HealingWell
Search Close Search
☰

Gleason 9 now what

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/16/2014 2:42 AM (GMT 0)
I posted here some time ago about my husband being just diagnosed.  Well after talking to several doctors and going up to University of Colorado Hospital and talking to Dr. Crawford and after MRI, CT, and bone scan, the group of doctors who meet and discuss treatment options recommended surgery.    So on Sept. 30 my husband had an open RP with the belief that all was still contained in prostate.  Now after getting final pathology we have been told he has some extra capsular extension on small area 2.2 mm posterior/lateral side and his Gleason score has been up graded from 4 + 4 to 4+5=9.  OUCH.  5% of prostate had cancer.   I am trying to keep positive for my husband sake but inside I am so afraid.  What future does my husband have and now what do we do.  Any advice  would be greatly appreciated.    My husband is 52 and I thought we would get to grow old together but now I am not so sure. 
Posted 10/16/2014 3:06 AM (GMT 0)
Hi jbart62

Just wanted to say hi as someone also with a 59 year old husband with G9. He was initially diagnosed as G9 with bone mets - so no surgery or radiation.

All I can tell you is, my husband's medical oncologist (you should make sure you have one too) looked him in the eye and said he would most likely still be seeing him in 10 years. Of course that's no guarantee and nobody can tell you what the future holds. But there are lots of treatments available.

We're all afraid, if we have any sense. Comes with the territory. Hang in there, you're not alone.

Carolyn
Posted 10/16/2014 4:12 AM (GMT 0)
and he's still going to grow old with you.

You've still got lots of fight left. Now it's a waiting game to see what the PSA does. They just may have gotten it all or there may need to be a little radiation to clean up the edges.

and you haven't even started talking about all the meds. We've got G9s here that just keep on going, and going and going.

Error on the side of hope and wait for the first post op PSA test.

and yes it is scary, and not the best report but it isn't the whole story.

Hang in there,
Andrew
Posted 10/16/2014 4:21 AM (GMT 0)
jbart62:

Hi ... sorry to hear about the G9; i know how that feels.

There's lots of good news for you still. Nothing showed up on the scans, which is huge; you still caught it relatively early. Also, there are a few 'go to' treatments for your situation and they have very good results. (i'm thinking radiation and a few years of hormone therapy; but i'm not a doctor and you'll need a good medical oncologist.) And you'll hear from others who are closer in stats to your husband.

After that point, you can treat it as a chronic disease and that will take you very far. (Thinking of it that way changed my mindset a lot; for now it's like diabetes, something to be managed and watched.)

Two things i recommend:

1. I do encourage you to be vigilant. If the doctor wants your husband to get PSA tested every 3 months, find a way to do it every month. Respect the disease, don't let your guard down.
2. Our current medical establishment tends to under treat higher risk disease. If you're not getting the answers you want or feel like doctors are stuck in 'standard care', i encourage you to reach out to get second opinions as needed.

Enjoy life and be happy ... and don't quit putting money in the retirement fund yet :-)

Ray
Posted 10/16/2014 4:27 AM (GMT 0)
Jbart62,

Take courage. I've been in it for a year and it does get better.

I summarised my year, see www.healingwell.com/community/default.aspx?f=35&m=3215183

all the best!
.
Posted 10/16/2014 11:31 AM (GMT 0)
Dear jbart62,

It's takes some time to finish cycling through all the emotions and even when you think you have them in check, something happens, you watch something on tv, you think about something, and there they go. The emotions rise up like a tidal wave and sweep over you. I have been there, am still there sometimes, and it will likely never go away. Just remember, there are many treatment options available that can help your husband enjoy a long and good life. I have read about some near miracles here so you and your husband should always keep hopeful. Wishing you all the best.
Posted 10/16/2014 11:42 AM (GMT 0)
Jbart,
I just wanted to say hi. I know it is a tough time... Been there.
Sierraluvr hit the nail on the head. Emotions kind of come and go even on good days. It does get easier the more educated you become.
All the best... From another 9'er!
Posted 10/16/2014 12:39 PM (GMT 0)
Thank you everyone for your words and encouragement.  This has been so hard for me.  My husband had no symptoms at all but PSA kept increasing.  So it was a shock to be told he had prostate cancer but after all the scans we thought we caught it early and all would be well so it was a shock to be told he is a stage 3a.  We have been through a lot the last few years.  I was diagnosed with breast cancer and like my husband it was very aggressive and associated with poor prognosis.  So now a few years out we were happy and thought we beat this stupid cancer beast only to be told it is my husbands turn.  He also was diagnosed with MS at the beginning of the year.  In the back of my mind I keep thinking that it is the MS medicine that made his prostate cancer explode because it lowers the bodies ability to attack itself.  But none of the doctors we have talked to think so and to be honest none of them know what to do with the MS part of this.  I keep thinking there has to be others out there that have MS and prostate cancer at the same time, so I am hoping maybe someone out there will see this and let me know how they are doing. 
Posted 10/16/2014 12:57 PM (GMT 0)
Hello Jbart,

Sorry to hear your husband has qualified to join the Gleason 9 club. We have quite a few members, the vast majority of us busily growing old with our wives, and while we are a lovely bunch of guys the club still sucks to join. I know how that post-op pathology report can steamroller you if it doesn't come out as you hoped.

We all overreact to the news -- I certainly did -- and you are overreacting a bit to your husbands report. The tumor was small. It penetrated the capsule but you didn't mention any positive surgical margins so they may have gotten it all. He was upgraded to a Gleason 9(4+5) but he was already an 8(4+4) so that's not a huge bump. That sort of a pathology report is not a death sentence; it is more like being ordered to take up an annoying new hobby as "community service" by a capricious judge. Your husband's cancer will continue to use up his time and attention, and will worry him and you... for a long, long time.

If your husband was a patient of my medical oncologist he would probably be talking about a bit of radiation and a period of hormone therapy to mop up any cancer that might have escaped. That's getting to be a fairly standard surgical follow-on for men with Gleason 9 disease with any other adverse factors in their pathology reports and my medical oncologist likes to hit Gleason 9 early and hard. But my pathology report was worse than your husband's and I can't say for sure what my doctor would have done, nor can I say what your husband's doctors will say -- or ought to say.

Now that your husband is a Gleason 9 you will find his doctors will become reluctant to use the word "cure" any more. But you can talk to them about the "curative intent" of his treatments and, if you do, you will find out his odds of growing old with you are really pretty good.
Posted 10/16/2014 1:21 PM (GMT 0)
jbaret62 - welcome and here is a roster of so many men with Gleason 9 or 10 created by bithday boy Redwing 57 who turns 57 this week.

www.healingwell.com/community/default.aspx?f=35&m=3182035

The thread is called part 2 because there are so many G9's doing well the part 1 thread exceeded the forum capacity.

www.healingwell.com/community/default.aspx?f=35&m=2863652

It's one thing to be told there are many in your situation but much more comforting when you read their actual case histories.

It would help if you updated your profile to disclose what areeea of the country you are located in. With so many memebers surely someone is in your area and can recommend a good medical oncologist.

LupronJim
Posted 10/16/2014 1:30 PM (GMT 0)
Hi jbart62, from yet another G9 guy. Sorry to welcome you here, but glad you found us. This forum is a really good resource. Peter DA has given you a good perspective. Keep breathing, and try to relax a bit. As you learn more, you'll gain more confidence in your mutual future. This becomes kind of a chronic condition, never out of your mind, but something you can live with even though the emotions can be quite a roller coaster ride.

I've added you, on behalf of your husband, to the illustrious roster of the G9 crew on this thread I've linked here. It's meant as a gathering place for those with this diagnosis, since our concerns tend to be a bit different than those of most prostate cancer patients. This is a significant situation, but typically manageable for a really long time. Reading through this thread you'll find quite a few of us, most doing pretty well.
www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504

All the best! Oh, and you may want to look up the "caregivers" thread also on the forum. There are quite a few ladies providing support for their husbands, and you share a unique perspective with them.

Jerry

[edit: Thanks for the shout out, Jim! We posted at the same time.
Posted 10/16/2014 2:32 PM (GMT 0)
Thanks again for the replies.  I am new here so haven't figured out all the threads but will watch the gleason 9 thread.  We are in Colorado area so anyone with an idea of good prostate oncologist would be appreciated.  We are being seen by Dr. Crawford at Colorado University at this time and I know they use a team concept for treating which does consist of medical oncologists but nothing has been said about my husband seeing one.  Our next appointment is in Nov. and I will ask then.  Dr. Crawford did say that he wanted to follow my husband closely and would watch his PSA if it starts to raise he will start further treatment. 
Posted 10/16/2014 5:33 PM (GMT 0)
Dr. Crawford is a top-ranked Prostate expert and you are lucky to have him as your primary doctor..Having the bulk of the tumor(s) removed is a good thing even though you do not know yet if it has delivered a cure..So assume it has and get on with your life! If the PSA monster returns now or in the future, that's a disappointment, not a disaster..Doctors now have the tools to keep your husband going for a long, long time..At the moment, you really don't need the services of a Medical Oncologist or Radiation Oncologist. First lets get 100% recovered from the surgery and see how effective that was at delivering a cure..If further treatment is needed, I'm sure it will be available to you at the U.C. Medical center at Anshutz..
✚ New Topic ✚ Reply