Dr. David Houchens introduces this month’s conversations about erectile dysfunction for prostate cancer.
I have 35 years of experience in preclinical and clinical cancer research. I started having PSA tests done when they first became available and noted that my PSA was going up over time. Ultimately, I had a biopsy in 2001 that was positive for prostate cancer with a Gleason score of 7 (3+4) and with positive margins. The gold standard for treatment at that time was to have a nerve-sparing prostatectomy. Mine was an open surgery because robotic surgery was not readily available in 2001. After a number of months, my PSA did not go to nondetectable, and it started a slow but steady rise. With the treatment guidance of Dr. Charles “Snuffy” Myers, the PSA rise was slowed significantly and held in check for three years. After that time, a steady rise led to a year of androgen deprivation therapy (ADT). As expected, the PSA became nondetectable; however, nine months after going off ADT, when my testosterone started rising again, so did my PSA. The newer scans available in the US today were not available in 2008, so I flew to the Netherlands for a Combidex scan to locate possible areas of spread. One distant node area was found that was suspicious. Back in the US, I had salvage radiation plus ADT. In addition to the usual treatment of the prostate bed and surrounding area, the suspicious area plus some areas found with color Doppler ultrasound were also radiated. Since that time nine years ago, my PSA has remained nondetectable and, of course, I will continue to have regular PSA checks throughout my life. My wife has been a very supportive caregiver and has participated in my decisions and treatments. She and I have been active in support groups and in leading discussions on intimacy at support groups and conferences.
The conversations in this month’s issue of Prostatepedia point out the problems that many men have with side effects after their treatment for prostate cancer. Although most urologists and radiologists mention the possibility of incontinence and erectile dysfunction (ED), the usual statements indicate that those issues are probably transient and clear up over time. Some follow-up programs include penile rehabilitation but this is usually only available in large academic centers and thus not accessible to a large number of the cases throughout the country. At the time of prostate cancer diagnosis, most men focus on combating the cancer and assume that they can manage any side effects. It is only later that they realize some of those effects have become a life-long matter.
In this issue of Prostatepedia, Drs. Khera, Burnett, and Kaplan give clear summaries of the approaches that can be used to treat ED after surgery or radiation. One thing most men do not realize is that ED can be the result of conditions other than treatment for prostate cancer. These include diabetes, heart condition, blood pressure issues, obesity, and age. These comorbidities need to be considered in treatment. If men have some degree of ED prior to prostate cancer treatment, recovery will not lead to fewer effects of ED than the patient had before treatment. There are suggestions in the conversations of what should be discussed with your doctor prior to prostate cancer treatment, and these should include addressing side effects as well as experience with the selected therapy. As with any medical or surgical treatment, if you do not feel comfortable with your physician, you may want to consider finding one who can address your questions comfortably and has the expertise and experience to give excellent care for your condition.
Also in this issue is a conversation with a patient, Brian M. He gives a clear description of what he went through on his prostate cancer journey including penile rehabilitation and therapy for ED. Much of what he experienced is seen by a number of men facing this diagnosis, although each case has its own issues, and there are not necessarily common factors for each man. He points out the advantage of having a spouse or partner go with you to medical appointments since the questions and answers heard by the caregiver can sometimes be different from those heard by the patient. He also found his participation in a local support group to be helpful.
An important conversation in the issue is with a caregiver, R. She describes what she and her husband went through with ED after his treatment. Since prostate cancer has been described as “a couple’s disease” due to the effects on intimacy, it is important for the man and his partner to be fully aware of what to expect with the side effects from, not only the surgery or radiation but also the longer-term effects that may exist especially with additional therapy such as ADT or chemotherapy. The selection of a doctor should not be based solely on expertise with the primary treatment but also their knowledge and ability to discuss and manage side effects.
In most cases, there is not a critical need to have treatment immediately, so there is time to study and read information on the disease and to talk to others who have or are going through treatment. For those with high-grade, more aggressive cancer, treatment may be necessary more quickly. In those cases, a medical oncologist who specializes in prostate cancer should be brought on the team.
Here are some points to consider when addressing your next steps after a diagnosis of prostate cancer:
- Ask for copies of all medical records (such as lab tests, scans, and treatment notes) and keep those in a file or binder.
- Take a spouse/partner with you to medical appointments.
- Make a list of questions to ask when meeting with the doctor or medical team.
- Talk to the doctor or medical team about any side effects you are having related to procedures or medications.
- Ask clear questions about what to expect regarding ED and incontinence, including what treatments are suggested or used to reduce the effects or to aid in correcting the problems. If you do not feel comfortable with the responses or the fact that the physician does not consider these as something to worry about, you may want to consider a second opinion or different doctor.
- Attend a support group if there is one in your geographic area. If not, participate in a phone support group.
Here are some suggested resources for support:
- Visit Us TOO [http://www.ustoo.org/] to find a support group. Each state is listed with information on meeting time, place, and contact person.
- If you are not near a local support group, the link to a nationwide phone support group is https:// http://www.ancan.org/support-calls. There are calls specifically for early-stage and more advanced-stage prostate cancer and a separate call-in for caregivers.
- Us TOO International-Prostate Cancer Support and Education has a private women-only Facebook page called “A Forum for Her.” Women can join by contacting TerriL@ustoo.org.