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KATHERINE PHILLION: So as a survivor, I’ve talked about the importance of owning your case and I’ve talked about keeping a plan A, B and C, but there’s an important thing to realize – that at times, you have to be the patient, you have to let the medical field treat you, right, and other times, you have to represent yourself.

ANNOUNCER: The American Cancer Society estimated in 2007 that more than 51,000 of the new cancer cases are individuals diagnosed with kidney cancer. Kidney cancer occurs roughly twice as often in males as in females. An estimated 12,800 people died from this disease in 2006; however, it’s estimated that between 100,000 and 200,000 kidney cancer survivors are living in the United States right now.

DR. JANICE DUTCHER: Kidney cancer is the tenth most common malignancy and kidney cancer has an incidence similar to lymphoma. It’s far less well known even to oncologists and I think the latter is probably because it’s been so untreatable except by very specialized centers for 20 years.

ANNOUNCER: Renal Cell Carcinoma, or RCC, is the most common type of kidney cancer, with subtypes including clear cell RCC, papillary RCC, and chromophobe RCC.

DR. KEITH FLAHERTY: So kidney cancer refers to the type of cancer that arises in the kidney itself. There are actually a few different types of cancers that can arise in the kidney, but when we use the term kidney cancer in a conference such as this one, we’re usually referring to renal cell carcinoma – that’s a cancer that really arises from one of the basic elements of the kidney itself and that accounts for about 85% of all cancers that arise in the vicinity of the kidney.

DR. DAVID QUINN: The most common cancer that comes from the kidney is something called clear cell cancer, or clear cell carcinoma, which has a characteristic appearance and arises in the cortex of the kidney – it’s on the outside, it’s like the meaty bit. And then there are rarer forms of kidney cancer, the most common type of a rare form is something called papillary [or papillary depending on where you grew up] and it comes from a slightly different area of the kidney, sort of closer to the middle where the urine drains and it makes up about maybe 15 or 20% of kidney cancers.

PATRICIA A. CREEL, RN: It’s a very shocking time as it would be for any new cancer diagnosis and traditionally kidney cancer has carried a very ominous connotation.

NANCY MOLDAWER, RN: When you’re newly diagnosed with cancer, you need to go to a specialist. You need to go to a center of excellence, at least for an opinion. If you can’t get your care there, at least you have the opportunity to hear the way an expert would treat your cancer.

DR. KEITH FLAHERTY: As I often tell patients, when it comes to the management of advanced renal cell carcinoma, with multiple available therapies now, this is much more of a marathon than a sprint and it’s much more a matter of trying to have control of the tumor in a month-after-month basis, while making each of those months as high-quality as possible, minimizing side effects, while gaining control of the tumor and maintaining control of their tumor. And we’ve found increasingly that we’ve been able to do that for not just months, but years and years for many patients.

PATRICIA A. CREEL, RN: I would recommend to those patients to contact the Kidney Cancer Association. They are truly a patient advocacy and patient-based organization with a wealth of information and they collect it and serve patients internationally all over the world.

DR. JANICE DUTCHER: A third of patients have symptoms which include blood in the urine, flank pain, fevers and night sweats, weight loss; but two-thirds of people are diagnosed accidentally and it’s almost like they go in for a chest x-ray and somebody sees something on the x-ray or they go in for symptoms of gall bladder disease and the technician does an ultrasound and finds a kidney mass in addition to gallstones, so it’s a pretty tricky disease in that respect.

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DR. KEITH FLAHERTY: Kidney cancer has somewhat of a unique distribution across the population subgroups, if you will. It’s fair to say that men are much more likely to contract kidney cancer than women, for reasons that we still don’t understand, but there’s about two cases of kidney cancer among men for every case there is amongst women and we believe that may have to do with hormonal factors, but frankly haven’t really nailed down why that may be.

NANCY MOLDAWER, RN: There’s no question that we see an increase in the incidence of kidney cancer in older people and that’s in part because of the trend towards people living longer.

DR. KEITH FLAHERTY: As the population ages, if you will, across the decades of the sixties, seventies and 80 years of age, that’s when the incidence of kidney cancer really rises dramatically. So in the general population, if you look at renal cell carcinoma, it’s a disease of patients who are older and the significance of that really, particularly in considering the new therapies that we have to treat advanced kidney cancer, is that many of those patients will have other medical conditions that they’ll have compiled by that time that they’ve developed kidney cancer. And that really forces us to question – what is the interface of the new therapies in terms of those other diseases that patients have, not just their renal cell carcinoma – and that has been a challenge.

The newer therapies cause some side effects that can complicate the management of problems that an elderly population is already wrestling with – hypertension, increase in blood sugar are two nice examples of what the newer therapies will commonly do as side effects along the way towards translating to control of their disease and these really do raise challenges where medical oncologists and other practitioners who use these therapies to treat patients with advanced kidney cancer need to be managing these patients in conjunction with generalists and other specialists potentially, who can help keep tabs on all of those problems.

DR. JANICE DUTCHER: There is a sense, albeit anecdotal, it is a slower growing process in older people. I have, for example, a woman who’s 80 years old, who had bilateral kidney cancer, had one kidney removed, refused to have the other one removed because she did not want to be on dialysis and I’ve been following her for over 10 years and she has not progressed with that other kidney cancer.

DR. KEITH FLAHERTY: In terms of other groups who are more likely to contract kidney cancer or have it behave more aggressively, we’ve also learned that African Americans are more likely to contract the disease in the first place and have it behave more aggressively if they do contract it. And again, that ratio, if you will, is that kidney cancer is about twice as likely in African Americans as it is in Caucasians.

DR. JANICE DUTCHER: Risk factors for developing the disease are, have been, associated with cigarette smoking – there’s an increased relationship with hypertension. Which comes first? It’s not clear. Certainly kidney tumors can produce hypertension and when the kidney is removed, the hypertension disappears.

DR. KEITH FLAHERTY: There are familial cases of renal cell carcinoma that occur and in those families where renal cell carcinoma affects multiple individuals across multiple generations of the family, we have found the underpinnings, if you will, the genetic predisposition that leads to that. Having said that, if you look at all renal cell carcinomas and consider how many renal cell carcinomas occur in families like that versus how many renal cell carcinomas occur in one individual who’s the only person in their family plus or minus one generation, you find that nearly all renal cell carcinomas are the type that happen, as we say, sporadically – meaning one individual in a family, not multiple family members. So you’re down in the 1-2% range of all renal cell carcinomas that actually run in families in a fairly consistent fashion. Now, does that mean that there’s not some genetic predisposition even in those cases? There could be, it’s just not as strong a link as is in those families that have multiple generations and multiple affected family members.

BILL BRO: Katherine Phillion, I think represents the best instance of the empowered patient.

KATHERINE PHILLION: I’m Katherine Phillion, I’m from Houston, Texas. I’m a kidney cancer, 13-and-a-half-year survivor.

BILL BRO: Katherine is a more than 13-year survivor of stage four, that’s metastatic kidney cancer. And Katherine will tell you that she has survived because she learned about the disease process. She closely evaluated the physicians who proposed to treat her and evaluated the treatments that they proposed. By educating herself about this disease, what she found over time is that there were instances where she knew more about the disease process and how best to treat it than the people who were treating her. It sounds trite, but the most important thing for anyone dealing with a difficult medical prognosis is to remember that knowledge is power.

[End of recording]

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