Father diagnosed with Gleason 9

At age 77, my very active father has been diagnosed with PCa Gleason 9. He has recently begun HT (Lupron) and will start RT in about 4 Weeks. He is extremely active, very healthy, and is dating a sweet lady after we lost Mom (his wife) 18 months ago. Life is great for him except for this darn cancer. I appreciate the threads I have read on this community. Dad does not fully understand the significance of his cancer. He still does not understand that a Gleason 9 is high risk, and I become tired explaining, re-explaining, and requesting test results when the docs talk directly to Dad. Yes, I go with him to consultations when I can. You candid and thoughtful posts assist me so much.

We have hope and believe in the treatment path we are choosing. We (there are 3 children and many grandkids and tons of community members who he helps everyday) want him to maintain is active life and be able to live out his life without having it compromised by this disease

Kinda rough,havanon! Not the support I needed today. After 18 months of caring for my mother after a massive stroke that left her completely paralyzed and unable to speak or care for herself in anyway, all I WANT IS FOR MY FATHER TO HAVE TIME TO ENJOY LIFE. And perhaps, I am a little selfish in wanting him to be pain free The last thing I want is for this aggressive cancer to MET and cause pain. At 77, he can end any treatment he wants.

Praying there are more kind people on this site or I am out of here. Lurking in the PCa forum has been a source of awesome information to me. Sorry I ever stepped out of my comfort zone and posted. You, sir, are an A**.

See how he does with treatment, everyone tolerates it differently. Ultimately he can decide if its worth it. To at least not give treatment a shot, especially a G9 doesn't seem like a good idea to me. Good luck!

Tom

Songbird,

I think the treatment protocol is appropriate, it is what I have done. Though I am not a doctor and not yet age 77 so I could really be out to lunch on this. My father lived to 93 and if anyone had given up on him at 77 I would have dropped them like a bad habit.

Regarding the treatment, his testosterone is already relatively low so the HT shouldn't be that bad. He has a supporting family and friends, and most of all you. I think you can make it work. So it is G9....so what. He is at life expectancy now, why not continue. One of our members says every day is a gift. I think he, and you have many more.

Best wishes and God bless you,

Jack

Songbird66, please don't give up. This is a good forum with many helpful people, and occasionally a rather thoughtless response. You're no doubt deeply concerned, and most likely have been reading a lot of scary stuff on the internet about the G9 diagnosis. It is serious, but generally we still have options and a lot of time left. It's not necessarily the disaster you may be thinking it is.

I've taken on sort of a personal mission welcoming G9 cases, because that diagnosis carries a type of concern that folks with lower gleason scores sometimes don't recognize. Often, posters here are low risk early cases, recovering from surgery and seeking advice about ED. That's fine, but their responses to one concerned with the flat out survival risk of a G9 diagnosis can be less sensitive than one may prefer.

There are many here with a G9 diagnosis, and doing well. To treat or not, especially at more advanced ages, can be a very difficult decision. There has been a lot of emotional energy here about over diagnosis and over treatment. One must carefully weigh the harms of treatment against the risks of disease progression. No treatment for PCa makes your life better. They're all tough, just in different ways.

I'm on HT, and had RT for my locally advanced G9 case. Not a lot different from your father, though I'm much younger at 56. I found the HT not too bad, and RT was an endurance test. Trying to make sure every week day that I had a full bladder and an empty bowel exactly at treatment time was a bit tricky. The treatments themselves were not a problem, other than causing some slight dizziness and fatigue. HT is an ongoing challenge, with hot flashes and fatigue, but I'm coping.

I think your father is on a reasonable course, especially if he's an otherwise healthy guy. Surgery probably wouldn't be a good idea, but HT and RT are usually pretty well tolerated. Obviously his doctors know the best with all of his details. We may be able to help with the questions to ask the doctors at his checkups. I met with my radiation oncologist once a week all through my radiation therapy, so that's a good time to ask any questions that might be developing as you go.

Don't let one person's rather thoughtless response deter you from this helpful site. We're here to answer questions, listen when you vent, whatever. We're here for you and your father!

Songbird,
Please don't give up on us since many are in your corner! We had a new member of our support group 6 months ago who was 78. He said he was a Gleason 9 with a PSA of "150". I didn't believe him until I looked at a medical folder that he had with him. I figured that his uro would prescribe lupron & send him on his way; didn't happen! He had 44 sessions of imrt along with casodex and lupron. He tolerated the treatment much better than I did and is only having minor SE's (hot flashes at night).
I wish your father the best and I'm sure that he will remember that you were in his corner. I support you!!
Bill

SONGBIRD66,

So sorry you have to be here. Since I was DX in Dec. 2012, I've found HW to be the BEST forum on the net. There are a lot of great members that can assist you and give some great advice. I however, am new and learning everyday, so should not suggest what you should do. I can offer you and your father my thoughts and prayers. Great that your father has you, your family and many friends to help him through this.

Dave in Bartlett, TN

Thank you. Thank you. I appreciate the affirmation that many do not understand how a Gleason 9 is in a different category than a G6. Thanks for the info in other treatment options that I was not aware of--SBRT and the Xgeva injections and Bone Density Scans. It is something to discuss with his RO. I should note that he will be doing IGRT. I have also found the G9 thread. It is most encouraging. Sometimes you just need to know you are not alone. I know men who have gone through treatment but none with a G9 DX. We never even entertained surgery as an option. It is a quality of life issue.

I am not one to just do what the doctor says. I like to be fully informed and able to understand the options. I can tell you...and I am sure you all feel this way...I would rather not have to be a PCa "expert". But you don't get to choose the cards you are dealt. I am also a stroke, aphasia, paralysis "expert" from my mother's stroke. Hearing from those who have experiencing it helps. Sometimes the doctors really don't know because they are not living with the effects 24/7. PCa can also be tough because Dad is not "sick".

I have to tell you that, as an English teacher, I am so impressed with the quality and descriptive nature of all you posts. You are all so articulate and good at explaining.

By the way, I am Harold's daughter. Blessing to all of you for the time you put into this community.

Mary Ann

Post Edited (SONGBIRD66) : 2/8/2014 2:03:09 PM (GMT-7)

Mary Ann,

I am bumping this up, and will delete the duplicate thread. I'll have some comments as well after I do that. Back shortly.

Songbird

Your dad is on the right track. I may be on that track myself in the future since I have poor pathology post RP which I had at age 69, but so far my post op PSA readings are pretty good. If I had been dxed at age 77, I'm sure that RP would not have been indicated. I did not have an MRI which could spot SVI; I had the normal Transrectal biopsy which of course can't detect anything beyond the prostate. I didn't understand the importance of gleason score until I read tons of literature which show that high gleason score and SVI are poor prognostic indicators. You might consider showing it to your dad. But even with our stats, he and I have 10-15 years left.
Good luck to you and dad!
Bob
___________________________________________________________________________
DOB January 1944
1981: prostatitis
2000-2013 BPH treated with finasteride & tamsulosin; low T treated with androgel
PSA History:
Pre 2009 0.4-.6
11/2011 2.2
8/2012 2.7
2/2103 5.5
4/2013 6.1
5/2013 6.6
11/2013 0.1
1/2014 0.2

6/2013 Bx:PCa Gleason 4+4=8 (Bostwick), 4+5= 9(Johns Hopkins), 2/6 cores, 10%, 40%, DRE neg. (Stage PT1c)
7/2013 bone scan and pelvic MRI negative
9/7/13 open RRP, Johns Hopkins, Ted Schaeffer MD PhD.
9/9/13 Pathology: 33G, both nerves spared, SVI, EPE and 4mm pos. margin at base (Gl7), Stage PT3bN0M0)
9/20/13 Foley and staples removed
Continence: one pad per day for 13 weeks, now none. ED pre and post op.
Watchful waiting until next PSA May 1, 2014

MaryAnn, everyone is different, what Havenon said is actually quite true. A lot of medicos, will say for a 77 y/o to give no treatment as PCA even a 9 is a slow moving disease and the patient could out live the disease. At 77 and active as you say, I imagine he is not senile and knows what he likes and may even resent his loving daughter possibly "forcing" him to do what he may not want to do, for whatever reason. If he starts having pain for mets,{ do we know he has mets, is he in pain now?}, he will need little encouragement from you to get relief via treatment available. Havenon has a right to his opinion in a firm and honest way, without you calling him what you did. I am not surprised the moderators did not edit it out{ striking 2 s's after an "A" actually reenforces the flame. They practice selective enforcement and at times actually partake in the flames, as a curmudgeon might.The last paragraph of your initial post speaks volumes of the problem here. Is your father part of the We,you describe? I'll bet your father, wants to continue to lead an active life without his 3 kids, grandkids and tons of community members compromising it. You were consoled by some for the "meanness" of Havenon, tho they had no problem with your demeaning comment, or the Geezer comment by Ziggy. There is a serious "clique" problem on this forum and its tendrils are strangling the pseudo integrity it actually believes exist. I will give you a truly consoling thought There is an excellent possibility of you father living 10 more years with zero pain, umm that would be 87. This is without any treatment. A doubling time of 7months is not that bad for a 77 year old man. Then there is HT if he needs it for 10 more years, should I go on. Please try to get your father to read the posts of the gentlemen who posted of their experience with HT. It could sway him to your point of view. I would hate to see him guilted to that point. I respectively submit , you and the rest of the clan need to respect your fathers wishes, I think he has earned it. Please do not censor the posts you allow him to read. He sounds like a good man, with a sound mind, and you know what?, his mind is just that, HIS. I sincerely hope you can handle this post and read it without getting silly and leaving in a huff. Your father needs the advice, not you. Rough. tough, but needed. Now we shall see how much freedom of expression, this forum can handle when it looks it directly, unblinkingly in the eye.

I have two words to say about PeterD's first sentence and two more to characterize them. Bah humbug, tee hee!

I appreciate the candidness of the group. I apologize for my calling havenon, whom I do not know, what I did. It took a lot of courage for me to step up and post, and I was not prepared to be challenged. His post hit me like a ton of bricks. I would never force my father into any treatment option he was not willing to try. Instead, I have to encourage him to not just do what the doctor says to do. He is not one to ask questions. He does not easily understand medical information. It never even entered our minds that we (Dad and his family) would not do seek some treatment option. I am not the evil, frightened daughter forcing my dad into treatment. In fact, I will be the first one to say..DONE.. when his quality of life begins to suffer. I have learned to be an advocate. Heck, he just started a new job. I think he plans to keep working part-time for quite some time. Life is complicated....more than just PCa to juggle..but that is true for everyone. I will stop defending myself now. It is an energy I don't need to expend.

God Bless.