The Kidney Cancer Support Community on Inspire

By Kathleen Hoffman, PhD MSPH

Of the over 1 million cancers diagnosed each year in the US, around 3 percent are kidney cancers.¹ This relatively rare cancer is twice as likely to develop in men as women. Around 73,000 new cases will occur in the US in 2019, about 44,000 men and 29,000 women.²

Kidney Cancer Association Kidney Cancer Support Community on Inspire

Started in 2014, the Kidney Cancer Association Kidney Cancer Support Community on Inspire has grown to approximately 2600 members; 64 percent are female, 36 percent male.

The average age of diagnosis with kidney cancer is 64. Membership in the Kidney Cancer Association Kidney Cancer Support Community on Inspire ranges from below 21 to over 80 with those in the 40-70 ages predominating.

“Out of the Blue”

Patients and caregivers describe sudden and unexpected diagnoses of kidney cancer:

“My heart is breaking because my husband has been diagnosed, out of the blue with what we thought was a cough due to allergies, with kidney cancer that has spread to the lungs with mets too ‘numerous to count.’”

“It all started from a bump on my head. Xrays, CT scans, MRIs, blood tests, bone scan and a biopsy…showed renal cancer. Then more scans showed my left kidney and the mass…Before finding this I was a pretty healthy…This has my mind boggled. One split second my life changed.”

This is because, in its early stages, kidney cancer causes few symptoms and many early stage kidney cancers are found incidentally on x-rays or CT scans. Blood in the urine (without associated pain) is the most common symptom found in 60 percent of patients. People usually only experience symptoms as the tumor grows in size and pushes on other organs, resulting in later stage diagnoses.²

Specialized Treatment Centers

When someone new to the diagnosis posts in this community, members are quick to respond and reassure.

“Today I received my CAT Scan test results. It was sent via email from the hospital. Suspicion of RCC confirmed…I’m not sure about my feelings or how to go forward.”

“The most important think [sic] you can do right now is to gather all the info from the issue that led to the diagnosis, the CT report which you have, the comments that your doctor gave you, those recommendations, the plans etc. It is rather like staring a wolf in the eyes for the first time, but the knowledge of what you are up against can bring some control to it.”

In gathering that information, members explain:

“The size of the mass is critical, as that gives you a sense of the time the cancer has been at work, and a reminder to go look for more of its potential spread. A CT of the lung is important, not an x ray, as the CT is more sensitive. And as frightening as it can be to go look for more cancer, you will be better off to find it all now, vs being taken by surprise in 6-24 months. This is a sneaky disease, and can return.”

If there have been no metastases, surgery to remove all or part of the kidney is the first step in treatment. Members advise surgery at major academic hospitals with highly experienced surgeons:

“See what the local dr says but before you do anything definitely make an appt. with a major academic center. If the recommendation is to do a partial nephrectomy it is highly, highly recommended that you go to a facility that does at least 35-40 of these a year. A smaller hospital isn’t going to see that kind of volume for this type of surgery and you also want a urologist who does 50-100 of these a year.”

“make sure you have your surgery at a major academic hospital if possible. The skill and experience of the surgeon is so important.”

Side Effects of Treatment

If necessary, kidney cancer is also treated systemically. Unlike other cancers, most kidney cancers are resistant to typical chemotherapies, so the advent of targeted therapies and immunotherapy has given new hope to those with kidney cancer.
Most systemic treatments come along with side effects.

“I would rather die of a side effect than this cancer”.

“my problem has been balancing success of treatment vs. side effects.”

Members of this community discuss the side effects they experience and explain how they are resolved:

“The first side effect I felt was dizziness and a constant low grade headache right above my eyes…: The joint pain appeared seemingly from nowhere…: my lower back started to hurt, really bad. …didn’t realize it but backache is one of the first signs of pneumonia….Thus just about every side effect that I mentioned above has been recently cured by 2 pills in the morning and one pill in the evening called ‘Hydrocortisone.’”

Patients ask their doctors about treatments that other patients are using to deal with side effects. A follow-up question about hydrocortisone, in the same thread of comments, asked if the hydrocortisone counteracts the cancer treatment’s effectiveness. The original author replied:

“that’s a good question….That’s going to be my first question for my oncologist. I’ll let you know.”

She did:

“I met with my …oncologist this morning. She says the Hydrocortisone (replacement for lack of Cortisol from the adrenal gland) does not negatively effect the [medication name] treatments.”

Support in a Time of Need

As one member told a newbie,

“It’s good you found this site. You will get great support from many people”

Patients and caregivers may, at times, feel isolated by the demands of a disease. “Feeling better” involves more than medication. It’s given a boost by knowing that other people care.  As one member said:

“Thank you so much for responding & know you have given me some info to work with – again, thanks so much!!”