The co-authors of Invasion of the Prostate Snatchers, blog alternate posts weekly. We invite you to post your comments.

Tuesday, September 22, 2015

Ah, Yes. . .Your Medical Records

When you are diagnosed with prostate cancer, keeping a folder with all your medical records can be a challenge, especially when you are working with several doctors and addressing different health concerns. But that is also when it is most important, both for your own understanding and safety, and for the use of any specialists you might want to consult for a second opinion.

The following is a list of the variety of information you need to preserve in your medical folder (MMF):

* A Chronological Log of all your PSA tests with dates, and note in the log any general health changes that might impact your PSA.

*  A copy of your urologist's notes that give the results of your Digital Rectal Exam (DRE).

*  A copy of your urologist's Transrectal Ultrasound (TRUS) report that lists the size of your prostate.

*  A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive for cancer, the extent of disease in the cores, and the location of the cancer in the prostate gland.

*  Copies of the radiology reports of any scans (color Doppler ultrasound, bone, CT, MRI), and if available, digital copies of the actual scans.

*  Copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems you may be dealing with, even if they seem minor.

*  A list of all your medications (including the dosages), and a list of any over-the-counter supplements you are taking.

It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns HopkinsSloan Kettering, Saint John's, for a second opinion. In fact if you live in a small town or in the country, if possible you should get yourself to a urologist or oncologist specializing in prostate cancer at one of the major centers for a consultation before making a treatment decision.

Keeping this medical record not only gives you a feeling of control, but it is extremely helpful when you consult different specialists. It is also something your partner can help you create. Giving your partner something constructive to do can help her (or him) deal with the worry they inevitably feel over your diagnosis.

I personally feel very strongly about the importance of keeping and organizing all your medical information when dealing with prostate cancer because I didn't do it. And I know how often I and my doctors have found the MMF invaluable support. Truly, we are partners with our oncologists and our urologists. Be an active partner.


Tuesday, September 15, 2015

2015 Conference Recap


Every year’s Conference presents recurring themes.  This year’s focus was prevention, combination treatment and timeliness were emphasized. We live in an era of exploding technological progress. It is a delightful problem to have a wealth of new treatment options and diagnostic tools.  However, just like buying a new car or a new smart phone, it takes a little time to learn the ropes and fully exploit the complete range and capabilities of the new technology.  A short blog can’t cover everything from a three-day conference.  Here are a few comments.
Dr. Dan Margolis, an expert on prostate imaging from UCLA, presented information on 3 Telsa, multi-parametric MRI’s capacity as a substitute for random needle biopsy in men with elevated PSA who have never been previously diagnosed with prostate cancer.  MRI offers the advantage of being equally or more accurate than random biopsy without relying on invasive techniques.
Dr. Chuck Drake, from John Hopkins, the preeminent expert in the world on immune therapy for prostate cancer, presented exciting data on how many of the new immune drugs work synergistically when given in combination.  “Synergism” means that when either drug is given by itself the anticancer effect is rather modest.  But when the two drugs are given in combination, the anticancer effect is multiplied.  Provenge has already been FDA approved for prostate cancer.  Hopefully Yervoy will also be an approved indication for prostate cancer in the next six to 12 months.  The combination of these two drugs together offers immense hope for jumpstarting immunologic treatment for prostate cancer.
Dr. John Mulhall, the expert in the world on sexuality and prostate cancer from Memorial Sloan Kettering, spent a lot of time emphasizing mindfulness in the selection of treatment. In other words, he was saying that it is better to minimize damage by selecting the least toxic form of prostate cancer treatment than trying to fix an already established problem.
Dr. Peter Grimm, sometimes called “The Father of Seed Implant Therapy,” delivered a candid overview of the world of radiation therapy, emphasizing the improved cure rates and reduced toxicity seed implant therapy offers.  He also spoke on how increased financial incentives to do IMRT, Proton therapy and SBRT, distorts the decision making process and slants treatment away from seed implants.
This is only the briefest of overviews and no words can express all the fun and games that Dr. Mark Moyad injected into the proceedings. I can only say that initial feedback from the attendees was extremely positive.

2015 PCRI Conference DVDs, which include all the presentations, will be available in six weeks at a suggested donation of $150. For more information, email:  In addition, the PCRI will be presenting its second annual Mid-Year Update, March 26, 2016, an afternoon of educational sessions in developments in the prostate cancer world. Laurence Klotz, MD who has been called “The Father of Active Surveillance” will be one of the speakers. Learn more at:

Wednesday, September 9, 2015

Taking Charge of Your Prostate Cancer Recovery:Fast Forward From the Old Model


In the old model of prostate cancer care, you were rushed into radical treatment--usually surgery or radiation--often without fully understanding all your options, or the risks and side effects involved. The entire process was focused on the tumor; minimal attention was given to you as a person, and little effort was made to explore the benefits of healthy lifestyle choices, immune-enhancing treatments, reasonable delays, and emotional support.  

The emerging new model of prostate cancer care recognizes the important role you can, and should, play in your recovery. The emerging model comprehends that simply attacking the cancer is not enough. Greg Anderson, who after surviving "terminal" lung cancer founded the Cancer Recovery Foundation, has said that "Retaining a medical team without doing everything you can to help yourself is like attempting to walk on one stilt."

So what do you need to know in order to take charge of your recovery?

 There are three common misperceptions about prostate cancer:

*The assumption that the disease is as dangerous as other cancers.
*The assumption that the urologist who did your biopsy is a prostate cancer expert.
*The assumption that a quick treatment decision is necessary before the cancer spreads.

First of all, prostate cancer is unique among cancers because the mortality rate is so low. Around two hundred thousand men in the U.S. alone are diagnosed with the disease every year, and less than 3% will eventually die from it, while a majority of men who have the far more common low-risk, slow-growing prostate cancer can anticipate living a normal life span, or dying of something else.
Your local urologist has a busy medical practice that involves treating problems like impotence, infections, incontinence, and kidney stones. He also does biopsies. But the average urologist performs fewer than five prostate removals (prostatectomies) a year--far too few to be considered proficient. He may be a talented doctor, but he is unlikely to be a prostate cancer expert. So once you have your biopsy results, it is best to consult a prostate cancer specialist, either at a major medical center, or at a high-volume prostate cancer clinic.

As for the third misperception, it is essential, before committing to any form of treatment, that you do your own research, and are convinced the treatment you choose is the right one for you.  Do not let anyone rush you into making a bad decision. Once your category of prostate cancer is identified (Low, Intermediate, or High Risk), get on the Internet and learn about every treatment option--including no treatment whatsoever--for your type of disease.  If you are over 70, and have low-risk disease, my advice to you is to find a doctor who has experience monitoring an active surveillance protocol.

Your role in your recovery, however, doesn't end with choosing your treatment. The emphasis on lifestyle changes has been one of the most significant shifts in cancer care in the last decade. A study at UCSF showed that improving your nutrition, reducing stress and getting more exercise, can lower PSA levels.  And according to a relatively new field of health psychology called "illness representation," your beliefs and expectations also impact the outcome of your disease. So take charge of your recovery, and have faith in your choice of treatment.

Tuesday, September 1, 2015

The September Prostate Cancer Conference


PCRI’s Prostate Cancer Conference for Patients is less than two weeks away.  The Conference is a unique event giving opportunity for patients to interact closely with experts in prostate cancer and leaders in research.  It is also a great venue to establish a connection with other patients who have “been there and done that.” This is a weekend to stay informed about the latest in prostate cancer.

That’s where the invited experts come in - we ask them to present their lectures in a way that can be understood by patients. This year’s program will stress breakthroughs in imaging, immunology, new hormone therapy, expanded roles for chemotherapy and the latest thinking on radiation.  The Saturday program will include:

·         Dr. Matthew Cooperberg from UCSF is providing an update on active surveillance .

·         Dr. John Mulhall from Memorial Sloan Kettering  will educate us on the latest methods for maintaining normal sexual function after treatment for prostate cancer.

·         Dr. Peter Grimm, from Prostate Cancer Center of Seattle, a world authority on seed implantation reviewing the latest breakthroughs in the area of radiation therapy.

·         Dr. William Oh from Mount Sinai will discuss breakthroughs in injectable radiation that targets bone metastases and new roles for chemotherapy.

·         Dr. Tomasz Beer from the University of Oregon will provide the latest thinking on the powerful new hormonal agents Xtandi and Zytiga.

·         Dr. Dan Margolis a world-renowned prostate imaging expert from UCLA will explain new used for multiparametric imaging of the prostate.

·         Dr. Charles Drake from Johns Hopkins, the world’s preeminent immune expert in prostate cancer will share the latest breakthroughs in this rapidly advancing field.

Dr. Mark Moyad, our moderator, will also be speaking about supplements and diet and how they can lead to increased survival and better quality of life. 

Cancer care is advancing so rapidly that it takes a team effort between you and your physician to achieve the best care.  For the average patient it is overwhelming to try to stay up to date with the latest clinical studies, journal articles and protocols. Often the best place for information is an event like this that specializes in distributing the latest information in a digestible format. 

On Sunday morning, most of our Saturday speakers will participate in a smaller group setting and review their presented topics.  The conference will end with a speaker roundtable to see what treatment the experts will recommend when confronted with actual patient situations. 

The PCRI Conference is for your empowerment. We want it to give you hope and a new confidence in facing the challenging tasks of making important treatment decisions that will impact you for the rest of your life.