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Just got pc diagnosed - worried and lost

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Posted 11/13/2017 1:05 AM (GMT 0)
New member:
Interest in advice for newly diagnosed PC with gleason score of 10, PSA=7.8
Biopsy of High grade cancer. Is there hope for a future?
This for a starter

Microchip
Posted 11/13/2017 1:49 AM (GMT 0)
Hi Microchip...very sorry to hear about your diagnosis. It's a real shock, but hopefully we can be of help.

To answer your question, yes there is hope--tons of it. Lots of guys here with high-risk cancer are doing well, including myself. Unfortunately, you're going to have to jump through a lot of hoops in the coming months, but there's a lot of hope that you can also do well.

Can you tell us more about your situation? Typically with a high-risk diagnosis the doctor will have you take a CT and bone scan to see if there's any spread. If the answer is no then you can go for a cure. Your PSA is relatively low, which is a good sign that a scan won't show anything. Once you have those results you can start to think of treatment options.

Please tell us more, including your age and where you're located and we might be able to give you more direction. You can create a signature like the one I have below. Good luck to you and I hope we can help!
Posted 11/13/2017 2:23 AM (GMT 0)
Microchip- welcome to the forum. I am Gleason 9, stage 4 and am seven years into the fight. There are many effective treatments available and more in clinical trial. Please know that we are here for you. There is hope.
Posted 11/13/2017 2:39 AM (GMT 0)
thanks for the reply. I am exited about having someone to talk to about this scary adventure.
I will nee pleny of advice from those that have survived this.
I am having a pet scan and a bone scan Tuesday. I am 75 years old in MA.
Hoping to go to Dana Faber for treatment.
[email protected]
Posted 11/13/2017 3:38 AM (GMT 0)
You're in great hands at Dana-Farber - some of the best prostate cancer doctors are there. I'm very impressed that you're getting a PET scan with a "high risk" diagnosis (they often reserve those for men with recurrent PC). With the newly approved Axumin and experimental PSMA-based PET scans, that's the wave of the future. If the PET scan can't find any distant metastases, they can go ahead and try to cure your prostate cancer, probably with whole pelvic radiation and hormone therapy. If they find distant metastases, they will put you on hormone therapy along with either Zytiga and/or Docetaxel, and keep you going for a very long time.
Posted 11/13/2017 6:04 AM (GMT 0)
Microchip,
I'm also in MA. Dana Farber is where you want to be. I moved my care there since failure of salvage radiation. These docs see more high risk patients day to day than docs at local hospitals and have the experience and current knowledge needed to best advise and treat the kinds of patients who local docs don't often see.
Jim
Posted 11/13/2017 6:23 AM (GMT 0)
That's not what you wanted to hear.

Even in high risk cases, there is plenty of reason for hop and plenty of treatments that can be tried. After the scans you figure out the treatment. You're in a good place for treatment.

Do keep us updated with your progress.
Andrew
Posted 11/13/2017 11:03 AM (GMT 0)
Wow, this is great. thank you all for your replies of encouragement
and good advice. This is really encouraging me and am anxious to
move forward and have many more years with my wife, 5 children, 10
grand kids and one great grand kid. there is too much contradictory
information on the internet. I will rely on this forum. Side line, do any
of you have an opinion about food like glucose will kill cancer cells if eliminated.

PS - Bohemond, glad to here you are nearby and favor Dan Farber, keep you
and all others updated.

Thanks,
Microchup
Posted 11/13/2017 11:22 AM (GMT 0)
Micro sounds like you have a great family which I have found has helped me greatly in my path of this darn disease hope your scans are all clear!!!

Larry
Posted 11/13/2017 11:48 AM (GMT 0)
Thanks Larry. We are hoping also. I will post my progress.

Micro (Al)
Posted 11/13/2017 2:01 PM (GMT 0)
Sorry you're a new member of our "club" but you've found a great place to hang out as you start your journey. The beginning is the scary part, we've all been there and fully understand how difficult it is wrapping your head around the situation.
Posted 11/13/2017 2:32 PM (GMT 0)
Microchip: I will just add my $o.02. You have found a great place to gather up to date info to base your treatment decisions on. What I have found most helpful is the 'true to life" info from the survivors themselves. This often differs from the Stats the Dr.s throw at you.

Breath deep and enjoy life as it comes at you, it seems you have many options.

May all beings be well.

Roger
Posted 11/13/2017 4:52 PM (GMT 0)
Sounds like you have a great support structure right there around you. Add this forum to that list. This is more like a brotherhood. There are the actual guys going through this, their wives and their families, all contributing.
Once you do your homework and make a decision in your treatment plan, it will be like a weight lifted from your shoulders. When you have your doctor visits, have someone go with you and take notes. Its amazing how much your mind can get clouded while listening to the doctor. He's saying one thing and you're trying to figure out the next question. Notes help immensely.
Deep breath.......relax......we've all been there.
Best of luck
Posted 11/13/2017 5:05 PM (GMT 0)
microchip - not a lot to add to the great comments made already, but let me add my regretful welcome. Sorry you need to here, but glad you found us!

There are quite a few of us high-risk types here, most doing pretty well. I'm a G9 5+4 case myself, and have been at this for going on 5 years now. My PSA after all the treatments has apparently leveled off, and with luck we may get years of durable remission.

You are in for a fight, but there are lots of weapons available to you. This forum really helped me out early on, helping me to ask the right questions and providing a sanity check for what I was being told. It really helped my confidence with the doctors, and gave me a badly needed sense of some control.

We have a thread here for G9 & G10 folks, as a gathering place for those of us facing that diagnosis. There are links to the first posts for many of us there too. Our concerns are usually centered on the best aggressive treatments available. You'll probably have multiple treatments, some simultaneously, to fight this thing on multiple fronts.

Here's a link to the thread. I've added you to the roster on the top of that thread, the 3rd in a series:
The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
Posted 11/13/2017 6:11 PM (GMT 0)
There is no reliable evidence that changing your eating habits now in any way will do anything for you. Whatever impact diet has on PC development occurs over a lifetime. That said, several guys on HW do make changes, and I think there is some psychological benefit in getting a feeling of control over your situation. So if it's not so radical as to hurt your overall health, why not?

The thing you can do that probably does have some benefit is to exercise and get in top shape. It will especially be important to exercise vigorously (with doctor's permission) - both cardiovascular and weights - if you have hormone therapy and radiation. This is NOT the time to take it easy - please ignore well-meaning family and friends who urge you to do so - they just don't understand. If you can afford it, get a trainer who will force you to go to the gym.

I'm a big believer in getting the mind in shape too. What I did was to start psychotherapy, practice mindfulness, and attend prostate cancer support group meetings. The psychotherapy helped me look at my fears (often based on experience with other cancers that do not apply to prostate cancer) and see how they were causing anxiety. Mindfulness-based stress reduction is a great practice that helps keep you focussed in the present moment rather than on futures that may or may not happen. It was started by Jon Kabat-Zinn at UMass Medical School to benefit cancer patients, so I'm sure you can get classes in your area. Cancer Support Community or UsToo probably have PC Support Groups in your area that you can attend. It's an enormous benefit to talk about what you're going through with other guys who understand.

The only supplement I know of that may be of some use is sulforaphane - or you can just eat a lot more broccoli.
Posted 11/13/2017 9:13 PM (GMT 0)
Thank You allen.
There is just so much misconception out there.
I have purchased so many probably useless prostate supplements
when I was trying to reduce my prostate size which is three or four times normal size.
Even a Larry King live push for the miracles of a prostate supplement.
So much advertisement pushing Natural prostate supplements.

Micro
Posted 11/13/2017 9:30 PM (GMT 0)
Micro

I live in MA, and am seen at Dan Farber. My MO is Mark Pomerantz, and is at the forefront of the research. In addition, he is easy to talk to and will explain the process in a manner so that you are comfortable with your choices. I have been at it for 4 years, so you will see that it is just part of the journey and not the end.

Mike
Posted 11/13/2017 9:34 PM (GMT 0)
Micro, nothing to add, other than my welcome to our group. I wish you didnt need to be here, but I'm glad you found the forum, there is much knowledge and support here. Best of luck on all that is ahead of you, this disease can be beat, or controlled for many many years.
Posted 11/14/2017 1:17 AM (GMT 0)
Thank you all for the comments, encouragement and support.
Your a great group. Also thank you Redwing57 for the thread
which I will be involved in. I am very nervous but you are helping me to cope.
Let's all hope and pray it works out for me as it has for you.

Micro
Posted 11/14/2017 1:59 AM (GMT 0)
You got it! Sending prayers your way at this very moment!

Hang in there! These guys will get you through this, you can depend on them.
Posted 11/14/2017 7:17 AM (GMT 0)
Microchip,
Extending a warm welcome to HW and my suggestion for additional encouragement for hope. First, take a look at Tood 's blog. Just type it into the search bar and Todd's posts and blog will pop up. He's the HW poster boy for hope in the face of a an unfavorable dx. and
SEcondly, read through the Letters To The Newly Diagnosed. Reading these will help you realize that the fear and uncertainty is all normal feelings and expected, but you can and will get through this with the help and support of those around you and the great folks on this forum.
Best wishes. Hope and faith moving forward.
Beth
Posted 11/14/2017 9:53 AM (GMT 0)
Microchip,
I have nothing to add to all the great comments, but welcome! We are all here for you and there is so much knowledge and compassion on this forum. You have found one of the best spots on the Internet. Do your research and keep a positive attitude. Sue
Posted 11/14/2017 10:34 AM (GMT 0)
Update; Going for a full body bone scan and a Cat scan today.
Checking if cancer has moved to nodes , bones or other area.
Hoping not. Your prayers are appreciated. Thank you
Posted 11/14/2017 11:09 AM (GMT 0)
Micro....all I can add are my prayers and best wishes. The advise you get from the fine people here, is as good as it gets. You are not alone!

Good luck today.

Posted 11/14/2017 12:24 PM (GMT 0)
Rooting for you, Micro. Keep your spirits up!
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