Dana Jennings. (Lonnie Schlein/The New York Times)For the past five weeks, Dana Jennings, an editor at The New York Times, has shared his story of life as a prostate cancer patient. We’ve heard how the disease is often wrongly referred to as “the good cancer,” and learned about the emasculating side effects of treatment. He has shared stories about lessons learned, the intimate and often difficult changes in a man’s sex life and the surprising emotional toll of the disease.
In Tuesday’s Science Times, Dana writes about how the detached world of medicine often treats men with prostate cancer. Sometimes men are viewed as statistics, rather than individuals. Other doctors see patients as rare, scientific studies of disease. None of which has anything to do with the real man standing in front of them. Dana writes:
Prostate Cancer Journal
One Man’s Story
Dana Jennings blogs about his experience with prostate cancer.
Nearly 200,000 cases of prostate cancer are diagnosed each year, and nearly 30,000 men die. This is serious, life-changing stuff: There’s blood in your urine, a catheter snaked up your penis, scars stitch your gut, and you might be impotent and incontinent for a few months, a couple of years, or the rest of your life.
Prostate cancer — any cancer — is a crucible in which we patients are somehow, we hope, reborn. It’s a rite of passage as resonant as any other — a graduation, a baptism, a wedding — and should be treated that way. Some days, maybe because I’m still undergoing treatment, I don’t want to hear about another stat, another study, another harebrained cure. How about a smile, a kind word and a hug?
Prostate cancer is an abstraction in the same way that global warming was an abstraction, until the world saw the photograph of that forlorn polar bear trapped on an ice floe. It should be the goal of each one of my brothers-in-disease to become that bear.
The rest of the column, “Person, Patient, Statistic” is here. And to read past essays from Dana, read his Prostate Cancer Journal. Join Dana in the discussion below by posting a comment.
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From 1 to 25 of 87 Comments
Dana does much more than his fair share to render his cancer (and hopefully, everyone else’s) something much more tangible than an abstraction.
I defy any thinking/feeling person to read this piece, without feeling somehow connected (if not closely connected, for those with similar experiences) to Dana and his situation.
— WesleyI am not an MD and I have not had prostaate cancer. However, I have had an elevated PSA level and a substanatially enlarged prostate. Through my wife’s concern and prodding I started taking Saw Palmetto, which is an alternative medicine (used for hundreds of years by Indians in Florida for related reasons) that inhibits the conversion of testosterone in men into a form that induces cell growth and causes enlargement of the prostate, and probably cancer. I have also used Proscar, which is a patented product of drug development and possibly behaves in a similar way. There is extensive medical literature on the subject published in Europe, where alternative medicine seems to be more acceptable.
My prostate is now about 60% of the size it had when I started using the Saw Palmetto, most of the reducion in the first year, and despite slightly elevated PSA levels I appear to be cancer-free and free of related symptoms. It is relatively inexpensive. Any man over 50 years of age should look into it and consider using it.
I have not studied the use of Saw Palmetto in inhibiting breast cancer in women, but it is said to have similar characteristics.
— GGAt age 65, I was diagnosed with prostate cancer in June of this year. I had no symptoms other than my PSA had risen to 4.5 from 3.75 over the previous 8 months. My doctor recommended a biopsy. It came back positive with a gleason score of 7. Surgery or radiation was recommended as soon as possible. It was a no brainer for me. I wanted it out of my body so after much research and study, I chose the da Vinci procedure. Then I had to find a surgeon. My doctor didn’t do that procedure but recommended a qualified surgeon within his group and he seemed qualified enough having done over 80 of the procedures. I then found another surgeon who had done over 200 procedures. He was very confident of his ability. I like when someone tells me he’s the best man for the job. I had the procedure done September 11. It took about 6 hours because of some previous, unrelated scar tissue in the area. There was discomfort after the surgery but not much pain. I was provided a morphine drip that I used very little. I was released the next night, Sunday. My catheter was removed 5 days later on Thursday. Other than a still burning sensation when I pee, I’m the same as I was before the surgery - nary a drip! I’ll know about erections in about two more weeks when I’m closer to normal feeling. Turns out my gleason score now was an 8 and there probably is some minute cancer still there. I haven’t decided if that’s doctor error or just one of those things. I’ll address that in two months with my follow up appointment. The key to any treatment is the experience and finess of the doctor, especially with surgery. Minute cancer or not, I’m satisfied with the procedure and the doctor who perfomed it. Time will tell…… My only advice with any treatment is - be very selective in choosing your doctor to perform whatever you need, especially the da Vinci procedure. I’m convinced that some of the poor results of some patients is simply a result of not having the best doctor.
I must also comment on the general information I read when I was diagnosed. There are all kind of statistics, which I personally considered useless as they related to me. We’re all unique. We all may think that we are bulletproof for various reasons - age, health, family history, whatever. Realistically speaking, we all need maintenance - routine screenings, blood tests, etc. At age 65, I’m in better than average health at 5′9″ and 175 lbs. Still had I not chosen to be screened with a blood test for my PSA, I’d have an aggressive cancer growing in my body. Point is, I moved as quickly as I could toward the biopsy and surgery. By the way, the biopsy was easy. It took about 15 minutes with minimal discomfort. I also had a colonoscopy along the way. That was so easy, I couldn’t even tell the doctor did anything - NO after effects or discomfort. I also had a stress test for my heart. All Okay. My point is, everyone should be having checkups, including biopsies, starting now, if you’re over 50. I don’t know if my outcome would have been much different had I started PSA testing earlier and on a more regular basis. But, I know that a lot of the men I have talked to don’t have a clue about their current health status. Wake up guys! Get your testing and screenings done and be selective in choosing the best doctor for you. I wish the best of health to all of you.
Note: That was an Oct. 8 post that appeared in the NY Times. This is a follow up. Five weeks after my surgery, my PSA is <.1 which is absolutely great. My doctor anticipated that it would be higher and radiation would be necessary because my Gleason score was 8 after the surgery. So far so good. We’ll see what it is in another three months. As I mentioned I chose the da Vinci procedure and the best doctor qualified for my surgery. I was fortunate in that I only had to interview 3 doctor’s before I found a highly qualified surgeon - I wanted the best available. I looked it as doing interviews, not getting second and third opinions. I always knew that my destiny was in my hands and that I would live or die based on my choices, not the doctor’s.
My recovery has been relatively uneventful - no swelling or adverse side effects - very minor incontinence that I know will eventually go away - and slightly less sexual function compared to pre-surgery. I’m very pleased with the outcome. Finding the right doctor is the key. My next goal is to be 80.
In closing, my best advice is quick action no matter where you are in the process. If you aren’t sure, interview another doctor. Time is of the essence. I actually had my operation moved up about 8 weeks because I wanted to get it over with. I think that one decision has lengthened my life span. Remember, nobody knows how aggressive your cancer really is until it’s actually out of your body.
Good luck and let’s all choose to live longer, healthier lives……
George
— GeorgeDana, I don’t blame you for lashing out. I sure do blame the insurance companies for doing everything they can to avoid paying.
While everyone taking care of you has the obligation to be humane, you can’t however expect everyone at all times to be gushing sympathy and support.
You also appear to be playing the old NYT editors’ game of dissing the docs and anyone else “in power,” and telling us selectively of great experiences you’ve had with “underlings” such as the nurses’ aide in this piece. I don’t believe it is as black and white as you’re portraying it, but I guess it makes for good copy.
While your pieces do seem to strike a chord among some, I believe they also breed resentment among may dedicated health professionals who are doing their best to stay afloat. They don’t always have time to fawn on every patient, only to give you an adequate, but sometimes short and succint, explanation of what’s going on and to answer your answerable questions.
I hope you’re getting good support from your friends and family, as I don’t here you talking much about that.
— jackFROM DJ: I have high praise for many of my doctors. As I’ve written about in previous blog posts, I receive tremendous support from my wife and family.
I thought my urologist had lost his mind when he said “Cancer”, and then mentioned 47% of men choose “watchful waiting”, but I looked at his face and realized he thought it was a very bad idea. I’ll assume he was required to mention it.
I had instantly thought, “What, are you nuts? I should maybe wait and see how fast this maybe spreads and then maybe chase it with chemicals hoping to maybe knock it out, which happens in maybe 22% of cases, but that statistic may be flawed because they can’t tell if it’s a maybe new cancer or it may be old cancer rising up again like a weed? I got yer statistics right here.” I WANT THE CANCER OUT OF ME. NOW. YES, I CAN WAIT UNTIL TOMORROW, BUT I’LL BE CRANKY ALL NIGHT…just so you know.
As it turns out, my Gleason 7 eliminated that choice, and besides, both my urologist and I have the belief that action is required. He seemed somewhat (67%) less pressured than I. I wanted 100% action and I was hoping that we could get it within 30% of a week.
I am unable to reconcile the insurance statistics of 42% “overtreatment” with my 100% desire to be alive years from now. I’m confused at the very term, “overtreatment”, which must have come directly from the bowels of insurance-speak. At age 72, would they declare that the cancer is 68% metastatic and that chasing it is a fool’s errand, 43% of the time, so all those x-rays, implants, and injections, have become at that time “overtreatment”?
It sounds to me that they are saying it’s ok if I die from prostate cancer since it takes a quite a while (see, it’s ok, because in 70% of cases, death is leisurely), and there’s a 60% chance that I’ll die from something else before then (possibly saving the current insurer a lot of money by deferring current treatment?).
That means that there is a 40% chance that I’ll be alive, getting $1,500 injections of Zoladex into my abdomen and having my teeth fall out, while they get strange PSA readings. Just suppose, only suppose, mind you, that I come from a family where men die at an average age of 92? “Watchful Waiting” and then losing the race to catch cancer cells might knock me off at age 75 (or earlier), at which age 67% of American men are being bumped off by heart disease or CVA anyway. I think that they are telling me to be happy with the results of my statistical roulette.
I was fortunate that 100% of the staff in the OR and the office treated this as a serious illness and not a frivolous whim. At the oncology office, they shared my 100% concern about whether the implant and radiation would kill 100% of the cancer cells. Not 97.46%, but 100%.
I am 1000% grateful to them all and, since they completed treatment when I was only 75% finished my Kubler-Ross, I’m about 93% convinced that they got it all.
— EdgarGot my prostate cancer diagnosis at 59, finished radiation at UCLA about a year ago. I came away with a very different reaction than Dana’s. Those weeks of going to radiation gave the feeling that I was pretty darn lucky by comparison to most of the folks who were being treated there. The simple fact that you were sharing the clinic with many people who would not be alive in another few months showed me that the hand I had been dealt was not anything I couldn’t deal with and that I should just get on with life. Maybe that three months of enforced community was an advantage, it sure changed my perspective.
— Dave DaleyHi Dana…this from a Brit whose husband was treated in the US, where we live. We had a similar experience at Sloane Kettering and couldn’t wait to get back to our local hospital where the oncologist treated my husband as a real person. Yes, the aides are a godsend…real people who just share your human experience.
— Vera SmithI wish you well…never give up hope no matter what.
Dana:
Please publish your work in book form. You convey so elegantly and in such real terms, that you truly translate the abstract and make the experience of being a patient real.
Your work is valuable for people in the patient role, for families and loved ones who are traveling the journey along with the patient, for nurses, who are charged by ethics and statute for assuring patient advocacy and safety, but who by virtue of serving as cowed employees, fail more often than they succeed, and for physicians, who are charged with doing no harm, and all too often, in the frenzied quest to do things TO patients, forget that that first and foremost, patients are human beings with emotions, fears, biases, limits and dependencies - all of which must be addressed within the sanctified sphere of the therapeutic relationship.
Thank you so very much for writing in such an extraordinary way that all of us understand better and so have a social mandate to do better by you and all those who are vulnerable and are forced by necessity to place great trust in others for their wellbeing.
— Annie, MassachusettsAfter all the trouble Dana has gone through, he may still not be cured. I wonder if he had looked in to IGRT and brachytherapy which offers better quality of life during and after treatment. Treatment is all out patient and there is no incontinence. Impotency may happen in a few years after radiation but may be treatable. Treatment results are comparable to surgery
FROM TPP — As has been noted in previous posts, Dana explored all options with his doctors but his choices were limited by the specifics of his cancer and the fact that he had undergone a prior surgery for an unrelated condition. I am weighing in on this because I am troubled how often men put forth their treatment choice as the best option for every man. First, despite what doctors with vested financial interests may tell you, there is absolutely no evidence that one treatment is better than another — either in long-term outcome or quality of life — the Agency for Healthcare Research and Quality just reported this. IGRT and brachytherapy, like every other prostate cancer treatment, can be associated with significant problems for some men, although often the problems don’t show up for a few years down the line, giving many men the false sense of security that they have escaped the side effects of prostate cancer treatment. As you point out, impotency can show up a few years after radiation treatment. In addition, not every treatment is appropriate for advanced cases of the disease. Good luck to you and I wish you continued good health.
— Arun KumarDana, good luck as you go through the process. I enjoyed your depiction as just being a piece of meat or part of a larger statistical package. What I’ve found is that many of the nurses giving the care treat the patients better. I also found that asking for business cards or making a point to write down the names of every one of the persons I interacted with put humanity into the situation. That little exchange seemed to personalize the interaction for both of us. Then, just before the holidays at the end of the year, I sent each of them a bottle of wine with an update on the condition they helped me get through. Hopefully, it made them think back and remember me…and maybe that will help them treat the next person a little bit better.
— Joe Mc.Dana,
Your struggle, documented so thoughtfully here, is a quite stirring reflection of what’s going through the minds of most men who face this specific potentially deadly disease and it’s gender related ramifications. There’s no question that these men, and the doctors, nurses and other health care providers who treat them, can learn a great deal from your writings.
— JTBut, I concur with jack at #4, about playing the NY Times editor’s game of dissing any current or future doc who’s not commited their non-religiously affiliated life to working in the brush of Africa.
I give personally the credit due to you of trying to correct your editors’ and colleagues’ (TTP/Kulota) misperceptions of this potentially deadly disease.
Dana, thank you for the important message you have sent to health care workers and institutions everywhere. My heart opened up as I read about the extra, emotional suffering you experienced by being considered less than a person. Not in any way do I mean to minimize the importance of that suffering when I say the way you were treated sounds exactly the way we women have been treated by the health care industry for centuries. As I was reading, I kept thinking, “Welcome to the club.” May your recovery be swift and pain-less and may you have many, healthful years ahead to enjoy.
— Carole BakerAs the wife of a PC survior, I am proud of what my husband did. He researched, read everything he could, talked to the doctors about his options, asked for a second opinion, and has been Cancer free —non-detectable for 10 years.
His elevated PSA was picked up at the office, he went to a urologist who, besides the plant doctor talked to people from Sloan-Kettering, and ended up going to Sloan-Kettering for some time. We went to 2 support groups–USTWO, which was most helpful. My husband decided to get a second opinionn from another top-notch facitility—MD Anderson in Houston—not that he did not like the physicians at Sloan. We talked to all the disciplines for prostrate treatment, but the radiologist we talked to at Sloan made the most sense to me—He said, “You know, there is something about being in the ‘bucker”. On the way to a business trip in Mexico, my husband met with a doctor who eventually performed the surgery. He has never regreaded his decision, We had real people also. After surgery, the nurses let me see him—although they did worry—he did not breath for them normally–after I explained that that was normal for him—it was resolved–he has sleep apnea. We never go to a hospital or to a physician that DOES NOT CARE, There are just too many good hospitals around. Johns Hopkins, MD Anderson, Sloan are the top 3 according to US News and World Report for Urology problems, but there are others, too.
Even though you live in the Big Apple, it does not mean, that your experience was typical. Our local hospital has great doctors. However, only one of our US2 memebers has had the success my husband has had.
Remeber too. all gentlemen have some form of PC when they die, For some PC just grows and is a problem.
Good diet is also a plus. The nutritional program–low fat, moderate sodium, high in seafood and poultry, high in fiber,—-that Sloan’s nutritionist suggested—and MD Anderson oncured —js the lifestyle my husband and I still follow. Your blog is probably helpfull to you, and continue writing it., but go to an US2 meeting, also—they are most helpful!
FROM DEB, DANA’S WIFE: Margaret - Dana and I attended a local Us Too
— Margaret Swansupport group meeting, where we met several wonderful prostate cancer
patients and wives. However, it’s important to find the right meeting.
While we learned some interesting things that were shared by several
of the participants, nobody there had a situation - medical or
otherwise - remotely similar to Dana’s. So, for people who want help
from a support group, it is essential to find the right group.
The person behind the disease? Oh,allright.
Well, most of the time that person may be a person of color. Although I do like reading Dana;s point of view on his condition. It is very enlightening and refreshing. So, in that respect prostrate cancer knows no bounds, just human beings.
( eman)
— emanI thought this was an intimate revelation, I hope something in here gives you a feeling that others have similar experience in this difficult disease.
— DanielLove Daniel
I have always felt reduced to an abstraction and I don’t have cancer, at least not yet.
. Such is the true nature of our consumeristic culture which certainly penetrates the health care systems.
I think it would be helpful for all citizens of our society to assume that we will get cancer. It is simply a matter of time in this poisonous toxic stew we reside. This way there is no surprise. And ultimately death is never far away whatever the cause of our enevitable deaths.
— strider643I was diagnosed with PC in April of this year at age 63. I had a 12 core biopsy done - all cores were negative on the right side but 5 out of 6 were positive for PC on the left side. Gleason score of 6, probable T1a staging. I had laparoscophic surgery (non-robotic) done on June 13 at the University of Ky. Medical Center. The lab results were worse than the initial screening had indicated. My Gleason score went to a 7 (3+4=7) and my staging went to a T3a because the cancer had penetrated the capsule of the prostate. The good news was that margins were negative and showed no spread to seminal vesticles or lymph nodes. My recovery was pretty non-eventful. I had the catheter in for 10 days and there wasn’t a lot of pain to speak of. Now 6 months later my PSA is <0.1 and I’m feeling pretty good. The not so good news is that I still wear a pad - although I’m good to go 99% of the time it still sneaks up on me that 1% and I hate to take chances on peeing my pants. Although the surgeon was able to do nerve sparing surgery I have had no signs of life below the belt since the surgery. I have tried Viagra but all it seems to do is give me a headache. I still have hope though because according to the reading I’ve done men continue to recover function for up to 1-2 years after surgery. The T3a staging worries me as statistically my chances of the PC coming back are 25-30%. Those odds are way too high for me. On the plus side I recently discovered a tool at the Sloan Kettering site that indicates my chances of being cancer free at 10 years is 90% plus. The URL is http://www.mskcc.org/mskcc/applications/nomograms_v2/PostProstatectomy.aspx. You input your pre-treatment PSA, Gleason scores, and staging details and the tool gives you your odds of being cancer free at 2, 5, 7, and 10 years. Good luck to all who have joined this exclusive club that no one wants to belong to.
— Jim PorterThank you, Dana, for giving voice to the frustration of feeling like just another piece of meat.
I don’t expect gushy, constant attention. I do expect to be treated with respect and acknowledgment of my individual experience. I expect to be seen - really seen - as the individual I am. It shouldn’t take any more time.
Three different, unrelated cancer diagnoses since a very early age - I have been told at each one how lucky I am to have discovered the disease at a stage early enough to treat with some hope of success. The surgeons have all seen hundreds of other patients with far worse prognoses than mine - so to them I was lucky. For me - how lucky does a person have to be to never get cancer at all?
Each time, and most egregiously at that so-called #1 hospital in Baltimore, I was a statistic. Worse than that - awake I was an inconvenience. Unconscious, I was another body to carve up and study, but certainly not an individual with any history or any future beyond those few moments in the exalted presence of The Chosen.
My experience has been such that I will never again agree to surgery. The cancer can have me, so long as I never have to hear again how lucky I am.
— BethMy comment was #17. I got the URL to the Sloan Kettering site wrong. Here is the correct one. Sorry!
http://www.mskcc.org/mskcc/html/10088.cfm
— Jim PorterThis tale resonates with me. I’m a now 15 year survivor who underwent hormonal therapy and then focused radiation. During one of my early sessions with a well known highly touted urologist/oncologist in New York City, my physician sat behind his desk and and never looked at me during my appointment. He never asked how I was feeling emotionally as I was trying to deal with with what for me was a traumatic situation. In short, I had become an object. I was furious when I left his office and wrote him a letter telling him that while this was a serious crisis for me, I appeared to be just one more routine patient for him. We later spoke about that appointment and, hopefully, calling him on his behavior has helped others. The professional community needs feed back on the psycho-social aspects of helping men deal with this diagnosis. Your article tells it as it is!
FROM DJ: I’d like to use your comment as a place to post a general response to all readers. Every serious illness is, ultimately, a story. It’s a story that
— Peter J. Purdyincludes the patient, the patient’s family, the nurses, the doctors,
and countless others. Again, I am only trying to tell MY story in
these posts, as honestly as I can and with a little necessary humor. I
have no preconceived axes to grind. I have no programmed editorial
point of view. My only allegiance is to the truth, as I’ve learned it
and continue to learn it. Each day, literally, brings a new lesson
about my prostate cancer and its aftermath. And some of the lessons
come from the wisdom that shines through some of your comments. As
always, I will read all your comments — all your stories — and
respond to a handful. Thanks.
From commenter #4: “You also appear to be playing the old NYT editors’ game of dissing the docs and anyone else “in power,” and telling us selectively of great experiences you’ve had with “underlings” such as the nurses’ aide in this piece.”
Hardly. All it takes is to be admitted to a hospital, take off your clothes & put that identifying strip on your wrist, and have your relatives and friends go away & leave you. Put on the gown that they require, and go through several routine days, including going for tests and treatments, then notice how different kinds of health care providers in that hospital setting treat you, habitually. See what they say to you and do not say.
Nurse’s aides are there to provide comfort and care at levels that directly involve human dignity and human privacy They touch your body, helping you get clean, or to turn you over. They put salve on bedsores. They bring you water if you’re thirsty. They give massages, comb hair. Just how much does a doctor in a hospital touch your body, to help you?
Doctors touch to diagnose, in a hospital, much more often than they touch to relieve fear or to comfort the many indignities and body aches that come with being in the hospital. They are trained to think, to observe, and perform medical procedures. That’s what they spend most of their time int he hospital doing.
Nurse’s aides in contrast are hired to bathe, to change simple bandages, to be the messenger if a patient has a hurt or need, to give massages and non medical treatments. They respond to the signal first to find out what your problem is, if you’re not in a critical situation. You tell them what your needs and hurts are. They and nurses are there in the dark hours of the night, the midnight to 5 a.m. when we struggle with our fears. The good ones and even the ones that are just doing their job are a human godsend.
Thank you for your blog, Dana. In a time when profit margins of medical insurance companies are driving medical treatment toward quick, abstract, test driven care , it’s good to hear talk back about what medicine and medical treatment is about.
Your own health situation and how you are being treated is entirely enough, as a blog subject, but I do think you’re also naming a larger pattern in thinking that seems to me to crop up outside of medical care, as well.
Consumer that I was, I was really vexed for awhile that the person who cut my hair was having difficulty responding to my statements that the haircuts she was giving me didn’t fit my clothing style or my attitudes…the cuts weren’t “me,” they were archetypally Middle Age Helmet Head, what women my age were “supposed” to wear…because women my age don’t get their picture published much and the last real public resource of what middle aged women look are all those old clips of the Donna Read Show. I couldn’t get her to bag the archetype.
And then it dawned, finally, that to her, I was a head of hair to be cut. As far as she was focused, a body didn’t walk in the door bearing my head, and there wasn’t a body under that cape. She wasn’t seeing me from the neck down, or as a middle aged woman who wasn’t Harriet, Ozzie’s wife. I had Harriet’s wrinkles, so I needed Harriet hair. Or some shellacked number from the 70s.
It was of course unreasonable of me to get grumpy, to expect that, lacking desire & effort at personal connection and caring coming from me focused on her,, that she should care about me personally…what social obligations are there in a business relation that is packed into 40 minutes of sitting in a chair, every 4 weeks?
But that began a process of looking around to see that so very often, in business, in medical care, as we go about our days, heck even in our intimate expectations, it seems that nowadays people reduce our concern about others to concern with a body part. Or a function.
I think this may be one of the back issues behind many (not all) USdoctors being groomed and encouraged by their medical school training and the power differentials in practices to treat people as you so powerfully said, as meat, as some THING to be acted upon.
Thanks again Dana. I hope the best possible comes from your situation. Thanks for writing.
— ShellLike so many men, I have followed Dana’s story and am rooting for him to come. Again, like many man, I too have had prostate cancer.
I remember being in my forties. I had one friend that had prostate cancer. He was an oddity. A rarity. Probably the only person on the planet who had it, as far as I could discern.
Now, at 62, I have dozens upon dozens of friends and acqaintances who have had - or continue to have - prostate cancer. It seems a day doesn’t go by without hearing about someone else who has the disease.
I always assumed, as a reasonably healthy, fit, sexually active male that prostate cancer was somebody else’s disease. DON’T MAKE THAT MISTAKE. If you are a man, in your fifties or older (and in a few cases even younger than 50), you are walking around with a target on your back.
Here are some suggestions to fellow readers, which I hope you will find useful:
1. Don’t rely on saw palmetto and other elixers. They may be of some help with an enlarged prostate, but most of these nostrums do nothing to head off prostate cancer. I am not remotely saying not to take those things — just don’t let the taking of them blind you, if and when your PSA starts to slowly go up.
2. Don’t rely on special diets. When I first saw my PSA rising, I learned everything I could learn about prostate cancer and wanted to eat healthier. There were exhaustive studies of what to eat and not to eat. In the three years or so since I ’studied the studies’, virtually everything on the lists turned out to either do no good or be downright bad for you.
So use your common sense: fruits & veggies good. Red meat bad. Keep your weight down, don’t smoke or over drink. These things are importantant for you and your life, with or without prostate cancer. And, should you find out that you have any type of cancer, I strongly urge you to get in the best shape you can, for you will be in for a fight. But remember this: there are no magic elixirs (pomogranate is the only thing still in vogue from the original list given me) and don’t for a second assume that eating right will grant you a free pass. It won’t.
3. Low PSA’s aren’t the key here. It’s the pattern. I have a friend whose PSA went from 2 to 2.35 to 2.75 in 2 years. Guess what he had. If it bounces up and down, you’re probably okay for the moment — but many of my friends had bouncing PSA’s before the slow rise took place, and it is the slow, inexorable, ineluctable rise that is usually (but again, as with all cancers ‘usually’ means only that — it is not the same as universally) the tip off.
4. Make sure you have a great urologist. What does that mean? It means someone who is not just trained and bright, but empathetic and very, very concervative. Someone who, if they see your PSA rising, takes note and keeps an eye on it. Someone who doesn’t drop the ball, and someone who is aggressive at taking biopsies, if they feel they are needed. My PSA was 2 for many years. After having been away from it for some time. I started seeing Dr. Winston Barzell, in Sarasota Florida. He watched my PSA go from 3.5 to 4.2 to 4.9, or something to that effect. Knowing that my base make PSA was 2.0, he biopsied me each and every time, starting at the original 3.5 number. My other physician friend’s pooh-poohed that strategy, saying that it wasn’t necessary and it was far too many biopsies….until the test came back positive. And Barzell’s dogged determination to do the right thing by his patient and check every time the number went up quite probably saved my life.
5. Having said that my doctor was terrific, here are two things to remember. Always get second opinions. If your doc is good, he will do it himself, by sending suspicious lab results out to places like Johns Hopkins to double and triple check if necessary. And always remember, the doctor is part of your team, you’re not part of his or her team. You make the calls. You are literally betting your life, so don’t be passive about it. Learn everything possible about your disease, and - if you think your doctor isn’t up to speed or on your page or wave length - replace him. NOW. Don’t worry that he or she has an MD after his or her name. There are hacks in every field, and even the best of the best make occasional mistakes. The patient-doctor fit is crucial. If you don’t trust, like and believe in your doctor, don’t say ‘I’m fine now, so I can change later’. You want someone good in place before you need the big guns.
No one wants to be General Custer.
6. Don’t believe statistics. Cancer is not ‘off the rack’. Each case is sui generis — it’s custom tailored, a mix of the disease, it’s specific causes (whatever the hell they are), the patient, and the medical care (from doctor to type of care to medication, et al). I’ve had friends that have gotten prostate and other types of cancer that have wallowed in statistics. If you don’t want to be a statistic, don’t buy into them.
7. One of the problems with prostate cancer is that there are several seemingly effective treatment regimins. Find the one that works best for you, which may or many not be the one your doctor favors. This is your call, and it is absolutely crucial that you be educated — about where your disease is (if and when you get a ‘gleason’ score after a positive biopsy, be able to intrepret it and understand it’s implications); about what treatment regimins would work best; about what doctors and institutions have the best track record for those particular technologies.
8. Don’t worry about things like incontinence and impotence. I’ve had several friends and acquaintances who have put off getting treatment for their cancerous prostates because they were worried about potential side effects. From personal experience and anecdotal experience from others who have experienced post-op and post-radiation problems, these ancillary problems tend to resolve (or at very least, ameliorate) themselves over time, and you learn to work around any diminshed abilities, if need be. It beats the alternative.
Remember that a stiff penis does no good if it’s attached to a dead man.
9. Remember the old dictum in real estate: location, location, location. In fighting any kind of cancer, or any kind of cataclysm, for that matter– Attitude Is Everything. No matter how well off you are medically, a lousy attitude will make your life unteneble. No matter how badly off you are, the better your attitude, the better you will do. Nothing, absolutely nothing, will make a bigger difference to your qualify of life than your attitude. In your fight with cancer, it is the best single ally you can have.
10. Last but not least, please oh please, don’t wait. My friends and I are so damned tired of hearing about this being the ‘good cancer’, and that you can ‘watchfully wait’ or ‘you’ve got plenty of time’. I have several friends who did just that, and their cancer (which possibly could have been contained had they acted quickly) had the time to jump the fence. And now, like Dana, they are in a purgatory of going from treatment to treatment, regimin to regimin, hoping to find a way to keep their disease under control, and stay alive. The two biggest barriers to effective treatment are the stigmas we ourselves attach to the disease (denial being chief among them) — and the publicity given to the idea that prostate cancer is no big deal,;that there is no rush to have to address it. Ask Dana! He’ll tell you — prostate cancer IS a big deal. Assume that, if you’re 50+, you’re a candidate, and make it your business to know everything you can about this enemy and what you have to do to win the battle..
To Dana, to you, and to all of us….best of luck!
Gene DePoris
— Gene DePorisSarasota, Florida
Maybe I’ve just been a cancer patient in the university medical setting so long – since I was 27 - that I’ve bought into my doctors’ curt detachment; I now defend my position as one of their statistics. Statistics are what win scientists their grants, get drugs approved by the FDA, and motivate lawmakers to advocate on my behalf. Me becoming a number is what will keep me alive. I’ll leave the human side of my cancer to the select group of friends and family who actually get me (I’ve never had nurses as cool as yours), and let the doctors do their cold, ruthless business of keeping me here.
http://everythingchangesbook.blogspot.com/
— Kairol RosenthalCongratulations, Dana, on being LUCKY, Getting
— chuck kuhlinskithe best treatment in tthe world; affording health
insurance; and then getting paid to write about
all this in a whiny manner
There is a reason doctors distance themselves from their patients: doctors are people too. How would you feel if every day you had to try to help dying people who were looking to you for a cure that you didn’t know if you could give?
A doctor must also be a scientist, and try not to let personal feelings interfere with often nasty treatment. Could you get the best treatment you need if your doctor was preoccupied with how sick you would feel? Quality of life is not an issue if you’re dead, and it is your doctor’s job to keep you alive.
This is not to suggest that doctors don’t have a responsibility to be courteous, caring, and respectful to their patients. I think previous Well columns have already parsed all the ways doctors are deficient.
Don’t confuse an oncologist with a support group. Cancer is ugly, and a patient needs a good doctor and a good support system, but blurring the lines between the two can compromise care (the same is true for support groups that dispense medical advise, but that’s a different story).
— Nicole