Mrs. Betty Gallo

By: Theresa Morrow

Yesterday, March 4^th, the House Committee on Oversight and Government Reform hosted the first hearing on prostate cancer to take place in 11 years.

With two exceptional panels of experts, patients, spouses and advocates there was much discussion about the need for better early detection tests, more education and outreach to men, particularly in the African American community, and stressing the important role that women can play in the early detection of the disease.

The committee heard testimony about how men are reluctant to go to the doctor, get tested for prostate cancer, talk to the doctor about their health and/or their prostate, and the reluctance of their doctor to talk to them.  The committee also heard testimony about how women encourage men to go to the doctor and get tested, make sure they ask the right questions, and are involved in the decision making process if a potential problems is found, and provide comfort and support to their loved one.

WAPC’s own Betty Gallo gave a moving testimony on how prostate cancer can have a devastating effect on entire families and her own experience with her husband, former Congressman Dean Gallo. The power of women’s voices and the need for women to be engaged in prostate cancer advocacy was a theme throughout the hearing.

Experts from advocacy organizations, the Department of Defense Prostate Cancer Research Program, and hospitals like Roswell Park Cancer Institute and Johns Hopkins stressed the need for more research and tools that can separate the “lion” or aggressive prostate cancers from the “kittens” or non-lethal forms of prostate cancer. Dr. James Mohler of Roswell Park Cancer Institute even recommended the need to develop a blood or urine test that could be combined with the PSA to indicate who may not need a prostate biopsy, so that men with a non-lethal, or autopsy-type prostate cancer can be spared from biopsy and the related anxiety.

CBS News recapped the hearing in this video:

Complete video from the hearing can be found here:  Panel 1 and Panel 2

A complete list of witnesses along with their testimony is available on the committee website.

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By: Theresa Morrow, Co-Founder, Women Against Prostate Cancer

Over the past year or so there have been a number of prostate cancer studies released which have prompted a great deal of debate on important issues, including screening, diagnostic testing, diagnosis, treatment, comparative effectiveness of treatments and others.

The controversy around these issues has created a lot of confusion for the public. Men are often unsure if and when they should be screened for prostate cancer, some doctors aren’t sure if they should be performing prostate screenings and in the mean time prostate cancers are being detected at later stages in men across the country impacting not only them, but their entire families.

In order to help bring clarity to all of the discussion that is taking place, the House Committee on Oversight and Government Reform has announced that they will host a hearing titled, Prostate Cancer: New Questions About Screening and Treatment on Thursday, March 4^th at 10:00 a.m.

Betty Gallo, co-founder of Women Against Prostate Cancer, has been chosen to testify at the hearing and will be sharing her own battle with her husband’s prostate cancer, former Congressman Dean Gallo. She will represent the millions of wives, partners, sisters, mothers and daughters impacted by this disease each year.

In addition to Ms. Gallo’s testimony, WAPC will also be submitting written testimony. Outlined below are just a few of the major issues on prostate cancer that we will submit to the committee to consider:

• Prostate cancer is a complex and problematic disease that affects not only the male patient but can also be devastating to his wife or partner and other family members over many years.With Approximately 2 million men currently living with prostate cancer, there are countless partners, spouses and loved ones who are also suffering from the effects of this disease.  In addition, we are concerned about the reported increase in the percentage of younger men (35 – 60 years old) being diagnosed with metastatic prostate cancer which has lead to increased strain and stress placed on families with young children who in many cases will grow up without a father.

• More support and education is needed for partners, caregivers and the entire family when a man is diagnosed with prostate cancer.

• The early detection and appropriate treatment of clinically significant and potentially lethal prostate cancer remains a critical priority, especially among men at high risk because of family history, ethnicity, or other factors that define such risk.

• African-American men have one of the very highest rates of incidence and death from prostate cancer anywhere in the world. The increased rates in this community have a significant impact on the spouses and families of those with the disease.

• Physicians and their adult male patients should be encouraged to discuss the patients’ personal risks for prostate cancer and the individual need for prostate cancer testing at each patient’s annual physical exam.

• Men at higher levels of risk for prostate cancer (because of ethnicity, family history, and other factors) should be encouraged to undergo appropriate tests at a relatively early age.

• Until more accurate tests are available, all health care insurance plans should include coverage for annual tests for prostate cancer (including the prostate-specific antigen or PSA test and the digital rectal examination or DRE) – and follow-up diagnostic testing when appropriate. The PSA is not a perfect test, but it is all we have right now.

• Additional funding is urgently needed to support research into better ways to identify and discriminate between very low risk (“indolent”) and higher risk (clinically significant and potentially lethal) forms of prostate cancer at the time of diagnosis and into better forms of management for patients with or at risk for potentially lethal disease

Click here to read WAPC’s full testimony.

If you want to make your voice heard, visit WAPC’s Take Action Page.

If you are interested in learning more about the hearing or would like to tune in for a live webcast of the hearing visit: http://oversight.house.gov/index.php?option=com_jcalpro&Itemid=2&extmode=view&extid=126

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Women Against Prostate Cancer, a prostate cancer support group geared towards helping women and families affected by prostate cancer, wants to make sure every woman knows the facts about the disease. Below are the top 10 things women should know:

1. What is a prostate? The prostate is a walnut-sized male gland that contributes to the fluid that carries sperm. It is located just below the bladder.
2. What is prostate cancer? Prostate cancer occurs when a group of cells begins growing abnormally out of control in the prostate and invades healthy tissue. The cancer cells may also spread from the prostate to other parts of the body.
3. Who does it affect? Prostate cancer does not only affect men; the disease can have a devastating effect on entire families, especially wives and partners.
4. Who is at risk? According to the National Cancer Institute, 1 in 6 American men will be diagnosed with prostate cancer in their lifetime, for African American men the rate is closer to 1 in 4. Nearly 190,000 American men will be diagnosed this year, ultimately leading to 27,000 deaths.
5. What are the risk factors? While the exact cause of prostate cancer is still unknown there are dynamics that can increase a man’s risk of getting prostate cancer including:

*Age: A man’s chance of developing prostate cancer increases quickly after age 50.
*Family History: Those with a father, brother, uncle or other male relative who have had prostate cancer are at increased risk.
*Race: African American males are at the highest risk of developing prostate cancer, as they are up to twice as likely to develop and die from the disease.

6. What are the signs & symptoms? Early stage prostate cancer typically has no symptoms. Therefore, in addition to regular checkups, a man should see a health care provider if he experiences persistent hip or back pain, has difficulty urinating, feels pain and/or a burning sensation during urination, or has blood in his urine.
7. How is it caught early? The most common early detection methods include a digital rectal exam and a prostate specific antigen (PSA) blood test. Abnormalities may indicate the need for further testing. WAPC recommends that at age 40 (35 for high risk men) men receive a baseline PSA and digital rectal exam, and speak with their physician about annual screening thereafter.
8. What are common treatment options? Depending on the individual, there are several possible treatment options, each with a different side effect profile. The most common treatments include prostatectomy, radiation therapy, hormone therapy and active surveillance, among others.
9. What can women do to help?

   *Gently remind him to get a prostate screening. If that doesn’t work, pick up the phone and make an appointment. Early detection leads to the greatest outcomes and an improved quality of life.
   *Stand by your man. If your husband or partner is diagnosed, show support by attending doctor’s appointments or support group meetings with him.
   *Research. As mentioned above, when it comes to treatment options the choices are numerous. Learn all you can about each treatment, its side effect profile and expected outcomes, and share what you learn with your partner.
   *Seek support. Connect with other women who are facing the same challenge. Join a local WAPC chapter for support, and to continue the fight against prostate cancer.

10. What is the survival rate? While there is much work to be done to end this disease, there is hope. If detected early, prostate cancer is highly treatable. To that end, according to the American Cancer Society, the 5-year survival rate is nearly 100%.

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By: Theresa Morrow, Co-Founder, Women Against Prostate Cancer

Women Against Prostate Cancer (WAPC), a prostate cancer education and advocacy organization geared toward women and families affected by prostate cancer, is excited to announce the launch of its updated website: www.womenagainstprostatecancer.org. The site also provides a list of chapters and prostate cancer support groups across the country.

The new site will serve as a resource for women who want to learn more about prostate cancer and/or are looking for support following the diagnosis of a loved one. The site includes basic information about prostate cancer, resources for caregivers and information on clinical trials. Visit the site to read the stories of hope, sorrow and triumph from women who have experienced prostate cancer first hand.

The updated site builds upon WAPC’s mission to unite the voices and provide support for the millions of women, and their families affected by prostate cancer. WAPC advocates prostate cancer education, public awareness, screenings, legislation and treatment options.

Prostate cancer is not just a man’s disease, it can have a devastating impact on wives, partners and entire families. WAPC is empowering loved ones to get informed, get involved and help bring an end to this disease. With an estimated 2 million American men currently living with prostate cancer, and another 192,000 who will be diagnosed this year, there are potentially millions of women looking for answers to questions related to the disease and its impact on the family.

Please take just a few minutes to drop by and check out the updated site and new content at: www.womenagainstprostatecancer.org. And be sure to pass this on to friends, family and colleagues who may be interested.

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Click here to download a copy of WAPC’s new fact sheet Prostate Cancer, Sexuality & Intimacy: Everything You Wanted to Know But Didn’t Know to Ask.

Rehabilitation and Recovery

Q. Are there techniques for enrichment in intimacy after prostate surgery?

A. There are a number of techniques to improve intimacy after prostate surgery and couples may have to try several different options or a combination of options before they find something that works for them. Before surgery you will want to discuss penile rehabilitation with your physician (see next question) to enhance the ability to get an erection. Bear in mind that impotence is a common side effect of prostate surgery and it can take a year or more for the nerves damaged during surgery to recover. Meeting with a sex therapist may also help you discover creative ways to be intimate including using toys, masturbation and other methods. Additionally, men may also experience fluctuations in libido following surgery often due to psychological stress.

Q. What is penile rehabilitation?

A. Penile rehabilitation is used to treat erectile dysfunction caused by cancer therapy. It is an active
intervention to intermittently stimulate the penis during the recovery period. Penile rehabilitation should start immediately following the catheter removal. With many physicians, the use of oral pills, vacuum erections
devices, or penile injection therapies are the first to be pursued. However, the optimal regimen is still unclear and may vary by patient. Patients may try PDE-5 inhibitors (i.e. Viagra, Cialis, Levitra) and keep in mind that oral medicine will not work for everyone. Only about 90% of patients will respond to medicine, even in those who had normal sexual function prior to surgery,

Q. How long does sexual recovery take?

A. This probably comes as no surprise, but the time it takes for full sexual recovery is different for everyone and is impacted by the therapy they choose. Full recovery is achieved when the quality of erection is as good as it was prior to surgery. However, potency following surgery is usually defined as the ability to have intercourse in more than 50% of attempts.

Erectile Dysfunction (ED)

Q. Will there be ED post-radiation treatments (Proton, IMRT, EBRT)?

A. Maybe, the percentage of men with ED following radiation varies by the treatment regimen and can range between 10% – 60% of men.

Q. What are the available treatments for ED?

A. The most common treatments for ED include counseling/sex therapy, oral medications, penile
injections and vacuum erection devices. You can speak with your physician about obtaining a prescription for oral medications, penile injections or a vacuum erection device. In addition to or in place of these methods you and your partner may choose to visit a counselor or sex therapist who is specially trained to help people work through their sexual and intimacy problems through talk therapy.

Q. Will my partner suffer from depression due to ED?

A. It is common for patients to suffer depression from the inability to get or maintain an erection. Remember to show your support for him during this time by lending your ear and communicating your own feelings openly and honestly. Consulting with a sex therapist may help in this process.

Vacuum Erection Devices (VEDs)

Q. What is a VED and are erections different with VED’s?

A. A vacuum erection device or VED uses a vacuum to fill the penis with blood. Then, a rubber ring is placed at the bottom of the penile shaft to maintain the erection. Some men may feel discomfort from squeezing sensation at the base of the penis.

Penile Injections

Q. Are penile injections painful?

A. The injections usually sting a little. It is also very important to work with your doctor to determine the correct dosage in order to avoid priaprism which is a well known side effect caused by too high a dose or incorrect mix of medications for the injection. Priaprism is a persistent, usually painful, erection that lasts more than four hours without physical or psychological sexual stimulation. It make take some time to determine the correct dosage for each individual.

Q. How long will erections last?

A. Typically erections last 30 minutes to 1 hour, but may last longer. This may depend on a number of factors including a man’s general health and whether the correct dosage was injected properly. If an erection lasts more than 4 hours call a doctor or go to the emergency room immediately.

Orgasms, Incontinence & Toys

Q. Can you have an orgasm without an erection?

A. Yes orgasm can be achieved without an erection.

Q. Can vibrators help men acheive better orgasms?

A. While no studies have been done on this particular topic, couples are encouraged to try different methods such as incorporating vibrators to see if they work for you.

Q. Do penis rings help maintain an erection?

A. Yes, penis rings may help maintain and prolong an erection.

Q. Can there be urinary incontinence on arousal or orgasm?

A. Urinary incontinence is common during the early phase of recovery following surgery and over time the incontinence should decrease or stop all together, although there is a small chance that it may not. Be sure to speak with your doctor about the side effects of your chosen treatment method.

Stress, Anxiety & Depression

Q. Will my loved one become depressed or anxious as a result of prostate cancer?

A. It is likely that he will, this is why partners should always be encouraged to come to the initial consultation for prostate cancer treatment so that they have a better understanding of what the patient is experiencing. Remain patient and loving during this time and seek support through friends, family, faith communities or support groups.

Q. How can depression affect our relationship?

A. Depression has an impact on any relationship. Open and honest discussion is always recommended, and when necessary counseling or therapy can be helpful. One of the most difficult aspects of depression is that the signs and symptoms can creep up in many different areas including mood, appetite, sleep patterns, sex drive, behavior, memory, concentration, and more.

Q. How can i ease stress & anxiety related to intimacy after prostate cancer diagnosis or treatment?

A. Always maintain the perspective that restoring potency following prostate cancer treatment is part of the recovery process. In other words, as with all treatments, recovery takes time. It has been reported that erection can return as far out as 4 years after surgery. You can also encourage your partner to see a therapist or attend therapy with your partner. As stated earlier, it may be helpful to find support through friends, family, faith communities or support groups.

If you have additional questions that you would like to see answered on this page, please submit them toinfo@womenagainstprostatecancer.org

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*   The studies offer conflicting evidence about the possibility of a prostate cancer-specific survival benefit associated with the regular use of prostate specific antigen (PSA) testing and digital rectal examination (DRE).

*   These studies provide no convincing evidence that mass screening of men over 50 or 55 years of age will lead to a prostate cancer-specific survival benefit within 10 years.

We have come together to make two clear statements about these trials:

*   Above all we thank the patients, the investigators, and the national authorities that funded these two trials for their efforts. The development and implementation of these trials over the past 16 years has been an enormous commitment by all concerned.

*   We enthusiastically support the continued follow-up of patients in the prostate cancer arm of the PLCO study for at least a further 5 years, through 2014, as originally envisaged.

In addition, in the long-term interests of the health of every man in the USA, and with health reform recognized as a national priority, we wish to state the following:

*   Every man, regardless of his age, has the right to know whether he is at risk from prostate cancer, a disease that still kills over 28,600 American men every year, and many more around the world. We encourage all men to be proactive, and to seek out information and support in regard to their health.

*   We shall continue to encourage every man to discuss his individual risk for prostate cancer with his doctors, and to request the appropriate use of PSA and DRE tests until better options are available. Further clinical action based on results of these tests is also a matter for serious discussion between each patient and his physicians.

*   We call upon the federal government to emphasize the need for more research into early detection technologies and methods that will lead to better and more accurate diagnosis of prostate cancer.

*   We call upon Congress to increase funding for the Prostate Cancer Research Program at the Department of Defense.

*   We call upon the National Institutes of Health to increase funding for prostate cancer research through the National Cancer Institute.

*   We call upon the medical research community to place greater emphasis on the development of new clinical tests that can differentiate between those men at greatest need for aggressive prostate cancer treatment and those with indolent forms of the disease who can be well managed without invasive treatment.

This statement is approved by the following US-based prostate cancer advocacy, education, and support organizations:

*   Malecare Prostate Cancer Support – www.malecare.com

*   Men’s Health Network – www.menshealthnetwork.org

*   National Alliance of State Prostate Cancer Coalitions – www.naspcc.org

*   Prostate Cancer Foundation – www.pcf.org

*   Prostate Cancer International – www.pcainternational.org

*   Prostate Conditions Education Council – www.prostateconditions.org

*   Prostate Health Education Network – www.prostatehealthed.org

*   The Prostate Cancer Mission – www.pcmission.org

*   The Prostate Net – www.prostatenet.org

*   Us TOO International Prostate Cancer Education and Support Network – www.ustoo.com

*   Virginia Prostate Cancer Coalition – www.vapcacoalition.org

*   Women Against Prostate Cancer – www.womenagainstprostatecancer.org

*   ZERO – The Project to End Prostate Cancer – www.zerocancer.org

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On Tuesday, January 15th, from 7:00am to 12:00 pm Men’s Health Network in partnership with a number of other organizations including Women Against Prostate Cancer will be hosting The Annual Tennessee Legislative Screening on the Legislative Plaza of the Capital in Nashville. Everyone who works at the Capital is free to attend and take part in screenings including cholesterol, glucose, body fat, blood pressure, osteoporosis, colorectal cancer (take-home test), and PSA. Judy Seals-Togbo of Women Against Prostate Cancer and Men’s Health Network Tennessee will be attending and we invite all members of WAPC in the Nashville area to come help out with the screening. There will also be a special photo opportunity for WAPC members with the Tennessee Speaker of the House, James Naifeh.

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