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psa 67.55 gleason score 9

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Posted 6/8/2013 7:59 PM (GMT 0)
Randy,
I can only wish you well..With a great daughter you will do well on this journey! QUESTION--
Did you ever serve in the armed forces? If so, then the VA can help. You don't have to be a veteran of desert storm or whatever to get assistance from the VA--the largest medical system in this country. Either way, get Walsh's 3rd edition of his book "Surviving Prostate Cancer"--it's many member's "bible". After a biopsy, with your stats a bone and ct or mri scans are performed and the hormone therapy is started--if the cancer hasn't spread outside the prostate, then you have the bewildering choice of what therapy is best--make sure you have at least 2 opinions. one of my support group members has a psa of 151 and a 9 gleason and he's getting radiation--it hadn't spread...
These are just my observations from personal experience and may not apply to you..Don't ever stop fighting! yeah
Bill
Posted 6/8/2013 8:13 PM (GMT 0)
Todd's words of wisdom are real medicine for your brain, I was where your are 11 years ago, only 12/12 biopsies all 80-95%, bpsa 46.6, total urinary blockage into ER, Gleason scores 7,8,9's (trifecta-2 of each), ct and bone scans appearing clear back then. Suggest you learn all you can and question plenty, no overly simplistic answers especially in high risk patients.

Checkout www.yananow.org (900+ patient experiences/mentors) you can see what others did in similar scenarios, it is educational is the point. Try a nomogram with your stats so you get an idea of average statistical outcomes....it will not define your particular case, to many variables exist in PCa. Join the warriors in this, become your best advocate....only you walk the walk in this. Best to you, lots of choices.
Posted 6/8/2013 9:10 PM (GMT 0)
Randy's daughter Monica here..... I cannot believe how much support you are showing a complete stranger! (In tears) just shows us were not the only people in earth with this going on!! It feels like everyday that passes we don't start treatment another it might spread. Maybe that's the worry wart in me. I worry so much about my dad. My mother has passed 5 years ago. I'm going to fight tooth and nail to keep him. He's down a lot. So young with a catheter and just not knowing. I worry. I stay strong for him and melt when I'm alone. I can't even begin to tell all of you in words how I can see a glimmer of light somewhere from all your posts! Thank you again! Monica
Posted 6/8/2013 9:45 PM (GMT 0)
Randy & Monica,

I value the Walsh book, "Surviving Prostate Cancer" so much in my own 5 year PC battle, that I will be happy to send you free of charge, including postage, the latest 3rd revision of the book, yours to keep and use.

Just e-mail me (my e-mail is listed here) your address, and I will ship it out the first of the week. There's a lot of good information in it to get your started, and will make it easier when you are talking to Randy's doctors in the future.

david in sc
Posted 6/9/2013 12:08 AM (GMT 0)
Monica, you are very welcome. We have a member here who.s tag is Mrs.WorryWart, so you are in good company. Her husband is fighting a challenging battle himself. Do not let your mind go into overtime. Take purgatory up on his offer. I t is a great book and I believe the information will provide knowledge for you both and additional hope and comfort. I had it on my makeshift desk in my makeshift office in front of tv from diagnosis to treatment and for a time after. Take care of each other. Aloha, Logo Ps , Your post made everyones day around here. I leak tears at least once a day for something, Joy I, reckon and { inside joke], which you will get when your PCA knowledge increases. I ain't even on hormone therapy.
Posted 6/9/2013 1:00 AM (GMT 0)
Randy,

Can't think of much to add to what the others have said. So I'll just say hello from yet another G9. You'll be OK.
Posted 6/9/2013 1:26 AM (GMT 0)
There is a lot of compassion here.
Posted 6/9/2013 1:38 AM (GMT 0)
Randy and Monica, just said a prayer for y'all. Just got here myself about 3 weeks ago. A lot of good info from these "vets" on HW have helped me as I am still deciding on which direction I want to go. I go one day at a time and suggest you do the same. Aloha from not-so-sunny-today Hawaii but nevertheless, a good day. And, less I forget, Go Hawkeyes!

Post Edited (gardenz) : 6/8/2013 7:58:12 PM (GMT-6)

Posted 6/9/2013 2:15 AM (GMT 0)
Randy...cant say much more than the others have here already....I think you've got a good start from all the posters here....wish you the best from another fellow G9. Chris
Posted 6/9/2013 2:23 AM (GMT 0)
Ditto so many of the comments above. Stay strong. Take good notes when you meet with doctors. You can beat this thing!

-Gedman
Posted 6/9/2013 2:27 AM (GMT 0)
Monica here. Just had dad over for dinner. He's very dizzy light headed and unsteady. Very concerned. Noting everything for dr appt Monday!
Posted 6/9/2013 7:45 PM (GMT 0)
I can't think of a better example than Todd. His story and his attitude are so inspirational. I hope you can see some light there. Please hang in there and keep us informed. There are lots of people here who have as much or more expertise than urologists. Make use of the resource and best of luck with your first doctor's appointment.
Posted 6/26/2013 1:40 AM (GMT 0)
Hello everyone,
Is there still hope with PSA of 2300 Gleason score 9 and done with hormone treatment, taxotere, zytiga and now on Xtandi......is there anyone who has exhausted all the above treatments and still going strong? This all happened in last one year.
Pls help...
Posted 6/26/2013 2:43 AM (GMT 0)
Sorry for the Dx, Randy,
It's a tough one but it's manageable. I have had many friends over the years with similar Dx and there has been more successes than failures. Along with Mr. Todd above, I am working as a friend and coach for a guy that had almost the exact same Dx as yourself. His age at Dx was the same as Todd's ~ 42. I think you should try to contact these guys and ask them what they have done.

As an almost knee jerk reaction, and rightfully so, you will likely start hormonal therapies and check the response. If you check clinical trials.gov and search S1216 you'll see a trial that is looking to replace the current HT regimen with a new one. At this point you don't qualify as yet, but you might soon enough. I am a study coordinator on that one as a patient advocate. But there are others too that are looking to improve the already great options available.

One key point is to get educated and remain positive. So much has been accomplished to help guys like yourself. Being positive will be hard at times but it helps.

Peace to you, and again sorry for that Dx. But you can and likely will do well.

Tony
Posted 6/26/2013 3:57 AM (GMT 0)
Hi Randy,

Sorry you have joined us, I am Gleason 9 with PSA 200 at diagnosis in July 2010 and still around. Make sure your daughter goes with you to the doctors, you are told so much stuff it is hard to take it all in. I was in a daze when told, I was on my own and was struggling to take it all in.

I have learnt so much from the good people on this site.

There is lots of things happening in the PC world now and there is good support.

All the best.

Posted 9/16/2013 11:09 AM (GMT 0)
That is a very good start, keep it going.
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