The Home Health Care Today Show: S1, E11: Sarcoma Awareness Month: Denise Reinke, APRN, BC, AOCN.

Denise Reinke, APRN, BC, AOCN, discusses top concerns, research, tips, and resources as related to Sarcoma Awareness in Metro Detroit. The show's goal is to recognize Sarcoma Awareness Month to inform, inspire, influence, and educate Metropolitan Detroiters on how to address this rare disease at various ages and stages.

Miss Denise Reinke is president of the Sarcoma Alliance for research collaboration. Denise is also a nurse practitioner at the University of Michigan. She fully understands the importance of collaboration to make progress for patients with rare diseases, such as sarcoma/SARC.

The acronym for Sarcoma Alliance for Research Collaboration is focused on bringing together the sarcoma research community and providing the necessary infrastructure to facilitate the conduct of institutional sarcoma research.

In addition to her previous role as president of SARC, she retains that 10% appointment with the University of Michigan, where she continues to work with Dr. Larry Baker in the care of patients with sarcoma.

Under Denise's direction, SARC acquired and developed components in the implementation of multi-center, sarcoma research projects, having the infrastructure of effective engagement and coordination of a collaborative team was a key component to making progress collectively.?With her experience and her team's research, they continue to provide the resources available through SARC, to ensure success of the overall team.

A. (Question #1: Denise, please elaborate further, what is sarcoma and your passion for research in this field?)

Sarcoma is a type of cancer. Most of the time when people think about cancer, they think about carcinomas. Carcinomas are cancers that occur in the skin or the tissue that lines the organs or within the organs of the body. Those are common diseases that we know like breast cancer, colon cancer, lung cancer, but sarcoma is different in that it is a disease of the bones and the connective tissues that connect the bony structure. For example, like fat and muscle and such, and those diseases, the sarcoma occurs in those tissues of the body and what's unique.

Cancers and carcinomas tend to occur across the lifespan as we get older. So the older we get, the more likely we are to get cancer. And we know that some of those cancers can be associated with lifestyle things such as smoking. Sarcoma is different in that it occurs across the lifespan. Newborns can get sarcoma, little infants, young children, adolescents, young adults, middle-aged all the way up to octogenarians. So it crosses the whole span of life. It's really quite different and so it's treated differently, it occurs much less commonly than carcinoma. So we see there might be 1.9 million people in the United States that will be diagnosed with cancer in 2020. One of those 16,000 of them will be sarcomas.

B. (Question #2: Denise, why is it so difficult or what are some of the obstacles in terms of people getting resources, information, or more knowledge about sarcoma and other rare diseases?)

There are over 30 million people in the United States that have a rare disease. So collectively that's not so uncommon. There are 7,000 different types of diseases. So in and of itself, if you've got one of those 7,000 diseases, awareness of it, just even knowing that it is a possibility that you might have that disease, or when a doctor says to you, you have sarcoma. You’ve never even heard of that before. So it's really raising awareness around some of these rare diseases, the impact of them, and so that people can be aware of maybe symptoms so that they can seek medical care when something like this comes up.

I think a second thing is access to good medical care. When you have an uncommon disease, sometimes it's hard to find an expert that will help get the right diagnosis, the right therapy. It might not always be within your local community, that there's somebody who has that expertise to really help you out.

Thirdly, the important thing in rare diseases is that if you've got this large number of diseases - what about the funding to do research? So that we can make progress, so that we can understand what these diseases are, try to figure out better ways to help people overcome them, treat them and live with them. We might not cure them, but how do we give people a good quality of life while they're living with these diseases?

Dr. Cleamon Moorer:

“It's fair to say that oftentimes these types of rare diseases fall in alignment, in conjunction with other comorbidities. So perhaps some of the greater known illnesses or elements may get greater funding or greater attention. As we think about congestive heart failure and still heart disease being the leading cause of death in the United States, it's not mutually exclusive to some of the other rare diseases. I think that is really important for folks to know and to, and to understand.”

B. (Question #2: Denise, tell us a little bit more about SARC as a former president. Looking at your impressive clinical background, being a nurse practitioner for so many years and then being a researcher. Also, some of the major accomplishments over the last couple of decades under your leadership and what you view as the vision of SARC is.)

Given the rare nature of sarcoma, SARC really came about as a brainchild of the research community. The academic research community is saying the only way we're going to make progress to help patients is to work together. We've got to really pool our knowledge, our understanding comes together and I've seen that happen. You bring smart people together and they start sparking off each other and the ideas get better and better. They knew that they needed to pool their intellect. They needed to pull their financial resources. What are the most important questions that's going to get us to help these patients to have better outcomes, to have better quality of life, to live longer with these diseases. And ultimately the goal of SARC was to cure sarcoma. You always have one of those big audacious goals, the big one you're going for.

There are steps of progress of better understanding the biology of the disease. What drives these different subtypes of sarcomas? Sarcoma was a one kind of bucket of diseases, but it's actually over a hundred different types. Each one is a little different. So why is osteosarcoma the bone different from leiomyosarcoma of the soft tissue? What's different about them? What are the drivers and what do we know about them so that we can determine better treatments for individuals? So this really was the brainchild of why bring SARC together, bring the research community. Then most importantly also bring together the voice of the patient in rare diseases. It's very important to hear from the patient perspective, what is their journey with this disease? What is most important to them? What are you? We don't have big journal articles of hundreds, or thousands of people, because it's just a small group. So you really have to listen to patients and families who know about these diseases. We came together to provide the infrastructure to do collaborative research. You could do the research on your own. But if most of the time you need to come together and I don't care where you work across the country, we are trying to provide that infrastructure to make progress together.?

C. (Question #3: How difficult was it to bring those various groups together? How did you successfully bring together those three distinctive groups for the purpose of moving forward, the body of knowledge and its applicability to patients' lives?)

You tap into the passion, each individual, if you're in your lab, toiling away, many of those people are driven by the passion. ‘I want to understand this. I want to better know what's driving this.’

Then if you're the clinician seeing the patient who says we have to get better understanding so that we can make progress. It's pretty easy to bring the two of them together.

People have maybe heard this - bench to bedside, bedside, to bench. So the laboratory bench makes an average observation. The clinician says that I'm going to see if that's really true in the clinic. And the patients I see, they say no, that was almost true. But we learned this as well. And they bring the information back to the person who's in the laboratory. It enhances their work.

So it was that kind of tapping into their strong interest. And they saw that their work was better, stronger. They had more ideas when they came together and the insights, especially in this uncommon group of diseases, the patients bring is so critical. They may say, these are the symptoms I'm experiencing. This is how I feel. This is what I first experienced when I was diagnosed. These are all important insights, as they're beginning to say, maybe that'll help us better understand the mechanism of what's driving it.

Maybe this will help us design better treatments. Or even when they're trying to decide what's a better treatment or how we're going to test a better treatment to say, how does that sound to you? Would you come in every week for this, we're going to need to get these blood tests. Do you think that's important? We would help you convince people why this is important, help us educate about the importance. So it's a true partnership. When you bring them together, they love it. And so once you build that infrastructure, yes, it's easy.

D. (Question #4: Denise, we're going to pick up right where we left off in terms of that research and the developments related to sarcoma. Who would you recommend for patients and their families and caregivers as related to clinical references for the audience, as well as support and advocacy? What are some groups that you would direct them to?)

First, what's really important is that we often hear about cancer having a multidisciplinary team is important, but it's critically important in sarcoma because these diseases are sometimes very difficult to diagnose by the pathologist. When they look at it under the microscope, even expert pathologists can have trouble knowing precisely what it is, knowing what specifically the disease is, is critical to deciding what the therapy is.

Bringing together the pathologist, the radiologist, how does it look on the x-ray study, bringing a group of people to the table, the surgeon, the radiation oncologist, the medical and pediatric oncologist who give them prescribed medicines and drugs, that multidisciplinary team is critical. Accessing a clinical center that has that multidisciplinary team, where they're going to bring that group of people to bear on your case, to make sure that they understand what you have and what the best course of treatment is for you.

For individuals who are maybe just first hearing this word, oftentimes they go to Dr. Google type in, and then you've got a lot of information. Sometimes not the best site comes up first. I think that it's really helpful to go to trusted sites like the National Cancer Institute, it’s an excellent site, good information. The large academic medical centers that are oftentimes designated cancer centers by the National Cancer Institute have big sarcoma programs and hunts. They will have some excellent information online for individuals. Lastly, a really excellent source are patient advocacy groups. There are a number of patient advocacy groups that are focused specifically on sarcoma. And in fact, within the last three years, I've helped bring together a group of those advocacy groups to form the sarcoma coalition.

We currently have 24 groups that have come together and we've co located their information on one website. So if somebody is newly diagnosed or in fact the logo is we're here for you, you've been newly diagnosed and you're going, what do I, how do I find information? Yes, it lists these different groups, the different subtypes, what services they have available. Many of them will talk to people one-on-one to help them navigate the road. How do I find an expert? Where do I go? Even some will have stipends to help get you to a specialist for the diagnosis and treatment. There are really some excellent resources out there for patients.?

E. (Question #5: I am so glad you mentioned the patient groups, the advocacy and support for folks out there at American Advantage Home Care. We serve home-bound home-bound patients. So speaking of home bound patients, Denise, would you suggest or recommend perhaps home healthcare as a way to assist patients suffering from sarcoma and other rare diseases in their advanced stages or phases?)

And I think it's important to point out that some people may die from sarcoma. There are people that also are cured of sarcoma, and I want to make sure that we get that message out as well. In the path of treatment, we engage home health care and home health care is so important. I know that within the practice at the University of Michigan, we try very hard for people to get as much of their treatment at home, stay out of the hospital. We don't want you there.

There's nothing like being in your own bed, nothing like having your own food. Home health care is that bridge that helps people to be at home, to receive a lot of their care at home in supportive care. They come to the hospital for things only that can be done at the hospital versus home health care. Partnering is just critical for people being able to just live their lives.

Dr. Cleamon Moorer:

“Even though U of M has its own home health care arm, which takes care of a lot of patients from time to time, we're able to assist U of M and take care of patients that are homebound and go through the U of M health system.“

F. (Question #6: Are there any other resources, clinic specialists, groups that you would recommend for our listeners and viewers here in Southeast Michigan?)

I think that we're really blessed in the Southeast Michigan area to have a strong sarcoma program that has that multidisciplinary team and that they work with other people across the state. Across the nation where people will come and get advice about how their care can be handled.

They will work with their physicians in their local areas. It’s so important to get the right diagnosis, get the right treatment plan, and then work in partnership with people in your local community to get that best care delivered.

The Home Health Care Today Show was launched in 2021 to inform, inspire, influence, and educate viewers and listeners about a variety of health and wellness topics important to home health care clients, caregivers, and family members in Metro Detroit and beyond.

Sponsored by American Advantage Home Care, Inc.