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New Guidelines

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Okay everyone, did you see the new guidelines for testing? They are quite an eye opener. I just don't get it. They want guys to wait until they are 50 to have the test done unless they are having symptoms. Afraid that the screening will do more harm than good. They are concerned about the risks of incontinence and impotence.

HHHHMMM..... Lets see, I am 47, had no symptoms, a very slightly elevated PSA (2.9) and 35% of my gland was affected. Because of the early stage I was able to have Robotic Surgery. Now if I had waited until my physical at age 50, where would I be? I don't even want to think about it.

Some of us caught it very early, some of us not until much later. I am afraid that in 10 years we will be seeing way too many brothers who did not get treated early enough. I hope and pray I am wrong.

I feel so fortunate that my doctors were agressive in testing and I want every guy to be able to have that same opportunity. I really feel this is a step backwards.

God Bless,
Joe

lewvino's picture
lewvino
Posts: 1007
Joined: May 2009

I agree with you Joe. I knew I was in a high risk category since my dad had PC but was still a shock to me to find out I had it at age 54. I really feel for the 'younger' guys like you.

Larry

Susiebelle
Posts: 15
Joined: Nov 2009

Gentlemen,

If you would allow a lady to speak, these new guidelines are ridiculous.

My husband was diagnosed at age 56 with PC. He had no symptoms, and it was found by accident. He was diagnosed at Stage IV. We are dealing with the changes to our lives as best we can.

One of the young women that works with my daughter in health care, heard about my husband. She urged her husband to get tested. He isn't out of his 40's yet. But, he spoke to his doctor, got tested, and you know where this is going. He was found to have PC, very early stages thank goodness, and is now considering his options.

Is this where men are headed? Do you have to insist with your doctor that you be tested regardless of your age? I can't see men having to beg to find out if this horrible disease is in their bodies.

PC changes everyone's lives. Not just the one who has the cancer. And it changes everything about your lives. I have been reading all the posts on this forum for quite some time, and finally felt it was time to jump in.

For those of you who found it early, thank goodness. For those of you who may not be able to be tested now until 50, I say it's unfair. A discussion between you and your doctor about what is right for you and when it is right for you should not be limited by some guidlines decided by a panel of professionals.

I could get on my soapbox so easy, so I had best stop.

Good luck to you all.

Susiebelle

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

THIS IS REDICULOUS! I had a dad that had PC and I was stupid enough not to get tested until it slapped me in the face at a state fair with a big sign "FREE PSA TEST". So I was tested basically on my 52 birthday...had a high reading 7.25 ..went to the family doc....he felt nothing in DRE..did another PSA ...elevated again 6.017 refered me to urologist who had longer and better fingers...felt a nodgle...set up a biopsy....3 of 8 postitive 20% 10% and 10% all 3+3 = 6 gleason....multiple opnions...decided on davinci...12/29/09....now on day 65...First full day of no pad...completed full intercourse at lunch today....and first PSA since surgery <0.1 non-detectable! YEah lets all wait until 50...mine almost broke through the capsle in two places both right and left side....GIVE ME A BREAK we need early testing and detection! I am the luckiest man on earth!!!!!

Randy in Indy

Trew
Posts: 892
Joined: Jan 2010

Randy, congratulaitons on the forward progress.

Trew
Posts: 892
Joined: Jan 2010

SusieB, you just make all th enoise you want. My family doc wasn't testing me for PC either, except for the old finger exam. When I insisted he marked it on a lab order and Presto! I too was a T4 with a gleason of 8 and heading for trouble.

I told me two sons to start getting tested ASAP- they are just reaching their 40's now and they need to establish a baseline with both a grandfather and dad PC patients.

Forget Obamacare! scares me to death- give be patients rights- like the right to be tested whenever!

Susiebelle
Posts: 15
Joined: Nov 2009

Thanks Trew. When my husband was finally tested for PSA, it was 1910! That's right, One Thousand Nine Hundred and Ten.

He went in for an MRI because they thought he had a ruptured disc causing all the pain in his legs and lower back. NOT! He had cancer in his entire lymph system, and almost every bone in his body. This Saturday, he has to go in for a brain scan. Some of the symptoms he is displaying make the oncologist think it might have spread to his brain. After all, he had cancer in his skull. He is currently on chemo in an effort to control the pain, and to stop the progression. His cancer is so aggressive that it was growing by leaps and bounds. He tried the Lupron thing. Only the first shot worked, after that, nothing. That's when we went to chemo.

We have been married for 30 years this June. I cannot believe that my husband has this awful disease, and that our lives together will be cut short. Trust me Trew, I make more noise about PC to every man I meet than I think any of them care to hear! But, it's important. And unless you are touched by it, you just don't get how important it is.

SB

Trew
Posts: 892
Joined: Jan 2010

Dear SusieB and Hubby, I am on eligard- my emotions are all messed up and I am crying as I finish your post above.

I would like to say more but I had such a crash and burn day emotionally yesterday I think I will just stop now. I am so sorry to hear aobut your husband.

I will be praying for you.
-Trew

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

No one should have to endure what you have. I hope you get a reward in the end for all the BS you have had to deal with through the Eligard. It's just not right or fair!

Randy in indy

Trew
Posts: 892
Joined: Jan 2010

Please, don't interupt me right now, I am into the middle of a real good hot flash!!

I just love those little beads of sweat that run down the face.....

Weeeee!

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Trew, I'm so sorry you are going through all this. God bless you and I will be praying for you. Maria

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

Susie, I am so sorry to hear about your husband. You will be in my thoughts and prayers. I am very vocal about this disease. I feel that at my age, the Lord gave me this for a reason. I tell every guy I know to make sure they start getting tested early, and every woman I know to make sure their spouse/boyfriend are getting tested.

Trew, I agree that if this is what National Healthcare is going to bring to us, it is not a good thing (okay so I have a gift for understatement).

If anything we need to be more proactive with this disease, if it is caught early enough, it is potentially curable.

Take care all,

Joe

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

I am so sorry for what you are dealing with. Please know that you both will be in my prayers.

fathersson's picture
fathersson
Posts: 121
Joined: Nov 2009

All,

For me, the testing went beyond what three Drs recommended. According to all 3, current protocol for low volume/gleason cancer such as mine does not call for a CT or bone scan. Well, due to my nurse sisters and nieces insistance, both were eventually ordered for me. Unfortunately/fortunately a superficial bladder tumor was discovered and subsequently removed. My surgeon told me I was very lucky to find it as it was in a very early stage and that down the road it could have easily become dangerous. Another relative who is a research oncology exec at a major pharmaceutical company tells me that her group highly recommends bone and CT scans for any grade PC so as to check for any spreading and so that baseline scans are available if needed in the future.

In my case, the additonal testing likely saved my life. So I am fortunate.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

My hubby was diagnosed 2 weeks ago tomorrow, and our first urologist didn't want to order the CT and bone scans. Thankfully, second opinion urologist did. He had the bone scan yesterday and will get CT next week. We await the results, I'm not worried, but it will be nice to have (hopefully) piece of mind. I think any man diagnosed should have those tests. It is hard to truly determine how aggressive the cancer is, and why not use our modern medical tools to determine if there are more problems? I'm just so glad that I kept on hubby to continue getting his psa checked when it started to rise a bit. Though it was never THAT abnormal, these cancers do not all put off large amounts of PSA.
As far as the "new" guidelines go, next thing these major insurers (Anthem, Cigna, Humana and the like) will stop paying for the PSA test unless you are 50. Just wait. Profits mean more to these vultures than anything...paying their CEO's bonuses and the stockholders dividends are more important than human lives.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

My impression is that " The Profession" has decided to de-emphasize prolific early testing among masses of young men in an attempt to keep them from ruining their quality of life over unfounded fears of an immediate death. Surgeons and people of ethics are recoiling from the debauch and ensuing morbidity of past golden standard practices in OR s around the world . Truly these historical PC treatments have been an abomination !

Sounds like everyone is echoing the need for Health-care reform which will play a big role in our survival .

As far as I have read, men of all ages can always "request", onus on them , the PSA test.

All of these cares begs for a spiritual and humane context of reflection.

txbarton's picture
txbarton
Posts: 85
Joined: Aug 2009

My opinion is that "The Profession" is insurance executives and politicians who are in their back pocket.

Medical professionals are in favor of testing. Those I know are not financially driven.

VB

hopeful and opt...
Posts: 1360
Joined: Apr 2009

guidelines.........was it the american urological association.

I was surprised that it was changed to 50 when there are men in their forties who have contracted this disease, and in many cases aggressive.

I would thing that it would be a good idea to have a baseline test starting , say at age 35 or 40 especially for those who have a family history, or groups of individuals who are more likely to contract the disease, for example blacks in the united states.

I agree with "active surveillance" above that there are many younger men who ruin their qualitiy of life by seeking out unnecessary aggressive treatment, however I still believe that its important to have the medical information with hopes that the correct treatment option will be followed.

Ira

shane59's picture
shane59
Posts: 86
Joined: Jan 2010

Lucky here in Australia they are now saying test at 40 years i just found out
just 6 months before my 50th and made my 2 boys and sun inlaw go for the test lucky they were all clear at present . They only got mine cause I insisted somthing was not right 3 months later I tell everyone I know or meet they may think I am crazy I dont care .If I can save just one then its all worth it . hope your journey is PSA free keep up the good work shane

jminnj's picture
jminnj
Posts: 129
Joined: Nov 2009

I believe that this is a lead in to the health care reform. I think the medical community is seeing that they may need to change their guidelines, not for the benefit of the patient, but rather, for where they think they are going to need to be if/when a health care reform bill is passed.

Parts of the current proposal do not allow for annual testing but rather testing every other year or longer. That scares me for everyone, men and women alike. The other piece that frightens me a little is that one of the proposals out there that would include the "public option" would exclude "pre-existing conditions". Guess where that puts us?

Do we need better healthcare in this country? Yes, without a doubt. I am just not sure that any of the proposals (from either side of the fence) are going to work. They really need to work together, not against each other. (sorry i will get off that soap box now)

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I think you may be onto something...if it's true it's a shame and very sad that the reform will then certainly end in a huge disadvantage to the patient...very sad indeed.

Trew
Posts: 892
Joined: Jan 2010

And cancer patients need just about every advantage they can get. I see little room for cutting on expenses with cancer. It is amazing what some cancer patients have been through and the cost of their treatment. Is it worth it? Such a question should not even be part of any health debate. somehow I like to think that every cancer patient is helping those who may get the disease in the future.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

The current package will not allow H.Ins.Co.s to "exclude" us for pre-existing conditions such as PC.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

Just in:

The ACS recommends that men age 50 with no symptoms of prostate cancer who are in relatively good health should be active in making an informed decision with their physician about prostate screening.

Men at high risk – African-Americans and men with a father, brother or son diagnosed with prostate cancer before age 65 – should begin that informed-decision talk earlier, at age 45. Those at higher risk, such as men with multiple family members affected by the disease before age 65, should start talking about screening at age 40.

For men unable to make a decision about screening after these conversations, the ACS recommends a doctor decide whether or not to screen based on knowledge of a patient’s health preferences and values. After a decision to screen is made, the new guidelines make the digital rectal exam portion of the testing optional, and they say it is acceptable to extend the period between screenings for men with low PSA levels.

Partridge says there are limits to both PSA and the digital-exam method, and even when these tests detect cancer, physicians often can’t tell how dangerous the cancer is without further tests or medical procedures. Some prostate cancers grow slowly and never cause any problems; others may grow aggressively.

Physicians and cancer-prevention experts note the urgent need for better ways to detect and treat early-stage prostate cancer, particularly the need to distinguish between cancers that do not require treatment and those that are actively growing. The American Urological Association, for example, insists that shared decision-making should involve personal data that is more in-depth than age, such as ethnicity, family history, previous biopsy characteristics and other factors.

Until new screening tools are available, it is crucial for care providers and cancer-prevention program directors give men the opportunity to decide whether they wish to pursue early detection for this disease.

About the UAB Comprehensive Cancer Center

The UAB Comprehensive Cancer Center is among the 40 cancer centers in the nation to meet the stringent criteria for the National Cancer Institute’s comprehensive designation. The center is a leader in groundbreaking research, reducing cancer disparities and leading-edge patient care.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

To be honest, I am surprised by these guidelines, maybe because I have the disease and now I am aware of many who have the disease, I would have hoped that the guidelines would be more stringent, not less.

Tell me what dies UAB stand for.........does this center concentrate on active surveillance protocols.

I am doing the active surveillance protocol at ucla. I've heard that uc san francisco does a very good job.........I'm sure that there are other centers that are recognized as leaders for active surveillance protocol...........however, I don't know which centers are the leaders.......I wonder, do you(or other posters) have any knowledge about this.

Thanks,
Ira

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

What they are using now is three consecutive PSA rises in a row (not sure what value assigned) and/or DRE with it. They want and need DNA biomarkers that define the cancer as agressive or indolent so the patient will know more accurately when/how to act with treatment.
They currently use more biopsies in their protocol (ugh). Color Doplar ultrasound imaging is on the horizon to establish status of our cancers , that should be well received.
So much seems in the development stage but watch the net for news every day on active surveillance.

I believe the UAB was Urology Ass. Birmingham but would have to look back.

hopeful and opt...
Posts: 1360
Joined: Apr 2009

I notice that different hospitals depending on resources, have different protocols for active surveillance.

Rising PSA....I've also read about looking at rate for doubling of PSA not to be more than at a three year rate.

The Color Doppler ultrasound is very well received by many here in CA. Thre is a radiologist, duke bahn who does this test, who is considered to be an expert.........basically there is a print out of the biopsy in color, and many swear by this test...they go to ventura to see this doc, and he manages these people(surprising since he is a radiologist)....he is very successful....it is said that this test in the hands of an experienced radiologist can identify "lesions" probable tumors, smaller than 0.5cc.

I spoke to my doctor about getting this test........he tells me, basically that the MRI with the Spectroscopy is preferred. Also that the basic biopsy is preferred....he told me that at ucla , they have the equipment for the color doppler , but they don't use it very often, on occassions when one is not able have an MRI.......he does not think much of the test.......to be honest he went into medical technology which was beyond me to explain this......in a separate meeting I spoke with the Fellow, who told me the same.

active surveillance's picture
active surveillance
Posts: 16
Joined: Mar 2010

Ira, thanks for all of your good input on all of this.
Check out "Cancer Centers of America" website , mainly located in Tulsa OKLA.
They pay for your flight there for the consult and treatment.
Also have programs for lodging that are inexpensive.

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I guess we do not need health care reform because people should be fired if they have cancer, be unable to afford Cobra, and be driven to bankruptcy. It happened to me and it can happen to you. Vote for the status quo and keep quiet. God knows you shouldn't have to donate to the welfare of another human being. REALLY?

Dan33605
Posts: 1
Joined: Oct 2006

I was diagnosed with stage 4 PC at age 48 , If I had followed the current American Cancer Society guidelines I would not be here ,I geuss that makes me expendable . I have been on Hormone therapy four 4 years now , thankfully .
almost 30,000 Men die every year in this country from Prostate Cancer .
I have not seen anything the American Cancer Society has ever done for Prostate Cancer and I will not be donating any more.

bdhilton
Posts: 759
Joined: Jan 2010

I am not only part of a study at Northwestern (actually 4) now but my father’s medical records along with my brother are part of these studies now… Northwestern is beginning to think that the same DNA issue we have also causes Breast Cancer…. With a father that had prostate cancer, a brother 4 years ago with a PSA of over 400 and 4 sons (28-16) test test test and research research research…

hopeful and opt...
Posts: 1360
Joined: Apr 2009

There had been a study done that linked prostate and breast cancer in jewish families.

I am not surprised.........my 91 year old mother , this year was diagnosed and treated for breast cancer.

Ira

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