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Just beginning this jounrey

Burgie
Posts: 14
Joined: Sep 2017

Hello All,,

Less than 72 hours aafter my diagnosys I am trying to figure this all out.  Sorry to all of us that have to deal with this.  I have heard  a few times now that PC is very treatable and if your going to get "C" then this is not a bad one....What ???  Of course I should just wait until all my scans and appointments are done but I find it difficult to be patient given what was just confirmed.  I just turned 47 (9/12) so I guess I can say I was diagnosed at 46 with prostate cancer and Gleason scale 8/9 among multiple cores.  I asked questions and bought a book to try and understand this but what is apparent is that prostate cancer is not that clean cut.  I am scheduled for pelvic CT & bone scans for next week then all the follow up appointments with medical & radiation oncologists.....Just having to do this is a little surreal but it is what it is.  So what I have read is that given my age and an "agressive" cancer (ie: Gleason 8/9) that this may be a little more cause for concern.  What may I be in for.  Thank you in advance for any insite.

kluff
Posts: 5
Joined: Sep 2017

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

SubDenis's picture
SubDenis
Posts: 130
Joined: Jul 2017

Unfortunate welcome to the site.  I find comfort hearing from other guys sharing our journey.  Denis

kluff
Posts: 5
Joined: Sep 2017

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
Posts: 40
Joined: Aug 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

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
Posts: 40
Joined: Aug 2017

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

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

SPT
Posts: 40
Joined: Aug 2017

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.

Grinder
Posts: 441
Joined: Mar 2017

IMHO Max is right about urgency in this case.

What SPT said about naturopathic remedies is sound advice. There is no "cure" in those remedies, despite the hype pushed by vendors on Amazon, and the reviews by paid shoppers. "Skunk oil cured my cancer!" It was the purchase of naturopathic remedies on Amazon that I first noticed the phrase "This is my unbiased and impartial review for which I received a discounted or complimentary sample" meaning they got it for free for an "unbiased" review. Uh-huh. After that I learned there are nationwide associations of shopper-reviewers who will promote your product through Amazon reviews. And naturopathic remedies are the most over-promoted IMO. 

BUT like SPT said, there is some value there, not as curative, but as contributing to a healthier lifestyle. I would recommend not relying on Amazon reviews, but researching herbal remedies, etc. that contribute to your immune system, flushing toxins, calming stress, etc. because your immune system is the second most important mechanism after the treatment course you finally decide, and a healthy immune system will both aid in fighting the cancer, and maximizing the treatment, and lessening side effects, BUT it is still just an aid, not a cure. 

This is my impartial and unbiased review for which I received a discounted or complimentary product.

(just kidding).

GeorgeG
Posts: 127
Joined: May 2017

Burgie

Sorry you had to come find us but glad that you did because there is some quality knowledge here.

Your Gleason scores are agressive so you do need to keep things moving but you also need to get informed and be comfortable with your desion. On some of these treatment choices you only get one shot so you need to be comfortable with your choices. Do the best that you can to stay relaxed, use the best doctors/facilities that you have access to and wait for the complete picture. Once you have done your scans along with your biopsy and and other test that you and your doctors decide on such as genetic testing then present your details here and we can give you some concrete ideas. A good general read is either Patrick Walshes or Balentine Carters book (both from Hopkins) but they are surgery centric. Make sure wherever you go that you talk to a surgeon and a Rad Onc. Please present PSA history, biopsy details, scan details and the recommendations that you receive? Where are you being diagnosed?

George

 

Burgie
Posts: 14
Joined: Sep 2017

GeorgeG,

Thanks for the insite.  I have been diagnosed with "treatable" stage 4 as the cancer has spread to my lymph nodes in the pelvic area and possibly lower abdomen as I stated in most resent post (below).  I have a colsult with another top doc on Monday the 25th then Rad Onc on Wed the 27th.  I am hoping to have all potential plans laid out by the end of next week to make a decisoin on how to proceed.  One is a cllinical trial (new hormone (more agreesive) + surgery + radiation therapy).  I am leaning that way but need more intell.  

Thanks for the advise.  I hope to retrn the gavor once I make a choice and have some feedback to offer.

 

~ Burgie

Clevelandguy
Posts: 462
Joined: Jun 2015

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
Posts: 14
Joined: Sep 2017

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3313
Joined: May 2012

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

RobLee's picture
RobLee
Posts: 259
Joined: Feb 2017

Burgie, as Max said above, the terms "aggressive" and "slow moving" are opposites. Only the first one applies to you.  The slow moving part is only for older guys who have a low grade cancer and may die from something else first. That is NOT the one you have, especially at your age  Mine is G8(4+4) and I am just now completing the "triple play"... surgery one year ago, followed by hormone blockade and now finally adjuvant radiation. I have just 12 more doses of radiation to go!

This is typical treatment for "locally advanced" prostate cancer... cancer which has already spread outside the prostate gland.  Since yours has already spread to the lymph nodes, you will likely need to move quickly. This is serious stuff. If the cancer gets into your bones, then it becomes essentially incurable. Unlike other cancers, prostate cancer usually moves into the bones before the organs and sets up shop there and is very difficult to eliminate without gutting the neighborhood. Other cancers may start with radiation or chemo, but for PCa those - especially chemo is saved for last, unless it has already advanced to the point where removing the gland might do more harm than good.

These are generalities of course, YMMV.  Each case is different.  New therapies have been recently developed but are not without serious side effects.  Also very expensive and have strict requirements to qualifying for having them covered by insurance... though they may be referred to as hormone therapy or combined with HT.  Where you are located you will likely receive excellent care. Good luck going forward!

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