not angry enough?

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medved
Veteran Member


Date Joined Nov 2009
Total Posts : 1096
   Posted 6/10/2011 4:56 PM (GMT -6)   
I recently attended a fundraiser for prostate cancer research. (Cost $500, so I hope it does some good!). Someone asked the docs there why the breast cancer and AIDS communities have been so successful at raising awareness and raising money for research, while the prostate cancer community -- such as it is -- has been so much less successful. The answer given was something like this: the women and the AIDS activists got angry -- what was happening to them was unfair and they would scream and yell and march and protest until someone did something about it, while guys who have prostate cancer or have family members with prostate cancer, etc are complacent and accepting. So the squeaky wheel gets oiled. I wonder if this is true -- and if so, why it is?

Carlos
Regular Member


Date Joined Nov 2009
Total Posts : 486
   Posted 6/11/2011 5:44 AM (GMT -6)   
Medved,  Thank you for your generous contribution.  I think that the lack of interest in your post fairly well illustrates the problem.  No one cares.  Not even men with prostate cancer.  Finally, it is an old mans disease.   Old men die of something every day and no one outside of the families really care.   Just the cold hard facts of life.
 
Carlos
Dx 2/2008, at age 71, PSA 9.1, G8, T1c
daVinci surgery 5/2008, G8(5+3), pT2c
BCR 2 1/2 yrs after surgery
IMRT, 68.4 Gy, 12/2010 - 2/2011
PSA 0.07 three months after IMRT

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 6/11/2011 6:05 AM (GMT -6)   
I totally agree with this. Unfortunately I think people are ashamed of prostate cancer, because of this shame no one wants to bring it into the light. Although I am not sure if it is because of the prostate cancer itself, or the negative effects of the treatment that is so "private" that no one wants to talk about. Michael and I have big magnets on our care that say "support prostate cancer" "prostate cancer survivor" You see these for breast cancer on every other car you drive by, or you go shopping now and there are pink tissue boxes. When Michael had his surgery, all the glove boxes were pink. The Susan G Komen people have done a wonderful job, as it should be. I wish we would figure out a way to get Prostate cancer out there and as well supported. I think it is going to take money to get more money, lobbyists and the thousands of men effected to come out and talk about it. More and more the "famous" are coming out (if you will) this is great and a good place to start....

Medved, I think this is TRUTH! Thanks for sharing it, nice to know I am not alone in my thought process.
Susan
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
1-2 pads per day
nocturnal erections within a month, and able to have sex with Levitra.
1st post-op PSA less than .05

staging: pT2aNo, Gleason 6

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 6/11/2011 6:48 AM (GMT -6)   
med,

i agree with your point, but like many things, there is no one easy answer.

traditionally, men aren't as open about medical matters. there are still households where if it weren't for the wife's intervention, their husbands would never see a doctor.

also, i don't think men would always be willing to cooperate in a group the same way that many women do, even if it is for a good common cause.

then of course, the media is so entrenched with the "pink", its just politically correct for them to keep pushing BC endorsements, because its very popular, and makes them look good in the process.

then there is just the nature of prostate cancer, being a gland that is part of a man's sexual mechanics, and along with that of course, comes ED and incontinence, issues that you aren't going to discuss if you have breast cancer. and like mentioned, the myth of it being "an old man's" disease doesn't help either.

there are countless other cancers and diseases that get little if any pubic light, so its not just limited to our cause, PC.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

rcroller
Regular Member


Date Joined May 2011
Total Posts : 318
   Posted 6/11/2011 7:16 AM (GMT -6)   
Lung cancer is still the leading cause of cancer death among men and you don't see many TV commercials specifically addressing that either. Quit smoking, yes but usually geared to teens and not specific to lung cancer...not like back in the day when John Wayne came on TV and made his plea for others to do in time what he wished he had done. It was a powerful message but long, long ago. I have yet to see one TV commercial specific to PCa, although admittedly was oblivious to this "old man disease" all of eight weeks ago...and as David said, there are countless other cancers and diseases that get little if any pubic light.
Age 53- PSA 2/11 3.5
4/21/11 BX Path Report: 3 of 12 Left PCa , 3+3, 3+4, 4+4
4/29/11 Received PCa DX, G-8
5/18/11 open RP Performed, Right nerve bundle spared
5/24/11 Post Op Path Report: G-7(4+3) 7%, pT3a N0MX, EPE, PNI+, SVI-, Left margin <0.1mm from inked margin
6/1/11 Cath removed, Incontinence-No, ED-Yes.

clocknut
Veteran Member


Date Joined Sep 2010
Total Posts : 2649
   Posted 6/11/2011 7:59 AM (GMT -6)   
It has been my experience that very few people are comfortable talking about prostate cancer, except those of us who have experienced it, and even some of the guys I know who have been treated for PCa don't really like to talk about it.  Many of them don't even want to know much about their disease.  They just follow doctor's orders and hope for the best.
 
Last Sunday, I wore a blue ribbon on the lapel of my sport coat.  A friend of mine noticed it and asked, "Why blue?"  When I said, "For prostate cancer awareness," his only response was an embarrassed "OH!"
 
It seems as if people connect with the idea of breast cancer, but dozens of other cancers (ovarian, uterine, testicular, bone, etc. etc) are unpleasant realities that most people feel badly about but are not comfortable confronting or discussing.

Snowbound
Regular Member


Date Joined Jun 2011
Total Posts : 224
   Posted 6/11/2011 9:53 AM (GMT -6)   
It might not have the marketing of the pink ribbon campaign, but I think that it does get sufficient attention here in Ontario Canada. The main reason I went for a physical last year is due to the Health Canada promotions of PSA testing when you turn 50. I had no symptoms so I was shocked by the result.
 
Just last weekend Ottawa had it's "Ride For Dad", an annual motorcycle ride fundraiser that runs in communites across the country. This year in Ottawa they had 2,300 bikes and raised $400,000. The new Movember campaign that launched in Australia also seem to catch on this fall with lots of guys in our area growing mustaches.
 
 That said, I do agree that it needs all the promation it can get.
Glen, age 50
PSA 5.43 at June 2010 physical
Biopsy: 8 of 12 samples positive, 75% in 1 core. Gleason 7
Radical Prostatectomy 12/3/2010
DIC complications during surgery
Pathology: 3.5cm tumour, no capsular invasion, lymph nodes negative
Catheter removed 12/26/2011
PSA currently undetectable!

Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 6/11/2011 6:04 PM (GMT -6)   
Check out MOVEMBER WORLDWIDE, it's about prostate cancer awareness.

It's relatively new but it *is* happening.

IMO, a lot of the lack of hype about PCa could be due to mens' innate shyness about medical problems, their idea that they must be super men and their reluctance to put it out there.

Also, the fact that it's a 'slow grower' tends to make people think you can live with it forever, when in fact it kills tens of thousands of men each year in North America alone.

Everyone seems to know someone with a low Gleason who's had it for a decade, so it's no big deal when indeed it *is* or can be, fatal.

We all know people who get cancer and are gone very quickly, so it seems more dramatic or tragic, I guess.

Mary

Post Edited (Willie B) : 6/11/2011 7:48:21 PM (GMT-6)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6898
   Posted 6/11/2011 6:26 PM (GMT -6)   
Carlos,
 
Very good points, but I'll take the "bait" on the "old men's" disease comment, and fire back my situation as a rebuttal - no symptoms, diagnosed at 56, G4+4 in 7 of 12 cores, 4+3 in 2 more.
 
Now, just to make the point, not to debate, but at a recent event I had a PCa survivor wristband. A man asked why I was wearing it. My response was "because I have prostate cancer and I'm not dead yet - do you know if you have it?" He didn't even know what it (PCa) was (you could see the original problem was that he knew what yellow and pink meant, but not the blue). Sparked a few minutes of discussion, and he claimed to be heading off for a test. But how many will just say to themselves, "it's only one in six, it won't happen to me" ?
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2216
   Posted 6/11/2011 7:17 PM (GMT -6)   
Every home run hit tonight between the Atlanta Braves and Houston Astros 13 grand will be donated to Prostate Cancer Foundation. On Fahter's Day the Braves will have Mongtgomery Gentry perform and donations will be made to PCa Foundation for research. I think one of the Group members had PCa and recent surgery. So all of this is gettin air time, which is good. But David makes some very valid points about the subject.
Michael

natural44
Regular Member


Date Joined Dec 2010
Total Posts : 172
   Posted 6/12/2011 11:05 AM (GMT -6)   
I agree with alot of what has been said so far in this thread, however...I am not an old man!!! I am 45! I will not accept that this is an old man's disease! I am doing everything I know to do to raise awareness! I talk to every man I know, and tell them to learn their PSA number and do something about it, and to the women I tell them that the men do not take care of themselves as good as women so it is their job to make sure the men in their lives do take care of themselves and know their PSA number!

I have personally had 5 people I have talked to about checking their PSA since my diagnosis 10 months ago go check and have found early stage PCa!

WE MUST ALL make this disease a house hold conversation, when a young man turns 18 they go register for selective service, at 21 you can drink in a bar... by age 35-40 all men should be asking to have the baselines checked for PCa! If I can go buy at the store a pink toaster oven for breast cancer awareness, then I also want to buy one for prostate cancer awareness

PS: how many knew in here that the pink ribbon for breast cancer has a partner ribbon for each type of cancer..and the ribbon for prostate cancer is a light blue.... I did not know this till after I was diagnosed and got ANGRY about making the world aware of this terrible killer that we stay too quiet about!

lets get more angree like Medved says to start out this thread!


I do not mean to vent or to upset anyone with my words, but this is how I feel about this awareness issue and hope we all get angry enough to help increase awareness.
age 44 when diagnosed 45 now
RRP 9-28-10
gleason 3+3
pathology report clear
11-1-10 PSA 0.02
3 month 0.00
6 month 0.00
12-1-10 noctural erections, not very strong maybe 20% none prior to Osbon pump use
3-30-11 Trimix 1st injection works GREAT! and more nocturnals and even some spontanious erections plus responding a little bit now to oral meds!!! The trimix really started things going!

KathyWithMS
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/13/2011 9:40 PM (GMT -6)   
Hope For The Future?

Antineoplastons (ANP) are peptides and amino acid derivatives, discovered by Dr. S. Burzynski, M.D., Ph.D. in 1967.

Dr. Burzynski first identified naturally occurring peptides in the human body that control cancer growth. He observed that cancer patients typically had deficiency of certain peptides in their blood as compared to healthy individuals. According to Dr. Burzynski, Antineoplastons are components of a biochemical defense system that controls cancer without destroying normal cells.

Chemically, the Antineoplastons include peptides, amino acid derivatives and organic acids. They occur naturally in blood and urine and they are reproduced synthetically for medicinal use. The name of Antineoplastons comes from their functions in controlling neoplastic, or cancerous, cells (anti-neoplastic cells agents).

Antineoplastons act as molecular switches, which turn off life processes in abnormal cells and force them to die through apoptosis (programmed death of a cell). While they trigger the death of cancer cells, they do not inhibit normal cell growth. They specifically target cancer cells without harming healthy cells.

It is generally known that the cancerous process results from increased activity of oncogenes and decreased expression of tumor suppressor genes. Antineoplastons "turn on" tumor suppressor genes and "turn off" oncogenes restoring the proper balance in gene expression

The FDA permits cancer patients to be treated using Antineoplastons in FDA approved clinical trails. Since brain cancer is one of the most difficult cancers to treat, he places a focus on brain cancer in his clinical trials. However he has successfully treated prostate cancer patients too.

Post Edited (KathyWithMS) : 6/13/2011 9:44:35 PM (GMT-6)


Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 6/14/2011 8:53 AM (GMT -6)   
Kathy, QUACKWATCH has a very insightful and informative note about Dr. Burzynski.

I googled 'antineoplastons, cancer' to find it.

Willie B
Regular Member


Date Joined Jul 2010
Total Posts : 155
   Posted 6/14/2011 9:02 AM (GMT -6)   
QUACKWATCH also has a 'Message for Cancer Patients Seeking Alternative Treatments' that I think everyone should read.

There is a very long list of Alternative Treatments, what they contain/are, how they've been 'tested' and the outcomes.

Please take a few minutes to check it out, as we all get very desperate as things fail to work in our favor.

Mary

KathyWithMS
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/14/2011 9:04 AM (GMT -6)   
I'm not surprised, Willie.  Cancer is a huge business. The more I understand the business model, the sicker I feel. I worked in the fundraising buisness, so I got to learn how it works. The small percentage that actually goes to research shows that they are not interested in finding a cure. That's why a drug as archaic as chemo is still being used. With all the money raised over the years, shouldn't there have been a cure by now?  I watched two relatives die from this disease, so I'm happy the FDA is now moving in the right direction and allowing innovative non-toxic treatments to be tested in clinical trials. You should be happy too.
 
Big Pharma has too much control. Do you know that the whole Breast Cancer Awareness Month in October was dreamed up by the company that makes Tamoxifen? True story! They figured it would motivate more women to get mammograms, which meant more women would get diagnosed and then more women would take Tamoxifen and they would get rich. Do your homework and you'll quickly see who the real quacks are.
Conspicuously absent from the public relations campaign of the National Breast Cancer Awareness Month is any information on environmental and other avoidable causes of breast cancer. This is no accident. Zeneca Pharmaceuticals— a spin-off of Imperial Chemical Industries, one of the world's largest manufacturers of chlorinated and other industrial chemicals, including those incriminated as causes of breast cancer— has been the sole multimillion-dollar funder of National Breast Cancer Awareness Month since its inception in 1984.
 
Zeneca is also the sole manufacturer of tamoxifen, the world's top-selling anticancer and breast cancer "prevention" drug, with $400 million in annual sales. Furthermore, Zeneca has direct management of 11 cancer centers in U. S. hospitals. Zeneca owns a 50 percent stake in these centers known collectively as Salick Health Care.
The link between the ACS and NCI and Zeneca is especially strong when it comes to tamoxifen. All three of the should be listed on the quacklist.

 

Post Edited (KathyWithMS) : 6/14/2011 11:01:01 AM (GMT-6)


Tikvah
New Member


Date Joined Jun 2011
Total Posts : 10
   Posted 6/14/2011 11:35 AM (GMT -6)   
Yes, it's way past time for more resources to be put into Prostate cancer - all aspects of it.

The gals did a wonderful job of bringing breast cancer to the forefront - and the resources began flowing.

And yes, part of the problem may well be the age difference involved - PC is clearly associated with increasing
and advanced age...Breast cancer perhaps a little less so. As noted above, there are also some distinct
inherent differences in the way the two sexes handle medical matters in general.


From even a cursory read on this forum, it's clear that many women care deeply about their man and his
prostate issues - it wouldn't surprise me if the women lead the charge to focus more resources on this health matter.


That's not to say that we men shouldn't speak out - but the guys that I speak to about Prostate matters speak in
hushed tones - they're not fired up at all...that has to change.

Post Edited (Tikvah) : 6/14/2011 11:40:00 AM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/14/2011 12:16 PM (GMT -6)   
KathywithMS, how about telling me a little of what your stance is and purpose for posting in PCa is. Do you have a family member or others who has the disease? I can understand you wanting to share cancer info, but I must confess I am wondering where you stand on what we are discussing right now.

You have posted 3 or 4 times, concerning a process that has been declared quackery by several watchdog sites, even posting links to a website, but you did remove the links after I edited the first 2 out. Yet, you seem to be pushing this Antineoplastons treatments and at the same time belittling drug companies and their drugs. You haven't said it yet, but are leaning right on the edge of saying the 'alternative treatment' Antineoplastons is better than or can replace mainstream drugs to fight cancer. Are you trying to 'gently' guide folks here to this treatment? Are you on a mission to discredit drug companies? I ask because when someone is pushing something or pushing against something, then we all would like to know their motives, intent and future plans are, as far as discussing it with our members, some of which may be in an emotional or physical weak state at may be ready to clutch at straws.

If I have read this wrong, I apologize, but I feel we need to know where you are coming from, so we can decide on your credebility as a non prostate poster who is offering information to us. Thanks
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

KathyWithMS
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/14/2011 3:03 PM (GMT -6)   
Hi James,

Thanks for taking the time to respond so professionally. You asked a lot of good questions. I'm not sure where to begin. This topic makes my blood boil. So here it goes.

My cousin's husband died from prostate cancer last year. We watched the effect chemo had on his body. My cousin was recently dx with Stage 3 breast cancer. The more we read about Tamoxifen, the more our family is convinced that this may not be the best route to take.

The 50% vs. 1% benefit given for Tamoxifen is the difference between a relative statistic (e.g. 1% is 50% of 2%) and an absolute (the actual difference, or 1 vs. 2) statistic. And what's sad is that drug companies always express a drug's benefit in relative terms, which is merely the relationship between outcomes -- not the bottom line difference.

Last week's "exciting" headlines about Aromasin showing a 65% benefit in preventing first time breast cancer is a classic example of this very misleading numbers game. The absolute difference was something like 1.5 recurrences per 100 women in the non-Aromasin group to .5 in group taking Aromasin -- a difference of less than one per 100.
To be honest, I don't think doctors understand this.

The Burynski video really opened my eyes. I am deeply disturbed and angry that a few powerful people can prevent us from having the medicine we need. I am so glad the film put together the facts for the world to see. Watching the video also confirmed to me that my cousin is on the right track in the choice she is making.

What makes me angry is that my cousin discovered the lump herself. When she went to have it checked out, her GP totally ignored her concerns. Thank God she was determined to get a proper examination. Many women would have just listened to their doctors. Two doctors and 3 months later, finally someone had the heart to take her seriously and it was discovered that she indeed had breast cancer.

At the age of 41yrs, I asked my GP if I could have my first mammogram. She did everything in her power to convince me that having this test was a waste of time. That's not true! I fired her on the spot.

When I speak to other women my age and read the posts on breast cancer forums, I realize that all that "examine your breast every month" talk is just talk. It's difficult to get doctors to be proactive and take an interest in our health. They are typically arrogant and rude. Obviously, the medical system is designed to keep the general public dumb and sick.

Also, I'm not a fan of drug companies. I'm just tired of reading about
pharmaceutical researchers faking research. Just recently, Dr. Scott Reuben, a former member of Pfizer's speakers' bureau, has agreed to plead guilty to faking dozens of research studies that were published in medical journals. It's being called the largest research fraud in medical history.

Reuben was considered a prolific and influential researcher in pain management, and his purported findings altered the way millions of patients are treated for pain during and after orthopedic surgeries but it was all a fraud some of the drugs were that of Celebrex and Lyrica that were frauds and can be actually dangerous.


Personally, I have had MS for the past 15 years. I was put on two interferon medications, Avonex and Rebif. They nearly crippled me. I did my own research and found that my neuro was not that up to date on ALL the "research" that's out there. To make a long story short, I got help from a naturopath who specializes in MS and I did my own research, looking for science based 'natural' treaments that agree with the human body.

Four months later, my health was restored. I have never felt or looked better. If I simply listened to my neuro, like a nice passive patient, I probably would be stuck in a wheelchair.

Other countries around the world use both alternative and complementry medicines to help heal the sick. That's including cancer patients. But, western medicine insists on living in the dark ages. Sales from drugs is more important than human life, it seems.

The FDA depends heavily on funding from the pharmaceutical industry. Also, 80% of research is done by drug companies. That's why drug companies get away with selling drugs that have a shopping list of side efftects.

So, why am I posting this? What's my motive? Reading this thread, I can see that these guys don't really understand how the cancer buisinss operates. Also, I think a certain demographic of people honestly believe that the doctors, the FDA and Big Pharma are the good guys.  Anything that questions the drug lord's shady ways or a perspective that is not aligned with "modern" medicine is automatically labelled spam or quackery. Where did this brain washing come from? My guess is that's what their doctors' told them.  

Doctors say misleading things to ensure that patients don't think for themselves. I'll never for what my doctor said about vitamin D. "It doesn't matter what your levels. I don't why you want to know. Vitamin D is just a fad. In a few months the hype will be over."

Since cancer, heart disease, autoimmune disorders and diabetes are ridiculously profitable, the FDA specifically hunts down companies and doctors that offer natural ways to stop disease. No supplements is allowed to make these claims. Meanwhile,  several studies have proven that vitamin D prevents, among others, osteoporosis, depression, multiple sclerosis, prostate cancer, breast cancer, and even effects diabetes.

Vitamin D is perhaps the single most underrated nutrient in the world of nutrition. That's probably because it's free: your body makes it when sunlight touches your skin. Drug companies can't sell you sunlight, so there's no promotion of its health benefits. So the average Joe and Jane doesn't know how important it is to maintain high levels of vitamin D in their system. My doctor certainly never told me. Where are those 'awareness campaigns'. The Foundations are only interested in fundraising. With all that money raised, let's be real, the cure for cancer should have been found by now.

Furthermore, modern doctors, medical researchers, drug company executives, and FDA bureaucrats think they've conquered nature. When doctors train for four years, they basically study some anatomy and physiology and then, for sure, drugs, surgery, radiation, and chemotherapy. They learn how to diagnose diseases and think of them all as being chemical disorders that can be treated through pharmacology and prescription drugs. The drug companies practically run many of these medical schools. So, what passes as organized or scientific medicine is actually whatever they say it is. Who do you think runs these watch dog sites? Anyone who uses those sites to make decisions is missing out on tons of information that could possibly extend and /or improve their life.

Certainly, those of living with life theatening diseases, have to be cautious. Do your research. Everyone is trying to make money off of us. Therefore,  I believe we should have the right to ask questions and question authority, while respecting other's choices and opinions.

Post Edited (KathyWithMS) : 6/14/2011 3:48:34 PM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 6/14/2011 6:05 PM (GMT -6)   
Ok, Kathy, thanks for the explanation, but why are you specifically posting to our forum of middle aged and older men who may have Prostate cancer? We have had battles galore here over Vit. D, juices, extracts, etc, and have found the subject to be very divisive for the members. Again, why are you spending so much time posting to us, what is your ultimate goal? Are you wanting to move everyone away from their doctors to alternative doctors, treatments and medicines? Do you have a secret formula that you haven't revealed yet? I hate to sound rude, but this subject has been the source of countless arguments and fights here in the past and is so controversial that it is usually stopped as soon as the battles begin. Given this subject, we are really gun shy about it. I appreciate your story, but what does the whole of it contribute to Prostate Cancer Forum in a positive way, given our history with this subject? Some of your statements run along the line of paranoia and conspiracy, which we have had plenty of also, to this very day, so I wonder why we would need anymore of the same?

If the sum total of your warnings are in your summary you just shared, then we thank you for the warnings, but conspiracy and paranoia is not a healthy subject for us. I thank your for your contribution but ask that you do not continue a discussion involving conspiracy theories, paranoia, and such. We have enough of that here now and sure don't need any more... smilewinkgrin As it is, I expect that the flames will start shortly.
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

KathyWithMS
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/14/2011 7:23 PM (GMT -6)   
As the men expressed, prostate cancer is not talked about in the media at all. Most men don't even bother to go for annual check ups and they are afraid of the digital exam.

Like I said, my cousin's husband died of prostate cancer. His two daughters will not have their dad to guide them through life. All they have are photograph and videos. Looking back, my cousin can see how her husbsnd was a little misguided by certain doctors. In other words, they took a little too much advantage of his ignorance. I won't go into details about that in a public forum.

Also, I had the "opportunity" to work with a very well known cancer organization. The agency I was working with at the time proposed several campaigns to target the generation x market. But strangely, this organization insisted on using the "upper middle class caucasian bald old man" image and had no desire to reach out to younger men, working class men or ethnic men. There were other things that made no sense at all.
 
So, given all my personal and professional experiences, prostate cancer is a disease that concerns me. Many men are going suffer needlessly because they aren't given any information about the subject.

To answer your other question, no I don't want everybody to turn away from conventional medicine. I think people should be aware that there are alternative and complementary medicines like, the Antineoplastons treatment,  that could actually assist them.  I would like to believe that conventional medicine is the only answer, but we all know that's false. Most people--I think over 70% of patients--use supplements for that reason.

Also, I can see how this subject can cause heated arguments between those who favor conventional medicine and those who may not. To keep both camps from battling, I suggest that perhaps there should be a seperate area on your site, where those who want to discuss alternative/complementary medicines can do so without fear of being judged for thinking outside the medicine cabinet. That's how some of the others forums do it. It seems to work.

Let's face it. It is unrealistic to think the two sides will ever agree. Still, neither should be denied the right to share and discuss what is important to them. Until then, I think people who don't feel welcomed will jump to other health sites to meet their needs and help them "heal well".

That's it from me.

Best,

Kathy

Post Edited (KathyWithMS) : 6/14/2011 7:44:26 PM (GMT-6)


tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2840
   Posted 6/14/2011 7:31 PM (GMT -6)   
I agree with those who feel we are not angry enough to get the media coverage and government dollars/ support to help those with Prostate Cancer.

Another aspect is the fact that too many men are afraid of what is below the belt - the penis, the prostate, testicles, rectum.... hence the unfortunate number of men who do not get the proper diagnosis and treatment for prostate cancer, testicle cancer, colon cancer along with ED issues and incontinence...

-one of the key phrases I have used when promoting prostate cancer awareness at my fundraisers was " when was the last time your doctor has his gloved finger up your butt?"
-with that the man would blush - and often the wife would giggle - that would open up the discussion and (if lucky) the man would take one of the 1-in-6 pamphlets - or often, the wife would take the pamphlet - "I'll get him to read it tonight" was a common response...
or -the man would stand proud to say the date of his last prostate exam - and his family's health history, etc...

- a man's penis can be viewed as a weapon (rape, domestic violence ..) while women's breasts are pretty and make a pretty package but are not attached to a particular sexual function - when was the last time you were scared by a pair of boobs?

-the prostate / penis / rectum - can be attached to sexual function - thus scary territory for many men -
- sexual modesty is the root of why prostate cancer awareness is floundering -
-accepting the fact that humans are SEXUAL can be the first step to their personal health...

-hugs to one and all,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

Post Edited (tatt2man) : 6/15/2011 3:50:39 AM (GMT-6)


Snowbound
Regular Member


Date Joined Jun 2011
Total Posts : 224
   Posted 6/15/2011 9:32 AM (GMT -6)   
Kathy,
 
You are right that there will always strong disagreements on these types of issues. I frequent a Type 1 Diabetes forum and the anti vaccine arguments are always very emotional and divisive. You never see anyone changing their opinion based on these discussions. 
 
For me it isn't an issue between conventional and alternative but rather between proven and unproven treatments. For serious medical issues I want to see the scientific studies on the treatments. I have no problem with the idea of alternative treatments that are proven to work. In the case of an ailment like pollen allergies or colds I'm willing to gamvle and try different things to see what works. (I've had varying degrees of success, finding some homeopathic treatments that work for me and others that don't.)
 
From what I've read I fully believe Dr Burzynski is a fraud and is just in it for the money. I don't expect to convince you and you definetly won't change my minds so at best we'll agree to disagree. Here's a sample of articles about his treatment;
 
 
http://www.houstonpress.com/2009-01-01/news/cancer-doctor-stanislaw-burzynski-sees-himself-as-a-crusading-researcher-not-a-quack/6/
Glen, age 50
PSA 5.43 at June 2010 physical
Biopsy: 8 of 12 samples positive, 75% in 1 core. Gleason 7
Radical Prostatectomy 12/3/2010
DIC complications during surgery
Pathology: 3.5cm tumour, no capsular invasion, lymph nodes negative
Catheter removed 12/26/2011
PSA currently undetectable!

KathyWithMS
New Member


Date Joined Jun 2011
Total Posts : 11
   Posted 6/16/2011 1:52 PM (GMT -6)   
Snowboard,

The FDA permits cancer patients to now be treated using Antineoplastons in FDA approved clinical trails. Do your research and you'll see for yourself.  It took a long time for that to happen.
 
Kathy

Post Edited (KathyWithMS) : 6/19/2011 8:09:34 AM (GMT-6)

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