Time for men to take a stand on PC

2

Comments

  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    HIFUgal said:

    So sad....that dakatorunner
    So sad....that dakatorunner has only heard about HIFU from what I've written, see? How will men hear about it if I quit..."spamming"....telling men there is another option, one that has verrry little chance of any side effects....my paticipation here makes me a bad girl? I've helped so many and recieved so many thank yous...the few of you who are nasty to me won't quiet me, not until HIFU is approved and available to everyone. Stop the misery.


    Here's another letter from a guy:
    "HIFU works and works well. Dr. Suarez did the procedure on me almost 4 years ago. My PSA is 0.5 and I have a great sex life. Sadly I got this disease in my late 40s. Hopefully the FDA will do the right thing and approve HIFU in the US and give guys another choice in the battle vs. cancer."

    He still has a PSA of .5 because he still has the gland capsule, with surgery the capsule is gone ~ that's why the PSA should be lower.

    HIFU gal, Just to help keep everything in perspective I say....
    HIFU sounds good, at least everything YOU say about it anyway..... but, there is one fact that remains.... the US still has not approved it and insurance doesn't cover it. Those are facts. AGain, for something that has been done supposedly for 19 years in Europe if it was really that successful how is it still yet to be approved by the US....19 years? There has to be a reasonable reason...and don't give me radiologist and surgeons determine what gets approved because surgeons are the ones doing the HIFU procedure - it's not some techno geek. I agree with bd your exhaustive thrust of HIFU on here borderlines irresponsibility and really just looks like a planted stooge from HIFU International. Seriously, do you get paid for each post....a cut of the non-insurance paid procedure from someone getting the procedure done mentioning they heard about it from you? Here's a fact I was able to garner from my over 1 hour conversation with a nurse that called me back from HIFU international. HIFU's business is markedly down from two years ago....the economy has had a large effect according to the nurse who I discussed the procedure with. Do you really work for HIFU international? Do you see where this is going....if you have prompted me to write the above about you....what do you think others are thinking here in this forum. If I was you I would back off a bit. Oh, here's another fact...most every poster on here states...here is how my path went in deciding the procedure for me....specific detailed snipets along the way....but about 100% of us always qualify our decisons with...the choice has to be your OWN.....funny I don't ever remember seeing that kind of comment in your posts???? Hey...I could be wrong and if so I appologize in advance but hey I try to call it as I see it. Oh, here's another question for you. Your husband...who actually had the procedure done....why have we not heard from him on here?...why is it the spouse spending all this time and energy here pushing the result when you personally have not even experienced the procedure and cannot effectively talk about details everyone here is interested in about the after affects on the body? What's your name? What's your husbands name? Are you getting my line of thinking yet? I don't wish any bad outcome on anyone and never will, in fact I want all of us to be cured. Maybe HIFU is viable and a great option for many....I just don't appreciate the impression you are giving all of us based on my thoughts I have presented above. I post my stats (very detailed one's at that) on many of my posts so I won't do it again here.

    Randy in Indy
  • erisian
    erisian Member Posts: 107
    Trew said:

    Personally
    I do talk to men about having their PSA levels checked, but I am not comfortable discussing this problem in mixed company, or with just any man. Actually, I am embrassed by PC and feel for some reason I am standing a little less tall than I once did.

    My I hate this thing.

    But I am interested in pushing awareness of PC, too. Fw men understand what "the shot" means to a man's life. Or what surgery means, or could mean. So I am conflicted about seeking privacy and pushing public awareness.

    I guess it is how I am feeling from day to day- you know, "the shot" effect.

    Embarrassed?
    I never felt embarrassed about having PCa, and to my own surprise I soon found out that I didn't mind talking about it. I will bend anyone's ear about the importance of getting checked. The reluctance of many, if not most, men to speak up or seek support and information baffles me. Look around, there are pink ribbons and breast cancer awareness events everywhere, but nearly nothing for our favorite disease, even though it affects and kills about the same number of people. It certainly looks like it's up to us to make noise about it, since nobody else is doing it. Just being here on this forum puts you in a small percentage of PCa survivors. This is an easily accessible resource, but even so, it is ignored by the vast majority of men faced with a PCa diagnosis.

    Don't be embarrassed. It's not your fault. Don't be afraid to talk about it. Keeping quiet just sustains the ignorance.

    I live in a rural area, and I have to travel about 75 miles to get to a monthly support group meeting that usually has about 15 survivors (plus a few spouses). I am quite sure that there are a LOT more than 15 PCa survivors within a 75-mile radius of the meeting, but that is all we get. I will admit that it took me some time to get up the nerve to go the first time, but now I look forward to the meetings. It wasn't exactly obvious to me that the support group existed in the beginning, because nobody told me about it, or any other resources, for that matter. So I would say that is part of the communication problem -- Did your doctor point you at support and information resources at diagnosis?
  • Ralphie62
    Ralphie62 Member Posts: 61
    Dakotarunner
    We need t-shirts!!! I'm thinking black and "I had prostate cancer, and I kicked it's ****" on the front and "i'm a survivor!!" on the back. I really appreciate your push to get out the word and fight for prostate awareness. You know, the problem is, there is no "guy doctor", no one looking out for us. Women have ob/gyn's, but guys don't have a "main man". I think it's because guys hate the doctor and only go if absolutely necessary. I had to have a lense replacement. I had to have a recent physical to have the surgery, and (thank God) found that my PSA was up...........whoever thought a lense replacement might save your life? Ralph
  • Trew
    Trew Member Posts: 931 Member
    erisian said:

    Embarrassed?
    I never felt embarrassed about having PCa, and to my own surprise I soon found out that I didn't mind talking about it. I will bend anyone's ear about the importance of getting checked. The reluctance of many, if not most, men to speak up or seek support and information baffles me. Look around, there are pink ribbons and breast cancer awareness events everywhere, but nearly nothing for our favorite disease, even though it affects and kills about the same number of people. It certainly looks like it's up to us to make noise about it, since nobody else is doing it. Just being here on this forum puts you in a small percentage of PCa survivors. This is an easily accessible resource, but even so, it is ignored by the vast majority of men faced with a PCa diagnosis.

    Don't be embarrassed. It's not your fault. Don't be afraid to talk about it. Keeping quiet just sustains the ignorance.

    I live in a rural area, and I have to travel about 75 miles to get to a monthly support group meeting that usually has about 15 survivors (plus a few spouses). I am quite sure that there are a LOT more than 15 PCa survivors within a 75-mile radius of the meeting, but that is all we get. I will admit that it took me some time to get up the nerve to go the first time, but now I look forward to the meetings. It wasn't exactly obvious to me that the support group existed in the beginning, because nobody told me about it, or any other resources, for that matter. So I would say that is part of the communication problem -- Did your doctor point you at support and information resources at diagnosis?

    Support from Doc? Ha!!
    No. I have had a very strange doc/patient relationship with my urologist. He did surgery on March 23, I saw him 7 days later on March 31 for the path report, and I believe I have not seem him since then- I have only seen his PA. Very strange.

    But I do feel like my life is embrassing. I am wetting a lot again since radiaiton, the "shot" well, it is sometimes difficult for me to discuss this, even with my wife, but I do not like living with the effects of the shot, but I should just be glad to be alive, but that is not how I feel about all this.

    I am encouraging men to get their PSA checked.

    From day one this whole thing has been a bit overwhlelming to me. And it seems some men take it so well.

    Hopefully I will get some urinary control back soon and regain what I had before radiation.
  • erisian
    erisian Member Posts: 107
    Trew said:

    Support from Doc? Ha!!
    No. I have had a very strange doc/patient relationship with my urologist. He did surgery on March 23, I saw him 7 days later on March 31 for the path report, and I believe I have not seem him since then- I have only seen his PA. Very strange.

    But I do feel like my life is embrassing. I am wetting a lot again since radiaiton, the "shot" well, it is sometimes difficult for me to discuss this, even with my wife, but I do not like living with the effects of the shot, but I should just be glad to be alive, but that is not how I feel about all this.

    I am encouraging men to get their PSA checked.

    From day one this whole thing has been a bit overwhlelming to me. And it seems some men take it so well.

    Hopefully I will get some urinary control back soon and regain what I had before radiation.

    Side Effects
    I am all too familiar with side effects from the shot!
    After some discussion with my wife, I swallowed my pride and asked my doctor about antidepressants. I had a bad physical reaction to the first one, but the second one was fine. Feeling like crap all the time is neither necessary nor productive. Depression is real, compounded by the emotional problems of dealing with cancer and by the hormone disruption. Toughing it out is not an effective treatment, although many men seem to believe that it is, for some reason. Antidepressants reduce the uncontrollable lacrymation too, in my experience.

    When I was hospitalized for bone met pain last fall, the ER doc told me, "You don't get any extra points for suffering." If you need the meds, take them.

    To salvage this post from being completely off-topic...
    Take a look at http://www.ustoo.org/Default.asp
    They have some good information about "Getting Involved".
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Ralphie62 said:

    Dakotarunner
    We need t-shirts!!! I'm thinking black and "I had prostate cancer, and I kicked it's ****" on the front and "i'm a survivor!!" on the back. I really appreciate your push to get out the word and fight for prostate awareness. You know, the problem is, there is no "guy doctor", no one looking out for us. Women have ob/gyn's, but guys don't have a "main man". I think it's because guys hate the doctor and only go if absolutely necessary. I had to have a lense replacement. I had to have a recent physical to have the surgery, and (thank God) found that my PSA was up...........whoever thought a lense replacement might save your life? Ralph

    T Shirts are a good idea;
    additionally, us too has blue plastic ribbon type clip ons and wrist bands.....you can wear these all the time, and engage in conversations.

    Ira

    Probably a good idea for us to post prostate awareness activities in our areas as we come across them.
  • shane59
    shane59 Member Posts: 86
    Ralphie62 said:

    Dakotarunner
    We need t-shirts!!! I'm thinking black and "I had prostate cancer, and I kicked it's ****" on the front and "i'm a survivor!!" on the back. I really appreciate your push to get out the word and fight for prostate awareness. You know, the problem is, there is no "guy doctor", no one looking out for us. Women have ob/gyn's, but guys don't have a "main man". I think it's because guys hate the doctor and only go if absolutely necessary. I had to have a lense replacement. I had to have a recent physical to have the surgery, and (thank God) found that my PSA was up...........whoever thought a lense replacement might save your life? Ralph

    I would buy one how about some posters too
    I love the T Shirt Idea even hats would be good .How about a funky poster , I think this could really take of a very possitive attitude keep up all this good stuff. thank heavens for the lense surgery Ralphie.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    bdhilton said:

    Tell'em all the time
    I tell anyone that listens when the opportunity comes around…Had a friend last month that listened, got tested and had a PSA over 10. He is waiting now for his biopsy results…but without these conversations I have found many guys just do not think about getting them done…

    Bdhilton - so true...
    I lucked out by being in the right place with the right person...my partner who is an RN. My father died from Alzhiemer's - well no one really ever dies from Alzhiemer's they die from asphyxiation when food is sucked into their lungs because they have no memory of how to control breathing while eating in advanced stages of Dementia. Anyway, I had his body autopsied and in the report I find he had prostate cancer with PSA's reported over 30 in medical records. That fact should have been my clue to get a PSA done starting in my early 40's but I was not smart enough about that so here I am at the state fair in Indiana and my partner wanted to visit the health building...something I would never have done on my own or perhaps had I had another partner that was not an RN. She wanted to see if the giant walkthrough colon was still there...I said, OK I'm up for walking through the giant rectum! Come to find out the giant rectum must have been replaced by a more friendly exhibit...but...I did notice a large white poster board accross the building that had written on it FREE PSA test...I said hey I need to do that...didn't my dad have prostate cancer when he died...10 years ago. I was lucky this happened or I would still be walking around now totally oblivious to having cancer growing in my body...no symptoms other than getting up several times in the night to pee. Lucky Lucky Randy. What mountain is it you are climing with your son this summer? ...my brother has done some fourteeniers not sure how many but he wants to do 14 of them I guess. His next trip in the spring is to backpack into the Grand Canyon with his two daughters on an indian reservation. Back to the theme of the thread...I am telling all males and females with males...get a PSA every year and know your number and what it means.
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    shane59 said:

    I would buy one how about some posters too
    I love the T Shirt Idea even hats would be good .How about a funky poster , I think this could really take of a very possitive attitude keep up all this good stuff. thank heavens for the lense surgery Ralphie.

    Here's a link to many T-Shirts and other awareness stuff
    http://www.zazzle.com/prostate+cancer+awareness+month+slogan+gifts?pg=8

    Page 4 has a shirt for your dog even!

    I see a beer mug I would like!

    Still searching for more slogans.....

    Randy in indy
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    shane59 said:

    I would buy one how about some posters too
    I love the T Shirt Idea even hats would be good .How about a funky poster , I think this could really take of a very possitive attitude keep up all this good stuff. thank heavens for the lense surgery Ralphie.

    Here's more Awareness Links
    http://www.cafepress.com/awarenessgifts/3477345

    Hockey Fans....Picture of puck with large Light Blue cancer cell written inside the cell "Puck Prostate Cancer"

    More sites:

    http://www.cafepress.com/gifts4awareness/5784604

    For all you golfers out there this is interesting:

    http://www.zerocancer.org/site/News2?page=NewsArticle&id=9205

    Another great site with multitudes of ideas on Prostate awareness.

    http://www.psa-rising.com/blog/category/events/

    I'm going to bed...nighty night folks.

    randy in indy
  • Ralphie62
    Ralphie62 Member Posts: 61

    Here's more Awareness Links
    http://www.cafepress.com/awarenessgifts/3477345

    Hockey Fans....Picture of puck with large Light Blue cancer cell written inside the cell "Puck Prostate Cancer"

    More sites:

    http://www.cafepress.com/gifts4awareness/5784604

    For all you golfers out there this is interesting:

    http://www.zerocancer.org/site/News2?page=NewsArticle&id=9205

    Another great site with multitudes of ideas on Prostate awareness.

    http://www.psa-rising.com/blog/category/events/

    I'm going to bed...nighty night folks.

    randy in indy

    Awareness
    Wife and i are laughing silly over puck thing.... totally getting something with that on it!!Ralph
  • dakotarunner
    dakotarunner Member Posts: 102 Member

    Here's a link to many T-Shirts and other awareness stuff
    http://www.zazzle.com/prostate+cancer+awareness+month+slogan+gifts?pg=8

    Page 4 has a shirt for your dog even!

    I see a beer mug I would like!

    Still searching for more slogans.....

    Randy in indy

    Zazzle has lots of PC items
    I agree Randy - Zazzle has lots of interesting PC items. I tend to like the "Piss on Prostate Cancer" T shirts, but they also have lots of good posters, etc. Thaks for the site. I could not copy and paste your link, but just goggled it.
  • erisian
    erisian Member Posts: 107

    Here's more Awareness Links
    http://www.cafepress.com/awarenessgifts/3477345

    Hockey Fans....Picture of puck with large Light Blue cancer cell written inside the cell "Puck Prostate Cancer"

    More sites:

    http://www.cafepress.com/gifts4awareness/5784604

    For all you golfers out there this is interesting:

    http://www.zerocancer.org/site/News2?page=NewsArticle&id=9205

    Another great site with multitudes of ideas on Prostate awareness.

    http://www.psa-rising.com/blog/category/events/

    I'm going to bed...nighty night folks.

    randy in indy

    Great Links
    Thanks for staying up late doing research!

    At CafePress, you can set up your own store, for free (at least it used to be free), and upload your own designs for custom printed shirts,hats mugs and just about anything else.

    Now we need more slogans...

    I like the "survivor" theme for T-shirts."Prostate Cancer Survivor" or "Cancer Survivor".
  • bdhilton
    bdhilton Member Posts: 803 Member

    Bdhilton - so true...
    I lucked out by being in the right place with the right person...my partner who is an RN. My father died from Alzhiemer's - well no one really ever dies from Alzhiemer's they die from asphyxiation when food is sucked into their lungs because they have no memory of how to control breathing while eating in advanced stages of Dementia. Anyway, I had his body autopsied and in the report I find he had prostate cancer with PSA's reported over 30 in medical records. That fact should have been my clue to get a PSA done starting in my early 40's but I was not smart enough about that so here I am at the state fair in Indiana and my partner wanted to visit the health building...something I would never have done on my own or perhaps had I had another partner that was not an RN. She wanted to see if the giant walkthrough colon was still there...I said, OK I'm up for walking through the giant rectum! Come to find out the giant rectum must have been replaced by a more friendly exhibit...but...I did notice a large white poster board accross the building that had written on it FREE PSA test...I said hey I need to do that...didn't my dad have prostate cancer when he died...10 years ago. I was lucky this happened or I would still be walking around now totally oblivious to having cancer growing in my body...no symptoms other than getting up several times in the night to pee. Lucky Lucky Randy. What mountain is it you are climing with your son this summer? ...my brother has done some fourteeniers not sure how many but he wants to do 14 of them I guess. His next trip in the spring is to backpack into the Grand Canyon with his two daughters on an indian reservation. Back to the theme of the thread...I am telling all males and females with males...get a PSA every year and know your number and what it means.

    Randy-Half dome out of Yosemite Valley
    Yes I truly believe that everything happens for a reason in life (do not believe in the Chaos Theory) good, bad or indifferent.

    Thanks for asking -Half dome out of Yosemite Valley...My picture is standing in the “Saddle” looking up at the last 400+ feet to the top of Half Dome. Rising nearly 5,000 feet above Yosemite Valley and 8,800 feet above sea level, Half Dome is a Yosemite icon and a great challenge to many climber and hikers.

    The 14- to 16-mile round-trip hike (depending o route) to Half Dome is not for you if you're out of shape or unprepared. Along the way, you'll see outstanding views of Vernal and Nevada Falls, Liberty Cap, Half Dome, and--from the shoulder and summit--panoramic views of Yosemite Valley and the High Sierra….incredible…

    I have personally climbed Half Dome (real climb) in years past but I will be taking my son on the most famous--or infamous--part of the hike…and that is the ascent up the cables. Two metal cables allow hikers to climb the last 400 feet to the summit without rock climbing equipment (if cables not there it would be a class 5.1 + climb). Nothing like getting your blood pumping…Anyway this is my goal and my urologist told me I will be able to do it…Perhaps I should do it for the “Piss on Prostate Cancer” cause and fly the flag at the top….

    The Grand Canyon is incredible…about a 20 mile hike to the bottom I would suggest pack mules with all of your gear to the bottom and hike out (now that is about 20 miles as I remember straight up-I was 13 when I did it with my Dad)…They will never forget the trip…
  • dakotarunner
    dakotarunner Member Posts: 102 Member
    erisian said:

    Great Links
    Thanks for staying up late doing research!

    At CafePress, you can set up your own store, for free (at least it used to be free), and upload your own designs for custom printed shirts,hats mugs and just about anything else.

    Now we need more slogans...

    I like the "survivor" theme for T-shirts."Prostate Cancer Survivor" or "Cancer Survivor".

    Themes
    I also like the survivor theme. It is lots better to be a survivor than the alternative.

    I am stealing a motto from "The Band of Brothers -Easy Company" to thro this out on the table - "Prostate Cancer Survivor -
    We stand alone together"

    Keep up the good fight everyone POPC
  • bdhilton
    bdhilton Member Posts: 803 Member

    Themes
    I also like the survivor theme. It is lots better to be a survivor than the alternative.

    I am stealing a motto from "The Band of Brothers -Easy Company" to thro this out on the table - "Prostate Cancer Survivor -
    We stand alone together"

    Keep up the good fight everyone POPC

    here is mine
    Perhaps a tad morbid but

    Dead Man Walking (front)
    Prostate Cancer Survivor (Back)
  • WHW
    WHW Member Posts: 189
    T Shirt
    The front reads;

    1 in 6 Men WILL Get
    Prostate Cancer

    The back reads;
    Are YOU One of
    The Lucky 5!!

    Sonny
  • bdhilton
    bdhilton Member Posts: 803 Member
    WHW said:

    T Shirt
    The front reads;

    1 in 6 Men WILL Get
    Prostate Cancer

    The back reads;
    Are YOU One of
    The Lucky 5!!

    Sonny

    Sonny Illustrated your design at
    Illustrated your design at http://bdhilton.com/
  • TonyJr
    TonyJr Member Posts: 33
    PC
    I really wish I was as confident and you are, right now I'm still in total shock, I'm trying to deal with this the best way I can. I'm not giving in to it, but I'm trying not to let it or allow it to take control of my life, the way I feel it's trying to...but hopefully I'll eventually get a handle on it..

    Thanks TonyJr
  • randy_in_indy
    randy_in_indy Member Posts: 496 Member
    TonyJr said:

    PC
    I really wish I was as confident and you are, right now I'm still in total shock, I'm trying to deal with this the best way I can. I'm not giving in to it, but I'm trying not to let it or allow it to take control of my life, the way I feel it's trying to...but hopefully I'll eventually get a handle on it..

    Thanks TonyJr

    TonyJr
    What are your stats and where are you on the path in this unlucky club?

    Randy in indy