Sex after prostate cancer treatment — in the UK and elsewhere too


According to a story that first appeared on the BBC News web site last Friday, “Around 160,000 men in the UK have been left with little or no sex life after treatment for prostate cancer.” The story is based on a media release issued by Macmillan Cancer Support — a UK-based, not-for-profit, cancer patient support organization.

While The “New” Prostate Cancer InfoLink entirely agrees with the Macmillan organization and it’s chief medial officer when they state that,

These figures highlight a major issue facing prostate cancer patients after treatment. The sheer volume of men affected shows the need for careful discussions before treatment. Many can be helped through early intervention and better support for men living with or beyond prostate cancer.

we also think that Macmillan (and therefore the BBC News story too) missed a major opportunity here. They never mention the fact that many of the 40,000 men currently being diagnosed with prostate cancer in the UK each year are probably, appropriately, manageable with either active surveillance or watchful waiting, which would massively reduce the risk for and actual incidence of erectile and sexual dysfunction post-treatment.

Do we need to be better able to prevent and/or better manage the erectile and sexual dysfunction currently associated with many forms of first-line treatment for prostate cancer? Of course we do! However, we also do not need to be inducing these problems through the over-treatment of men with low- and very low-risk forms of prostate cancer, and that may represent some 40 percent of the entire problem.

A key message for every newly diagnosed prostate cancer patient today should (arguably) be: “Ask your doctor if you may be an appropriate candidate for active surveillance or watchful waiting as opposed to immediate treatment.” The worst case scenario is only going to be if he answers, “No. I would really not recommend this in your case.” However, if the patient doesn’t ask the question, the topic may never come up at all.

43 Responses

  1. An excellent response. I would only add that if you are told you are not a candidate for AS or WW, you need to follow-up with questioning why that response was given. If the follow-up answer is a generic, “because of your age or likely life expectancy”, shrieking sirens and sonic booms should start going off in your head that whomever you are dealing with is too ignorant of the research on AS to make a recommendation about it. Do not walk, run, run as quickly as you can to someone capable of more nuanced and thoughtful conversation about strategies to preserve not just your life, but your quality of life. Chances are better than not that you have no reason to subject yourself to irreparable and unnecessary and quite frankly, intentional) damage.

  2. For newer readers who haven’t met Tracy before, this is a topic on which she has strong opinions! And she is more than willing to share them.

    :O)

  3. Those pesky side effects … that seem to be under-explained by urologists … and under-reported by patients.

  4. … and yet, her advice is spot-on and consistent with the sitemaster’s.

    (;s)

  5. @Tracy. I have not seen you here before, so I hope you don’t mind if I ask what you mean by “and quite frankly, intentional.” I have strong opinions too, and am not only willing to share them, but feel it’s my duty to do so. If something I claim turns out to be wrong, then I feel it is my duty to admit it, or in the proper cases, to apologise.

  6. I am a newcomer to this site (in my low 60s and with no medical problems before encountering this one).

    Since I am in my 60s I must have cancer because it is commonly found in 60-year-olds. These are comments that have been acquired in face to face meetings and from valid resources. Also since I have cancer, “We must act quickly and nip it in the bud” = doctors advice. With Gleason 7 disease in one lobe, any form of “wait and see” was taken off the dicussion table. My PSA rose slowly to 4 and then dropped again, but the “panic” value was lowered to a PSA of 2 or 2.5 depending on the doctor concerned. No repeat PSA was taken before my decision about treatment. …

    The post-treatment effects were glossed over and, when I pushed the topic, the doctors pulled back. There would be no discussion about “wait and see” because the PSA values “are just vague guidelines and not worth talking about.” The biopsy-based Gleason value of 7 was all that was considered as important.

    If I had been better educated I would probably have “pulled the cord on the bus to let me off” even while the drivers were trying to ignore the bell and I would have gone “wait and see”, since the PSAs were unreliable and they came from different labs, and I would have made sure I obtained a series of PSA values over time from one specific laboratory. Then, if the/a PSA rise happened, I would not have had as much angst, but it would have been spread over a length of time, instead of just months — time to “really” absorb the potential results of treatment … even if I was only postponing the decision.

    What was posted I agree with, the time taken regarding decisions is slanted toward a decision to go forward in the total process, which was unsaid except by one doctor. He told me that “If I do not forward patients onward, they will replace me and find someone else” = feed the system.

    A patient must take the time and push for a real and decent explanation, and learn the truth about the factors involved. For asymptomatic patients, even a Gleason score of 7 gives some time for “wait and see”. The consequences are too great, for I have aged 15 years in a couple of months. Genetically I have one third of my life in front of me and, living as I do, I do not relish retirement.

    My message = Ask/demand answers to your questions; resist the “have to act now” pressure; become informed and take the time to wrap your head around the lifestyle issues; talk to fellow patients and delve deeply/personally into how they handle the situation.

  7. Site:

    Anonymous has got to win something for that post. He hit it right on the head!

    Maybe the Prostate Cancer InfoLink can start the Golden Penis Award, or something like it for best comment of the month.

  8. I agree Anonymous’s post is very thoughtful. On the other hand, for every Anonymous, there seems to be another guy who says, “Thank God I had the surgery, it now appears that I am cured, and while the side effects are not amusing, I can deal with them; the most important thing is I am cancer-free.” So I guess it depends who you talk to, and what kind of experience they had/are having.

  9. The patient’s priorities are a critical factor in the management of low-risk prostate cancer, as is complete information about the outcomes about various types of management. There is no “right” or “wrong” way to manage localized disease. “Right” and “wrong” arrive because of a lack of full disclosure about all the potentially appropriate treatment options for any individual patient, and a failure to accept (by physicians and by patients) the fact that many men with low- and very low-risk localized disease will live for decades without any clinically significant progression of their cancer.

  10. ‘Tis Anni-yan-o-mous again.

    I will agree with Johnathan’s comments and the viewpoint mentioned. The word “cure” bothers me, for it takes “10 years” of follow-up testing to support the word. Surgery can remove the gland, but if a single cell is in the lining, over time the value will rise. Also, with the disturbance of the gland, the possiblity of “escape” is there, and locating somewhere else in the body. Thus the 10-year window of watching. Yes, the mental attitude is a relief, I will agree.

    As for the after-effects, either option results in the same symptoms. I am not an office worker, but an outdoor worker, fortunately with offices available — close-by. I could not continue working if I went the surgical route and I plan to work till the winter salt bags or 5 gal drums of paint get too heavy to lift. With the results of radiation, I am more careful about moving large objects. I am thinking about summer vacation with 21 relatives (from 4 months to 75 years of age) and one outhouse in the woods — and am utilizing an 8-pack a week of important paper now.

    If I had been “listened to” and better informed, in my case, since there were many technique situations involved, I would have liked the “wait and see” approach. But the pressure was strongly stressed, “Gleason 7, aggressive growth, nip it in the bud, must take care of it now, it will grow!” and be harder to deal with … with the above stressed after “It is slow growing.”

    My plea is that the “industry” really inform the patient and have the patient really understand what the future will be. What scares me is that the limits have been lowered. It is true that more will be “caught” early, and the age for initiation of PSAs and biopsies also has been lowered, but does the “industry” inform patients that they will live longer with the side effects after treatment? This is something that needs to be stressed. The key population — the Baby Boomers — represent a large number of potential patients which can easily feed the “industry”, and as the main article indicates, over-treatment of men with low- and very low-risk forms of prostate cancer may represent 40% of this group of men. I am concerned about these men, their mental angst, and their outcomes after treatment.

    With “wait and see”, it just may delay the decision, but the patient will have had time to wrap his mind around it and (hopefully) learned from “older” patients what the results are really like.

    True, there are other factors affecting the “industry”‘s judgement along with each patients’ symptoms or lack of symptoms, and a list of other factors influencing the patient’s final decision, but the application of subtle “pressure to act” is not justifiable (at least to my mind) as a way to “feed” the system.

    The patient needs complete and unbiased explanations, and knowledge from patients who have already been treated, to really make an “educated” decision.

  11. We need a “warning card” that all considering prostate cancer treatment should be given. I’m sure we could all dream up our own versions, but here’s one:

    “Your cancer may not be life-threatening, allowing you to avoid the life-changing side-effects that would come from immediate intervention. You have the right to have your cancer monitored to see if your condition would ever require treatment.

    “If you elect to have surgery, be aware that:
    — XX% of patients experience noticeable reduction in penile length
    — XX% of patients are unable to carry on normal sexual relations without aid of medication. Surgical implantation of a prosthesis may be required in XX% of patients.
    — You will experience some degree of incontinence for the rest of your life. For some, this can be quite severe.
    — You may suffer other ill effects from surgery, including a 1% chance of death.
    — XX% of surgeries result in some cancer being left behind, requiring follow-up radiation therapy or other treatments.

    “If you elect radiation therapy …”

    And so on and so forth. …

  12. OK … No squabbling over exactly what the percentages are to be included in a “warning card” of the type suggested above PLEASE! I like it in principle but there would be huge fights over the details!

  13. I agree with all of the above posts on a warning card/easy to read document for all prostate cancer patients. This card is not just for the patient, but the spouse, too, who is often the one who is freaking out about the big “C” and insisting that the patient “just get the prostate removed.”

    I would also use the word “incontinence” with monetary relevance for the patient, something like: “You will experience some degree of incontinence for the rest of your life, costing upwards of hundreds of dollars a year for pads, etc.” That might make the decision a little more tangible for those who don’t quite, uh, get it.

  14. Actually, now that I think of it, percentages wouldn’t be required. “Some” or “many” would do the trick. The whole idea is to make people aware these things can happen or be avoided. Then they are armed to ask their doctors about them. In a small card they can carry in their wallet, they would have more information than the vast majority of patients now possess.

  15. Am glad Tom removed the % values and substitued — as the doctors would say — “some”, “many”, “small”, “it may happen to you” wordage

    Adding the monetary costs for the the rest of your life is a good touch, but let’s not forget the overlooked back end and its effects and costs … regardless of, if elected, any invasive procedure.

    Now the issue of ditributing the cards to the general/family doctors, since they usually are on the front line. The urologists and next level up may have the desire to inform the patient truthfully with the answers/issues. Can we distribute them through the insurance companies, along with the “new” cut off guidelines?

    Ann-i-yan-i-mouse

  16. Site,

    Tom’s idea of a warning card is just incredible! if we can agree on the warnings for the card, we could effect positive change for thousands of future prostate cancer patients in the US. No small feat.

    This web site would be a perfect vehicle for collaborative card creation, alliteration aside. Can we get a grant for production?

    Insurance companies may be open to the cards if saves them revenue by suggesting that more people consider active surveillance.

    I am in Kaiser now in the San Diego area and have had contact with Dr. Rhee, Kaiser director of urology there, so once we develop the cards, I don’t mind helping to market them. And if we can get Medicare to get involved, we’d have a start.

  17. So I am thinking hard about this one. Please be patient with me. The one thing I am sure we really don’t want to do is call it a “warning” document because this will make some people (and not just doctors) angry … but there are ways to circumvent this. Let me see if I can put together a draft that people can then respond to.

  18. Another good point made. We could print it on red paper and black lettering, as I saw this in one office “Protein is bad for men” in bold lettering, followed by small script.

    It could be a “fact sheet” for “low end” patients. I realize that there are other factors affecting diagnosis, but we also wish to point out what happens “down the road if/when taken.” Do we want to indicate a general time line as to when the effects/changes begin to happen. True everyone is different. Also, there are different roads available.

    To be light for a line :):):). A pet warning to be included? for when hurrying after hearing the bell to see what the newest fax was, beware of cats and dogs wishing to be playful with dangling items. Also a cushion for the lap when with small children.

  19. One thing I am very sure of. If we want this to work, we need to keep it as simple as we can!

  20. This wouldn’t have to be a “warning,” it could be prostate cancer treatment facts … and keep it simple. Using the words “may” or “can” to simplify possible results.

    In response to Anni, … most newly diagnosed patients ARE “low end,” “low information” patients initially.

    If we all agree on the content and presentation … and can get this idea to fruition, this will make a difference. If urologists find professional conflict with this card and decide to make their own, then we have still done our job of instigating change.

    Now we need the urologists who read this blog to help with the wording without personal bias.

  21. Getting back to basics …

    Inform about incontinence, when it starts and gets better, but will have for rest of life. Here mention the monetary increase

    Changes of bowel, when sudden urges start and change in consistence, again for rest of life. Again extra monetary issue.
    Change and eventual loss of function., in one arena, but the structure remains.
    That it is slow growing and can be monitored till the rise of values occur,and other testing can be done to eliminate other sources of PSA rises before biopsying

    First line of distribution, to me, is the primary care doctor, for the time limit and PSA limit has been lowered; by the time the urologist is seen, the pressure for treatment starts, for that is what his job is all about. True, the same information can be given again and hopefully the urologist will openly discuss the “wait and see” approach and not let the bias show.

    The patient would be better informed of the potential outcomes if talks with previous patients about the effects that occur on the various paths are available during this initial stage.

    Again stress that a decision does not necessarily need to be made quickly and let the patient wrap his head around what will happen to him and that he will “age” quicker.

    As studies have indicated, there is a lot of over-treatment and from what I read here, this push is to better educate the patient and obtain time before or if treatment needs to start.

    I realize that there are a lot of factors involved, but am hoping that the doctors do not gloss over preliminary testing, just to propel the patient forward. Let everyone take a step back and look at the results and discuss them before going to the next level.

    Views from the urologists are very much welcomed, even from the primary doctors. We may delay the eventuality, but we will have better informed, less stressed patients and a more knowledgable person living a productive Life. True, it may be putting things on the back burner a little longer, but it may be better than planning simple trips out and knowing where all of the bathrooms are, limiting ones lifestyle, i.e., golf outings or plane trips

    Another contact group may be AARP.

    I am with you and can pass on how my treatment affected me for I kept a daily planner as to when the effects kicked in. I only wish that people were more open so that I could have wrapped my mind around the long-term effects and was able to convey that the test results did not indicate “full steam ahead” but let’s really look at the results, justify the previous PSA testing and be more cautious; again, since it is slow growing. I may have only delayed the final result, but I would have felt better about it.

    Keeping it simple and on a wallet card may be tricky, but let’s see what information is passed along and then how it can be condensed.

    I still feel the need for a warning about pets and small children … from experience, ouch.

  22. You see … We are getting out of control. If you want to do this it is going to have to be short, sweet, and very, very focused or most people just won’t read it. Trust me on this. I have spent 40 years working in healthcare-specific communication, publishing, advertising, public relations.

  23. Ok, if the Sitemaster wants to control this instead random suggestions, then let’s take one topic at a time.

    Start with just one procedure, say RALP and make a list.
    How about creating a separate blog for suggestions. We put surgery/side effects and whatever else down and discuss.

    One thing that is an issue to me is that I’d like to see the urologists who read this blog contribute to what they can live with. I just hope this crowd doesn’t pussy out on this and look the other way. Talk is cheap.

  24. Dear Elucidated1:

    The Sitemaster has no interest in “controlling” this at all. The Sitemaster is merely pointing out that if you and others want this to work, you are going to need to bring order to it and be very focused. That does mean that there will have to be a level of control.

    With respect to getting input from urologists and other physicians who may read this blog, I suspect that few of them will be willing to express their opinions publicly. However, I may be able to facilitate such input in other ways.

  25. I completely agree with Sitemaster that this card has to be very focused. Just the most essential bullet points can be included. They can’t be very many per side or it’s not easy to read or remember. Include a URL so they can find more detailed information.

    This isn’t about answers; it’s about questions. I originally envisioned a credit-card sized piece of plastic with a statement introducing the notion of active surveillance. Then I figured you’d put the side effects of surgery on one side and side effects of radiation on the other. Add a URL and logo and you’re done. Even the side effects statements merely have to be evocative enough to make someone want to ask more.

    I’d look forward to seeing the draft when Sitemaster gets a chance. I have no desire to quibble. Something professionally done and out there is better than a prolonged battle over 20 square inches of real estate.

  26. What I find compelling is the comment that “few (urologists) will be willing to express their opinions publicly.” Wow. Nazi Germany much? Or is that a little strong? But that comment is exactly a huge part of the problem for prostate cancer patients. Some urologists refusing to be transparent.

    If we were talking about the new Common Core standards for education we’d have teachers submitting comments all over the place, but here we can’t find urologists to contribute?

  27. Dear Elucidated1:

    You are missing the point. For most urologists, making any sort of public comment on this topic is a “lose, lose” option. Whatever they say will be criticized vocally, and sometimes abusively (by subsets of patients and professionals). Why open oneself up to that sort of criticism?

  28. Re-reading the initial article and scanning through the postings, the concept of a card with basic questions/information for men that become aware of a possible prostrate situation is beneficial in educating them on the decision-making process that will effect their future life.

    I have pondered this and have broken it into sections, but to place it on a card, or a tri-fold or a sheet of paper, I will leave that up to the person who consolidates the information gathered.

    I do agree with the article that there is “over-treatment” and that the patient needs to be informed via many avenues. I feel he should be educated by the various people in the medical field, literature given, and talks arranged with previous patients that had the different treatment options. Then the patient can better understand why this group is stressing the “wait and see” option as being viable. It may only delay a more active treatment option, but the patient will have had the time to wrap his head around the topics better and begin to understand what his “new” future life could be due to the after effects.

    All I can submit is where I am coming from and how it affects myself. I will indicate what I feel as important via the ( = ) sign and may add a line about it. The consolidation or elimination I leave up to others. I just wish to place it on the table.

    = You have time.

    = They are now able to find cancer cells in men of 60, 50, and even 40 years of age.

    = They “lowered” the PSA “limits” for recommending a biopsy from 4.0 down to 2.0 or 2.5 (depending on the doctor)

    = Follow the same lab PSA for the proverbial rise or jump of values over 6-monthly increments

    = Become informed and openly talk with professionals and patients; read the literature and always ask questions

    = Slow growing

    = You can afford to “wait and see” for a period of time, maybe your lifetime

    I went the radiation option.

    = Interview the people and be shown around (ask about what happens, no pain, how long, where the bathrooms are, how much water to drink, plan what happens afterwards in terms of voiding on the way home, wide neck bottle/external catheter)

    = Waking at night begins the first week and continues till 2-3 weeks after the 44 treatments.

    = Added expense of pads

    = Change of lifesytle (fewer spontaneous outings, i.e., golfing, fishing trips)

    = Changes in bowel movements (in last two weeks of treatment) and change of consistancy (2 months post-treatment and counting)

    = The muscles have been permanetly damaged and one has aged, say, 15 years in the area

    = Change and eventual loss of fluid, but the structure is workable (half way through treatment, became more of fluid consistency and shortly will not appear; but still able to achieve an erection, with aid)

    To sum up in the proverbial 25 words or less: Cancer is now commonly being detected in men of 50+ years of age. Become informed via doctors, patients and literature. You have time to think about making a decision that definitely “ages you” in that area and affects how you want to live your life.

    It is time to pass the Award to someone else now, glean from the postings and future ones and come up with a presentation that allows men to become infomed and stand up to the pressure in this stressful time.

    Thank You for allowing me to contribute my thoughts on this “wait and see” and “life after treatment” dialog. I hope that it happens and becomes distributed in waiting areas, doctors offices via recognized organizations that give merit to the cause and that men read and understand the potentials. For I hope that what I went through happens to less and less men so that the 40,000 that have gone before are less in number in the future just from the lack of being totally educated on the this path through Life.

    Again, I realize that there are many factors affecting prostate cancer and everyone comes to the table from different backgrounds.

    I also realize that the card or series of grouped cards or tri-fold or fact sheet allows the means of pertinent dispersal of vital information. I am not capable of adding information on that decision process route.

    Again, thank you for allowing me to put my two cents into this worthy cause and I will stand back as others contribute their thoughts and experiences as to the time the effects took place and how to pass that information on to other men and the consolidaton process begins.

  29. Site,

    You said that I am “missing the point”, yet that is exactly what I’m trying to make. We would not even be discussing all of this if the urology community was transparent and openly self-critical. It is compromising the health of hundreds of thousands of prostate cancer patients each year.

    When is the time to call bullshit to an incestuous self-protecting medical community? Really. How many more men are going to be victims of over-treatment? And they are.

    How many more seemingly tough US males are going to have RALP recommended to them, only to find out after the fact that the lose their penis length, ability to get an erection and are spending hundreds of dollars a year on male diapers?

    So, now we can’t find even one anonymous urlogist who can vet our comments? I do like some of the suggestions for a card given by Anni, especially the first one of “You have time.”

    But unless one has a Gleason score of 6 or lower, or a small amount of cores positive, they may not have time.

    I would add:

    Interview at least six patients of any treatment you choose before you do it. And don’t just interview patient names given to you by the doctor’s office. Visit YANAnow to also get a perspective for what others say.

  30. Dear Elucidated1:

    You have now changed the issues.

    (1) The lack of transparency of information on treatment outcomes by physician (which is what is actually important for patients) is a problem across the whole of medicine. Of course it is also a problem across the whole of plumbing, automobile maintenance, lawyers, teachers, etc. I don’t know how to solve that problem. It certainly isn’t exclusive to urology! I do know that things like Angie’s List haven’t really resolved that issue.

    (2) I will have no problem getting input anonymously from some really good, patient-centric urologists and radiation oncologists. What I had said before was they are probably not going to want to be giving public comment on a site like this.

    (3) Re wording of specific messages. The use of “may”, “often”, “sometimes”, etc., will be crucial. Most men diagnosed with Gleason 8 to 10 disease don’t have much time to sit and “wait and see” (unless they are well into their late 80s or early 90s), when watchful waiting may well be appropriate.

  31. I’m still trying to understand which “issues” I have changed. I do not know of any other area of medicine, except urology, where over-treatment is common and men have to deal with their very manhood being changed … and then you add in incontinence. Hmm.

    I’d just like to see one urologist stop by this website with professional imput. I’d just like find to find urologists who are not afraid to publish their personnal data and frequency of cancer recurrence and success of treatments from them, personally. And I don’t care if the topic is radiation or RALP. Prostate cancer patients deserve to know the rules so to speak.

  32. Dear Elucidated1:

    There are literally dozens and dozens of conditions that are “over-diagnosed” and “over-treated” on a daily basis — particularly here in America where we have delusional expectations about health care. We can start with breast cancer, viral infections, and the childhood condition known as attention deficit hyperactivity disorder or ADHD. The treatments profoundly impact the lives of those who get over-treated.

    In the case of the use of antibiotics to treat viral disorders, they also have profound impact on those of us who may need those antibiotics to treat significant infections because we have spent most of the past 70 years breeding strains of drug-resistant bacteria as a consequence. In the case of ADHD, it is in the nature of being a child to be hyperactive and to have a limited attention span — especially when the school you are attending offers little by way of opportunity for exercise and many of the teachers have no idea how to engage your attention in the first place. Are there kids who do have a real clinical problem? Sure there are … but nothing like the number that get labeled and treated.

    With regard to breast cancer … far too many women are now absolutely convinced that they need a double mastectomy after being diagnosed with a trivial amount of DCIS in one breast. You think that doesn’t scar them (and probably their spouse too) physically and emotionally for life?

    My point is that you see the way prostate cancer is discussed and treated as being unique in some way. Frankly, it isn’t. It is simply the condition you have learned about through your personal experience. Decision processes across the whole of medicine tend to work in similar ways … and they will continue to do so while physicians are trained to believe that they know more about what is good for their patients than their patients do. “Patient-centric” medicine is a fantasy today — for a variety of reasons: these include unreasonable patient expectations, lack of transparency about the outcomes and complications of specific forms of treatment for specific disorders, and our appalling intercommunication skills.

    And you should understand that many physicians do publish their “outcomes” in prostate cancer (from surgical and radiation therapy series). However, all those articles are written from specific points of view, so interpretation of the data in a neutral manner is almost impossible.

    Last but not least, there are regular physican comments on this web site. They just don’t comment in the way that you seem to think they ought to. For example, Dr. Chodak regularly notes that there are no good long-term data on the outcomes of treatment with HIFU or CyberKnife radiation. He stopped actually treating patients some years ago, and he was one of the first “apostles” of expectant management.

  33. I agree with much of what you say. For me, I wouldn’t even be here if my prostate cancer experience didn’t have several bumps in the road. After having urologists tell me to my face something that was not true, I knew that some US urologists were just full of shit. One even told me that I should be taking Lupron and yet I had a Gleason score of 6!

    I am cancer free with no side effects thanks to HIFU. I had no pain. But that is not true for thousands of patients in the US. Check out the dissatisfied people on YANA. Most are embarrassed and stay quiet, though, and don’t go on forums.

    The ramifications of prostate cancer mistakes, over-treatment, under-reporting … and side effects that last decades is one of the reasons why this site exists. There is no other forum or advocate for prostate cancer patients. It is true that urologists do not publish their data, individually. It is true that patients have difficulty meandering through a variety of treatments when their very manhood at risk. Many don’t know it until it is too late.

    ADHD? I spent 34 years in classrooms successfully with ADHD kids and know how to deal with it … with or without drugs. There are many ways to channel focus … including setting, seat arrangements, assignments, exercise, nutrition, etc. It is not hard. What is hard is 35 kids in a classroom … and five have ADHD. And why are the boys the majority of ADHD kids? Hmm.

    US women are so far ahead of prostate cancer patients when it comes to breast cancer. The men are all over the map, and if it wasn’t for this website or YANA, nothing would be available. I know a woman whose mother and aunt died of breast cancer. She has great tits, but just had one removed. Now that she’s genetically predisposed to breast cancer, she may lose the other one too. It is all individual. And it is about womanhood, too.

    Dr. Chodak? Are you kidding? Have you seen his posts on Medscape? Do you know that urologists have tried to communicate with him when he says “l look forward to your comments” yet there is no place to comment?

    I do agree with Chodak, you, Terry on YANA about active surveillance. Too bad most US urologists are not good at the “active” part unless the patient is, uh, “pro-active.”

    Dr. Chodak has gone out of his way to denounce HIFU. Yet, he has never witnessed or performed one. Nice credibility. There was also no definitive data in 2003 when RALP came out yet why didn’t he complain about a lack of data on da Vinci?

    I’ve now met with six urologists who told me to my face that “HIFU will never be approved in the US” yet, here it comes. These doctors, also had NEVER witnessed or performed HIFU, yet had strong opinions on it.

    Lastly, Mike, I am only here because I give a shit. Most prostate cancer patients move on in their life, good or bad.

    For me, I want positive change for all prostate cancer patients in an unbiased, forthright way. I want a folded-over card that has all of the rules on it for prostate cancer patients, simply stating the treatments and positive side effects for stupid people like me.
    Am heading over to Palm Springs in an hour. My first time back there, cancer free … and that golf is going to be way more fun this time.

  34. Dear Elucidated1:

    I have no idea why you say there is no way to comment on Dr. Chodak’s commentaries. There are reams of commnents after some of them. Of course you do have to be a member of Medscape and you do have to have the intelligence to scroll to the bottom of the page to use the comment box, just like you do on this site! The latter may be too complex a thought for somne urologists!

    Actually, I distinctly remember talking to Dr. Chodak about RALPs back in the early 2000s. He had a similar attitude to the da Vinci system as he had to some of the other new technologies … basically, ‘Why are people making claims that it is “better” when there are no data to support this yet?’

    I don’t know if you are aware of this but actually Dr. Chodak was the first urologist to encourage some of his patiuents to form a support group — which became the basis for US Too. Gerry Chodak and I don’t always agree, but we agree about a lot more than we disagree about!

  35. I get it. It was a lack of intelligence. Whew! I’m glad I figured that one out. BTW, I have spoken to the Medscape moderator who did tell me that there was no forum for comments on his articles, but that was some time ago. There WAS no box at the bottom. I do get the updates and thought I “was” a member but my intellect is getting more suspect by the day.

    I finally found his own forum online. Do you think Dr. Chodak is progressive?

    Glad urologists read this blog and can submit reasonable side effects to us for a card. Anonymous is fine. Maybe they can send it from under the covers.

    I’d even like to find their secret forums and blogs to comment on. Does becoming a urologist mean you all of a sudden get ‘thin skin?”

    I’m still fascinated at the comparisons here to things like Angie’s List, etc. This blog is all about prostate cancer. That is the topic, right?

    I think I’ll submit a blue collar version of the card that makes the side effects very clear then if there are any really smart people here they can vet it for us.

  36. After re-reading the article and the comments, there are informational points available to be considered for the card. Sure, numbers substituted for English words make sense. Specific dates of effects can be mentioned as early-on or late in treatment (in terms of radiation). I do not know when effects start after surgery or HIFU for one has the catheterization time period involved.

    Lifestyle-altering effects with monetary cost results is a major point to inform the patient about. The concern is, how does one expand on that so that a comprehensive conversation can be held. Those words encapsulate so much that a post-treatment patient understands, but the newly diagnosed do not fully comprehend, I feel — the waking up, the walking around for an hour and settling the system before going out for a walk or to work, situations involved in the working world or spontaneous or weekend outings, for I have been “caught”.

    I would like to view what people are considering for the info card

  37. I do not know who anyone thinks is currently “working on” this proposed card. I will tell you that I am not and will not be able to for quite a while. If someone else wants to give it a go, then please do so.

  38. Dear Web Master … In some of the info I have picked up, there is talk about maybe making Gleason score 7 which in my case “Intermediate Risk” could be suggested as “Active Surveillance”. …

  39. Dear William:

    With regard to the very long comment you left, it is important for you and others to understand that the issue of whether one can reasonably just monitor an intermediate-risk form of prostate cancer on active surveillance is still being and already has been extensively researched. If you search this site you will find numerous comments that deal with research into this topic going beck to about 2010.

    The current general consensus is this:

    — It is a reasonable option to consider active surveillance for “favorable” forms of intermediate-risk prostate cancer (which basically means a prostate cancer that is clinical stage T1c or T2a with a Gleason score of 3 + 4 = 7 and a PSA of< 10 ng/ml and only a small amount of Gleason pattern 4 cancer in one or at most two biopsy cores).
    — The degree of "reasonableness" of this option is to a large extent based on the willingness of the patient to take the (relatively small) risk that his cancer might metastasize before he could get it treated and to consider that that is less worrisome to him than the risks associated with treatment (incontinence, loss of erectile function, etc.). Men who are more concerned about loss of their quality of life than they are about their risk for dying of prostate cancer are generally going to be more likely to select initial active surveillance if they have a diagnosis like this.
    — Age is certainly a factor. The older the patient at the time of diagnosis with "favorable" intermediate-risk prostate cancer, the less likely it is that he is ever going to be at risk for dying of such a cancer.
    — We have extensive data now showing that men diagnosed with "favorable" intermediate-risk prostate cancer can do very well on active surveillance.
    — What we do not know yet is how to be able to differentiate (based on molecular markers and other tests) between the men like this who will do well on active surveillance and those who will not do so well and therefore would be wise to have early treatment. (But this is being intensively researched.)

    Men who have “unfavorable” intermediate-risk prostate cancer of any type (i.e., with any amount of cancer with a Gleason score of 4 + 3 = 7, or with a higher clinical stage or with a PSA level of 10 ng/ml or higher) would not generally be advised to consider active surveillance if they have a life expectancy of more than 5 or 10 years — but I certainly know of men like this who have elected active surveillance and are still on it after as much as 10 years or more.

    There are no "rights" or "wrongs" here. Completely different decisions can reasonably be made by different men with exactly the same diagnosis. Current guidelines from several organizations simply state that active surveillance is an option for men with “favorable” intermediate-risk prostate cancer. The decision is up to the individual in consultation with his doctors.

  40. That is a great response from Sitemaster. Mike are you still the sitemaster?

  41. Jim:

    I don’t believe anyone has fired me yet … but maybe I missed the e-mail!

  42. Great. Haven’t been following NPCIL but … you might want to check your spam folder. You never know. …

  43. Thank you for the reply so quickly. I need to shorten my comments but as you may know taking to medical professionals you end up receiving various types of responses from questions. I have seen other patients mention this in various blogs. So far you have answered many issues that I felt are important. I have already had surgery and am on the mend for about 6 months. Thinking by asking some of these questions maybe will help others.

    You have confirmed what I have heard others say on the subject of wait & watch.

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