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Just received a diagnosis of PC with a Gleason of 9 - Still hope?

Rvrices
Posts: 5
Joined: Jul 2012

Hello,

I am 57 and just returned from my appt to learn of this diagnosis. I've read some of the posts on this site over the last hour or so and it seems I haven't been handed a death sentence quite yet. Luckily I have a great family and support, just hope I don't let them down and go too soon. More tests, bone and ct, are scheduled for Monday, so another week before I learn the results.

I'm anxious to learn if there is still hope for more than the 2-6 years my doctor mentioned if it is advanced. Any members out there that have beaten the odds? If so, what can I do to head down the same path? So far every test has been worst case so I anticipate the results will probably show it has spread.

I appreciate any insight you may have.

Thank you very much!

Dave.

mrspjd
Posts: 693
Joined: Apr 2010

Dave,

Welcome to the forum and sorry about the reason that you're here. You may wish to read DW's thread, posted yesterday also about a G9 dx and hope, and other members' comments (including mine). http://csn.cancer.org/node/243848

As many in the PCa community like to say, no one, not even a well-intentioned medical doctor, can put a bar code with an expiration date stamp on you. Best wishes and good luck on your journey.

hopeful and opt...
Posts: 1353
Joined: Apr 2009

No expiration date stamp

We are here for you.

dwhite1031
Posts: 26
Joined: Jul 2012

Hi Dave,

I'm dwhite1031, 55 years old, and as mentioned, I just recently posted after recieving my diagnosis and Gleason score of 9. Becoming a member of this discussion group is one of the best things I feel a man and or his family/support team can do. I've only been on a few days and the positive feedback and sharing of experiences from everyone that has walked in my shoes and is currently doing the same is truly a blessing!

When my wonderful wife and I met with my Urologist to get my biposy results, we were told of the diagnosis, the Gleason score, and his desire to have the bone scan and ct and that we are moving forward with the thought that the cancer is localized until we are sure that it's not. But even though we discussed the high Gleason score, he never talked about life expectancy. He said we had plenty to absorb right now and to call him any time with questions before our next visit.

As he told us, you'll hear a lot of opinions, get a lot of advice both good and bad, be told stories about "I knew old so and so and he only lived 3 months after his cancer was found" and all that. There will be genuine expressions of support and some that are just out there. For instance one of my wife's more "blonde" friends sent her a text message saying "well if he has to have cancer that's the good kind"...my wife was of course appalled and bless her friend's heart, got an earful from my wife.

Life expectancy? Numbers and formulas, and I refuse to be a slave of statistics. There is only one who knows what the plan is for us here. So I plan to fight with all the ability He will bless me with, and take this journey intended for me.

We're all in this together. Though we're all in different places geographically, we're right beside you in the fight!

DW

sfcspre
Posts: 15
Joined: Dec 2011

had the same numbers. 20 out of 20 positive cores. 3 years and still here. not planning on leaving anytime soon. dont give up.

Rvrices
Posts: 5
Joined: Jul 2012

Thank you all for your kind encouragement and positive outlook! After 24 hours to read, ponder and pray, I'm also ready to put up the good fight. I wish you all the best and plan to keep learning and keep positive. There are way too many great lessons from those that have gone through this before. I'm fortunate to have found this site and I can learn a lot from you.

Thank you all again.

Kind regards,
Dave

dwhite1031
Posts: 26
Joined: Jul 2012

Hi Dave,

Just wanted to check and see how you were getting along since your last post. Hang in there and remember we're all part of this brotherhood and here to help.

DW

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Dave, my biopsy results were all 18 samples positive, between 40 to 60 percent cancer cells.Stage of T2c at time of surgery. I am now out by about 18 months, psa has been in the 0.02 to 0.03 range. Hang in there. Treatment is the key. My cancer was very agressive. I just take it a day at a time now. I and am a fighter, I normally do not give up on anything.

Kurt

hunter49
Posts: 204
Joined: Oct 2011

Laser what was your Gleason and path report like?

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

My gleason score was 7, the cancer was contained in the prostate, The doctor removed 7 lymph nodes from me, they were clean no cancer. Mine is very agressive and my Doctor informed me that it will most likely return in time???. If I had waited it was on its way to spreading

hunter49
Posts: 204
Joined: Oct 2011

Laser y the doc say very aggressive?was it not adenocell? I was a 4+3 but all contained however I just turned 50 in April and hope not to deal with this again. My surgery went well all clean but upgraded froma 3+4 and it was in both lobes. Completely organ confined had 2 reoports doen to confirm had second opinion from Netto at Hopkins. My biopsy had 3 of 15 with 95% volume howver there is a new way of calculating volume which has many getting nervous. First 3 PSA's all good

hopeful and opt...
Posts: 1353
Joined: Apr 2009

I'm already nervous; what is the new way.........thanks

Rvrices
Posts: 5
Joined: Jul 2012

Hi guys,

Appreciate your concern! I hope you are all doing terrific. Just completed the CT scan Friday and bone scan today. Results on Wednesday. Those were pretty easy. Now a short wait to see what the doc recommends. Regardless of what he suggests, what do you guys think about getting another opinion just to look at all the options?

Hoping the best for us all!

Dave

hopeful and opt...
Posts: 1353
Joined: Apr 2009

The person who graduates medical school at the bottom of the class is called doctor, so is the one who graduates first. On your medical team you want experienced doctors from high ranking schools with the great reputation.

There are support groups in your area where you can meet other survivers who will give you leads for your area. There are also nationally known doctors and institutions that you might want to consult with. Whatever you do, you want the BEST.

I mentioned to another poster with the same numbers to get second opinions on the pathology, and other tests that may be necessary.

With a gleason 9, I strongly recommend that you see a medical oncologist, as the key person to manage your case, hopefully one who specializes in prostate cancer. This person needs to be an expert in the field.

There are hospitals that are centers of excellence, a cut above the rest that I suggest that you explore.ie johns hopkins, ucsanfrancisco, cleaveland clinic, and others of this type.

Take charge of your case. Be informed, do research, and then some more research, attend support groups.....ask questions, in fact at this site, we like questions, the more questions the better

hunter49
Posts: 204
Joined: Oct 2011

Absolutely I would look into Hopkins or Sloan. Good luck and keep focused on beating this thing

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Make sure you see a doctor that specializes in prostate cancer. Many good places to go, I go to the best MD Anderson. Just look it up, but it matters that it is a medical cancer center. Just a local Oncologists may not keep up with all the newest drugs and treatments.

BLUEpac6
Posts: 34
Joined: Jun 2012

Please read my entry psa 110 now less than 0.01 it will show there is hope.My gleason score was 9,also.

Rvrices
Posts: 5
Joined: Jul 2012

Thanks everyone for your continued posts of hope and caring! It means a lot to me to see many of you doing so well!

Update: CT and bone scans were both clear, nothing found. Followup with the urologist (he specializes in prostate/kidney oncology) and he is very cautious about giving too much hope due to the Gleason 9 score, but has scheduled robotic surgery for the end of August (must wait 6 weeks after biopsy) during which time I can get a second opinion from a local Cancer Institute.

I remain hopeful and upbeat that I can be like many of you beating the odds but as you all know it's a very scary time. Continued best wishes to all of you.

hopeful and opt...
Posts: 1353
Joined: Apr 2009

This is necessary to determine if there is extracapsular extension. If there is extracapsular extension surgery would not be a good choice.

Did you speak with a radiation oncologist

What are the qualifications of this urologist, how many surgeries has he performed, what is his success rate etc, etc.

derom_99
Posts: 6
Joined: Jun 2012

I had my robotic surgery in Oct. 2011. Have great results and PSA. For me that was the best way to go. But always get a second opinion. Good luck and prayers sent your way.

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