Respectfully

Ken Youner

Item #2 As more and more people are realizing that integrative medicine-the use of complementary treatment such as acupuncture,yoga,herbs and other supplements) can be important for cancer patients this article on red clover from the Integrative medicine Dept. at Memorial SKCC (http://tinyurl.com/38fjkr5) in NYC notes that some supplements may not only not work but can be harmful. So the message is-if you’re a cancer patient using complementary medicine be sure you discuss it with you oncologist and do some research on it yourself-I would trust a center like Memorial SKCC . MD Anderson also has a complementary medicine site see http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/cimer/index.html
Ken

IKCC is a cooperative effort to help foster the development of independent kidney cancer advocacy throughout the world while encouraging each country to develop its own kidney cancer advocacy organization that is unique to its local conditions. IKCC feels that only through the development of local support organizations, will kidney cancer patients receive the kind of cancer advocacy that will actually work for them. IKCC feels that no single kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many different cultures.
Present at the meeting were cancer advocates from 5 continents. The countries present represented vastly different cultures, values, and medical delivery systems. IKCC recognizes and respects this diversity and feels that it will become one of its strengths. IKCC is a network of independent kidney cancer patient support groups from around the world. It is patient driven and patient focused. IKCC has a strong presence in North America with Action to Cure Kidney Cancer (ACKC), the Association of Cancer Online Resources (ACOR), and Kidney Cancer Canada (KCC) represented on the IKCC Steering Committee and Cancer Care USA participating in the conference itself. All have been active advocates for kidney cancer survivors. Some of the members of the steering committee are actively battling stage 4 renal cancer (kidney cancer). This gives IKCC a unique perspective as to the needs of people actively fighting metastatic kidney cancer.
The meeting agenda for the Annual Conference was quite comprehensive. IKCC started with a “kidney cancer for ordinary people” session, run by advocates themselves. IKCC feels that the strongest patient advocate is one with a good understanding of kidney cancer. Following this session, the basics of starting a patient advocacy group (PAG) was covered, and we reviewed the steps needed to develop an independent national PAG.

IKCC acknowledged the need for a Code of Conduct that, while recognizing each country’s unique laws, will also follow international standards. IKCC recognizes and follows a completely transparent and ethical Code of Conduct, which can be found on our interim website,www.IKCC.org. Among other things, the Code governs our relationship with industry. IKCC requires that all funding for patient advocacy groups be unrestricted, and that there be no influence on IKCC policy by pharmaceutical companies. Another session stressed the necessity for keeping all patient information secure and totally private, and we heard from a lawyer who specializes in medical and health law about ethical practices for PAGs and how to safeguard patient information.
IKCC heard from PAGs from different countries including India, The Netherlands, Poland and Nigeria. It immediately became clear that there are many cultures with differing value systems with disparate access to medical care. This reinforced IKCC’s view that kidney cancer advocacy must come from national kidney cancer PAGs familiar with their own culture. No one organization can understand the challenges of the vastly differing countries around the world. IKCC will help each group to be independent, to grow and flourish within their own environment.
A number of scientific sessions were held where presentations were made by experts in kidney cancer. Contributors included Dr. Thomas Powles from the UK, Dr. Michael Jewett from Canada, Dr. Eric Jonasch from the US, Dr. Kumar Prabhash from India, and Doctors Jutta Hubner and Victor Grunwald from Germany. Topics included new targets and pathways of treatment, upcoming trials, tumor banks, and registries, complementary therapy, dealing with the side effects of the current treatments used for metastatic cancer, and patient participation in clinical research.
With the role of the internet in all aspects of medicine and the emergence of the “e-patient” and “e-doctor”, IKCC had sessions on utilizing the internet to help educate patients and future advocates. The impact of social media was noted as a powerful force for patient advocacy groups.
We finished with a round table discussion of all attendees. The conversation was animated and energizing. IKCC will strive to be a collaboration of kidney cancer organizations on a global level with a goal to improve the lives of kidney cancer patients everywhere. We welcome every organization that has an interest in kidney cancer advocacy and support, and will continue to extend an open invitation to all such groups to become a part of our international network. IKCC also welcome individuals who are motivated to initiate kidney cancer support groups in their own countries.
IKCC intends to be focused yet broad, open to divergent views yet directed, individual yet collaborative. The goal is clear. A collaborative effort toward the betterment of kidney cancer patients worldwide.
Kenneth D. Youner MD
IKCC Steering Committee
Medical Director
Action to Cure Kidney Cancer
ken.youner@ackc.org

Jay Bitkower
IKCC Steering Committee
President
Action to Cure Kidney Cancer

I just returned from Frankfurt, Germany after attending the 1st meeting of the International Kidney Cancer Coalition-our interim website is www.ikcc.org. An organization of which I am proud to be a member of the dedicated steering committee. This organization strives to improve access to information and advocacy for kidney cancer patients around the globe, in many areas where none is currently available. My report is below.

I have also been busy planning for the 2nd annual Spokes of Hope:A cancer advocacy bike ride that will take place on 10-10-10. This ride is part of a nationwide project of Spokes of Hope. Our purpose is to:
* Make a difference in how cancer is perceived, especially by those who think it cannot happen to them, and those that think cancer means the end of life.
*Inform people that we need to vote for, support and discover ways to cure cancer and promote quality survivorship.
We are riding to:
* Display our passion as a testimony that there is life beyond cancer.
* Build awareness throughout all communities regarding the number of lives touched by this wretched disease.
The ride will benefit the Cecile And Ken Youner Fund for Cancer Research-which was founded in memory of beloved wife Cecile. She died in 2008 from acute leukemia while battling stage 4 breast cancer. More information on the ride is on www.ckyfcr.org

Just to keep things interesting I am now at MD Anderson cancer center in Houston Texas. Tomorrow I will under gamma knife-radiation surgery for a brain metastasis from kidney cancer. I plan on reporting about that experience quite soon.

IKCC REPORTS

The International Kidney Cancer Coalition’s first Annual Conference, “Expanding Circles”, took place from September 10-13, 2010 in Frankfurt, Germany.

Present at the meeting were cancer advocates from 5 continents. The 17 countries present represented vastly different cultures, values, and medical delivery systems. IKCC recognizes and respects this diversity and know that it will become one of its strengths. IKCC is a network of independent kidney cancer patient support groups from around the world. It is be patient driven and patient focused. Patient advocacy groups (PAG) from diverse backgrounds were in attendance. On the steering committee there was Action to Cure Kidney Cancer (ACKC) and the Association of Cancer Online Resources (ACOR) from the US, Kidney Cancer Canada (KCC), V Care from India,The Kidney Cancer Support Network, Rarer cancers foundation and the James Whale Fund for Kidney Cancer from the UK, and Daslebenshaus from Germany.

IKCC is a cooperative effort to help foster the development of independent kidney cancer advocacy throughout the world. IKCC will encourage each country to develop its own kidney cancer advocacy organization that is unique to its local conditions. It feels that only then can kidney cancer patients receive the kind of cancer advocacy that will actually work for them. We feel that no one kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many varied cultures.

The meeting agenda for the Annual Conference was quite comprehensive. We started with a “kidney cancer for ordinary people” session, run by advocates themselves. IKCC feels that the strongest patient advocate is one with a good understanding of kidney cancer. Following this session, the basics of starting a patient advocacy group (PAG) was covered, where we reviewed the steps needed to develop an independent national PAG. We saw the need for a Code of Conduct that, while recognizing each countries unique set of laws, will still follow international standards. IKCC recognizes and follows a completely transparent and ethical Code of Conduct, which can be found on our interim website, www.ikcc.org. This Code governs our relationship with industry. IKCC requires that all funding for patient advocacy groups be unrestricted, and that there will be no influence on IKCC policy by pharmaceutical companies.

A further session that stressed the necessity for keeping all patient information secure and totally private. We heard from a lawyer  who specializes in medical and health law about ethical practices for PAGs and how to safeguard patient information.

Presentations from six PAG’s, each from a different country, highlighted that there are vastly differing cultures with differing value systems with disparate access to medical care. This reinforced our view that kidney cancer advocacy must come from national kidney cancer PAGs familiar with their own culture. No one organization can understand the challenges of the vastly differing countries around the world. IKCC will help each group to be independent, to grow and flourish in their own environment.

A number of scientific sessions were held where presentations were made by national experts in kidney cancer. Contributors included Dr. Thomas Powles from the UK, Dr. Michael Jewett from Canada, Dr. Eric Jonasch from the US, Dr. Kumar Prabhash from India, and Doctors Jutta Hubner and Victor Grunwald from Germany. Topics included new targets and pathways of treatment, upcoming trials, tumor banks, and registries, complementary therapy, dealing with the side effects of the current treatments used for metastatic cancer, and patient participation in clinical research.
;With the role of the internet in all aspects of medicine and the emergence of the “e-patient” and “e-doctor”, we held sessions on using the internet to help educate and advocate. The impact of social media was noted as a powerful force for patient advocacy groups.

We finished with a round table discuss of all attendees. The conversation was animated and energizing. IKCC will strive to be a collaboration of kidney cancer organizations on a global level with a goal to improve the lives of kidney cancer patients at each national level. We welcome every organization that has an interest in kidney cancer advocacy and support, and will continue to extend an open invitation to all such groups to become a part of our international network. We also welcome individuals who are motivated to initiate kidney cancer support groups in their own countries.

We will be focused yet broad, differing yet directed, individual yet collaborative- all adding to the betterment of kidney cancer patients.

Kenneth D. Youner MD
Steering Committee-International Kidney Cancer Coalition (www.ikcc.org)
Medical Director -Action to Cure Kidney Cancer (www.ackc.org)
Director- Cecile and Ken Youner Fund for Cancer Research (www.ckyfcr.org)

“We are pleased with the Court’s interim ruling, which will allow promising stem cell research to continue while we present further arguments to the Court in the weeks to come. With the temporary stay in place, NIH has resumed intramural research and will continue its consideration of grants that were frozen by the preliminary injunction on August 23. The suspension of all grants, contracts, and applications that involve the use of human embryonic stem cells has been temporarily lifted. Human embryonic stem cell research holds the potential for generating profound new insights into disease, cell-based therapeutics, and novel methods of screening for new drugs.”

KIDNEY CANCER FOR ORDINARY PEOPLE 2

IKCC (International Kidney Cancer Coalition) strives to improve the access to information and support for people with kidney cancer in all parts of the world. Thus I want this introduction to kidney cancer to be simple and easy to understand. There are many resources available on the internet that go into more detail.
Kidney cancer is sort of a strange cancer. It is not well understood by many doctors (even some general oncologists)-I was a stomach doctor for 30 years and knew little about it. What I knew was that if you get it- and it spreads you die. Fortunately medical research has changed my view.

The body is made up of many different kinds of cells. During our development in the uterus of our mother different cells get together and form the different organs of the body. The kidneys are a pair of organs of the body. The kidneys are part of the urinary tract. They make urine by removing waste from the blood that flows through the kidney tubules. They also help control the amount of water and salt in our body. Urine collects in a space (renal pelvis) in the middle of each kidney. It passes from the renal pelvis into the bladder through a tube called a ureter. When you “pee” the urine leaves the body through another tube (the urethra) which is in the penis in a male and the urethral opening in the vagina in a female.

Part of the problem with finding kidney cancer early is that the kidneys (we have 2 which is a good thing) actually sit along the back on either side of the spine in the lower abdominal cavity. They are about the size of a fist. They are separate from the other organs in the abdomen as they are behind what is called the retroperitoneum-a layer of tissue that forms a covering around the abdominal organs. Therefore a kidney mass can become large before it causes any trouble and a test is done to see what is wrong.
On top of each kidney is the adrenal gland. Thus there is a right and a left kidney. Around each kidney and adrenal gland is a mass of fatty tissue and an outer layer of fibrous tissue called Gerota’s fascia.

The organs of the body need new cells to replace the old ones that die. This cell growth is a carefully controlled process. This is under control of the genes which sit in the center or nucleus of the cell. We inherit genes from our mother and father. The genes are made of deoxyribonucleic acids (DNA). DNA is like a vast information database that tells the cells when and how to grow. The DNA has a complete set of instructions for making all the parts a cell will ever need.
This whole process can sometimes not work as it should. DNA is made of a string of chemical bases called nucleotides. The four chemical bases: adenine (A), guanine (G), cytosine (C), and thymine (T).The order of the nucleotides acts like a code that is read by the cell. For normal cell processes to work the order of the nucleotides is very important. There can be changes in the order of the nucleotides in the gene (a gene mutation) that can cause things to go very wrong. The nucleotides code for amino acids, which in turn form proteins. In certain cases these mutations can alter the protein function. In some cases, these altered proteins (“oncoproteins”) can induce cells to grow when they should not, or do not die and get replaced when they should. This abnormal growth of tissue is called a tumor. A tumor can be benign or malignant.
A benign tumor will not spread and if removed usually will not grow back. A malignant tumor is more aggressive. At times it can grow back if removed and may spread (metastasize) to other areas of the body. This kind of tumor is called a cancer. It can be life threatening.
How you learn that you have kidney cancer really depends on where in the world you live. If is in a country with a well funded and modern medical system it is often found “incidentally” on an x-ray) often an ultrasound, CT scan or MRI) that was done for another reason. If you are from a country that does not have easy access to scanning machines the kidney cancer may be found because of problems it is causing. This may be from the kidney mass (tumor) itself, and manifest as blood in the urine, pain in the flank, or the development of mass or bump which can be felt in the flank area. The problems may be from spread (metastasis) of the kidney cancer to other organs (areas) of the body). In general the more advanced the cancer is the more problems it can cause.

The kind of kidney cancer that you may have depends on which cells of the kidney became abnormal or cancerous.

Clear Cell renal cell cancer
The most common kind of kidney cancer is called clear cell renal cell carcinoma. This accounts for about 80% of kidney cancer. It is more common in men than women. It usually occurs from age 45-60. This comes from the cells that line the kidney tubule-the part of the kidney that makes the urine. When looked at under a microscope the cells look clear and pale. This type of kidney cancer is usually due to a mutation in the von Hippel Lindau (VHL) gene. There are families with inherited mutations of VHL, who develop kidney cancers in addition to other medical problems. The large majority of people who develop clear cell renal cell carcinoma have a non-inherited or “sporadic” version. Because of the medical research that has found this gene abnormality there has been a great advance in the treatment of this type of kidney cancer. I am still alive because of this research and the new medications that have been developed.

Papillary renal cell carcinoma.
The second most common type is called papillary renal cell carcinoma. This accounts for about 15% of kidney cancer.. The name is from little finger-like projections (called papillae) in some, if not most, of the tumors. There are 2 main types of papillary kidney cancer. Type 1 is generally less aggressive. There is a small subset of people who can inherit this type of papillary renal cell carcinoma. Type 2 tends to be more aggressive, and in rare cases is part of a hereditary syndrome as well. This type of papillary kidney cancer is more serious and harder to treat.

Oncocytoma-
This accounts for about 5 % of renal tumors. This usually is a solitary tumor that is benign. However a form of oncocytic cancer an occur.

Chromophobe RCC
This accounts for about 5% of RCC. Overall this is usually less aggressive than clear cell. However there are times it can be more serious and can spread.

Collecting duct renal cell carcinoma
This subtype is very rare. The major feature is that the cancer cells can form irregular tubes. This tumor type is very aggressive, and has traditionally been treated with chemotherapy.

Genetic translocation cancer of the kidney.
This is a distinct form of kidney cancer that can occur in young adults (including females) and probably children. It may make up approximately one-third of pediatric RCC. This can be diagnosed by special staining (immunohistochemical staining) of tissue from the kidney tumor. There are genetic abnormalities called translocations in the TFE3 gene (Xp11.2 translocation)
Approximately 10% to 15% of translocation RCCs occur in children that had prior cyto-toxic chemotherapy for a prior cancer. Therefore translocation RCCs should be added to the list of chemotherapy-associated secondary neoplasms in children (along with acute leukemias, soft tissue sarcomas, and malignant gliomas).

Renal Medullary Cancer
This rare yet aggressive cancer can be found in young adults that have have sickle cell trait or rarely sickle cell disease. In those with sickle cell trait the person carries one normal copy of the hemoglobin A gene (HbA) and one copy of the hemoglobin A gene harboring the genetic mutation found in sickle cell disease (HbS). These individuals do not have sickle cell disease but can develop kidney disease. These people may show visible (gross) hematuria, abdominal or back/flank pain, abdominal mass, enlarged lymph nodes and significant weight loss.

Pediatric Renal Tumors

In children below age 15, renal cell carcinoma is quite rare. In this age group the most common renal cancer is Wilms disease, The next most common types of kidney tumor in children are:, Clear cell renal cell carcinoma, Clear cell sarcoma and Rhabdoid tumors. Clear cell sarcoma is more likely than Wilms tumor to metastasize (spread) to the lungs, brain or bones. It is also more likely than Wilms tumor to come back after treatment.

Wilms’ Tumor or nephroblastoma

Wilms tumor can run in families from genes passed down from their parents. Most tumors are found in children around 3 years of age. Older children are less likely to get Wilms tumor. Above age 6, these tumors are rare.
People of African descent have the highest rates of Wilms’ tumor. Females are also more likely than males to develop the tumors. About 500 cases per year are diagnosed in the US. Wilms tumor occurs in otherwise healthy children. In 10% of cases occur in children with other developmental abnormalities. These include hemi-hypertrophy (abnormal growth on 1 side of the body) cryptorchidism (the absence of one or both testes from the scrotum), and hypospadias (a birth defect of the urethra in the male where the urinary meatus (opening) is abnormally placed. Symptoms can include abdominal mass, abdominal pain, blood in the urine, and fever of unknown cause. Body imaging (ultrasound and/or CT) is vital for diagnosis.
Staging-is determined by body imaging (US and/or CT) and pathology.
There are 5 stages depending on tumor size, tumor extension beyond the kidney, lymph node spread, distant metastases, and if it involves one or both kidneys. Stage 1-3 accounts for 90% of patients.

Prognosis
Prognosis depends on stage and pathology. Therefore the staging always should include the stage and pathology. There are 2 prognostic groups based on the pathology of the tumor.
Favorable – has the classic 3 tissue components-the triphasic nephroblastoma
Based on the look of the Wilms tumor cells, doctor may put the tumor into one of two subtypes:
If the nuclei of the cells look normal it has a favorable histology. About 95% of Wilms tumors fit into this subtype, which means they are easier to cure.
If the nuclei of the cells look much larger than normal and do not have a normal shape this is a unfavorable histology.
Any stage that contains anaplastic pathology carries a worse prognosis than the same stage with favorable pathology.

Treatment
It is a very treatable tumor with 90% of patients surviving more than 5 years. It must be stressed that the treatment approach is vital to achieving a good response. A multi-disciplinary team consisting of pediatric specialists (pediatric surgeon/urologist,pediatric oncologist, pediatric radiation oncologist) that have extensive experience treating children with cancer is needed. Most patients should be offered a clinical trial to obtain the most advanced treatment. In the US at a children’s oncology center Wilms tumor with the favorable histology subtype has a 90% to 98% survival rate. Wilms tumor with the unfavorable histology subtype has a survival rate between 60% and 80%

Pediatric Renal Cell Cancer

This is a rare diseases in children. Renal cell carcinoma is more common than Wilms’ tumor after the age of 10 years. However, it is far less common overall than Wilms’ tumor.
Conventional clear cell renal cell carcinomas make up about 15% of kidney cancers in children. While in young adolescents age 15-19 renal cell carcinoma can account for 2/3rds of kidney malignancies .They can present with similar findings as an adults. In this age group papillary renal cancer is more common than in adults. There is a unique type of renal cancer (genetic translocation cancer of the kidney) that can be found in young adults and probably children as well.

Inherited Disorders:
There are a several inherited disorders that include kidney cancer as part of other abnormalities.

Birt-Hobbe Dube Syndrome
This is an inherited syndrome. where people can get multiple chromophobe and/or oncocytic kidney cancer. Renal oncocytoma (benign) can also occur. People can get benign tumors of the hair follicle ,a rupture of a bleb-a bulge in the lung tissue-that can cause a spontaneous pneumothorax (air in the pleural cavity of the chest between the lung and the chest wall) and colon polyps.

Von Hippel- Lindau Syndrome
As noted above, VHL is a rare disease that runs in some families. It is caused by changes in the VHL gene which increases the risk of kidney cancer. It also can cause cysts or tumors hemangioblastoma) in the eyes, brain, and other parts of the body (including a tumor of the adrenal gland called pheochromcytoma.). There can also be light brown spots on the skin called “cafe au lait” spots There is genetic testing (via a blood test) for this abnormal gene. This is the same gene that can become abnormal in someone’s kidney after they are born and can cause clear cell kidney cancer to occur sporadically.

Tuberous Sclerosis
Tuberous sclerosis or tuberous sclerosis complex (TSC) is a rare inherited genetic disorder that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lung and skin. It is caused by mutations in genes that control cell growth and differentiation ( the kind of cell that develops).About 50% of people with TSC have learning difficulties with some showing signs of autism. 60-80% have kidney tumors called angiomyolipoma that frequently cause blood in the urine, they can also have benign cysts of the kidney and rarely renal cell carcinoma. Skin abnormalities will be present in 96% of people with TSC. Most cause no problems but are helpful in diagnosis.