Renal Pelvis Cancer Overviews

Starting with overviews is a good way to get a basic understanding of the whole disease process, from how it starts to how it’s diagnosed and treated. This will help you have more productive talks with your doctor and help you figure out what questions to ask about your specific case.

Cancer – renal pelvis or ureter: A very basic overview from Medline Plus. It includes an illustration of what a kidney looks like and links to more information about some of the symptoms, tests and treatments mentioned.

Transitional cell cancer of the kidney or ureter: Another basic overview with pictures and links. This one’s from Cancer Research UK.

Info About Transitional Cell Cancer of the Renal Pelvis and Ureter: This overview is from the National Cancer Institute (NCI). It includes pictures so you can better understand how the kidneys work and some of the tests used to diagnose it.

Cancer of the ureter and renal pelvis: This guide is from Macmillan Cancer Support, a UK-based charity.

Upper Urinary Tract Cancer: A summary of upper urinary tract cancer from the Urology Care Foundation. It’s a little harder to read than the others, but it does have good information.

Organizations Devoted to Renal Pelvis Cancer

We didn’t find any organizations specifically about this cancer, but organizations devoted to kidney cancer and/or kidney diseases generally include this form in their efforts (even though some suggest it’s a transitional cell cancer, not a real kidney cancer).

Kidney Cancer Association: This is one of the resources that claim TCC isn’t a true kidney cancer (on its About Kidney Cancer page), but it still offers a lot of information and help that can be useful to you.

Urology Care Foundation: This foundation focuses on the entire urinary system, which of course includes the kidneys. It offers information, advocacy and research funding for all kinds of diseases of the urinary system, including transitional cell cancers.

National Kidney Foundation: This foundation focuses on all kinds of kidney diseases, including kidney cancer of all kinds.

Research into Renal Pelvis Cancer

As a rare cancer, there’s much less research into renal pelvis cancer than for many others. Even so, researchers are looking at various treatments for transitional cell cancers in the kidneys, bladder and elsewhere.

If you and your doctor think that a clinical trial would be a good option for you, these sites can help you see if there are any open trials you may be eligible to join.

ClinicalTrials.gov list of renal pelvic carcinoma trials: A short list (19 when we visited) of open trials.

NCI Clinical Trials: Although some of the trial titles only mention bladder cancer (also a transitional cell cancer), if you click to read the whole description, you’ll see they also include renal pelvis and ureter TCC.

Trials search on Cancer Research UK: If you’re in the UK, this site offers a searchable database of trials recruiting patients in the UK. You’ll find Transitional cell cancer as an option under Kidney cancer.

Forums and Support Groups about Renal Pelvis Cancer

Connecting with other people who are experiencing (or have experienced) the same thing as you can help you feel less alone and more hopeful. When you have a rare cancer, like renal pelvis cancer, it can be hard to find someone with exactly your diagnosis. But you can still find support.

One option may be the Rare Cancer Support forums. There is a forum on kidney, bladder & urinary tract cancers. We can’t tell how active it is, because even viewing posts requires registration. The publicly viewable threads seem only minimally active.

NORD, the National Organization for Rare Disorders, and EURORDIS (the European Organization for Rare Diseases) together offer online communities at RareConnect, although we didn’t see one for renal pelvis cancer or transitional cell cancers. This may have changed.

You might also be interested in NORD’s Facebook page.

NORD is also the US sponsor for Rare Diseases Day, held every year on the last day in February. There’s a Facebook page where people with rare diseases can connect year-round. You can also learn more on the Rare Disease Day USA website.

Other Resources for Renal Pelvis Cancer

NORD (the National Organization for Rare Disorders) has a number of patient assistance programs, from helping pay for medications to helping with travel and lodging for clinical trial participants. Although we did not see any specifically for renal pelvis cancer when we visited, this may have changed. It’s worth a look.

Other assistance programs are open to people with any kind of cancer. So even if you can’t find help specific to your cancer, you can still find help. We have a list of some of these resources here.

Another option is to try searching for renal pelvis cancer and your city in Google or your favorite search engine. It’s possible there’s a local group you can join.

Information for Kids About Renal Pelvis Cancer

If you have kids, you may be wondering how to talk to them about your cancer and how to help them cope. We didn’t find any renal pelvis cancer specific resources for kids, but we do have a Cancer Resources for Kids page.

It has articles to help you have an age-appropriate discussion. It also lists other resources (websites, camps, etc) specifically for kids so they can explore their feelings and connect with other kids going through the same thing.

Caregiver Resources

Caring for someone with cancer can be stressful, and if you’re not careful you can get burned out quickly.

Just like the patient needs support, so do you. There are many caring cancer-related communities and support groups for caregivers. Although we couldn’t find any active ones specific to this kind of cancer, we list more general cancer-related resources for caregivers here.