Sallie McAdoo is a kidney cancer expert | active surveillance | clinical trials

DESCRIPTION

Kidney cancer presents a unique set of challenges.  It does not present a clear genetic picture, making it difficult for one to get out in front of the disease.  This from Sallie McAdoo, the executive director of the Kidney Cancer Association on the @CancerInterviews podcast.  Because ultrasounds and CT scans often provide false positives when detecting small tumors on the kidney, she says active surveillance is often the best way to go when such tumors are detected.

Many cancer diagnoses can be the result of inherited conditions, but not so with kidney cancer.  Sallie says many kidney cancer diagnoses are tied to metabolism.  As such, the notion of eating well to prevent cancer is even more crucial because diet and metabolism can really affect the growth of the kidney and the tumors that are there. 

Another area regarding kidney cancer that is murky is that doctors cannot say there is a specific age in which one should begin getting checked for kidney cancer.  Elderly people can be diagnosed with kidney cancer, as well as those in their late teens, says Sallie. 

She says the best person to watch out for your possibility of kidney cancer is yourself.  That includes paying attention to your body.  If you experience recurring lower back pain or fatigue, seeking medical attention is a good idea.

Sallie McAdoo says because many ultrasounds or CT scans for kidney tumors yield false positives, when tumors are small, it is better to engage in active surveillance, as opposed to rushing into a treatment regimen that could do more harm than good.  By having these scans periodically, if kidney tumors grow to an extent in which they warrant treatment, the patient will then be positioned to surgically address them.  However, Sallie says that active surveillance is only an effective tool if the patient goes in for their appointments when they are supposed to go in.  A sufficient interval for such visits either once every six or twelve months.  According to Sallie, the best interval is something that should be decided by doctor and patient.

Sallie also says kidney cancer patients should be open to being involved in clinical trials.  She says patients taking part in clinical trials will get the standard of care and access to the forefront of new drugs designed to combat kidney cancer.  With more than 200 existing kidney cancer clinical trials, there are many options for patients to explore.

Additional Resources:

Support Group:

Kidney Cancer Association: https://www.kidneycancer.org

TRANSCRIPT

Bruce Morton: Greetings and welcome to the @CancerInterviews podcast.  I’m your host, Bruce Morton.  We often feature interviews with guests who discuss their cancer journey, but every once in a while, we switch it up, and bring on a guest who can provide timely, much-needed information for someone on a cancer journey or someone who may be on a cancer journey.  This is one of those times.  Our guest is Salle McAdoo of Houston, Texas, the medical director at the Kidney Cancer Association.  Sallie, welcome to Cancer Interviews.

Sallie McAdoo: Thanks for having me, Bruce.

BM: Sallie, we want to start out by getting to know a little more about you, your professional background and the chain of events that brought you to the Kidney Cancer Association.

SM: Absolutely.  I am actually trained as a genetic counselor, and so I would talk to people about rare disease, and risks for that, especially in the reproductive space.  I made a big change over to the cancer space, probably about five years ago, working on thyroid cancer specifically, at a laboratory.  So, I was seeing patients and developing tests for patients in the cancer field; and I just really missed being able to connect with patients, and sort of help with that education.  When I found out about the Kidney Cancer Association and the opening that they had, I thought it would be a great fit and get back to helping patients and bridge my medical side and the patient side in terms of bringing information and resources to patients.

BM: Sallie, every cancer has its own idiosyncrasies.  They affect different parts of the body, some metastasize quicker than others, etc.  What are some of the things that kidney cancer unique compared to other types of cancer?

SM: I think there are a couple different things.  I don’t think we have as much of a clear genetic picture around kidney cancer like we do with say, breast cancer, thyroid cancer or colon cancer, and we are still trying to figure out why that is.  There are not as many inherited conditions that cause it or no mutations that make those tumors thrive.  Another part is that it is highly linked to metabolism.  We hear a lot about wanting to eat well to try to prevent the risk for other cancers, and that makes common sense; but with kidney cancer, it is even more crucial, that diet and metabolism really affect the growth of the kidney and the tumors that are there.

BM: From time to time, we will hear about Person ‘A’ donating his or her kidney to Person ‘B’ and how we are blessed with two kidneys but can function with one.  How does that affect the overall equation when addressing kidney cancer?

SM: Yes, you can definitely function with one kidney.  It is not necessarily the easiest road, but it definitely possible.  Kidney cancer tends to affect older people, so if you have given a kidney to someone at the age of 30 or 40, and you develop kidney cancer in your 60s, then that extra kidney that would have been there would have been more crucial, to have that ‘back up’ that is there.  I think the other thing is, people are concerned with, if they have just one kidney, does their diet take more of a hit, do they need to be more concerned about toxins and things that are in the environment.  Most of the time it isn’t a problem, but we have no way of knowing if that second kidney is going to be important later on, so having one kidney does play a role if that diagnosis does pop up.

BM: For certain types of cancer, health care professionals would say one should start getting checked at a certain age.  If most of the people who suffer kidney cancer are diagnosed at an older age, when should one first get checked for kidney cancer?

SM: While most people affected by kidney cancer are affected later on, there are also people affected in their 30s and 40s, sometimes even people 18 to 20 years old can be diagnosed.  One of the things that is unfortunate is that there is not a great screening test.  You are not necessarily looking for a lump in one’s breast or blood in your stool.  Blood in one’s urine is one of the signs of kidney cancer, but it may not be apparent to the naked eye, that small tinge of blood.  There is no great ultrasound screening that is going to pick things up without a lot of false positives or false negatives, so there is not a specific age to begin screening.  It’s more about paying attention to your body.  Lower back pain, feeling extra fatigue, stuff like that.  When those symptoms materialize, you should seek medical attention instead of writing it off as old age.

BM: The bulk of our audience involves people who are diagnosed or those who have learned they could be diagnosed.  Chronologically, one is a candidate before he or she is diagnosed.  For the person who has learned they could be diagnosed with kidney cancer, what advice do you have?

SM: I think the first thing which is easier said than done is, just breath.  Every time you hear the cancer word, it sounds like a death sentence, even if it just first mentioned as a possibility, you are worried about lifespan and what’s going on.  There is a lot of information that is going to happen when you are first diagnosed.  Taking a breather and bringing somebody with you that can hear about all the different information, having that second set of ears so they can listen if you start to tune out because you are so concerned.  These days there are a lot of options, so compared to say 20 years ago, there are definitely a lot more things that can be done for the patient to help with the journey, both from the cancer standpoint and just mentally dealing with that diagnosis.  Take a breather, bring a friend, bring a family member and just take some time to think through things.

BM: That brings us to the point in which one has been diagnosed with a form of kidney cancer.  At that juncture, what is your advice?

SM: Biggest thing is pretty similar.  Make sure you take time to…breath.  Kidney cancer is something in which people worry about recurrence, about medications, toxicity.  It’s not necessarily a quick, one-and-done treatment to get to a cure.  Take that time, make sure you think through your options, talk with your doctor about the optional clinical trials.  You can do that as a new patient or a recurring patient, and make sure that you continue to ask questions.  We always think the doctor knows best, but let them know what you are experiencing, what you want to change up to sort of take control of that treatment.

BM: A term that has been used in other types of cancer is “active surveillance.”  As a prostate cancer survivor, I can say that this time is frequently used, although back in the day when I was diagnosed, the term of choice was “watchful waiting.”  How can active surveillance by part of the equation for one diagnosed with a form of kidney cancer?

SM: We’re actually seeing this pop up more and more now that ultrasounds and other imaging technologies are finding things that we think may be cancer, and they turn out to be false positives.  They turn out to be a growth or a blip or maybe it is something else.  So, in prostate cancer, thyroid cancer and here, active surveillance is something that is getting to be more common.  We do say it is a little difference from watchful waiting, though.  Watchful waiting means we are going to wait until you have more symptoms or you’re having a problem before we take action.  Active surveillance is for those tumors that are pretty small.  About 30 to 40 percent of them are likely to be benign or non-cancerous, so when you see them on an ultrasound or a CT scan, you can just sort of watch it with blood tests or periodic ultrasounds looking for growth or changes without needing any definitive treatment, because sometime those treatments, if they involve medications, you might have toxicity that might build up, or you could have surgery to remove a kidney when it might not be a cancerous tumor, so you just watch it over time, knowing that risk for cancer is lower and you make sure you don’t do any treatment that could cause harm to you as a patient.

BM: It sounds, Sallie, like active surveillance, what separates it from watchful waiting is that active surveillance is a bit more proactive, but I would think that it would require, for lack of a better choice of words, “two to tango.”  In other words, even if the health care professional is doing his or her part, the active surveillance suffers if the patient doesn’t go in when he or she should.

SM: Definitely. I think you want to come in every six months or every 12 months because studies show that’s how long the growth takes.  Make sure you come in even if your last scan was fine.  You want to be able to catch it as soon as possible.  On the other hand, we do have patients who are recommended for active surveillance, and they say they can’t sit on this for six months.  I’m going to be worrying about it every single day.  I am willing to take that consequence and that’s okay, too.  Sometimes that is going to hurt yourself more, worrying about it, stressing about it, and quality of life is important, just to be able to know one way or the other, and have that treatment done.  So, it is definitely between the doctor and the patient to find that happy place and make sure everybody is going to be compliant while getting the best care.

BM: I want to circle back to a term that you briefly referenced and give you a chance to be not so brief and extol its virtues, and that’s the notion of clinical trials.  How important can they be once one is diagnosed?

SM: I think people think of clinical trials as “I’m the guinea pig.  It’s research and it’s experimental and it may not help me at all.”  That’s true and that’s what clinical trials are, you know, testing things, but when it comes to cancer, clinical trials are part of your care.  They’re not a last resort.  They are not a science experiment.  They are looking at drugs and saying they’ve seen some really good progress with this drug.  We need to figure out exactly what the dosage should be, exactly how frequent it needs to be, compared to the standard and offer it to patients.  A lot of patients don’t want to enroll in clinical trials because they think that they are going to get a placebo.  They think it could make their cancer worse.  That’s not the way cancer clinical trials work.  You’re not going to get a placebo.  You’re going to get the standard of care.  You are going to get what you would have gotten even if you hadn’t been in the clinical trial if you are not given the new medication.  So, clinical trials are a great way to get access to the forefront of new drugs.  They are probably going to change things dramatically, and to have the option to help yourself and help others by getting this drug to an approval.

BM: In your experience on a scale of one to ten, how would you gauge the resistance that you see and hear regarding patients and clinical trials?

SM: I would put around a ‘five.’  The majority of the problem is a lack of awareness of the trials.  A lot of time if the doctor you’re seeing isn’t part of that clinical trial, maybe it’s one that’s 100 miles away or 20 miles away or across the state, they don’t bring it up because they don’t know the details.  So, unfortunately it falls on to the patient to ask if there are other clinical trials they can participate in, or where they can find out about one.  Sometimes as a patient you need to ask instead of expecting the physician to bring them up; but most people once it is suggested to them are at least interested in finding out more, so they can make those decisions.

BM: So, in a sense, is education a key component here?  The more educated the patient becomes, perhaps the greater their desire to participate?

SM: Yeah.  One of the things we say in the United States is the doctor knows everything.  He went to school and all that; but you are the only person who knows you.  Do a bit of your own research, asking questions, getting in touch with us at the Kidney Cancer Association, asking for help if you need those resources.  Clinical trials are something I have been doing for the last 20 years, whether it be from the company side or from the patient side, helping enroll them.  You never know.  There are over 220 clinical trials right now in kidney cancer going on, so there are tons out there.  It just depends on your treatment to this point, what type of cancer you have, there is bound to be something out there that can help your treatment.

BM: I want to go back to a word you mentioned when speaking about the kidney cancer journey, and that’s the caregiver.  Could you just elaborate a bit about the importance of the caregiver in this equation?

SM: Caregivers are a very important part of the equation.  I know myself, outside of cancer, when I go to medical visits, I always bring a second person because I am always trying to remember what’s been said.  They might remember something I didn’t catch.  So, having someone with you regarding information is important, but if you have those people in your life you are interacting with, they have an idea of what you are going through to give you that support, so it’s emotional, it’s informational, it’s a person who can help you out in many ways.  The caregivers play a great role.  I think the one thing that really hurts a caregiver is their thinking they have to look after the patient at all times.  Sometimes the emotional toll can be there for the caregiver as well.  They need to know what their limits are.  They need to reach out to other caregivers to sometimes deal with the stress of being that caregiver and having that responsibility can take on them.  So, that caregiver sometimes needs caregiving as well.

BM: Sallie, we are going to wrap up now, but we want to ask you about your organization, the Kidney Cancer Association.  There are lots of things it can do to help those on a cancer journey.  Tell us about them and take all the time you like.

SM:  Sure.  The Kidney Cancer Association has been around for over 30 years.  We have done our best trying to create a bunch of resources that explains things in laymen’s terms, simple terms, break it up in little pieces so it is not all at once.  We have a “Just Diagnosed” toolkit, so if you go to www.kidneycancer.org, click on Patient Resources, you will find this toolkit that walks you through clinical trials, active surveillance, the different drug options, what questions to ask your doctor.  It’s a really great resource when you are feeling overwhelmed with that brand new diagnosis.  We also have various links in there, our Virutal Patient symposium, which is we have once a year.  It is where 200 patients come together to hear about the newest and most exciting research that is out there, talk to other patients, caregivers as well.  We have a support group once a month that meets the last Wednesday of every month, just to sit there and talk through things, or just to listen in.  You could find an important little tidbit that can help you get through, dealing with that moment.  We also have other health care provider resources, we do give out research grants, we do have clinical trial information to help with patients.  The bottom line is, if you get to www.kidneycancer.org, call the phone number there, talk to our patient navigator there with any questions that you have to help through that.  In 2022, we are going to be working toward a Patient Assistance Fund because we know cancer treatment isn’t cheap, and even if you have great health insurance, there are still those regular life expenses that can sometimes add up as well.  So, go to the website, call the patient navigator with any question you have.  Let us know if there is something we have missed something, so we can make sure to get those resources to you, and don’t have to search the Internet to find everything, that you can find it in one place.

BM: Fabulous.  Sallie, thanks so much.  Our guest has been Sallie McAdoo, the medical director at the Kidney Cancer Association.  Sallie, lots of great information here.  Thank you for your time, really appreciate it.

SM: Thank you.

BM: That’s going to wrap up this episode of Cancer Interviews.  We want to remind you if you are on a cancer journey, you are not alone.  As we learned in this segment, there is plenty of help out there for you, so, until next time, we’ll see you on down the road.

Additional Resources:

Support Group:

Kidney Cancer Association: www.kidneycancer.org

SHOW NOTES

TITLE:  Sallie McAdoo, MS, CGC, Medical Director, Kidney Cancer Association – Houston, Texas, USA

Sallie McAdoo brings a rich and varied health care background to her position as medical director of the Kidney Cancer Association.  Now in its fourth decade, the KCA is a one-stop destination for information and guidance to those on a journey with kidney cancer. 

Additional Resources:

Kidney Cancer Association: www.kidneycancer.org

Time Stamps:

02:27 What is unique about kidney cancer compared to other cancers.

03:23 Sallie explains what it means to function with only one kidney.

04:27 At what age should one get screened for kidney cancer.

05:45 Her advice for those who have learned they could be diagnosed with kidney cancer.

06:48 Sallie’s advice for those who have been diagnosed.

07:45 Why active surveillance can be a sound post-diagnosis course of action.

10:35 Sallie details the benefits of clinical trials.

KEYWORDS (tags):

kidney cancer

cancer

cancer interviews

bruce morton

active surveillance

sallie mcadoo

clinical trials