Just beginning this jounrey

Hi Burgie,

it must be devastating news for you at just 47,you will have a bone  scan and a scan for spread to your lymphs.

Hope fully all will be clear for you,of course all this will seem surreal for you as it did for me last year.Once you have had the tests a strategy will be put to you to deal with it,a plan of action will be surgery,radiotherapy,and possibly hormone therapy i am on this treatment at the moment.You may have all three treatments if need be,but whatever your team will look after you.Yes when you read about it,it can seem mind boggling but you will have regular checks for your psa level that should come down.We all get concerned about our situation,but i am sure you will be fine once treatment gets underway.Many on here if not all have felt like you and reading this site will help you.

Best wihes to you kluff

Hi again Burgie,

just to let you know that there are other treatments besides the 3 i wrote about,but i put those because they are the most common treatments.

I would be lying if i said the treatments are a walk in the park,well they have not been for me but some men have very few effects so you could be o/k with them,i had 37 radiotherapy sessions and am on lupron.

Fingers crossed for you kluff.

SPT said:

take your time
Very sorry to hear about your diagnosis. Mine came when I was 51, ten years ago. It sucks.

The thing about "If you're going to get cancer, prostate is the one to get" is because prostate cancer is SLOW. More men die with it than of it. The problem with getting a diagnosis at 46 or 51 is that 17 years of life still sounds like you are getting cheated.

But you can use this to your advantage. You mentioned that it has been only 72 hours. That means you are still in shock, going through the process of anger, denial, grief, despair, acceptance, etc. This isn't the right time to make major life-altering decisions.

Do yourself a favor and take your time. When I found that my cancer progressed in March, I set a deadline 12 weeks later to decide on treatment. I decided in 11 weeks. In hindsight I wish I had taken longer.

Don't let anyone bully you into quick decisions. Any of the treatments will forever alter your life, and mostly in ways you won't like. You need a calm, clear mind and plenty of time to learn, think, talk to people you trust.

Don't just get a second opinion, get a third or fourth. Typically young men like you will be offered the choice of surgery, radiation, or implanted seeds. Most of those come with Androgen Deprivation Therapy (AST) for 2 years. Read some of my posts on ADT before you accept that sentence.

If you ask a urologist, they are most likely to recommend surgery. A radiation oncologist tends to prefer radiation. Oncologists like chemo and ADT.

Consider alternative medicine as well. It's not going to cure you cancer, nothing is. You will spend the rest of your life living with the fact that you have cancer. If things go well you will die at a ripe old age of something other than prostate cancer. That's as close to winning as this game allows.

But unlike conventional medicine, alternative treatments will make you feel better, preserve your health, and many will make the conventional treatments work better. Don't let conventional docs bully you about this. They hate competition, and alternative medicine is competitive medicine.

Check out all your options, talk to many different docs and alternative docs, take your time and think it over. Give yourself at least 3 months to make a decision. That will go a long way towards reducing the almost inevitable regret you will feel when the treatments degrade your quality of life. That's a lot easier to take if you go in well informed and eyes wide open.

Good luck to you, and to us all.

Burgie,

I find a little bit of what SPT wrote to you to be most likely incorrect. It is correct that usually PCa is indolent or slow-moving. But not always.  A Gleason of 8 or 9 is a NOT INDOLENT presentation.  A man who presents at 65 with Gleason of 6 or 7 (the most common sort of case here at the Board) and a 46 y/o with a Gleason of 9 have nothing in common, except the name of the disease.  A cousin of mine presented in his late 40s about 5 years ago, astronomical PSA and Gleason. He went to MD Anderson, as good as it gets.  But it was not enough....  Men "die with PCa, not from it."  Well, except when they die FROM it, which happens 26,000 times a year in the US.

I do agree with the following: do not panic, take a bit of time and see several doctors. But leisurely, in your case, is an ill-advised pace.

Surgery for you is extremely unlikely and probably also ill-advised, unless for purposes of what is termed "debulking."  Radiation and Hormonal Therapies (HT) have a strong clinical probability of being your treatment future.  Some of the writers here have survived extreme cases of Stage IV disease and biopsies that initially seemed worst-case.

Proceed systematically and get to appointments at the first opportunities.  I have seen three men die of PCa: Ugly.  For them, "usual" was meaningless.

max

http://www.cancer.net/cancer-types/prostate-cancer/statistics

SPT said:

not what I wrote

I wrote " More men die with it than of it."  NOT Men "die with PCa, not from it."  There is a lot of difference in those two phrases.

I don't mind disagrement, in fact I welcome it.  But quote me accurately or don't use your scare quotes.  It is dishonest and we don't need that.

SPT,

Actually, I was not quoting you at all, but I can see the ambiguity. I was repeating a hackneyed statement that every PCa patient in history has had repeated to them a thousand times, that's all.  It comes in a variety of rendetions; I declined to use yours. And what I quoted contained no quantifier. Since diagnosed in 2014, every oncologist, urologist, and urology nurse my wife and I have ever met begain their introduction with,  "Men die with prostate cancer, not from it."  I taught formal logic in college for years, and an irony is that, taken formally and literally, my assertion is more optimistic than yours. To assert that "men die with PCa, no from it", implies, logically, that NO MEN ever die of PCa.  "More men...etc," conversely, logically asserts that some men do, whether a great many, or a few.  Ergo, how my statement could confer fear is not immediatley obvious.

What my post also absolutely did not contain was any trace of dishonesty.   After over 2,000 submission here over the years, except for you, no one has ever suggested that I was "dishonest."  But I have on my Big Boy pants, and take no offense, believe me.

Hopefully this thread will now return to being about Burgie..., and him receiving sound insights.

max

Max Former Hodgkins Stage 3 said:

Certainly

SPT,

Actually, I was not quoting you at all, but I can see the ambiguity. I was repeating a hackneyed statement that every PCa patient in history has had repeated to them a thousand times, that's all.  It comes in a variety of rendetions; I declined to use yours. And what I quoted contained no quantifier. Since diagnosed in 2014, every oncologist, urologist, and urology nurse my wife and I have ever met begain their introduction with,  "Men die with prostate cancer, not from it."  I taught formal logic in college for years, and an irony is that, taken formally and literally, my assertion is more optimistic than yours. To assert that "men die with PCa, no from it", implies, logically, that NO MEN ever die of PCa.  "More men...etc," conversely, logically asserts that some men do, whether a great many, or a few.  Ergo, how my statement could confer fear is not immediatley obvious.

What my post also absolutely did not contain was any trace of dishonesty.   After over 2,000 submission here over the years, except for you, no one has ever suggested that I was "dishonest."  But I have on my Big Boy pants, and take no offense, believe me.

Hopefully this thread will now return to being about Burgie..., and him receiving sound insights.

max

I apologize for mis-interpreting your statement.  The words were so similar that I interpreted them as a mis-quotation.  I'm sorry for the error.

Agreed, let's return this to a discussion of Burgie.

Hi,

You will need to gather all the info you can with a score of 8+9 to determine what type of treatment you need.  Once you meet with both your urologist & oncologist they can give you the treament options available.  The doctors might try and push you towards their specialty but it's your body, your decision.  Hope & pray it's within your prostate and has not spread, but even it it has spread there are still treaments that can help control the Pca.  Good luck, if you need opinions, there are plenty available on this forum, most people that respond have been there, done that, so it's a good point of reference.

Dave 3+4

Burgie said:

Hello All,

Hello All,

Thank you very much for all your responses as I find each of them very helpful.  I had not returned to this site since I wrote my questions so it was great to read from my new friends as to what to expect.  Well as a few of you had written I did finally have my bone scan & pelvic CT.  A bit surreal knowing what they are looking for and where......everywhere !  I was able to have my first visit with Med Onc .  I am fortunate to live near Boston so my 2nd opinon appointment was actually my first visit  at Dana Faber as Mass General has a slight back log.  At my consult I got they old...I have good news and some not so good.  My bone and major organs are clear but the "C" has traveled to local lymph nodes in my pelvis and possibly lower abdomen area.  I guess this is one of the benfits on being 47 and in the G9 club.  So after the truck smashed into me I picked myself up and started asking questions.  Bottom line and as a few og you have mentioned it appears surgery is not the best option at this point but will come into play.  Seems there is a clinical trial for those like myself who are on the younger side of this diease with as the Dr put "Curable" Stage 4 Prostate Cancer.  I was told to not be concerned with the staging as this does not mean too much due to medical advances.  He laid out 5 to 6 possibilities which was good even though 3 are not recommended.  Sucked to hear that they are "hopeful to cure me" but becuase of the lymph node situation not 100% and I may be in the treatable bucket of patients.  With 3 young kids at home  (16 and below) your mind can get the best of you.  I asked about when they would want to starts and it was suggested within a couple of weeks.  I am a bit confused here becuase I do here it moves slow but at the same time words like "agressive" and "in your lymph node system" and of course you are in the "gray area" my favoriate " we don't see many like you" referring to my matastasized but not to organs.  All these things scare the crap out of you.

So from I heard so far I am leabing toward a clinical trial hormones ( I guess more aggressive) for 6 months or so, following by prostatectomy, then maybe radiation depending on results.  I obviously  have concerns from hormone treatment but it beats the alternative.  If anyone has had this I would love to hear.

 

I am hoping to get more clarity at next weeks meetings.  

 

Any new info is greatly appreciated and I this site and forum has been very therapeutic so thank you all very much.

 

I'll be back soon...

Burgie

I'm glad your in an area with a superb treatment option, Burgie.  When I was diagnosed with advanced Lymphoma my kids were in middle and high school, so I can relate to having kids worried, and worrying about them and their futures.

Traditionally, and last I heard, this is still valid today: Two things are potentially curative of PCa: Radiation Therapy (RT) and Surgery.  If an oncologist is planning to attempt curative treatment (permanent eradication of the disease) for you, Radiation seems most likely his core tool. Hormonal Therapy (HT) does wonders and has made great strides in the last decade, but ordinarily is not regarded as curative, but it can help Radiation beat back the disease.  It is also great for long-term pallative care, virtually eliminating activity from the cancer for many years in many men, often over a decade.

You mention clinical trials; it may be that some doc has invented a better mousetrap and is on to something new.  But in choosing from the options given, I would tend toward one that involves heavy RT.  Or have them explain why it should be otherwise.

max