Resources

  1. Videos, blogs, and helpful information. Updated 02 November  2017

Local Awareness Campaign

Quad-City Times article of former Buffalo Bills star Brooker Edgerson wants to help men beat prostate cancer.  Click here to view.

 Prostatepedia, a division of Rivanna Health Publications, has a single mission: to help leading prostate cancer researchers explain their work and its implications to prostate cancer patients, activists, and health care providers.
Formerly known as Prostate Forum, Prostatepedia will be the monthly periodical, features informal conversations with leading experts.  Information covered are new drugs, staging treatments, side effects, immunotherapy, and emerging technologies.  Click here to get started.

Prostate Cancer Results Study Group:

Knowledge is power.  Take the fear out of your treatment decision with the ground breaking work of the Prostate Cancer Results Study Group.  Here you can access what stage your Prostate Cancer is at and compare charts of success for the treatment under consideration.  Also provides an explanation of each treatment.  Go to http://www.pctrf.org/

Erectile Dysfunction and depression –

Dr. Nelson E. Bennett, Urology Sexual Health Specialist, Lahey Hospital and Medical Center presented at PHEN’s February 10th monthly meeting and webcast, hosted at Dana-Farber Cancer Institute in Boston, MA. He cited several studies, noting the linkages between erectile dysfunction and depression.

View Dr. Bennett’s full webcast presentation click here
(Use Internet Explorer, Firefox, Safari, not Google Chrome) Note:  Dr. Bennett presentation starts after four minutes into the video.

Light therapy

Hopefully ” a huge leap forward” for early prostate cancer treatment.  Read about it from Medical News Today http://www.medicalnewstoday.com/articles/314830.php

Here is a link about this treatment being done in the UK https://www.youtube.com/watch?v=81TfadXoXvo

 Testosterone Levels + Hormonal Therapy

Dr. Snuffy Myers talks about the importance of testosterone levels during hormonal therapy as explored in conversations with Dr. Laurence Klotz and Dr. Daniel Suzman in Prostatepedia September 2015.

Watch the video!

Dr. Snuffy Myers talks about PSA-negative prostate cancer.  Watch the video on U-Tube

Radiation-Hormone Combo

Androgen suppression boosts radiation therapy survival.  Click here to view.

 

Prostate Cancer Insights Newsletter May 2015 issue features discussion on seed implant radiation therapy and side effects of surgery and radiation. Click here to view.

Recurrent Prostate Cancer – From Les Schjelderup:

All,
A couple of you that were not able to attend on Sept 10, 2015 asked me to keep them informed as to what went on at that meeting. These are just a few comments on the meeting so if you are not interested you need not read on. The intent of this group is to educate ourselves and each other about Advance Prostate Cancer.
We watched a 30 minute video of Dr. Maha Hussain on “Treating Advanced Prostate Cancer” presented at the Sept 2014 Prostate Cancer Research Institute conference in LA. She gave a brief history of prostate cancer knowledge and what can now be done and her idea of where effort should be concentrated in the future. One comment she made that I think we should all keep in mind when any doctor states a life expectancy. Paraphrased, she said: “I am not God. I cannot tell you when YOU will die. I can only give you statistics on what has happened in the past.”
Because of distance, Mr. Lee was not able to attend but he had given me some information about his situation and what good results he has had with Dr. Gary Onik in Fort Lauderdale, FL. Mr. Lee is 75 years old, Gleason score 9, and has had prostate cancer for over 20 years. Although in good physical shape all of his life his health was deteriorating due to prostate cancer to the point where he and his family were preparing for Hospice care. Dr. Onik did a Cryoablation procedure at the sites where the cancer had spread where he froze each site and at the same time injected a drug. Currently Mr. Lee says he is enjoying much improved health with playing golf, boating, jet skiing, hiking, and taking long walks etc. The web site is: http://www.garyonik.com but I did not find information on this specific procedure.
Mr. R. Smith (Gleason score 8) from Davenport gave an excellent report on his treatment and results at the Dattoli Cancer Center in Sarasota FL where they specialize in the diagnosis and non-surgical treatment of prostate cancer. Mr. Smith handed out a list of all the drugs he is and has taken and displayed 2 full body scans showing the cancer location in numerous lymph nodes. His treatments required an extended stay in Sarasota but feels the results were worth the time and expense. http://www.dattoli.com.
If anyone is seriously interested in speaking with either of these men, let me know and I will request they contact you.

Online Prostate Group

If you are suffering from advanced stage or recurrent prostate cancer, then please click here: Advanced Prostate Cancer Group

For men in all stages of prostate cancer, we have a second, more general prostate cancer group.  Please click here: Prostate Cancer Group

Online Prostate Blogs

Newly diagnosed prostate cancer support groups. They’re useful online sources of information.  It’s easy to use and can be totally anonymous, if you wish.  Please join.

There are two groups..you can join one or both.

The advanced prostate cancer group at:

https://healthunlocked.com/advanced-prostate-cancer

 Webcast on the role that Chemotherapy plays with Prostate Cancer with Daniel H. Shevrin, M.D. who is a 30 yr Medical Oncologist at NorthShore Skokie Hospital and NorhtShore University Health – Evanston Hospital.  Note: You may want to forward the webcast to 13 minutes where his presentation starts.  The link to the webcast is https://www.mainstreamchicago.com/ustoo-inverness-webcast/

The more general prostate cancer group for newly diagnosed and general information.

https://healthunlocked.com/prostate-cancer-community

Here are some unique features of our new online prostate cancer support platform.                * You can delete any or all of your information, permanently, at any time                                 * Direct message to other members                                                                                                * Post your photo’s with ease                                                                                                           * Member profiles (up to you how much info you want to include)                                             * Connect with other members in person (up to you)                                                                   * Start your own local support meet-ups                                                                                        * Connect globally about treatments locally                                                                                   * Follow all posts or just the ones you are interested in.                                                               * No more endlessly long emails containing copies of other people’s emails                             * BETTER SEARCH of past topics and emails.                                                                                 * Easy to read and post on mobile phones and tablets

Importance of Family Cancer History in relation to Prostate Cancer

Produced by ZERO (ZEROCANCER.ORG) an hour session about Prostate Cancer and your family tree.  Implications for Cancer risk and Genetic testing.  The link to this informative information is https://www.youtube.com/watch?v=W-xnXUDVsg0

Importance of Family in relation to Cancer  (information geared towards all cancers)

Preparing for the Death of a Terminally-Ill Loved One: What to Expect, and How to Help the Entire Family Move Forward

 

Living with Cancer: Eight Things You Need to Know

 

Coping with a Child’s Illness While You’re in Recovery

 

Eating Well During and After Your Cancer Treatment

 

7 Side Effects of Cancer Treatment, and How to Cope with Them

 

PTSD and Life After Cancer

 

How to Create a Peaceful At-Home Hospice for Your Loved One

Advance Prostate Cancer

Dr. Gus Harb informed us that Urolgical Associates P.C.  are now also specializing  care for those that have progressed to advance prostate cancer at our November meeting.  Dr. Harb was very positive about the new treatments that are here now and the future treatments that will be coming.  His main emphasis was for the comfort of the patient.  Urological Associates P.C.

The Us Too web site Advanced Prostate Cancer at http://www.ustoo.org/Advanced-Prostate-Cancer    that gives you links the following material provides accurate, unbiased information that’s most relevant and most useful to helping to develop informed decisions for effectively managing advancing prostate cancer.  Also gives a link to a brochure “Principles for Managing Advanced Prostate Cancer” at  Advanced Prostate Cancer .

Dr. Eugene Kwon presented the topic of OligoMetastatic Disease at the annual meeting of PCRI 2014  His presentation is on UTube and can be access from this link .

Dr. Snuffy Myers talks further about using Taxotere in men who have been newly diagnosed with metastatic prostate cancer.  Click here.

Dr. Snuffy Myers talks about oligometastatic prostate cancer.  To view it on you tube go here .

Study links normal stem cells to aggressive prostate cancer More info here

Subj: High Intensity Focused Ultrasound (HIFU) is groundbreaking non-invasive, safe, outpatient procedure for localized prostate cancer
(Miami, FL) Dr. George Suarez, a Miami-based urologist, is the pioneer for a newly FDA approved treatment for prostate cancer called HIFU (high intensity focused ultrasound). HIFU received FDA approval in October of 2015 and is a precise, targeted, non-invasive therapy for localized prostate cancer that uses ultrasound energy to heat and destroy specifically targeted areas of tissue without damage to surrounding tissue. This outpatient procedure allows patients to return home the same day and significantly decreases the rate of prostate cancer recurrence.
During HIFU, the sound waves pass through healthy tissue without causing damage. At the focal point of the sound waves the tissue temperature rises to 90 -100 degrees Celsius destroying the targeted tissue while preserving the surrounding healthy organs. After administering HIFU for more than a decade, Dr. Suarez noted a significantly decreased risk of impotence from 80% to 2% and from 20% to a mere 0.4 percent in urinary issues when compared to other prostate cancer treatments, such as surgical removal of the organ or radiation. In addition, studies show a 95.4% decrease in PSA levels from baseline which indicates successful ablation of the prostate. A durable response was also seen in 80% of patients with low risk disease at 10 years of follow-up.
Dr. Suarez is considered the world-wide leading expert in HIFU having helped pioneered the recent FDA approval. In addition, he has performed over 2,000 HIFU treatments – more than any other doctor in the world – including the first HIFU treatment in North America. He has successfully trained several hundred physicians throughout the world in the use of this breakthrough treatment and wrote the HIFU physician’s training manual. In 2003, Dr. Suarez established the first HIFU facility in North America at the Universidad Madre y Maestra, Santiago, Dominican Republic. He subsequently established similar HIFU facilities throughout Canada, Mexico, South America and the Caribbean, all countries in which HIFU was approved based on European (CE) approval that dates back to 1996.
“From the very beginning since designing the FDA trial protocols, I never doubted that HIFU would one day receive FDA approval,” said Dr. Suarez. “Having had the opportunity to perform the procedure outside the U.S. for over a decade has provided me invaluable experience, knowledge and an advantage to teach others that are just now becoming familiar with the technology about the art form of operating this device and performing the treatment.”
HIFU represents an historic advancement in the treatment of prostate cancer, which affects hundreds of thousands of men in the United States. With one in seven men being diagnosed in their lifetime, prostate cancer is the most common non-skin cancer among American men. The American Cancer Society estimates that approximately 220,800 men are diagnosed with prostate cancer each year, with six out of 10 cases diagnosed in men 65 or older.
Dr. Suarez’s new facility, International HIFU Center- MIAMI is located at The Miami Sunset Surgical Center, 7190 S.W. 87 Ave, Suite 403, Miami, Florida 33173. It will house the latest, state-of-the-art generation Sonablate and will offer the groundbreaking HIFU procedure starting January 2016.
For more information on Dr. George Suarez, visit  www.hifumedicalexpert.com.

Service to Find Prostate Cancer Clinical Trials. 

Finding an appropriate prostate cancer clinical trial can be challenging. To streamline the process, we encourage you to check out The Us TOO Prostate Cancer Clinical Trial Finder. It’s a free and confidential service that provides an efficient, user-friendly approach to identify clinical trials customized to the needs of each prostate cancer patient. It includes every clinical trial found on any clinical trial portal, hospital website, or the clinicaltrials.gov website.

CLICK HERE to visit the Us TOO clinical trial web page, which includes more information and a link to The Us TOO Prostate Cancer Clinical Trial Finder.

 

We encourage you to learn more about prostate cancer, testing for it, and treatment options. You are invited to speak directly with one of our volunteer members willing to talk directly with you. See a list of counselors on our Support Group Counselors/Contact Us tab.

As an additional resource, free of charge, Gilda’s Club Quad Cities provides support, education and hope to all people affected by cancer. One of their many helpful programs is Open to Options™. It helps patients identify important questions about their treatment options based upon their personal needs.  For more information on it and other activities, click here.

From the Cancer Support Community is the Cancer Experience Registry with one specifically for prostate cancer that USTOO had input to.  From here you can learn from others. click here

The American Cancer Society offers local transportation and lodging in Iowa City and elsewhere for Cancer patients in Find Support and Treatment. click here

 

 

Additional videos of interest:

  1. Importance of testing for prostate cancer: Short video from Quad Cities men about getting tested for prostate cancer.
  2. Ingenious new way to find cancer hiding in the body. This video reviews a treatment that helps doctors pinpoint location of cancer. Uncovering Cancer [1] 019s Secret Hiding Places | Everyday Health.
  3. Considerations for erectile dysfunction and prostate cancer treatments: Video by Dr. John Mulhall, Director of Sexual Rehabilitative Medicine Memorial Sloan Kettering Cancer Center. Author of “Saving Your Sex Life: A Guide for Men with Prostate Cancer”.
  4. Considerations for watchful waiting treatment: Reflections on Active Surveillance.
  5. See the inspiring story of how Steve Cooper faced the diagnosis of advanced prostate cancer: Prostate Cancer Patient and IRONMAN.
  6. Steve Cooper is a spokesman for ZERO Prostate Cancer, a heartfelt tight-knit community activity that brings together athletes, cancer survivors, physicians, caretakers, family members, and friends. Their mission is to end prostate cancer. Their goals are to save lives and stop pain and suffering by advancing research, encouraging action, and providing education and support to men and their families. See ZERO: The End of Prostate Cancer.
  7. Youtube link for all of our free, educational mini-videos: https://www.youtube.com/channel/UCPYrfTJMCTfhBNZxb31Z1tg

Find more information about prostate cancer treatment options from the following informative websites: