More than two million American men are currently living with prostate cancer, yet the national conversation about the disease consistently falls short. My colleague Dana Jennings, a writer and editor for The Times, was diagnosed with prostate cancer seven months ago. He has generously offered to share some of his experiences with the disease as a regular contributor to the Well blog.
By Dana Jennings
There is no such thing as a “good cancer.” When my prostate cancer was diagnosed last April, I can’t tell you how many well-meaning friends and acquaintances said: “At least you have a good cancer.” What they were trying to say is that prostate cancer is often very treatable when detected in its early stages. Even so, nearly 30,000 American men died last year of “the good cancer.”
Dana Jennings. (Lonnie Schlein/The New York Times)My cancer did appear to fall within the range of the ordinary. Treatment is still treatment, though, and a prostatectomy, no matter the method, is major surgery, with the twin shadows of impotence and incontinence always present.
But after my radical open prostatectomy on July 7, the pathology report revealed that my cancer wasn’t so ordinary, after all, and showed what one doctor called a “somewhat extraordinary scenario.” My apparently run-of-the-mill prostate cancer was actually an aggressive star among such cancers.
Rather than being a typically slow and pokey prostate cancer, mine had marched beyond the prostate and invaded a seminal vesicle and other tissue. It was a pure and aggressive prostate cancer. I soared from pre-surgery Gleason scores of 6 or 7 (two different hospitals, two different scores) to a Gleason of 9 — the higher the number on this scale of 10 the worse the news — and from having a probable Stage 1 cancer to a Stage 3: Stage T3B to be exact.
Some men with Gleason 9’s do well, my doctors say, others don’t. And even if I go into remission after my current treatment of hormonal therapy coupled with radiation, there’s still a 50 percent chance that the cancer will return.
I’m 51 and married, have two sons (19 and 22), and I’m on the young side to have prostate cancer. If my cancer had been “ordinary,” if the prostate had been simply snipped out with only the usual complications (which are significant), I might not have felt compelled to write about it.
But I’ve been living with my cancer for more than seven months now, and have taken to regularly writing down my experiences and feelings about the disease in a journal to help me cope with — and try to understand — the very personal challenges it presents. Despite the prevalence of prostate cancer (nearly 200,000 new cases are diagnosed each year), I have found my diagnosis to be surprisingly isolating, partly because, in my view, the national conversation about prostate cancer is lacking. It dwells on statistics and treatment, and ignores deeper issues.
Doctors tend to default to mere competent professionalism, forgetting to talk directly to the scared flesh-and-blood man bearing the disease. Friends shift uncomfortably, turn squeamish, when the conversation turns to the most personal aspects of treatment, like sex, impotence and incontinence. And even men who have prostate cancer themselves, taking their cues from their doctors, I suspect, find it difficult to talk about. Instead, they sound as if they’re spokesmen for their cancer, not men stricken with a serious disease.
In these posts I hope to provide an antidote to the averted eyes and the retreat into medical jargon that sometimes characterize talk about prostate cancer. Prostate cancer isn’t just about surgery, treatment and survival — it’s also about relationships, sex, self-esteem, embarrassment, hope and fear. By writing about my own experiences, I hope I can start a personal, honest and down-to-earth conversation about the disease — in all its bewildering sadness and, yes, in all its strange humor — with fellow prostate cancer patients, their caregivers and anyone else who is interested.
And I’ll say this one more time: There is no such thing as a “good cancer.”
Please join the discussion by posting your comment below.
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From 1 to 25 of 599 Comments
Isn’t this just too much fun. A year ago August I was diagnosed and in March following 7 months of hormone treatment (really anti-hormone treatment) I had a robotic prostatectomy. But I also had a T3b tumor with a Gleason 8 score. Now my psa has risen (recurrence) rapidly and within six months of surgery. So more treatment is in store for me.
But to comment on your points about discussion and relationship. I find no one really wants to talk to me about my illness, prognosis and attitude, (being male I won’t say feelings). So I try to keep all this to myself and in the process try to convince myself that that is best for everyone.
Is it?
FROM DJ:
Ralph, one of my favorite quotes is by the poet Muriel Rukeyser: “The universe is made up of stories, not of atoms.” We have to tell the stories in which we become characters, willing or unwilling as we may be. And if you feel you can’t talk to someone, talk to yourself in a journal. I only find out what I’m truly thinking once I open my notebook and start scribbling. Sometimes, it’s not the cancers that kill, but the silences.
All the Best, Dana
— RalphGood for you, Dana! You are tyring to do for men something that was done years ago for women. Care for breast cancer is years ahead of reatment for other cancers due, in a large part, to the work of consumer organisations. It is proof that the ordinary people can make a big difference.
When we can talk openly about what we are facing, or strange as it may sound, learn to laugh about it, we gather courage to not only go on, but to grow and thrive. Support from someone who has “been there” is invaluable.
Best wishes, hang in there.
— Susanne McCullyI am 67 YO.I had a radical prostatectomy 2 1/2 years ago. I had a little incontinence for a few weeks & none since. I have impotence which I have solved with a vacuum pump. It took some getting used to but I can have a good erection anytime. My PSA is .8 & my Dr. wanted me to go to an oncologist for either radiation or hormone therapy. For now I am resisting since I have heard horrible srories about both. For now I am sassy & happy.
— LeeDana - Hang in there buddy. As a fellow “good cancer” survivor diagnosed in Winter 2000, I found the mental side of it to be far more difficult to cope with than the physical. Seemed like people said “oh, you have the good cancer” to actually convince themselves that it would be okay…sort of a self-soothing thing they did on themselves. I have no other way to make you feel better about this for it must come from you. But I hope you find a way to self-soothe as you work through this, and make your life the highest priority.
— David G.Thank you, thank you, thank you. My husband was diagnosed at 50, went through treatment…the cancer returned several years later and he is now in hormone therapy again.
I get infuriated by the ‘good cancer’ comments. I find myself begrudging all the pink bows and promotion of breast cancer benefits. All cancer is bad…..my sister has bile duct cancer and is dying…she got a ‘bad’ cancer but death is death and thousands die of prostate cancer every year. Some day, most likely, my husband will be one of them.
I wish you well and look forward to your posts on this.
— CynthiaDana Jennings deserves the kind of compliments for which no adequate description exists for having had the guts to come out swinging, no matter the caliber, also, of his level-headed congeniality. The guy has been hit too hard, too early, not to deserve the highest praise for courage in taking on not “just” his premature and for that reason even more unwelcome tormentor, but also and of maximum importance, the medical establishment and its practitioners as well. May this salute to Dan Jennings help hearten him and wake up those in the healing game to a more compassionate concern for him and every other man being dealt the same truly wretched cards.
— Jim ConniffMy father just had prostate surgery to remove his ‘ordinary’ run of the mill cancerous organ. He is doing fine now but you are right. No one talks about it.
— Darius PersainBreast cancer has organizations, advocates, marches, runs etc devoted to the cause as they should be to bring about changes in treatment and survival increases.
But for men anything related to the sex organs is always viewed differently. Prostate and testicular cancers are diseases that people snicker at….the thought being a man could live with one testicle or no prostate. After all there is always Viagra.
Breast cancer is treated differently as the breasts are seen more as life giving for the child, even in medical circles.
To be more effective we have to change the concept of disease association and more on disease treatment irrespective of which sex it involves.
Dana, I think it is great that you have the strength to share your story. You are right - too many people dismiss prostate cancer. I myself have worked in health care, and close to prostate cancer. The issues surrounding prostate cancer are many, beyond the scope of the cancer alone.
It sounds like you have wonderful support with your family, and I sincerely wish you well as you fight this disease. I also hope you are able to avoid the side effects of treatment that you mentioned above (incontinence, impotence, and so on). Again, it is a matter too frequently ignored. Thank you for sharing.
— MonaDana, thanks so much for this essay. I had breast cancer last year and I can’t tell you how many people said things like, “You’re lucky since they have come so far in treating breast cancer.” Luck wasn’t on my list of feelings about cancer. Good luck. Be well. Don’t forget to treat your spirit as well as treating your cancer.
— KarenThank you Dana.
— JBI don not have any symptoms, but it could happen anytime. If it is treatable, it seems we should be that much closer to a cure. That is, unless the only solutionis extraction.
You’re correct . My radical prostatectomy was a success, but in the three years since I’ve found the emotional and physical repercussions tough and isolating. I look forward to your posts.
— Mark BrandfassI was diagnosed with the “good cancer” eight years ago when I was twenty-seven years old: thyroid cancer. While I’m glad that I have the cancer type that boasts the highest survival rates, mine has not been the easy road promised. Eight years and counting, I still have the good cancer, with two tumors perched on my jugular vein. I make trips to my good doctors, wonder if it will invade my good lungs, and survey how it has shaped my good years of life as a young adult woman.
Whether flung from the mouths of doctors, other patients, or our well-meaning friends and family, adjectives are used to try to make someone feel better. Cancer is cancer. I have cancer. Feeling better about my disease is a long, slow process that comes from experience, not just kind words.
http://everythingchangesbook.blogspot.com/
— Kairol RosenthalDana, you are so right. I had a robotic prostate-ectomy about two weeks ago and have been confronting the same lack of conversation about it. I too have resorted to writing and am using an essay to explore my very complicated feelings about the discovery, the operation and to help me get through the recovery.
I am still awaiting the pathologist’s report so there is a looming sense of the unknown.
The operation itself was debilitating and I’m still coping with some of the logical physical consequences of the procedure. I don’t know how the continence question will turn out, not to mention the prospect of erectile function which won’t be answered for perhaps many months yet to come.
Arguably, the most frustrating aspect of the whole event is the inability to point the finger somewhere. I am sure this is common among many with serious illness, but it doesn’t calm anxiety or ease the discomfort.
Where it goes from here, i don’t know. The medical staff were absolutely clear and honest with me about the variety of consequences to be prepared for. What I was not prepared for was the real sense of change in my physical and psychological selves. I guess i’ll have to keep writing
FROM DJ: T., at this moment, I’m a bundle of side effects, some from my medication(s), some still from the surgery. But, as we look ahead, we need to remember that we are not our side effects, we are not our disease. We need to try to be ourselves, that consciousness that defines, the still, small voice that guides our hand as we write in our journals.
All the Best, Dana
— T. AnthonyDear Dana,
My father has been living with prostate cancer for some time. After radiation treatment failed, he had surgery. Surgery left him impotent and incontinent. He was a changed man in the years following. He was ashamed and had no self-esteem (which was completely the opposite of the man I have known all of my life). He and his second wife divorced and his gleason score bounced back. He wont tell me now how far it it has gone up now. It has shaken him to the core. I suppose his sense of self was wrapped up in his ability to please the women around him and of being strong.
— Christina ReinschWhat he doesnt know is that we women dont care- honesty if a man is impotent. Nor does it gross us out if our men become incontinent. But we need them to be strong. My father has moved beyond his depression, and he is the man now that he always was. He is strong and even when he is scared, he knows that there is nothing to be embarrassed about.
It is the shame and embarrassment that accompany this disease, which makes it so difficult. I hope that you have learned that your family loves you more than anything, no matter what, and that you are always their number one.
Don’t forget that dad!!!!!!!!!
good luck. i guess when someone ELSE has cancer it becomes more treatable. think the possibilities of incontinence and trouble with erections are not minor tho i guess people think the compared to dying, but still…..
— bruce pickenDana,
— TimI underwent a radical prostatectomy at age 42, and shortly thereafter was diagnosed with bone mets. The good news: this happened in 1999. I’ve worked full-time as a physician since then, and seen all five of my kids graduate high school and enter college. My prognosis was extremely grim early on, and I don’t pretend this illness won’t go on a rampage again, but I’m extremely grateful for all the years I’ve had so far. Best of luck.
Tim
Hi Dana,
I had a prostatectomy via the DaVinci method about two years ago. Fortunately they seem to have gotten the cancer, but I still suffer from impotence with a small touch of leakage. I hope everything works out for you. You’re right about the self-esteem issues, but you overcome them with the realization that your life is precious and worth the trade off. Having people who care helps a lot. Stay positive and get the best doctors.
— AlThanks for opening up this discussion. I am 51 and was diagnosed about a year and a half ago. After much research I opted for External Beam Radiation Therapy. My PSA is now almost zero, and I have no side effects at all, (never had incontinence or impotence) . The lack of side effects was a big reason for choosing radiation over surgery. I know all the logic used against radiation as a first treatment including the mantra that you can not have surgery after radiation, etc. However, the ten year stats for radiation and surgery are the same and quality of life was a big issue for me. It is worth noting that men are usually diagnosed by urologists who are surgeons by training, (as was i). It takes work to get other opinions and to make a choice that your urologist might not support. We are lucky in Madison, Wisconsin, to have state of the art radiation facilities. I urge all me to check out non-surgical alternatives.
— Douglas RosenbegBest of health to all,
Douglas Rosenberg
Madison, WI
I too have a Gleason 9 tumor, with which I having been living for six years. I have been through radical prostatectomy, radiation, and hormone therapy, all of which failed. I am now undergoing Chemo and have reduced the tumor mass by 50%. My PSA has gone down from 12 to 1.8 and is still dropping. I have been told that my cancer is incurable and that all treatment is merely palliative and designed to slow tumor growth and prolong my life, hopefully until they can invent something newer and better. I’ve been given eighteen months to five years, with the greatest likelihood being more Chemo in the future. I have been impotent since the operation and occasionally incontinent as well. But all in all I have maintained a positive attitude, which helps. The Chemo side effects are a drag - nausea and fatigue more or less constantly. Still, I’m alive and have a chance. Thanks for your blog.
FROM DJ: I like what you say about the positive attitude, and I’m also sad to hear what your prognosis is. But about the attitude: We’re dealt this dark and difficult hand. But, I say, keep on bluffing until we’re told we can’t play anymore.
All the Best, Dana
— Michael L. LewisProstate cancer diagnosed at the age of 51 is NOT run of the mill prostate cancer. Nothing “good” about it. Best of luck going through hormones + radiation, and may your PSA go to 0 and stay there.
— DroneI have had the prostatectomy 5 plus years ago and my last PSA was not measureable, so I am grateful for that. My father who recently passed away had been diagnosed with prostate cancer when he was 77 and was considered in operable, but most likely they thought he was going to die anyhow. Luckily he was in such great health otherwise that they put him in the hormone research program that eventually extended his life to 92, which is the max number of years of anyone on the program. Men who have or had prostate cancer belong to a brotherhood that needs to be supported for those that are still to join. I have taken the path of not shying away from the disease, but have become vocal so that others who have fears will address them and I am available to talk to anyone about my experience. The good news is that as time goes on doctors will develop better treatments and alternative care to minimize the negative experience of having he disease. It is better to address it rather than avoid it, because the day after your death you do not get a do over. If you don’t address it you may not be aware that they found the cure.
— RichardI’m a fellow 51 year old prostate cancer “survivor”. I had my robotic prostatectomy back in March ‘06. I’ve had better luck than you - my cancer came out with “clean margins”. Mostly, my “gear” is working ok - but it’s not the same. I’m different now down there. Most of the time I don’t think that’s a big deal. Other times I do. I also wonder if I wasn’t “hacked” into unnecessarily - that this cancer would not have killed me before another natural cause did. Who knows? Anyway, I wish you best of luck.
— Bernie McNelisda vinci robotic surgery dec. 11, 2007, i’m 59, gleason scores of 9, t-3-a from pathology report after surgery. they started me on harmone therapy last july, eight weeks of radiation (ebrt), ended this past september. anything i could possibly help you with, email me. you are so right, good cancer? harmone therapy for prostate cancer, try and explain this to the ladies and see how much sympathy you get…. your best survival may be denial, the “c” word will eat you up. all the luck to you and your family, ed
— ed turnerMy dad passed away two years ago at age 52, after battling prostate cancer for 13 years.
There is certainly no such thing as good cancer.
I think it is really excellent that you are spreading information about prostate cancer as well as bringing out taboo topics. When you live with someone with cancer for such a long time, those issues end up living in the house too and yet they are not really addressed in the outside world.
Thanks for putting it out there. My thoughts are with you, your treatment, and your family.
— Shawny SenaIn my case the radical prostatectomy was 1 1/2 years ago and my incontinence was also short lived. My surgeon suggested I look at radiation as a followup due to the pathology report from the surgery. Three months later I began the radiation and I have only good things to say about both the surgery and the followup radiation. There is no indication of any residual cancer in my body, though my PSA will be checked regularly for the rest of my life. And those checkups will always be nervous times I imagine. I am 66 years old.
— Bill