The Knowledge Board:

Cancer (Kidney)

Kidney Cancer The Patients Experience

Hi I'm Belinda
I'm your community manager at The Patients Voice. If you would like to speak to me, please drop me a line on the email below.
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You can reach me at belinda.shale@healthcarelandscape.com. Feel free to get in touch.
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Your chance to talk about Kidney Cancer

The purpose of this blog is to help The Patients’ Voice find out more about of kidney cancer, also known as renal cell carcinoma or RCC.
The Patients’ Voice is keen to find out how and at what stage kidney cancer is diagnosed and how it is currently treated in the UK.
We would like to explore how those affected by kidney cancer felt whilst undergoing therapy, how the treatment impacted on life, how they coped with side effects (both physical and emotional).
Please feel free to tell us your story or those of family or friends.

The kinds of things you might like to include would be

- Tell us the story of your diagnosis. Who diagnosed you? When? How did you, your family learn about the disease? What symptoms or events prompted your diagnosis of kidney cancer, if any?
- What physicians/specialists have you seen in connection with your kidney cancer? Who do you see on an on-going basis? Who do you see but occasionally?
-How did you, your family learn about the kidney cancer, from diagnosis and throughout the disease process?
- Were there any resources you found useful?
- How do you manage the disease on a daily basis?

- Have you had to change your diet or lifestyle to cope with the disease? What support did you receive from family, friends, medical professionals?
- If you smoke, did you manage to stop smoking? What support did you receive from family, friends, physicians, medical professionals?
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- How did you and your family make decisions between the medical options available to you ?
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- How did you choose physicians? Hoe did you decide which therapy route to undergo? What were the main triggers?
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- We are currently running a study with patients suffering from Kidney Cancer can you let us know why recruiting patients for such a study would be challenging
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Please remember that all your comments are anonymous and you cannot be identified.

I look forward to your comments and ideas

 

tom | 03/04/2007 14:50:00

My brother had Kidney cancer, its great there are more forums out here now for people to chat and connect on.

Christopher Ippolito | 04/04/2007 21:18:00

My kidney cancer was discovered during a routine test. I had an esophagectomy about 5 years earlier, due to esophageal cancer, but this was a new cancer. I did not receive chemo or radiation for this one, and only my left kidney was affected. It was removed through laparoscopic surgery. My Dr has since found a small tumor on my bladder which was also removed. Having had Esophageal cancer prior to this, the discovery of kidney cancer was not a total surprise, and I wasn't terribly disturbed like I had been the first time I was diagnosed with cancer. The third time (the bladder cancer) was even easier to handle. I have a Blog that sort of chronicles my journey (it's in the early stages) on blogger. The Address is : http://thedoltfiles.blogspot.com/ If I can help in any way, please contact me. Thanks Chris

Val La Rue | 05/04/2007 19:14:00

I just wanted to comment on my husband John's diagnosis. I feel that if the doctors had known the signs he may have been diagnosed earlier. He had a varicocele, high blood pressure that wouldn't regulate & polycethemia. When the lady doc did a CAT scan to check his spleen THEN she found the kidney tumor. Everyone should be aware that these may be tumor markers. Also the fact that it may be heriditary-his dad also had a varicocele but died from something else. I lost my husband in 2004. I learned a lot about the treatments and would have done things different if I had known these things then. Gamma knife or cyberknife may have made a difference. He fought a good fight but I think I found the best doctor just a little too late.
 

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About the Patients Voice.

The Patients Voice The Patients Voice is one of the many patient-focused services from Healthcare Landscape. Healthcare Landscape is a medical and healthcare research company, which conducts interviews with all the different kinds of people involved in the healthcare process. They range from patients and their carers, to medical professionals like nurses, pharmacists, physicians and academics. Our mission is to find out what they think and what their experiences have been.

We can interview over the web, at home or at a special research facility; depending on what type of study it is, the choice is often yours. We also run patient diaries and blogs, so you can air your views as honestly and informally as you like. We want to ensure that you have access to the best research experience, and in turn, our clients will learn from your story. Our clients are quite diverse. They range from pharmaceutical or medical device companies, to charities and government bodies. The Patients Voice is open to anyone in the world who wants to give an opinion and would like to try to make a difference. This forum gives you power by allowing you to get YOUR VOICE HEARD.

You should always consult your physician regarding any medical issues. While we attempt to make sure the information on this site is as accurate as possible consulting a medical professional is always to be advised.

Membership of the Patients Voice is Free and open to anyone.

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