SORT BY Relevancy
In the last year there have been several new articles that add greatly to our understanding of a rare form of kidney cancer, Hereditary Leiomyomatosis and Renal Cell Cancer.
Joyce speaks with Graham Lovitt, Chairman of the HLRCC Family Alliance and moderator of the international support list for HLRCC and webmaster of http://hlrccinfo.org
The primary resource for families and physicians is the HLRCC Handbook, compiled by the HLRCC Family Alliance to help patients and their physicians work together to manage their health.
Mike Lawing attended the Ninth European Kidney Cancer Symposium in Dublin last April, and has carefully crafted an excellent report to share that meeting with all the patients and family members who wished they could be there.
As usual, he has done an outstanding job.
In this interview, Mike and Joyce speak about this conference with Robin Martinez, moderator of the patient support conversation at Smart Patients, the successor to the ACOR "KidneyOnc" list. See http://www.smartpatients.com Participants were asked to submit questions in advance to Robin or to Powerful Patient.
In the conversation you will hear references to the following drugs:
Joyce is traveling to ten cities in September and October. Mike interviews her about who she saw, what she did, and what she learned.
Sept 20-21, Ann Arbor, Michigan
Sept 28, London, England
Oct 5-8, Budapest, Hungary
Oct 10, Oxford, England
Oct 12, Cardiff, Wales
Oct 13-15, Belfast, Northern Ireland
Oct 17, Dublin, Republic of Ireland
Oct 23, Nottingham, England
Oct 24, Birmingham, England
Oct 27, Manchester, England
For more details, see http://www.facebook.com/vhlfa/events
See also Blog Posts at http://www.powerfulpatient.org/blog
Jean S. from Oregon joins Mike and Joyce for a conversation about Birt-Hogg-Dubé syndrome, one of several recently identified genetic causes of kidney cancer.
Jean s a volunteer with the VHL Family Alliance, providing support for others with BHD. VHLFA provides patient support for people with a number of genetic tumor conditions, including VHL, HLRCC, and BHD.
Jean shares her story of diagnosis -- how she found out the name of the condition that was plaguing her -- and how she has learned to manage her health.
Please join us for this conversation. Jean will be taking calls during the program, or you can contact her later at http://vhl.inspire.com, in the conversation about BHD.
Dr. Stanley West is a gynecologist and reproductive endocrinologist and a leader in the National Uterine Fibroid Foundation. He is working hard to reduce the number of hysterectomies performed as a result of uterine fibroids. Nearly one-half of all hysterectomies are performed as a result of fibroids.
Dr. West believes that with earlier diagnosis and with the use of less drastic treatments, it should be possible to avoid hysterectomies in most cases. His recent book, "The Hysterectomy Hoax," outlines the options available to women with fibroids who want to retain their uterus. Among them is a myomectomy, or removal of the fibroid itself.
Dr. West handles some of the most difficult gynecological surgical cases involving uterine fibroids in the U.S. and has probably performed more myomectomies than any surgeon in the world to date.
Joyce and Julie speak with Dr. West about the fibroids that occur in the general population, as well as those that occur because of a genetic condition, Hereditary Leiomyomatosis and Renal Cell Cancer, HLRCC.
Many women experience fibroids in the uterus. In some cases, fibroids can be one signal of a set of issues called a "syndrome" that includes additional risks. Joyce speaks with Julie of the of the HLRCC Alliance about syndromes that include fibroids.
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