Misconceptions About PC (name changed)

Because we are men, and women are more important.
Actually, they are more vocal about it and so they get more attention.
If we were more vocal, we would be called a bunch of whiners, sissies, over-dramatic.

Oh dear sister/mom/grandmother has cancer, lets rally around her.
Dad has cancer, just walk it off.

I am trying very hard to hold my tongue about how men have it so much worse.

Perhaps with this ONE particular cancer. But in general, in today's society? Birth control? Etc, etc, etc.

I do agree SOME cancers get way too much attention, like breast cancer. Easily treated if spotted early, and gets an inordinate amount of funding due to those ridiculous pink awareness drives. I've lost people to lots of other cancers. I wish all the cancer initiatives could band together and focus more on causation/prevention and perhaps less on treatment. Distribute research funds according to cancer incidence rates. Prostrate cancer might move up in "awareness", breast cancer down, I have no idea.

Anyway, sorry, I just can't stand by without saying a little something. We *all* deserve better. Peace.

Fran, the story you're telling has been chased around this forum off and on for years. And it's all true, and all too typical. How about this one: "If you're going to have cancer, then PC is the one to have". Or, even worse, "No one dies of PC anymore". BS.

There are a lot of reasons for it. The solution is for those of us who do have it, or have in their family history, to keep telling our friends to keep an eye out for it. Just last week, a man I know--who is a few years older than me--told me that he's going to get treated for BPH by laser--and I asked him whether he has had a biopsy to confirm that he doesn't have PC too. He told me that yes he had been checked--primarily because I said something in a group we were both in a while back. So, a small success.

I think that's the only way it will get better: if men take every opportunity to share with other men about PC. In the settings where you are with other men. Some will listen.

When I was diagnosed, I was working at an industrial facility (a coal burning power station in Illinois). After diagnosis, another guy there and I added up just how many men from that workplace had been treated for PC. Out of about 200 employees, we counted up at least 10-12 who had been treated...and one who died. And, if you looked at the population who were over 50, it was more like 10-12 out of 100. Pretty close to the 1 in 7.

Rant away, Fran. We have all done it, on this same topic.

Franpro

I don't think it is about lies and deceit and more about extreme confusion.
I will list a few of the problems physicians have in interpreting how to address the diagnosis and treatment of prostate cancer:
1. Men with prostate cancer having high Gleason scores ( 4+4 and higher) have a potentially deadly disease. Treatment is mandatory with these men. Fortunately, treatment has improved and long-term remissions are increasing dramatically.
2. Men with low risk and intermediate risk prostate cancer ( 3+3 and 3+4 specifically)tend to have tumors that have much lower risks of being fatal. A New England Journal of Medicine article in 2016 revealed that it required 27 men receiving surgery to benefit 1 in preventing localized cancers from metastasizing. It took 33 men receiving radiation to benefit 1 in preventing metastasis. 10 year outcomes were exceptionally high in all groups that received treatments including active surveillance.
What makes the above so problematic is that the vast majority receiving treatment for low and intermediate risk treatment receive no benefit from treatment but endure side effects that are life changing. But how about the 1 that had their life saved?!! Since I watched my father die of prostate cancer, even knowing these stats, I would have still opted for treatment despite the side effects I have experienced with radiation. We have several men on this site who had low and intermediate disease that have died from this disease. Rare but not unheard of. So far, there are no markers or predictors that can identify the men that would have benefited from treatment with lower risk prostate cancer. The Decipher Test has improved screening but still is not ideal.
3. The biopsies that are taken may not be accurate. How many men that have been diagnosed with low or intermediate risk cancers in reality have higher risk disease? We have read that as many as 1 in 3 have their disease upgraded with further pathology readings or expanded biopsies.
We have also learned that our age correlates with the presence of prostate cancer. It you are 50 your risk of having prostate cancer is 50%, if you are 60, your risk is 60%...etc. If you start looking for cancer, you will probably find it. Once it is found, the risk of over treatment increases dramatically.
4. We have expert panels in the past making recommendations to decrease PSA screenings. This has really confused many "front-line" physicians. I understand the reasons....the need to decrease unwarranted treatments in low risk disease (see #2 and 3). However, that has potentially increased the risk of high risk disease going undiagnosed. It seems to me that educating physicians and patients is a better long-term plan. The unfortunate truth, however, is that many physicians do not "keep up." It is important to know the caliber of physician you have treating you.
Also, biopsy problems may be increasing due to antibiotic-resistant bacteria.

FranPro, I know where you coming from. I have shared your anger. Watching my dad die an awful death and experiencing cancer myself, has changed my life forever.
Finally, after working with physicians for over 40 years, I can say that they are generally well-meaning and not deceitful by nature.

Paul

All things work for good....

The nature of the fabric...and that ain't gonna change...this side of the river..." the beautiful...the beautiful ri ev ev ..er...love that song from all the old westerns I grew up with...there is another song they used to sing at funerals in those westerns...but it escapes me

spouse21 said...
Blaming women for being more proactive and responsible about their health care is insulting. My guess is that there are more females on this board advocating, researching, hand holding, accompanying their fathers, husbands, and partners to their appointments than there are men doing the same for their mother, wives, and female partners with breast cancer. Just look around the waiting rooms at any cancer center.

Interesting info about Uro's ceding territory to onco's. But who's blaming women? There's no doubt that women in general are more attentive to health concerns. Their participation in support forums is apparent. On FB it's probably by a factor of three or four to one.

But if there is a gripe about it, it is that this support often manifests in the exclusion of men. I have searched for online support for men on long term ADT. But every group on the subject of Lupron (that I could find anyway) were entirely female led 'hate' groups about Lupron being used off label for fibroids or endo. Nothing for men, so I started my own.

And there are numerous 'chemo' groups that where women outnumber men ten to one. If you are on FB just look up the 'chemotherapy support group'. Their cover photo is five women playing in the surf. No men. Do men never get chemo? Granted, due to nature's design, the prostate has little blood flow, so chemo is generally only effective for distant mets. But men DO get other cancers. In fact, for some types of cancer men predominate. And not just because of lifestyle.

And let's not forget that approximately two percent of breast cancer victims are male. In a recent late night TV drama, one of the male characters had breast cancer, and he was constantly chided for it, and had to repeatedly defend that it is a "real cancer".

So who here is blaming women for the fact that prostate cancer tends to be so readily dismissed by both the medical community and the public in general? No offense to you personally. But many of us are sick of having pink ribbons shoved down our throats, while most people, including many who have had PCa, do not even know what the ribbon color is... and that the same color is also shared by a nmber of other diseases, so who knows what it means?

I'm not so sure men are as lame brained about this issue as we'd like to think. Prostate cancer isn't a secret disease that only the educated knows about.

My GP told me for years...."Nothing to worry about". It wasn't until I began having flow problems that I insisted on a biopsy. It wasn't 'till then that he said....."Don't be surprised if there's a few cancer cells down there".

Point being, I had the right guy. He told me what I wanted to hear.

Dancin' with the devil sometimes means dancing with your own shadow.

Getting the "pink ribbon shoved down our throats" is exactly why there is so much money raised for breast cancer research. Instead of dissing it, get a ribbon! Have PCa fundraisers where men hang out and work out. Women have been making this kind of effort for for decades. This is why breast cancer awareness, fundraising, publicity, and research have been so far ahead of efforts on the PCa side--those plus the stubbornness of urologists in hanging on to a specialty that belonged in the hands of oncologists for advanced cases.

I keep seeing a lot of self-flogging by men who put off dealing with PC -- despite some PSA warning signs -- for years, especially when/if the doctor says "let's keep an eye on it." We do this for years... until we can't.

But that's because there is no smoking gun. No symptoms. The PSA is only a great test AFTER surgery.

For women, the nature of breast cancer is different. Usually, they either find a lump or a mammogram finds something very suspicious. So, yes, there is no excuse for putting it off. It's just the nature of the cancer beast.

Mel

RobLee said...

It's not breast cancer versus prostate cancer.

Yup, and it's unfair that money and publicity all seem to address breast cancer, when there are MORE THAN 100 types of cancer! I have actually quit wearing pink, of any shade, for just this reason, and contribute only to the American Cancer Society since it funds ALL kinds of cancer research.

I'm really sorry that you guys can't seem to talk about PC among yourselves. Change the world, talk to someone about it! I've talked to 3-4 of my male friends of like age, but could never mention it to my Dad (90's) or brother. If each of us pledged to talk to one person a month.... any get each of them to talk to one per month....we could start a revolution!

Sorry, but for me it's not a matter of men being unwilling to talk about PC with other men or failing to seek out other men to tell about PCa. That's what forums like this are for. I'm willing to share experience and advice if the topic comes up, but otherwise I don't see myself or want to be seen by others in terms of my prostate cancer or for that matter melanoma, broken ribs or any other ailment or injury I happen to have had. We are all many things, with many interests, many talents, many opinions. Cancer is just one small part of who we are. I hope in years ahead as my remaining treatment options become fewer and the inevitable looms closer, I will still prefer to talk with friends about all the other things in our lives.

<<<"My point is we, men, have been lead to believe that PROSTATE CANCER is no big deal">>>, which in my observations is what way to many men WANT to believe. How many guys show up here, panicked, ill informed and looking for some easy, nonexistent "cure".

I don't think it's lies and deception, but a fair amount of urological medical incompetence is a contributing factor, as is macho, head in the sand, attitudes.

So rather than blame someone else, what are you gonna do about it?