Uncovering UTUC Together

What’s the first thing one thinks of when they hear “healthy habits”? It’s probably exercise!

That’s for a good reason. American Cancer Society shows that exercise is safe and helpful for most people with cancer, including those with Upper Tract Urothelial Cancer (UTUC). It’s not a cure for cancer, but exercise can keep one’s energy up, strengthen the immune system, and even help one cope with treatment side effects.

Here’s the good news: Incorporating exercise into one’s daily life doesn’t have to be a chore. Start with a 10- to 20-minute walk around the block each day. A brisk walk can easily become a habit if it’s added to another regular routine, like checking the mail each afternoon.

Read more about cancer and exercise: https://bit.ly/ACS_Walk

Learn more about UTUC: https://bit.ly/UTUC_Walk

Happy New Year from all of us in the Uncovering UTUC Together community!

While New Year’s resolutions are notorious for fizzling out, the start of the year is a great time to build healthy habits that last — especially for those with Upper Tract Urothelial Cancer (UTUC).

The key to building healthy habits is making small, realistic shifts to one’s regular routine. For example:
>> Add a full glass of water to breakfast.
>> Replace a daily side of chips with a side of fresh cut veggies at lunch.
>> Add a walk to the end of the block when going to check the mailbox each evening.

These simple shifts can create healthy habits that last longer than drastic resolutions. Another healthy habit? Staying informed about UTUC.

Learn more here: https://bit.ly/UTUC_NewYear

On behalf of the Uncovering UTUC Together community, we’d like to wish everyone a very joyous and peaceful holiday season.

For people dealing with a cancer diagnosis like upper tract urothelial cancer (UTUC), the rush of the holiday season may be a happy but stressful time. We encourage everyone to go at their own pace this season, finding the right balance between celebrating with friends and family and spending time alone. When people are open about their individual needs, traditions and festivities can be enjoyable without being overwhelming. Remember, this is a time to celebrate life, love, and happiness in whatever way one chooses.

Need some extra support for UTUC? These organizations provide information and help to people with low-grade UTUC: https://bit.ly/UTUC_Holidays

Missing a doctor’s appointment might mean missing new information about one’s Upper Tract Urothelial Cancer (UTUC). Staying on schedule with checkups is one of the most critical ways people with UTUC can take control of their health after being diagnosed, especially if their UTUC has come back (recurred).

Here are some tips to help stay on schedule:
>> Write appointments down on a calendar
>> Arrange transportation and support if needed
>> Schedule the next appointment at checkout
>> Can’t make it? Reschedule right away!

Learn more about getting treated: https://bit.ly/UTUC_OnTrack

Let’s talk about recurrence, which is when cancer comes back. Even after someone with low-grade Upper Tract Urothelial Cancer (UTUC) is treated with a minor surgery such as endoscopic resection, their UTUC can come back. Recurrence can happen for up to 65% of people who get this type of treatment.

It's important to understand all of one's options for low-grade UTUC and how the risk of recurrence can impact the treatment course.

Learn about treating UTUC: https://bit.ly/UTUC_PER_Recur

Along with one’s own support system and the Uncovering UTUC Together online community, there is a broader network of organizations that help and support those with Upper Tract Urothelial Cancer (UTUC). These organizations offer support groups, education, research updates, guidance, and more resources for living with UTUC.

Learn about these organizations and start exploring their available resources: https://bit.ly/UTUC_ComSupport

As the weather gets colder, it can be tempting to stay inside and become less active. But when one has any type of cancer, including Upper Tract Urothelial Cancer (UTUC), it’s important to keep active. Yes, even when it’s snowing!

Urology Care Foundation has tips for easy and fun wintertime wellness, both inside and outside. Check them out here: https://bit.ly/UH_Winter

Learn more about living with UTUC here: https://bit.ly/UTUC_Winter

Health affects the whole body, including the mind — so let’s talk about mental and emotional health. A cancer diagnosis like Upper Tract Urothelial Cancer (UTUC) can be a heavy burden on one’s mind and spirit.

So how can one cope with mental and emotional distress? There are a few ways:
>> Lean on loved ones and professional help if needed. There’s no benefit to keeping feelings bottled up inside.
>> Stay educated on UTUC. Taking an active role in one’s own care can provide a sense of confidence and empowerment, even during a scary time.

Start learning more about UTUC. Here's a discussion guide to help you talk to your doctor: https://bit.ly/UTUC_MentalHealth

And remember, this community is always here for support.

Kidney removal surgery has been a common method of treating Upper Tract Urothelial Cancer (UTUC). But it comes with some long-term risks, and people with UTUC may not want to lose a kidney or go through a major surgery.

Today, depending on whether a person has high-grade or low-grade UTUC, there are other treatment options that may not result in losing a kidney or major surgery.

Learn more about UTUC treatment options: https://bit.ly/UTUC_TxOpt

On behalf of our community, we extend our heartfelt gratitude to those who served, past and present, in the United States Armed Forces. Thank you for your service and sacrifices.

🇺🇸 Happy Veterans Day.

Read more about who UTUC can impact: https://bit.ly/UTUC_Veterans

Trying to learn more about Upper Tract Urothelial Cancer (UTUC)? It’s always helpful to hear directly from experts. This podcast episode from Care Foundation features an interview with Dr. Aaron Potretzke, Associate Professor of Urology at the Mayo Clinic in Rochester, Minnesota

Visit this page about UTUC on the UCF website, then scroll down to the bottom to hear how Dr. Potretzke answers questions about the urinary tract and UTUC in an easy-to-understand way: https://bit.ly/UH_UTUC

For more about UTUC: https://bit.ly/UTUC_PC

Upper Tract Urothelial Cancer (UTUC) can go by a lot of different names. The following are a few examples:

● Cancer of the upper tract
● Renal pelvis cancer
● Ureteral cancer
● Cancer in the lining of the kidney

What are some other names doctors have used to talk about UTUC?

It can get confusing, but we're here to bring clarity. Learn about UTUC: https://bit.ly/UTUC_Names

For followers who may have joined us recently, we wanted to share a resource that some of our longtime community members have enjoyed.

collaborated with Bladder Cancer Advocacy Network (BCAN) to provide information from experienced urologists. This recording of a live presentation is here to provide people with Upper Tract Urothelial Cancer (UTUC) — and their loved ones — with the information and support resources that they need.

The more information, the better. Watch the presentation now: https://bit.ly/UTUC_Jumbo

Uncovering UTUC Together is a community focused on raising awareness and educating about Upper Tract Urothelial Cancer (UTUC).

Along with UTUC.com, a website dedicated to educating people about UTUC and treatment options, these resources can provide a space for all people impacted by UTUC to connect, learn, and find support. Please follow along with us to learn about and discuss this sometimes-challenging and rare disease.

For more information about UTUC: https://bit.ly/UTUC_Community

What is “recurrence”? And does it happen with Upper Tract Urothelial Cancer (UTUC)?

Recurrence is what happens when cancer comes back after treatment. For low-grade UTUC — even though it’s less aggressive — there’s a 65% recurrence rate after minor surgery, one of the commonly recommended treatment approaches.

Staying on top of follow-up appointments with their doctor is essential for people with low-grade UTUC. These follow-ups are also called “monitoring.” Monitoring helps a doctor keep an eye out for potential recurrence, so they can address it quickly and discuss other potential treatment options.

Read about UTUC treatment options: https://bit.ly/UTUC_Monitoring

When it comes to any cancer diagnosis, knowledge is power. And that’s no different with Upper Tract Urothelial Cancer (UTUC).

There are some words and terms that someone with UTUC may hear in conversations with their doctor. Some examples are

● Endoscopic management
● Nephroureterectomy
● Recurrence
● Urothelium

See the definitions for these terms and others here: https://bit.ly/UTUC_Glossary

How common is Upper Tract Urothelial Cancer (UTUC)? Are men or women more likely to get it? These are common questions to have when someone first hears about UTUC. We’ve got answers!

Between 5% and 10% of all urinary tract cancer happens in the upper tract (the other 90%-95% occurs in the bladder). There are about 7,000 people diagnosed with UTUC in the US every year — and most of those will be men.

Want to keep learning? Read about the most common symptoms, including one that’s unique to only UTUC, not kidney or bladder cancer: https://bit.ly/UTUC_Numbers

The urinary tract works as an efficient drain for the body. It consists of the kidneys, the ureters, the bladder, and the urethra, with each playing a critical part in removing urine and waste.

● The kidneys filter blood, remove waste, and make urine. Within the kidney, there is also the renal pelvis (the center of the kidney) and the calyces (small ducts where urine is stored)

● The ureters are the tubes that bring urine down to the bladder once it is made by the kidneys

● The bladder stores the urine, eventually emptying it through the urethra

When people have Upper Tract Urothelial Cancer (UTUC), it means their tumor(s) can be found in the lining of the upper urinary tract — the kidneys and the ureters. You can learn more about the urinary tract and UTUC at UTUC.com.

Learn more about the basics: https://bit.ly/UTUC_AboutUT

September is Urology Awareness Month. It was started as a way to share knowledge and increase public awareness about conditions and cancers that affect the urinary tract and male reproductive system.

Here at Uncovering UTUC, we support open dialogue about urology and Upper Tract Urothelial Cancer (UTUC). This month, in honor of urology awareness, we’ll go back to the basics about UTUC. Please follow along as we share stats, facts, and helpful tips on this page. We welcome and encourage community members to engage with our posts and share or comment on their own experiences with . Please note, any content deemed hateful or inappropriate may be removed.

About the urinary tract: https://bit.ly/UTUC_AwarenessMonth

What’s the best way to talk to someone with Upper Tract Urothelial Cancer (UTUC)?

Words matter, so start small. Showing support can be as simple as changing one word in a sentence. For example, when talking about recovery from UTUC, saying "when" feels much more encouraging than "if."

Being mindful of one’s words when speaking to someone with UTUC can make a big difference in how they feel about their diagnosis.

Learn more about UTUC: https://bit.ly/UTUC_HowToTalk

Learn about UTUC causes, symptoms, diagnostic methods, treatment, and more with this informative fact sheet. Patients and caregivers can listen to an expert podcast to feel more empowered about making informed treatment decisions.

Have you heard of Upper Tract Urothelial Carcinoma (UTUC)? It's a rare cancer that affects the inside lining of the kidney and ureter - and it's different from kidney or bladder cancer. Check out our new fact sheet and podcast to learn more! https://bit.ly/45jYwG2

Upper Tract Urothelial Cancer (UTUC) is sometimes confused with kidney cancer. But UTUC is different: It’s a unique cancer that takes place in the lining of the kidneys and the ureters.

And because it’s different from kidney cancer, the treatment options may be different too. For people with UTUC, knowing all their options is important, so they can make more informed decisions about future treatment plans with their doctor.

Get the facts about this rare cancer: https://bit.ly/UTUC_Unique

How does a doctor screen for Upper Tract Urothelial Cancer (UTUC)?

A ureteroscopy is one of the most important procedures when confirming a UTUC diagnosis.

A thin, lighted instrument called a ureteroscope is inserted into the upper urinary tract to search for any abnormal lesions or masses. Doctors may then do a biopsy, or remove a small piece of tumor tissue, to confirm a cancer diagnosis and to also understand the stage and grade of the cancer.

No matter what the results of a ureteroscopy may be, they offer important information when weighing the best options for future care.

For more information about the urinary tract: https://bit.ly/UTUC_Screen

You've been diagnosed with — now what? Before you make any big decisions about what comes next, it's important to talk to your doctor and learn as much about your cancer as possible.

Here are some important questions that you will need answers to:
Is the cancer low grade or high grade?
Where in the urinary tract are the tumors located?
What are the treatment options?
How can treatment impact my health?
Will the cancer come back?

For more questions to ask your doctor: https://utuc.com/talking-to-your-urologist

Let’s talk treatment for Upper Tract Urothelial Cancer (UTUC). Treatment options for UTUC depend on whether it’s high grade (more aggressive) or low grade (less aggressive and less likely to spread).

For people with high-grade UTUC, major surgery is the only treatment option. But for people with low-grade UTUC, there are a number of treatment options to discuss with their doctor — including a nonsurgical treatment.

Deciding on a treatment approach is tough. The best way to make an informed decision is by having a conversation with a healthcare provider about all the possible treatment options.

Read more about getting treated for UTUC: https://bit.ly/UTUC_TreatOpt

Cigarette smoking is a major risk factor for upper tract urothelial cancer (UTUC). Quitting may help you reduce your risk not only for UTUC or a recurrence, but for other health problems like cardiovascular disease.

Need help quitting? It’s always important to talk with your doctor before making any changes, but this resource can help you to learn more: https://bit.ly/UTUC_QS

Learn more about UTUC risk factors and treatment options here: https://bit.ly/UTUC_Risks

Do you want to be healthier but don’t know where to start?

Whether you have UTUC or want to reduce your risk of a recurrence, it’s important to eat well and be active. Here are a few specific ways you can start making positive changes, along with resources that can help you get started:

● Learn more about the New American Plate, a veggie-focused diet that can help reduce cancer risk: https://bit.ly/UTUC_NAP

● Know exactly what to look for — and what to avoid — when reading nutritional labels: https://bit.ly/UTUC_Labels

● Consider tracking your steps with a pedometer: https://bit.ly/UTUC_Steps
You’re on your way to healthier living!
Learn more about UTUC here: https://bit.ly/UTUC_Living

Treatment for upper tract urothelial cancer has historically involved kidney removal surgery for both high-grade and low-grade disease.

Kidneys filter waste from the blood and help to maintain a healthy blood pressure. While people with only one kidney can live a healthy life, having only one kidney carries some potential risks and complications, including reduced kidney function and high blood pressure.

It’s always good to understand your treatment options and any risks associated with them. For instance, if you have low-grade UTUC, there are nonsurgical treatment options that you may want to discuss with your doctor.

For help understanding and talking about treatment options, start here: https://bit.ly/UTUC_Talk