Late last week we commented briefly on a paper (by Darwish-Yassine et al.) entitled “Evaluating long-term patient centered outcomes following prostate cancer treatment: findings from the Michigan Prostate Cancer Survivor study.” We have now had the chance to read through the full text of this paper. As we suspected, it contains a great deal of data on the patients in the study and their perceptions of long-term side effects as a consequence of their varied forms of treatment.
Having said that, this is a difficult paper to interpret, because it is hard to know to what degree the side effects being reported up to 19 years after initial treatment for prostate cancer are a real consequence of treatment and to what extent they may also be associated with the aging process in a group of men whose median age at the time of completion of the survey instrument was 76 years.
What comes across very clearly in the paper, however, is the failure of the US health care system to actually implement any form of long-term recuperative care planning for the men in this study after they had initially received definitive first-line treatment for their cancer. And we feel we should say immediately, that that failure seems to include a failure on the part of the patients themselves to seek and insist upon that long-term recuperative care.
Figure 1 in the paper offers a summary of the patients’ perceptions of the extent to which four major categories of physical symptoms were considered to be a problem at a median of 9 years post-treatment with either radical surgery or external beam radiation therapy:
- With regard to urinary symptoms, among 1,764 patients providing data
- 19.7 percent reported symptoms as a moderate or big problem.
- 49.3 percent reported symptoms as a very small or small problem.
- With regard to sexual symptoms, among 1,187 patients providing data
- 51.6 percent reported symptoms as a moderate or big problem.
- 16.4 percent reported symptoms as a very small or small problem.
- With regard to bowel problems, among 1,156 patients providing data
- 14.0 percent reported symptoms as a moderate or big problem.
- 40.4 percent reported symptoms as a very small or small problem.
- With regard to vitality problems, among 1,135 patients providing data
- 24.1 percent reported symptoms as a moderate or big problem.
- 42.9 percent reported symptoms as a very small or small problem.
These data give a clear idea of the size of the problem.
Now we need to be clear that some of the complications of first-line treatment for prostate cancer are not curable, and there is a very clear obligation on clinicians to be forthright about the risks associated with every form of first-line treatment for localized prostate cancer so that men understand their risks going in … or can chose to avoid those risks (at least for a while) by deferring therapy and simply monitoring their evolving condition (if some form of monitoring is appropriate). However, we also believe that there is an obligation on clinicians to provide their prostate cancer with a well-developed survivorship plan post-treatment — a plan that addresses all of the major risks; offers strategies to assure recovery or good urogenital and rectal function to whatever extent is possible; and assures patients that they are entitled to assistance in recovering a good quality of life after their treatment (which might need to address things like depression and counseling in additional to assistance with recovery of sexual and erectile function).
To a large extent we are still behaving as though treatment for localized prostate cancer is a “once and done” issue … but we know that’s not true. There are significant physiological and psychological effects associated with treatment. These affect the patient, his “significant other”, and often his extended family too. Men need to understand this better when they are making decisions about treatment; clinicians need to accept a higher level of responsibility for post-treatment care of their patients; and the patient and his immediate family needs to be able to recognize the need for and seek that follow-up care when it is appropriate.
The “New” Prostate Cancer InfoLink thanks Manijeh Berenji of the University of Michigan for providing us with a copy of the full text of this paper for our review. We would encourage all support group leaders and other prostate cancer educators to obtain a copy of this paper as a resource for their own files.
Filed under: Living with Prostate Cancer, Management | Tagged: complications, long-term, quality of life, side effects, survivorship |
THE "NEW" PROSTATE CANCER INFOLINK 
I wonder about the men reporting sexual symptoms. Did it ask if they were attempting to have sex? I guess I find it hard to believe that 30% were having no problems at all, perhaps they are celibate, which would obviously skew the interpretation of that data.
Dear Claire:
The median age of these men was 76 years. Sex is known to become less relevant to some people in their 80s, in which case there might well be no problems.
Paragraph 2 — are the effects as a result of doing something versus men that did not have Life altering treatment and just growing old ” Normally”.
For me, an early 60ish man, single, the effects of being radiated, almost one year post-treatment, the aging process has begun “early”. I work outside and due to people can not utilize Nature, but must know where the restrooms are nearby or pad myself up. Cold weather effects me now, more than last winter (pre-treatment) and this is just the beginning of the Winter months.
Is this due to treatment or “early” aging? I go with the first. I expected that when I hit the magical cut-off age of 75, where they do don’t treat anymore (in my neck of the woods), I expected to have the urge/need more often.
In terms of the throne room, a family pack used to last 5 months, now, post-treatment, I am using 6 rolls per week — no change in activity or diet — you do the math. Again, I “aged” earlier.
What used to take all night, now is definitely a catch it early or it is over and even then, a maybe. In my case medications and pumps do not work well. Please do not break it off while trying. So again, I go with the effect versus natural aging
I need to change my mindset and hope that my partner can also.
In my world, post-care is not discussed and if is, it’s like pulling teeth from a chicken. I got outside leads and followed up on them to glean some help. True, I will agree, that the doctors should discuss the “new life” but there is the knock on the door and “Next Patient, Doctor”.
I will agree that the patient should seek and inquire about post-care, but at the beginning, the doctors were in a hurry to get the ball rolling and squash any talk about what is going to happen — in detail. Just throw the words out and keep going, no real talk about what does happen and when and sooner than you thought. So I am learning the details after receiving a very broad outline.
As one speaker told the audience when he quizzed a doctor about his high percentage of patient sexual satisfaction: “If the patient can stuff it in, I consider that a success.”
I will go along with the last paragraph, and again, in my world, delay is not around, but action is the word. A better informed patient makes a better mental patient and this spills over into rest in his life.
Last word, as we age, sex, they tell me, becomes less the act, rather than just being close and holding, both realize that the days are gone. But now with men starting to be tested at 40 and the cut off lowered to 2, there are going to be a large number of men in their 40s, 50s, and 60s that will “mentally” regret what has happened. True, there will be some real cases, but I am talking about the border-line and just above the line, that could have been monitored via blood tests for a while longer versus the mind set of “You are 40 , have a value of 2.01 and must be treated! … and then not really told what life is going to be like for the next 40 or 20 years and the medical personnel walk away, since nothing is wrong with them or they are not 40 yet and just have the book learning to go on and not the personal experience.
I have been quiet as life has thrown me a curve medically, as I say, I have been busy harvesting seeds and getting ready for the long cold snowy winter and adjusting to my “new early” life.
There is a stack of postings to review, but the information and hope can be only for the future generation that the wait and see monitoring becomes a reality, for I do not want my son to “age” before his time. It is too late for me and I see myself as a 75-year-old in a young, work-active, early 60-ish body.
Following Any Mouse’s thought processes can be a challenge at times, but we would merely note that that there is both a power to positive thinking and a power to negative thinking.
The path the patient takes may be a self-fulfilling prophecy.
Self – fulfilling prophecy comment. I report what has changed in my Life over the past year. Changes that I viewed would happen when I get up into the 70’s and 80’s instead of early 60’s.
my wish is that when my son turns 40 and has a PSA of 2.01, he attitude is more open, so that even though the ticket is bought, it does not need to be punched and him thrown on to the train as I was. Hopefully the Wait and monitor will be more valued as an option.
And this applies to all of the 40 year olds now.
Once on the train, the results are Life changing. Living not as a ” full man’ for 20 – 30 years is upsetting. Without the physicians really sitting down and explain and the patient understanding, that working 4 hours without a bathroom break outside is a thing of the past. The rubber band = muscles – have been damaged and not as strong. If the patient understands that and then mentally accepts that, the change is easier and the ” loss” is easier to deal with. In my case the words were said and no time line or being made fully aware has caused me the mental anguish and resentment on how I was treated. My, let’s wait a minute and look at these values and what is happening and we can wait since it is slow growing comments were dismissed, for the physicians were full steam ahead for treatment now !.
Treatment consequences versus normal aging comment in Par 2 — of course the patient will “age”, show symptoms of a more elderly man, since treatment effects a lot three major functions earlier.
Par 3 I will agree with – patients are not fully informed and really need to mentally realize what the road is going to be like and have the patient put it into his words and how it will effect work and home Life and his own Life. Monitoring psa’s may delay and hopefully for a long time.
Par 4, I will go along with, for in my case there has been no post -treatment plan passed on , as to how to deal with the symptoms. I work outside and can not do the 4 hours without a break,, as opposed to last year,, also, I am more sensitive to cold temperatures and needing a break. I try to work ” dry” – nothing to drink , at all , in the morning and this does stretch out time before stopping by the office. It may have been nice for the doctor to alert me.
Counseling was not offered. Through other people I found out about a support group. The group has brought to my face that I need to change my mind-set towards sex and how to deal with management for my ” frequent” work stoppages. Slowly I am wrapping my mind on the changes of how other men deal with the problems.
Par 4, I will agree with. But the patient needs to know the questions / concerns to be asked / raised. Being single and no family around, things get rough sometimes.
My son will receive he Talk and may not like what I will say,, but hopefully he might delay, if needed, the results and age gracefully.
As for, doing some research, I came down with PC due to having a vasectomy — doc never told me and have had primary deny any connection == previous posted paper t on this site this year, being sexually active in twenties and thirties = I was married then ,, and having a longer ring finger than index finger. None of the men in my family tree come close to the panic psa values.
Last word ; self- fulfilling, to me realistic, I am having symptoms of a more aged man, to me part of the package that was given me. Regrets, yes. Hope, yes, that my son can stand up and have his voice heard — Let’s monitor this, since it is slow growing and no lumps detected. Strong enough to say and be listened to, for when someone says, ‘ Well, you are 60, you must have cancer !! ” and the tests show ” normal ” , so let’s drop the pressure.
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