Alicia Morgans, MD, MPH, is a medical oncologist who specializes in prostate cancer management at Northwestern University Feinberg School of Medicine in Chicago, Illinois, where she is an associate professor in the Division of Hematology/Oncology. She is also an editor of the Advanced Prostate Cancer Center of Excellence for the UroToday web site.
The following article by Dr. Morgans is reproduced here today with the kind permission of UroToday.
A Million Faces: What Prostate Cancer Awareness Means to Me
Prostate cancer is something that touches most of us, at least indirectly, at some point in our lives. It is the most common cancer in American men, and the second leading cause of cancer death in this country. Our continued efforts as clinicians, researchers, patients, family members, loved ones, and advocates are critical if this is to change. And to me, prostate cancer awareness means that we must recognize the many ways people feel prostate cancer, and know that we can make a difference in at least as many ways. Prostate cancer awareness means recognizing the millions of faces of this disease, and doing what they need to change the status quo.
Prostate cancer awareness to me is Mr. Harrison. When I met him, he was a 71-year-old healthy man, likely with decades of life ahead of him. This was his belief too until he heard the words “you have metastatic prostate cancer.” He was stunned. He and his family were all about prostate cancer awareness, and he was the poster child of caution when it came to his health. He had been getting PSAs with his PCP every year until his PCP stopped performing PSA screening tests and DREs because of the D recommendation in the USPSTF guidelines. About 2 years after this, some back pain led to a scan that demonstrated widespread metastatic disease that was diagnosed as prostate cancer. He came to see me and started on his continued journey with this disease.
Prostate cancer awareness is spreading the word about PSA screening. Mr. Harrison isn’t unusual, but he should be. Since the USPFTF D recommendation regarding caution with PSA screening, I have seen numerous men with a similar story. It is up to each of us to counsel our friends and family that this previous guidance has been revised, at least to a C, and further research has been recommended. As clinicians and researchers, we must continue to optimize our screening assays and get the right treatments to the men who need them, avoiding surgery and radiation in men with low-risk cancer that will never threaten their lives. Mr. Harrison is a reminder to me that prostate cancer awareness requires vigilance on the part of patients and their loved ones, speaking up if they want to talk about screening, and ensuring they get testing if it makes sense for them.
Prostate cancer awareness to me is Mr. Orlen. I met him when he was 68 and had been on the prostate cancer journey for a decade already. He had undergone a radical prostatectomy with the esteemed Dr. Catalona at Northwestern University, but it had come back a few years later. He went on to salvage radiation and treatment with ADT followed by abiraterone, then moved to Nashville where I met him. We worked to get him treatment after treatment over several years and found ourselves near the end of our FDA approved options. He tried a clinical trial with our urologists and came back to me. Radium was approved and available at this point, for nearly a year, but issues with concerns over compounding led my institution to hesitate in providing it. Luckily, persistence on the part of my colleagues and me finally was successful, and we were able to offer it just as the clinical trial failed him. Mr. Orlen received radium, then olaparib, then enrolled on two additional clinical trials before he finally enrolled in hospice and passed away, nearly 3 years after receiving radium. He felt well, even on hospice, due to our efforts in maximizing the quality of life each day, knowing that these days were not possible only a few years before.
Prostate cancer awareness to me is ensuring access to therapies to all men, and engaging every man with prostate cancer in research protocols that can move our field forward. These efforts are not just for men who live in urban areas near large academic centers of excellence. A majority of men with prostate cancer are treated in community centers, and many never think about partnering with academic or private institutions in their areas that may offer clinical trials or treatments not available in smaller centers. We must all continue efforts to ensure that community urologists and medical oncologists hear about the amazing advances being made, and feel comfortable providing these treatments to the men they care for. Academic physicians must make an effort to be available to their colleagues in the community, and pledge to work together with all of the members of a patient’s clinical team to provide access to clinical trials and excellent local care. It literally takes a village, and that starts with us.
Prostate cancer awareness to me is Bill Morgans. I have known him since before I could talk and loved every minute I had with him. Bill was my grandfather, who was diagnosed with prostate cancer about a month after I started my first faculty member position with a focus in GU oncology and prostate cancer research. For as long as I had known him, my grandfather disliked physicians and hospitals, preferring to pursue natural and holistic methods to improve his health. Now that he was in his 80s with a diagnosis of high risk localized disease and a PSA in the hundreds, I appreciated that he was open to talking about his preferences for treatment, and what he would and would not do. After initial treatment with bilateral orchiectomy (the natural option), he felt well and continued to live independently. Within a few years, however, dementia that had started to set in before his diagnosis was more limiting, and he moved across the country to live with my aunt. I heard when his disease became castration-resistant (still non-metastatic) after his move and got a call in the fall of 2017 when his disease progressed to widespread metastatic disease, urinary outlet obstruction, bilateral hydronephrosis, recurrent urinary tract infections with subsequent bacteremia, and intense pain. Coupled with his advanced dementia, and his clearly stated wishes, he was admitted to an inpatient hospice and passed away with his family around him within a few days.
To me, prostate cancer awareness is recognizing that every man deserves the right to forge his own path, even if data and years of medical training tell us what is “right”. As clinicians and loved ones, we must understand that it is our duty to guide, but not our right to dictate the way things should go. Although personal values, preferences, and beliefs may challenge our understanding and be flatly wrong if our goal is solely to extend life, we must recognize that the goals of our patients come first. Quality of life and maintaining a sense of self truly is the most important thing to many men, it this must be respected. When my grandfather passed away this fall at 91, he did so knowing that he had lived an amazing life, loved until his last breath, and had a family that would adore him forever. This is what I wish for any man whose life is taken by prostate cancer until we make death from this disease history.
Prostate cancer awareness to me has many faces and many meanings. Every day that passes is an opportunity for us to make a difference in reducing death from disease, prolonging life, and making lives lived with prostate cancer better. Until there is no death or suffering from prostate cancer, I think of this month as one of incredible importance and urgency, and one whose meaning and mission do not stop on September 30. If we aim to make this a world that is past needing a prostate cancer awareness month, we must all do our parts. The time is now.
Thank you Dr. Morgans. Prostate Cancer International and The “New” Prostate Cancer InfoLink are in 100 percent agreement with you about this.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk, Treatment | Tagged: awareness, cancer, Morgans, prostate |
THE "NEW" PROSTATE CANCER INFOLINK 
Nice article. Covers many paths to prostate cancer care — castration, prostatectomy, radiation. I know Dr. Morgans focuses on advanced cancers. But 70,000 US men a year are diagnosed with early-stage prostate cancer. Half opt for radical surgery, radiation. Half opt for active surveillance. I’d be interested in Dr. Morgans view on AS.
Howard:
I am pretty sure that Dr. Morgans is a strong believer in AS … but she is also a strong believer in helping the patient do what the patient wants to do (as the article makes very clear).
She vaguely does. Just a reminder.
A thoughtful description of “shared decision making”, or making sure the patient really shares in the decisions. Great essay.
Per studies, being a female doctors may be a disadvantage to both the doctor and her male patients.
Medical testing and treatment is often stressful, degrading, demoralizing and embarrassing. According to the National Institutes of Health (NIH), per one study, 80% of men with ED never talk to their doctors or seek treatment because of these reasons. After his surgery one patient stated his prostate and his dignity was both removed and discarded.
Per some respected doctors:
— “Many men still avoid medical care because of embarrassment.”
— “Honest answers will often not be given if asked by a female.”
Per some studies, a significant percentage of men will feel uncomfortable or will completely avoid medical care if a female doctor, nurse, or staff member provided it. Some men would prefer illness, no treatment, and sometimes even death over embarrassment. Some men are more likely to seek or accept medical care for personal health issues if the staff (point of contact) is male (see this paper by Himmelstein and Sanchez). I personally know of several men that will not consult or see a female doctor.
Dear JJ:
Much of this would appear to tell us more about the failings of male doctors and their male patients that anything else. Please note the conclusion of the article by Himmelstein and Sanchez that you reference, which reads as follows:
“CONCLUSIONS: Taken together these studies suggest that masculinity may affect men’s health by encouraging choice of a male doctor with whom doctor-patient communication may be impaired.”
And that is on top of the fact it is often the men’s own inability to address their health problem honestly that is the fundamental issue.
Dear Howard:
Respectfully, I think it is rather more that “vaguely”. See this sentence in para. 3:
” … get the right treatments to the men who need them, avoiding surgery and radiation in men with low-risk cancer that will never threaten their lives.”
and then most of para 6.
I surrender, Mike. I am skeptical of Northwestern University. Eight years ago a famed surgeon there advised me that I was making a mistake going on AS. In fact, he said I was crazy. But maybe things are changing. I read the doctor’s name in the piece and that triggered some bad memories from eight years ago.
Dear Howard:
Let me be very clear. I do not speak for Dr. Morgans. She speaks for herself. And just because these are her opinions does not mean she speaks for everyone at Northwestern either. Your experience with the doctor in question 8 years ago represents the experience of many men over the years with that particular physician.
I would gently submit that you shouldn’t be judging what Dr. Morgans’ opinions on the basis of the opinion of a different (and much older) physician expressed 8 years ago.
Some of these comments read like the very antithesis or prostate cancer awareness. Remember when no one wanted to talk about breasts? And now there are millions of women (and men) who parade in support of breast cancer awareness. I remember when there were very few female gynecologists. Major sports teams even wear pink during breast cancer awareness month. I hope men can get over our pride, embarrassment, ego, shame, and sexism to drive prostate cancer awareness. I am a 5-year prostate cancer survivor (Gleason 8) and, frankly, it never occurred to me what was between my doctor’s legs as I sought treatment from the most qualified professionals I could find. Guys, we have a long way to go, and there are too many lives to be saved for us to lag this far behind the ladies.
My radiation oncologist was female. We communicated well and personally I have found some females more detailed and compassionate than male doctors. Of course, it just depends on the character of the doctor male or female and why they are really in the profession. If you don’t agree with or like your doctor, it is best to get another one. It is your life.
Switching gears, I saw this post on Cancer Network and US TOO. In my opinion, it takes way too long to get ones like this through trials while men with advanced disease wait. And, unless you are in certain areas it can be difficult to hear about or get into clinical trials.
Kudos to Dr. Morgans. … In her very busy schedule, how does she find time to write such insightful articles?! Dr. M. is now one of our “go-to” genitourinary medical oncologists and receives rave reviews from each and every patient we refer to her. This piece evidences her deep understanding of the disease on an everyman level.
One other thought — I wonder if it would ever be feasible for all the “Mr. Harrisons” to join together in a class action suit against USPSTF regarding their 2012 D rating which many of us on this site vehemently opposed at the time??
Dear Robert:
With regard to the post you referred to, it is important to understand that this is very early stage research. We have no idea yet whether what this research team has found in pre-clinical research (i.e., in laboratory and perhaps in animal models) would even be true in humans, let alone whether it could be done safely. Of all the ideas that actually get tested at this stage only about 1 in 5,000 to 10,000 actually end up becoming an approved drug. Most of them fail a critical step along the way.
Much as I would like to see 5 to 10 times the money available to accelerate the “translational” steps necessary to turn a scientific possibility into a drug that can be tested in clinical trials, this is always going to be a relatively slow process (albeit much faster than it was 20 years ago), and fraught with difficulties.
A strong article but with a dreadfully weak start, and @Rick_Davis, I suggest you read para 2 more critically. If Mr Harrison presented with symptomatic, metastatic prostate cancer 2 years after his last test, then the last test is the problem, and the 13 or so before that, not the one he missed (he sadly did not need the second-anniversary one). I respect Dr Morgan’s view that the “D” recommendation was a mistake (and further discussion is out of scope here), but this is not the way to do it. But the sentence “Quality of life and maintaining a sense of self truly is the most important thing to many men, it this must be respected” needs framing in clinics the world over, typo or no.