I initially posted my previous message about depression and PC treatment on a site I have been frequenting which brings together people from diverse backgrounds. You might be interested to read the responses I got, which came from a broad spectrum of the PC community: patients and their partners, a surgeon, psychiatrist, psychologist, a number of patient advocates and (indirectly) a nurse and sex therapist who works with PC patients.
After carefully reviewing the feedback that my post generated, I came up with a list of suggestions on ways that doctors can improve the lives of their PC patients. I’m going to share it with you, even though it’s impromptu and unedited.
How to Improve Life for Prostate Cancer Patients and their Partners
* The primary treater, e.g., surgeon, should refer the patient for “penile rehab” with a *highly competent ED specialist* at 2 months after RP. MSK automatically schedules men for a follow-up with their resident “sexpert”, Dr. Mulhall, at six weeks. There is some evidence that penile rehab might actually have a prophylactic effect for long-term ED. More important perhaps, ED therapy, usually with injections, can allow a man to have an erection again and feel better about himself, and the couple to resume sexual relations. Giving the patient a script for Viagra that you just keep renewing can be very costly to the patient, since if it doesn’t work in the beginning it probably won’t work for many months, if at all. Don’t throw out the pt’s money.
* Be honest with patients. Don’t promise them the moon and quote statistics that have no basis in reality. You are just setting your pts up for a fall. Be up-front about ALL potential side effects of treatment and their likelihood of occurring. Advise the patient of all interventions that can help. The risk is that the patient may walk out of the room, but it’s their life and their choice. As someone pointed out, ethically the patient should be told of *all* treatment options, even via written materials, and left to decide. Ultimately, patients prefer doctors who are honest with them and hate the ones who leave them most unprepared for adverse events, i.e., “blindsided”. For instance, my husb’s surgeon said that he was a textbook case for recovery and estimated his chances of getting ED at about 10% with nerve sparing. Afterwords, he told us both nerves had been spared when in fact only one had. We were not expecting ED so it came at us like a meteorite. It took us a very long time to even recognize that there was a problem.
* Provide the patient with a list of support groups in the area and online as well as other sources of help (e.g., telephone helplines, cancer organizations). One man wrote in a PC forum the other day that he was about to kill himself when he discovered the online PC community. That’s what saved him.
* Monitor the pt’s psychological state at follow-up visits, particularly in the case of younger patients. If you suspect depression, recommend that they seek help from a mental health prof’l. Many men have been helped with psychotropic medications, psychotherapy, group support, relationship counseling and encouragement of “spiritual” pursuits.
* Provide high-quality, candid written materials to pts on how PC treatment might affect them, in particular their sexuality and relationships with partners. Provide resources for treatment.
* Encourage patients to engage in religious or spiritual pursuits or other activities that give meaning and pleasure to their lives. A good social life is the best buffer against depression, so encourage patients to maintain close ties with family and friends. My husband, e.g., has spent much more time with his family since his PC diagnosis and it has been a boon to both.
* We should do more research on the problems of PC patients and partners. Find out which interventions have the most promise and try to implement them.
* Enlist the help of a variety of medical professionals including nurses, social workers and GPs, as is done in places like the UK. Follow their model of a “holistic”, team approach.
* Be especially sensitive to the needs and vulnerabilities of younger patients.
* For patients who have undergone ADT, be up-front about side effects and encourage relationship counseling. One study showed that as many as 50% of couples who’ve undergone this treatment are basically living together only because they don’t want to bother with divorce.
* Take a genuine interest in the patient before, during and AFTER treatment. Don’t cut ‘n run. Surgery, e.g., is a PROCESS, and the doctor needs to do proper follow-up and be available to the patient.
* Rule out physical causes of depression that can result from the cancer or treatment.
* Global changes have to be made to our healthcare system to allow doctors to spend more time with patients. We should try to turn out more GPs — they’re the first line of defense against illness. Revise our insurance system so that people who change or lose coverage don’t have to bounce from one GP to another. Best thing for your health is a GP who knows and cares about you.
* Help newly diagnosed patients navigate the maze of PC treatments by establishing a multi-disciplanary model for treatment. Patients should meet first with an oncologist, then consult with prof’ls in various fields, e.g., surgery, radiation, etc. They should be given accurate, specific information and then left to make up their own minds. NCCN practice guidelines are a good model. If the doctor can’t spend that much time with the pt, they can provide written info for the pt to review.
* If a pt experiences a loss of libido after treatment, help them understand the cause and recommend possible treatments.
* Mention online PC support forums like prostate pointers.org’s excellent PC and Intimacy list (PCAI), which now has a “wiki”, a sort of reference library for readers. Also for ladies, there is prostate-help.org’s “Ladies Only” forum.
* Explain to partners of men with PC how they can help. They are often clueless. Phoenix5.org has some good articles for companions, one of which is “10 Pointers for Women”. http://phoenix5.org/companions/10Pointers.html. This article, written by a man, describes the physiological,emotional and sexual changes that often follow PC treatment and advises women how to be most helpful and supportive.
* Be nice to your patients. Care for them and they will care for you.
One more thing: Replace the textbook, “Torquemada on Treatming Prostate Cancer” with something a little more modern. : – ))