What We Talk About In The CSN Prostate Cancer Forum

2»

Comments

  • Mark58
    Mark58 Member Posts: 41
    mrspjd said:

    radomized clinical trials
    First, it is important to state that this post is in no way meant to confer judgment upon anyone’s decision to opt out of, or to not enroll in, any clinical trial, be it randomized or other. That is truly an individual & personal decision. However, it is important to understand how critical randomized trials are in the medical/scientific community for the rest of us. Research data gleaned from such trials take us forward into the future with new trials that build on previous ones. I’m in no way suggesting that humans should be used as mice or experimented upon but, data sources have to start somewhere, especially after significant research results have been attained from other animal species.

    Hats off to the brave men and women who have boldly & bravely elected to participate in randomized clinical trials because they are the ones that pave the way for better/newer successful treatments for the rest of us. And in particular, thanks to those men (some of whom have posted on this discussion forum) who have volunteered to participate in randomized clinical PCa trials, not knowing whether they were receiving the “real” treatment or the “placebo” treatment. IMHO, they are the real unsung heroes of the PCa world.

    Clinical Trials
    I agree with Kongo, if I understood him correctly. I absolutely will not participate in a clinical trial if there is a chance of getting a placebo. I could never understand exactly what research data could possibly be gotten from a man taking a placebo. That same data could be gotten from any non-participant. This has always bothered me. Is this the drug company or the FDA? How does everyone else feel about this?
  • Kongo
    Kongo Member Posts: 1,166 Member
    Mark58 said:

    Clinical Trials
    I agree with Kongo, if I understood him correctly. I absolutely will not participate in a clinical trial if there is a chance of getting a placebo. I could never understand exactly what research data could possibly be gotten from a man taking a placebo. That same data could be gotten from any non-participant. This has always bothered me. Is this the drug company or the FDA? How does everyone else feel about this?

    FDA
    Mark, the FDA will not approve a drug for use unless it has gone through a randomized Phase III trial.

    K
  • Kongo
    Kongo Member Posts: 1,166 Member
    kddh said:

    Thanks for your welcome, Kongo, as well as all the information shared. I am a pretty typical Gleason 3+3. Age 59. Diagnosed last August, I got very sick from infection after the biopsy. That is presumably why my PSA went from 6 to 14.9 in 4 months! It then headed back down, but I am hovering between the 9's and 10's.

    I looked into Da Vinci, but both surgeons were frank that my weight (240) made me a "good" candidate for significant incontinence.

    So I'm going to a brachytherapy class tomorrow. It seems like that has the lightest side effects of the standard treatments, yes? Except for setting off metal detectors, and I don't like to fly anyway.

    I am a longtime Kaiser member but I did start with Blue Cross for 2011 and have an appt. at UCSF in late February with Dr Gottschalk for potential CyberKnife.

    I will have to do some serious thinking about costs/benefits. Kaiser may have its limitations but the price is right.

    kddh

    Side effects
    Hey, kddh

    Between the various forms of common radiation today such as brachytherapy, HDR brachy, IMRT (including several types of delivery), SBRT, or proton therapy most near term adverse side effects involving urinary, rectal, and potency issues are are all fairly low although there are statistical differences between them, depending upon which study you choose to read/believe. For example, brachytherapy generally has a higher degree of urinary and rectal issues than either SBRT or IMRT. In my opinion, this mostly has to do with seed placement, potential migration of the seeds where they might bump up against the colon or urethra and so forth. In any event it's most likely a moot point as all of the studies show that the level of urinary or rectal toxicities are in the 4-6% range. There is a potential for longer term potency issues with any form of radiation although most treatments show greater than 80% full function at the five year point and if there are issues, they are fairly easily addressed with drugs like Viagra.

    The biggest thing about side effects, in my opinion, is what your pre-existing condition. If you have urinary issues before treatment (whatever treatment that might be) you're probably going to have issues after treatment. Depending on the size of your prostate, seeds may or may not pose a problem...I just don't know that much about the feasibility of seeds relative to prostate size and if it becomes harder to do with a large prostate or not. It's not really an issue with CK or IMRT as they just take that into account in developing the radiation plan.

    I don't think that seeds would set of a magnatometer at the airport whether they use iodine or palladium isotopes. If the airport had a radiation alarm you might make the needle flutter for the first few months or so but I flew about 250,000 miles last year and don't recall ever seeing a radiation monitor (or course it might have been hidden). The backscatter devices only go to the skin level and would never detect anything in your prostate.

    I think you're being quite savvy to investigate seeds as well as Cyberknife. You may want to look at IMRT as well. There are pros and cons with each of the treatments.

    Despite your weight, you have many options to treat your prostate cancer and I'm sure by now that you've learned that a higher BMI significantly increases the risk of prostate and other cancers, not to mention heart disease. For me, my cancer diagnosis was a lifestyle wakeup call and while I'm still refining my thoughts on this issue, I am moving toward a diet that I believe is reducing the risk of feeding my cancer. I hope you take this opportunity to re-examine your diet and exercise regimin too because it can have a significant impact on preventing recurring cancer after treatment.

    Insurance is a whole other issue. I hear what you say when you say that the "price is right" but I would also add..."you get what you pay for." I'm always somewhat amused (and sometimes saddened) when I hear of people being turned down for procedures and they say "I've always paid my premiums..." I think as we age we have to be particularly judicious in reading the fine print in our insurance policies to understand what is covered and what is not covered. Too often, people pick the least expensive choice not realizing what they are signing up for and what choices they may unwittingly be foregoing. In any event, I do hope you find a treatment that you're comfortable with and is also covered by one of your policies.

    Best,

    K
  • Mark58
    Mark58 Member Posts: 41
    Kongo said:

    FDA
    Mark, the FDA will not approve a drug for use unless it has gone through a randomized Phase III trial.

    K

    Randomized
    I understand that, but I still don't agree with the science behind it.
  • CharlieG
    CharlieG Member Posts: 67
    ob66 said:

    Kongoisms and the like
    The PCa network is one of a number I am on. Others deal with grandchildren activities and my alma mater in sports. But I must admit a couple of things. You tweak my curiosity maximally. Despite your denial, your posts are so lengthy and authoritative such that I am convinced you are either appointed or a self annointed board moderator. One cannot post with such certainty unless there is a valid background, and you do it in the areas that pertain to your PCa as well as a multitude more (your range or scope is overwhelming). If you are not a PCa specialist, you are close. Secondly, you do not seem to have been involved with PCa for that long, so your knowledge is over the top for a limited time period. And thirdly, and that which we all appreciate, you seem to respond empathetically and at length to all new posters, consuming a lot of your energy and time. I look forward to meeting you some day were our paths to cross in SoCal. In the meantime the "mystery Kongo" is fun along with being informative. Maybe an honorary degree on the board is in order. Cheers and many thanks, Bob

    I have to agree
    I have been thinking the same things, Bob. My hat is off to the Kongomeister...
  • gumbyrun
    gumbyrun Member Posts: 58 Member

    Interesting
    So, almost one of five are posting here with treatment option concerns......that these people stil have questions after seeing their medical professionals....that these questions are still unanswered....so it may be that the medical "experts" are not answering the patient concerns, and there is a need for better information to the patient that one can be comfortable with in choosing a treatment option..

    I'm thinking thet the posts here probably has some correllation with the demographics of prostate patients.........for example demographically the majority of patients get surgery....the majority of posters here are talking about surgery.

    Although the numbers of people posting are not stastically reresentative of prosate cancer patients.........general attitutes and a consensus of lay person knowledge are shown in posts for each of the categories mentioned

    Perhaps. But I have always posted questions and comments to this forum late at night when I am alone, thinking about what lies ahead and what has passed. I like my urologist but I wouldn't call him at 10:57 PM on a Sunday night.
    Coming up on 1 year anniversary of DaVinci surgery in Feb 26th. "What a long strange trip it's been."
  • Kongo
    Kongo Member Posts: 1,166 Member

    Interesting
    So, almost one of five are posting here with treatment option concerns......that these people stil have questions after seeing their medical professionals....that these questions are still unanswered....so it may be that the medical "experts" are not answering the patient concerns, and there is a need for better information to the patient that one can be comfortable with in choosing a treatment option..

    I'm thinking thet the posts here probably has some correllation with the demographics of prostate patients.........for example demographically the majority of patients get surgery....the majority of posters here are talking about surgery.

    Although the numbers of people posting are not stastically reresentative of prosate cancer patients.........general attitutes and a consensus of lay person knowledge are shown in posts for each of the categories mentioned

    Ira
    You're spot on, Ira, when you indicate that the people posting are not statistically representative of prostate cancer patients or someone else as many of these posts are from wives, siblings, children, or friends of PCa patients. I would also opine that the vast majority of cancer patients never post on a forum such as this and that most men pretty much do what their doctor's tell them to do. I believe those who find their way to these types of forums are seeking additional knowledge or perhaps aren't satisfied with their doctor's suggestions on treatment. Others are seeking confirmation of decision choices, or are seeking opinions based on the experience of others regarding side effects and recovery from treatment courses.

    I do think that if asked, most of the medical "experts" would address their patients questions. Given the dynamics in one-on-one situations with our doctors, however, I suspect that many patients either forget their questions until after their appointment or something that was said in their meeting prompts a follow-on question they only thought of later.

    In any event, I'm grateful to the sponsors of these forums as I believe that they are a great resource for those seeking information, support, and sympathy.

    K
  • Beau2
    Beau2 Member Posts: 261

    Interesting
    So, almost one of five are posting here with treatment option concerns......that these people stil have questions after seeing their medical professionals....that these questions are still unanswered....so it may be that the medical "experts" are not answering the patient concerns, and there is a need for better information to the patient that one can be comfortable with in choosing a treatment option..

    I'm thinking thet the posts here probably has some correllation with the demographics of prostate patients.........for example demographically the majority of patients get surgery....the majority of posters here are talking about surgery.

    Although the numbers of people posting are not stastically reresentative of prosate cancer patients.........general attitutes and a consensus of lay person knowledge are shown in posts for each of the categories mentioned

    Who posts
    Besides serving as a question and answer forum, the site also serves as a "social" forum.

    I have not added up the numbers; however, I would hazard a guess that 80% of the posts are made by 20% of the posters. Some guys just like to participate (read and/or write)in the forum.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Kongo said:

    Ira
    You're spot on, Ira, when you indicate that the people posting are not statistically representative of prostate cancer patients or someone else as many of these posts are from wives, siblings, children, or friends of PCa patients. I would also opine that the vast majority of cancer patients never post on a forum such as this and that most men pretty much do what their doctor's tell them to do. I believe those who find their way to these types of forums are seeking additional knowledge or perhaps aren't satisfied with their doctor's suggestions on treatment. Others are seeking confirmation of decision choices, or are seeking opinions based on the experience of others regarding side effects and recovery from treatment courses.

    I do think that if asked, most of the medical "experts" would address their patients questions. Given the dynamics in one-on-one situations with our doctors, however, I suspect that many patients either forget their questions until after their appointment or something that was said in their meeting prompts a follow-on question they only thought of later.

    In any event, I'm grateful to the sponsors of these forums as I believe that they are a great resource for those seeking information, support, and sympathy.

    K

    grateful too
    Since the American Cancer Society sponsors this forum, and provides many other resources for cancer patients, this is a great charity to support............one way to show support is to help organize and/or attend a " Relay For Life" fund raiser; held in numerous locations...........I attended my second one this past summer..........the event is very inspiring and worth attending.