a general population something that's commercially approved because the more people pay money and submit their tests, the more they will develop fidelity, they will develop accuracy, which is why over time we may reach that threshold of this is a useful test, but we're not there yet.

00:53:20:19 - 00:53:56:11
Unknown
So just a little caution to folks like if you afford it and you want to do it and just understand what you're actually getting out of that test, it's it's like a grain of salt kind of lab test that makes a lot of sense and sense. And thank you for addressing that. This is a really interesting question. Somebody who had a hysterectomy, chemo, radiation and are any day but are just now receiving immunotherapy, are they considered in treatment and surveillance in remission or a combination of all of that?

00:53:56:16 - 00:54:36:05
Unknown
Yeah, well, you know, surveillance is, you know, monitoring for disease to come back off treatment. So no, but remission. If imaging and exam is completely like I can't find a thing this person has nothing measurable. And although I can't address the specifics of that person, there are some categories of medicate medications engage in cancers where it's called maintenance, where someone is cancer free, but they're getting trastuzumab, which is for septic or they're getting bevacizumab, which is another medicine we use or pembrolizumab.

00:54:36:05 - 00:55:10:00
Unknown
So I would call that like it could be a remission with a maintenance treatment that makes a lot of sense words, word salad, right. Thank you. This is I'm going to reword this question slightly because I think it's a really interesting that might apply to a lot of people if you're being followed by by someone like you, do you still and you're going for regular surveillance, do you still need to see your regular gynecologist?

00:55:10:02 - 00:55:31:04
Unknown
Yeah. And the answer is if you want to. And sometimes absolutely. So I will tell you, this is something I just share with my patients as a decision and we usually talk about it a year in advance. At first I say, I'm going to see you with such frequency, maybe just not partially, because I don't want them going, getting mixed messages.

00:55:31:04 - 00:55:50:05
Unknown
I don't want someone going and coming back and saying they told me I needed a pap smear. And they ask when my when my blood work was going to be. And then it's like I almost have to undo some of the education that was done locally. And it can be really stressful for people. So I typically stay for the first one or two years, just see me.

00:55:50:07 - 00:56:11:11
Unknown
But after that you will. We're working towards cure. So at some point it would be great to reconnect with your gynecologists because they're going to take care of you when you're cured. And it's a lot easier for them if they see how well you're doing over these next couple of years. And I'm here and it's almost like a transition of care over time.

00:56:11:12 - 00:56:30:23
Unknown
So we share it for a few years. But some people live really far away from me and it's very hard. And so I might have a relationship with a gynecologist who's helping me by doing pelvic exam so that person doesn't have to drive 3 hours for me to do a pelvic exam. And I might see them on telehealth, you know.

00:56:30:23 - 00:57:01:01
Unknown
So there's actually a lot of variation around that. But if you're in a community, far from your guy, an oncologist, and you have like a yeast infection or a urinary tract infection or you're you have questions around breast health Vulvovaginal health gynecologists are so good at that. So I actually think it's helpful to have someone on your team that is focused on that entire health scheme, because then as an oncologist, I may not be as focused on that in those first few years.

00:57:01:01 - 00:57:25:09
Unknown
So I think it's, you know, that's my yes and no. And, you know, that's my answer. I guess, like not like you're breaking a law if you don't see your gynecologist. But I think sometimes it can be value added to do so. Okay. Thank you. And where do things stand now with genetic testing for syndromes like Lynch Syndrome, which can be associated with endometrial cancer?

00:57:25:09 - 00:58:08:20
Unknown
Is is is it done regularly? And, you know, then of course, you would recommend for the children of of being treated. Just want to get a sense of where that's at at this point. Yeah. So where I work we offer and encourage genetic testing paired cancer tumor testing at the same time right at diagnosis. And that's because even with a family history that looks like probably have lynch syndrome or any inherited risk for cancer, we know up to you know in an at someone at average age maybe a 3% risk of Lynch syndrome but someone under 45 or 50 up to 10% risk.

00:58:08:20 - 00:58:36:09
Unknown
So we routinely offer testing to everybody and that is definitely spreading to becoming more of a standard of care, even outside of a cancer center like MSK. We also pair it with genetic counselor. So if you get a test result, then we have you meet with a genetic counselor and then that person offers to meet with family members who may or may not want to be tested themselves.

00:58:36:11 - 00:58:56:21
Unknown
I think this is a great question to just underline. This is where people get a little confused. Families do we test the person affected by the cancer? Everyone around that person wants to understand their risk, but it starts with the person affected. You know, if I'm related, just like my mom is in a American answer, I don't go get tested.

00:58:56:21 - 00:59:49:01
Unknown
My mom would get tested if she's negative. I don't have to worry that this is an inherited risk based on her cancer. If she's positive, I can get tested because I may also have the same inherited risk. Thank you. And we're nearing the end. And I think this question I'm just going to put it out there just because a couple of people who had different types of uterine cancer carcinoma, so coma serious and I know this surveillance because those are likely going to be higher risk would really depend on that and that you as a physician would tailor their surveillance for those types of of uterine cancer that aren't endometrial.

00:59:49:02 - 01:00:24:11
Unknown
ED Yeah. You know, it's a it's a changing landscape because, you know, and I will say I'm at a cancer center and we've been using molecular information for quite a while now. So if I see someone who has serious clear cell carcinoma sarcoma or a high grade and Dimitri or even or if any of those tumors have a p53 marker, or if they're advanced stage when they were first diagnosed, even if they are in remission, we frequently are imaging people every six months in those buckets and.

01:00:24:11 - 01:00:44:08
Unknown
That's because we know that in each of those vignettes I just shared, those folks are at a higher risk of the cancer coming back, perhaps in a place we can't examine and perhaps in a place that someone can't tell me a symptom no matter how well I'm listening. So we do we do offer and and use imaging in that manner.

01:00:44:10 - 01:01:05:12
Unknown
And we also acknowledge it doesn't have a study period to it that says that it's going to improve outcomes. But we are a cancer center where we try to jump on every opportunity. And so you will see a tremendous variation in practice around that. And that is perhaps why people, you know, come to cancer centers or come to places that have cancer specialists.

01:01:05:13 - 01:01:27:06
Unknown
They just they're not sure if they're getting what's right, you know, and that's that can be a source of great stress is just like, well, how do I know what's the right answer? And we don't even know necessarily. But we do have clinical trials and surgeons and we have a lot of options for people. So that's why we try to jump on recurrence early is because we want to give as many options as we can for folks.

01:01:27:08 - 01:01:57:10
Unknown
And we also acknowledge that for every one CT scan where something useful was found, there might be, I don't know, ten or 15 that weren't. So that's why it has to be a shared decision. And I wouldn't want anyone listening to me talk today feeling like they have to go right now and demand scans. I think it's more of like having that conversation, understanding what the rationale is, being feeling empowered and listened to is really important during this window of time in someone's treatment.

01:01:57:12 - 01:02:22:20
Unknown
Well, thank you so much, Dr. Mueller. This was incredibly informative, interesting, thorough. And we really appreciate your joining us. And thank you to everyone else who joined us. And we're participating and submitting questions today and make sure to check out shares, upcoming educational programs and support groups and follow us on social media as well. And please take a moment to the survey.

01:02:22:20 - 01:02:44:13
Unknown
At the end of the webinar, the survey will show up in your browser when the webinar ends, and the link will also come to you in a follow up email. And all surveys are anonymous. So this concludes our webinar for today. Thank you to everybody and have a good rest of the day. Thanks so much.