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.
http://prostatecancerinfolink.ning.com/profiles/blog/show?id=2034917%3ABlogPost%3A22823&page=3
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. : – ))
Hi, Leah
Adding to your superb list of recommendations is one factor we prostate cancer patients need to recall: We can’t leave all the post-treatment work to the doctors. They generally have too large a patient case load, with reduced income due to stringent Medicare and other health insurance plans’ fiscal reimbursements for physical treatment, let alone “minor” concerns like helping patients with things like sexual functioning after medical treatment!
Let’s face it, most doctors are part of the “rat race”. Many are overworked and undercompensated, given their years of training and skill level.
Still,as many of your very valid points confirm, doctors could be more straightforward and caring with their patients and that would help a lot. But even the most skilled and caring doctors who take the time to talk with their patients after treatment or at least make appropriate referrals, can’t do it all by themselves. Not just because they won’t, or because they are not trained to do so (and most aren’t), but because they can’t – given their busy schedules.
Besides, I would argue that prostate cancer patients and those who love them are our strongest resource. Your dedication to writing your blog is a case in point.
So what alternative is there? I published an article in a York College (Canada) newspaper half a year ago, about the need for patient education. That is not the same as patient advocacy – where people go to bat for patients by zooming in on policy makers and administrators. Rather in my mind patient education has to do with qualified folks working with patients and survivors who need direct personal guidance.
It may come down to creating a new category of volunteer and paid prostate cancer caseworkers: We need to train prostate cancer survivors who feel they have done relatively well for themselves, to help others do the same.
This would require screening prospective patient educators for stability, communication skills and knowledge, and then training them further to sharpen these skills. Who would the trainers be?: People like you and me and doctors who I believe would agree to be trainers, but especially those of us who have gone through the process ourselves and have gotten through most of the confusion after discovering the best available resources.
I refer here to many survivors who have educated ourselves about prostate cancer more than most, even though few of us have no M.D. behind our names.
What a novel idea: Paying people to work in behalf of other PCa patients and survivors who need informed guides to spend time with them (a) to help eliminate confusion while the patient decides on a treatment option, and (b) . to help survivors and those who love them find the kind of information and related resources they need to offset the sexual and urological dysfunctioning that is often our lot.
There’s a lot more to say about this sort of self-help approach. But other than doctors or trained nurses (as in a new national patient education program that recently started in Arizona), who is better equipped than we to help guide other prostate cancer patients who need help?
All it would take is time, money, concern and further training. But as tall an order as that might be,to borrow from Th. Herzl, if we will it, it can be more than a dream.
Rabbi Ed Weinsberg
Author, Conquer Prostate Cancer:
How Medicine, Faith, Love and Sex
Can Renew Your Life