CSN Login
Members Online: 1

You are here

Time to check out

Deadmansoon
Posts: 43
Joined: Dec 2016

I'm 39 years old. Gleason 9, psa in the 40s, biopsy 12 out of 12 cores all 100%. Psa jumped from 33 to 40 in three weeks. Just had nuclear radiography images done, waiting on results. Have had symptoms for about 6 months. Group grade was 5 0f 5. As I am only 39 I do not want to lose ability to get an election. So many treatments, I don't know. Urologist said if it hasn't spread then surgery to remove it. From what I read, it'll most definitely come back. Just lost.

LvGuy1
Posts: 54
Joined: Oct 2016

Deadmansoon, Sorry to see you here, but as you will see there is a lot of hope and great wisdom on this blog. At 39 with a gleason of 9 a feeling that you are going to die from Prostate Cancer is a very real fear, but fear not as i have read on this of people with a gleason score of 10 around after 5 or 10 years if not more after being diagnosed. One of my best posters here is VascodaGama he always knows what to say, maybe not we want to hear but he says the truth as he sees it thru a 2nd pair of eyes and as a Prostate Cancer Survivor. I just got done with Surgery for my Prostate Cancer on the 20th of this month and am now feeling like i have beat this demon of a beast so i know what you are feeling. All of us here are people with Prostate Cancer and what we are doing to change the odds of it spreading and taking our lives. When you are done crying and hateing everyone and everything (and i am sure 1 or both feelings have already beed expressed) take a breath and start actively searching and finding answers to your questions and also finding answers on what is the next step. and you will find out that even tho you have this cancer you still have a life, people who care about you and you are the only person who can dictate what happens in the future. I hope you the best and know that you can beat this no matter how bleak the outcome seems. And also read what other people have posted and will post as they will give good advise and hope and encouragement as you live to see another 39 years and yes that is very possible. who Knows you might even laugh at some of the things posted here and to me having a sense of humor goes a long ways.  Good Luck from a Survivor even if its only been a week for me. 

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

39 Years Old,

The contrast of the two "names" at the beginning of this thread is the extremes we all experience when diagnosed with prostate cancer (PCa). Yours as a deadman contrast with the survivor as a livingguy.

You did not share the whole story about you and your case but the name you chose is not valid in PCa terms. It is true that this cancer also kills but allows time for us to fight it, strip it off its skin and burn it to hell. Why should you think that you are a deadman soon?
LvGuy says it well, there are patients with worse aggressive types of PCa who managed long periods of living. You need to treat it the soonest to stop its advancement. PCa becomes dangerous when it spreads to other organs, when we do nothing to stop it and allow it to take the drivers seat. You need to get the control and punch it down to the canvas. You need to educate yourself on the basics of prostate cancer, its treatments and how to suppress it to gain confidence and a positive posture.

Can you tell us what did the doctor say to you?

What cause you to have a biopsy?

Have you done any image study, such as: bone scan, CT, MRI, X-Ray, etc?

What about the DRE (digital rectum exam)?

Have you been given a Clinical Stage?

Are there any other blood tests markers out of the normal?

Can you tell if you have been involved/taken steroids or any hormonal manipulations?

How about any other illness?

Has any one in your family been diagnosed with PCa before?

Are you married and have kids?

The first think to be done is try to get a proper clinical stage via reliable exams. The info you share refers to a voluminous cancer case, aggressive and at high risk of existing metastases. The PSA is high but it could be due to other facts other than cancer alone. The pathologist report (biopsy) may indicate clues or findings of other type of tissues such as BPH (benign hyperplasia). In any case, I would recommend you to get second opinions from different physicians, read and inquire about any detail before proceeding. Do things coordinately.
Radical therapies (such as surgery and radiation) are the ones that manage to assure cure. Palliative therapies based on hormonal treatment can provide control (hold cancer activity turning it indolent for long periods) and some patients manage over ten years of enjoyment and quality living. Aggressive cases need to be tackled with aggressive methods that can involve a combination of all therapies administered concomitant/adjuvant or timely sequential. The choice is wide and you need to have some comprehension of their risks and side effects for you to choose.

I recommend you to prepare a list of questions for each consultation you are going to do. You should also keep a file on the data collected (copies of the biopsy report, image studies, PSA histology, etc). Here are some links that may help you to understand PCa matters;

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

http://www.mayoclinic.org/diseases-conditions/prostate-cancer/basics/preparing-for-your-appointment/con-20029597

A compendium on Prostate cancer matters;

http://www.lef.org/Protocols/Cancer/Prostate-Cancer-Prevention/Page-01

A good book “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (third edition); which may help you understanding options between surgery and radiation.

We all get scared and go through the same feelings of "death" at the door steps. I recall thinking that I was walking forwards with the many but at a separate path. That was 16 years ago.

Welcome to the board.

Best wishes and luck in your journey,

VGama

Deadmansoon
Posts: 43
Joined: Dec 2016

Haven't been staged yet. Had nuclear medicine imaging today, should get results soon. Urologist said chase is slim but if it's contained in prostate he wants to remove it. On pathology report it says grade group 5 of 5

Yank31's picture
Yank31
Posts: 37
Joined: Dec 2013

You must remember one important thing, even if you take nothing else away from this forum: Everyone's case is different.

A close friend had a Gleason 9, barely organ confined. He had a prostatectomy three years ago and is cancer free today. Do not give up hope. You cannot easily predict how your cancer is going to react to treatment. Hang in there.

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

39 Years Old,

I sense anxiety in your words. Surely your case needs attention, quick responses and deep analysis but any intervention should be done after you know the facts and are confident on the option you choose. Your cancer status of today will not alter over night. The treatment outcome of your choice would also not differ if done two months later. At beginning we all want to get rid of the bandit the soonest and make decisions blindly without pondering on the consequences. Many guys (young fellas) give more credit/priority to their job and try to fast track the treatment. You need to get composed and confront the situation with heads up.

Group 5 of 5 is the newer (2016) terminology classifying the aggressivity of prostate cancer (its grade). It was introduced by the pathologist Dr. Jonathan I. Epstein (a respected PCa pathologist of JH laboratory) and accepted by the urologic associations around the world. The system involves 5 groups/grades according to the type of cell. Yours have been graded Gleason score 9 (4+5), (less than 5% of Gleason pattern 5). In "patient language" it means a type of highly aggressive cancerous cells but lesser percentage of G grade 5 (better than Gleason score 10). 

"Grade group 5 (Gleason scores 9–10): Lack of gland formation (or with necrosis) with or without poorly formed/fused/cribriform glands"

I wonder about the nuclear medicine imaging you have done. Was it an MRI or a simple CT? How about a bone scan, have you done one? And are there any details of the DRE?

These image exams are not 100% perfect but provide clues on the location of the cancer. Your doctor's statement " if it's contained in prostate he wants to remove it" is logical and the proper way to get rid of the cancer by dissecting the whole gland (removing it from your body). However, if the cancer is not totally contained within the gland then surgery (RP) alone is not 100% complete to assure due treatment. Radiation should complement the RP. In fact, Gleason 9 cases are more linked to extracapsular extensions (in older patients) and a positive DRE may render surgery alone not proper.
Double therapy doubles the risks and the consequences. In this regard many guys abstain from surgery and prefer to do radiation alone from the beginning. This is a wise choice when one is not sure if his cancer is contained or localized.

The main goal of a treatment is to get cured. However one needs to consider the risks behind the treatment (not the cancer) because these are the consequences we will have to endure while living. The quality of life is in jeopardy. Surgery is linked to incontinence and erection dysfunction (loss of natural sex life). One also looses the ability of fathering a child. The consequences reach family proportions involving the couple (it may lead to divorce when one is young). Radiation is linked to colitis and prostatitis. It is also linked to late side effects regarding urgency in urination. There are other aspects in each treatment you need to read about. Getting second opinions from different physicians (urologist, radiologist and/or medical oncologist) and discuss with your family must be done.

The reading materials I provide links above can help you. Survivors in this forum will also try helping you with their experiences. You are the one that will take the drives' seat and command your fight.

Best wishes,

VG

Clevelandguy
Posts: 426
Joined: Jun 2015

Hi,

Once you find more info on your PCa you & your doctors(s) can formulate a treatment plan.  Hopefully it's contained inside of the prostate which gives you several good options.  Vasco & Lvguy both have good points in their dialog.  Keep the faith, the battle is not over yet & you have not lost the war either. Your just starting your journey, most of us on this board have been down the path you are about to begin, so hang in there.  As Red Green always says "Remember, I'm pulling for you. We're all in this together".


Report back when you get more test/scan info and we will help you through this.

Dave 3+4

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

A screen name is whatever any patient chooses to make it. Your's makes sense for a brand-new guy who has a severe, aggressive diagnosis at a very unusual age, but clinically it is not reasonable.  Too many men here were diagnosed with astronomical PSA levels and a Gleason of 9 or 10, and lived many years to share their victories here.

The average life expectancy for men with newly-diagnosed, Stage 4 (metastatic) PCa in the US is over five years.... so that means many of these same men live much longer even than that. Of course, you may very well not be Stage 4, as that has yet to be determined.

The more you learn, the more optimism regarding PCa is justified. 

max

Deadmansoon
Posts: 43
Joined: Dec 2016

Bone scan results said no signs of metessies, haven't discussed results with Dr because don't see him for two weeks. In the mean time getting appt with oncologist, because mine is a urologist. This site has been so great, so much good info. Thanks to everyone that has helped me start this journey.

Deadmansoon
Posts: 43
Joined: Dec 2016

I'll see what both Dr's say, then might head to MD Anderson in Houston.

Gleason Score 9...
Posts: 62
Joined: Nov 2016

Youngmanwalking (I refuse to use your screen name...sorry!),

This is good news...keep learning. This a journey....you have started and will get the answers you need with the doctors you are starting to see. I am hopeful that you feel a sense of relief with your bone scan results and a new understanding that this is part of your life...it is not the only thing in your life!

Please keep us updated!

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

To see cancer as a negative event in one's life is not only understandable but also quite normal, and there is nothing wrong in that.  It is the way the untrained mind works.  You do not want death or the cancer, so the understandable reaction is resistance.  There is nothing "wrong" in that reaction on the one hand, but there will be negative side effect from that kind of thinking that will not only aid in hurrying the death process, but also destroy your quality of life.  The fact is that ALL suffering comes from resistance to "what is."  The mind will create aprehension, depression, negativity, and the constant churning of the mind will destroy each here and now moment so that there is never peace, gratitude or treanquility.  

      On the other hand, there in another choice available to you which can change the remaining time you have on this planet to a time of tranquility, gratitude, bliss, harmony, and peace.  It is not an easy choice, but it is an easier choice than what is happening to you  in this present moment.  All of your life you have been exposed to, "Thy will be done, Thy Kingdom come."  This message is not going to be a Christian church inspired Saviour type message, which teaches salvation lies outside in something else.  This message is about your salvation ONLY lies inside and that your salvation ONLY lies in what actions YOU are willing to take to save yourself.  And those actions will be oposite to what actions you are used to taking in your past life.  Faith means that everything that comes into your life comes for your benefit, and therefore deserves celebration.  To adopt this change of atitude will not be easy, but if you want peace it is your ONLY option.  I ask one question.  Which do you think will work best in your life?  My will be done, my kingdom done, or Thy will be done, Thy kingdom come?  By that I mean, NO ONE can control their life.  If you could, you would NOT have the cancer now.  If you CANNOT  control your life, the you can avoid suffering if you surrender to "what is" with gratitude and celebration. You will need training to do this.  It will require meditation and study.  I suggest you start NOW with this meditation: https://www.youtube.com/watch?v=0KdxGerO-9A  This is a powerful medition by Dr. Wayne Dyer.  You might also listen to any of Dr. Dyer.s discourses. Also you might read two books by Eckhart Tolle- The Power of Now, and A new Earth.

     I am not coming from a holier than thou position.  No one is spiritually better than anyone else.  We are all equal, every brother and sister is at the level they need to be for their own spiritual growth.  It is all equal.  It is all perfect, just as this moment for you is perfect for your spiritual growth.  You might read my message here:  http://csn.cancer.org/node/263139.  I would like to add that a great place to start would be to change your poster name.  That is NOT an affirmation that will contribute to your well being.

With love and respect, Swami Rakendra

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3252
Joined: May 2012

SoonWellman,

What R wrote above is counter to what modern people want or demand: we want wellness, and we demand it now.  A deeper grasp of the fundamentals of how reality works is something few ever consider, but it is well worth the effort to step back, be calm, and work toward the best possible outcomes.  

After a severe fight with Lymphoma years earlier, when the urologist gave me the PCa diagnosis early one morning, I yawned in her face and asked for appointments regarding treatment options, and walked.out.  Cancer somewhat bores me now, and I do not let it affect my daily affairs any longer.   Overwhelmingly, Americans today live with cancer, rather than die from it. Make that adjustment in your view and things will be much less horrific for you.   Fear is normal and rational, and yes we die at times from these forms of cancer.  But not now, not next yesr.

What R. wrote is not denominational or linked to any particular belief system: it is universal and eternal.  I am going to send it to my many friends at Lymphoma, where I do most of my posting.  I regard it as brilliant.  I hope it assists you, along with the mostly technical/medical information this site confers.

max

VascodaGama's picture
VascodaGama
Posts: 2968
Joined: Nov 2010

I am glad for knowing about the negative bone scan. You start getting the process ongoing and under your control. The second opinion will provide you with more knowledge of the situation. It is good you take along to the consultation a family member and that you take notes of the discussions for later analysis (you can tape the conversation). I think it better that you bring along copies of the exams and tests together with a list of questions on things you worry or want to know details. 

Physicians at MD Anderson are highly regarded as "masters" in PCa affairs. They have developed newer techniques in diagnosis and treatment of PCa and you can trust their professionalism. Surely you should opinion your likes and dislikes and only agree with their suggestions if these are the ones you feel confident. You can provide/send them the biopsy cores and image study film/DVD in advance of your meeting so that they can analyze the condition and provide you with a more complete opinion.

The survivors above are fantastic. Wonderful words and opinions. They share the qualities that inspire any one afflicted with the disease. I love them all.

Best wishes for a healthier New Year filled of good results.

VGama

Will Doran
Posts: 207
Joined: Sep 2015

Hi,

I'd rather not use the name you have on here, so I'll agree with Max and call you SoonWellMan.

Sorry to see you have to join us here.  I was diagnosed in October of 2013, at age 67 with a PSA of 69 and a Gleason of 7. I had no symptoms.  So, I can understand completely how you feel to a point, and what a shock it has been for you.  In my mind, You're still a kid. I was 20 years older than you when diagonosed.  So, I'm sure this is very tough for you.   However as young as you are, Please don't give up hope.  I can only guess how you feel because you are so young.  It's obvious this life isn't fair at times.  However take some time to think about what Rakendra has said to you.  Your life will change, but it can change you for the better.  I know that's hard to understand, but it can happen. There are many treatment options, and more are coming.  I had Robotic Surgery on December of 2013.  At my age, and becasue of my physical condition, My doctors told me I was a good candidate for the surgery, becasue of my "Youth".  At which I laughed.  So, you do have your youth in your favor.  You are younger and stronger that I would have been.  However don't jump into a treatment without exploring all options.  My doctors insisted that I talk to Radiation Oncology and hear their treatment options before I decided to do the surgery.  I wanted the cancer gone, so I went with the surgery.  Ended up as a Stage pT3bN1 after post surgery pathology. No sign of sprerad to the bones, and one very small spot in one lymph node.  That spot was so small that it didn't show up in my MRI's.   They treated me aggressively.  I was treated as a Stage 4 with 8 weeks of follow up Radiaiton and two years of Luporn as Hormone Treatment. I'm now a three year survivor, however after going off the Lupron and being off it for a year, My PSA has started to rise again.  I was holding at a PSA of ,<0.010, then 4 months ago, after my testosterone had come back up to 320 (it had been at 17--normal is 250 - 1,100) my PSA came up to 0.035.  As of two days ago my PSA has now come up to 0.145.  So, I guess we're not through with this as of yet.  But I'm going to fight as hard as I can, with the support of my wife.  If needed I'll go back on Luporn, Casodex, or have an Orchiectomy if needed.  I refuse to give up.  And My hopes are that you will do the same.  Fight like Hell.  Don't give into this beast.  Research all the treatment options and like I said,  FIGHT.  As VG always says get other opinions, and study all the options.  None of us are doctors, as far as I know, so we can't tell you what to do or we really don't even suggest what to do.  All we can do is tell you what we've been through, and how we have progressed.  This is a hard battle, but you can make it through this.  Please keep in touch with us through this web site.  And, try to find and keep a sense of humor, and find the hope that there is. 

Know that you are my Thoughts and Prayers.

Love, Peace and God Bless

Will

hopeful and opt...
Posts: 2218
Joined: Apr 2009

Just to let you know that, like the others I am here for you, and wish the best for you.

You may wish to attend a local support group, where you can receive emotional as well as pointers about treatment. There is an international support group called ustoo.org that sponsors local support groups. You may wish to google in order to determine a local support group.

You mentioned that you are considering md anderson. MD Anderson is a center of excellence , where you will receive state of the art, optimum treatment. There are also other centers of excellence and specialists in other parts of the USA, that are also excellent, but I assume you live near md anderson....(there is a difference between doctors and facilities, and outcome. MD Anderson is a great choice)

Good idea to have a copy of the results of all of your tests and medical records, so that you can present to doctors at various specialties, as needed.

Great that you are doing research, read books, ask questions here, attend local support groups so you can determine the best dianostic tests and treatments   for you.

My thoughts and prayers are with you.

 

 

Cherokee6
Posts: 33
Joined: Oct 2011

I send this for support and thanks to VGamma. On Dec 14, 2009 I underwent a radical prostictectomy followed by 40 radiation treatments and hormones for 3 years thinking it was the end. With the help of this group and a supportive wife I fordged ahead. I also had 12 of 12 biopsies positive, positive margins and extra capsular extensions with seminal vesicle invasion. Here I am 7.25 years later with an undetectable PSA feeling blessed. I continue with PSA tests regularly and have another one scheduled for next week. Each time I go I expect the worse and so far have not heard those dreaded words but thankful for the support and excellent medical care received. I've had bone scans, CATs scans and MRI's. All negative! All I can say to those on this path is take a deep breath, don't give up and you are in my thoughts and prayers. VG, thank you for continuing with this important site. I truly don't know how you do it. 

Subscribe to Comments for "Time to check out"