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Calling all pT3 Club or "The Horse Has Left The Barn Boys"

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Posted 10/10/2015 11:42 AM (GMT 0)
Big Mac

In case I have confused you by changing usernames: Boomer of 1946 is now BrokenCrotch. Needed to have a sense of humor about this (my normal coping strategy).

Paul
Posted 10/10/2015 12:14 PM (GMT 0)
thanks big mac
i have tried to add a signature.
i guess i am t3b. allen suspects similar. my reports simple say stage 3
imrt side effects finished within 3 weeks of completion.
but hot flashes and fatigue continuing.
2 oncologists in different hospitals differ on continuing HT or not. One says no more after six months as pc is intermediate. the second says continue for 2/3 years. very confusing!!!
Age – 64
apr 2015 psa 10.517 biopsy 2 out of 7 involved with tumor. Gleaon 6/10
mri apr 15 confirmed sv involved
bone scan- negative
HT started 10 may 15 lorelin 11.25 3 monthly. 2nd injection in august
Avodart and HT brought prostate size from 125 to 51
Imrt 40 sessions june 15, finished 6 sep
waiting for psa test
Posted 10/10/2015 6:38 PM (GMT 0)
Okay Paul, I changed your screen name and had a little laugh. Does me good today since I am at work.

Monty,
I added you to our club. Welcome aboard!!!
Do you know what your Gleason was? It should be a number that adds up to 6,7,8 or 9. Ex 3+4=7. Your signature came through find, Good luck with your first post treatment PSA test.
You and I are both the same age. Good way to spend our 60's, dealing with PCa.
What country are you from? It looks like your email has something to do with Dubai.

Bill from Florida cool
Posted 10/11/2015 8:27 AM (GMT 0)
thanks for the welcome big mac- wish we had met under different circumstances!!
residence dubai but treatment in pakistan. hence the poor english.
I have been reading the mails on your forum and frankly I feel under educated. The last 6 months have been a roller coaster ride. wish i had found your forum earlier.
My gleason is 6 according to the reports but now I am doubtful- Allen on this forum suspects that it maybe higher. I will forward the scanned reports to you on your email as it will take too much space on this forum. I will be obliged if you can help out with gleason score etc.
regards
Posted 10/11/2015 2:51 PM (GMT 0)
Monty,
Looks like your Gleason was 3+3=6, I'll add that to your info on the list.
It does seem like a low Gleason score for pT3b.
I sent you an email.

Bill from Florida cool
Posted 10/11/2015 2:59 PM (GMT 0)
glad to know that it is low
if sv is involved that is t3a or t3b??????
Posted 10/11/2015 5:11 PM (GMT 0)
Monty, T3b represents SVI. If there were no SVI, you would be considered T3a. You and I have very similar stats having the SVI and gleason 6. I went for a second opinion and was told gleason 7, 3+4, but was advised to follow the same treatment. Best wishes.
Posted 10/11/2015 7:31 PM (GMT 0)
After PSA rose to 1.22, I went to Sand Lake Imaging in Orlando on 9/9. Their scans found two suspicious iliac lymph nodes. Bones, organs were clear. So I'm undergoing DART (IMRT on steroids) here at Dattoli Cancer Center in Sarasota to pelvic lymph nodes , 50 sessions at 1.5 gray per = 75 grays. More fractions at lower gray is supposed to reduce toxicity while maximizing total radiation to kill PCa whether evident or microscopic. Plus I'm on 13 months of ADT3 ( Lupron, casodex, Avodart).
Hope this gets me a few more years.
Bob
Posted 11/10/2015 7:33 PM (GMT 0)
Any new members want to join?????

Bill from Florida cool
Posted 11/11/2015 1:37 AM (GMT 0)
hello Mac... I am a PT3a...NEPOL
Posted 11/11/2015 3:47 AM (GMT 0)
Nepol,
You have been on the list, about 2/3's of the way down.

But thanks for bumping the thread! yeah

Bill from Florida cool
Posted 11/11/2015 2:02 PM (GMT 0)

Big Mac said...
Any new members want to join?????

Bill from Florida cool

Want to join? I can understand having to ask, because- no offense- who would want to join this club? smilewinkgrin
Posted 11/11/2015 2:35 PM (GMT 0)
Billy Bob:

My thoughts exactly.

This is not a Standing Room Only type of club!

I prefer the "I never heard of HW Club"

Mel
Posted 11/11/2015 5:06 PM (GMT 0)
What is the old saying, Who would want to join a club that has me as a member, or something like that.

Bill from Florida cool
Posted 11/11/2015 5:30 PM (GMT 0)
Hello, this is Jen posting on behalf of my DH. We are in the land of unknown right now and I think he belongs to this group. I am hopeful the ADT treatment will lower his PSA and give more time to recover from surgery.
Jen
Posted 11/11/2015 6:19 PM (GMT 0)
DJDEGO--- did you get a second opinion on tert. 5? Epstein says if 5% up it's ugly. hope it is not but you need to know.... luck to you.--...NEPOL
Posted 11/11/2015 6:40 PM (GMT 0)
I'd like to humbly request permission to join this exclusive club on behalf of my dh, Tom. We'd rather not be here, of course, but you seem like some pretty good folk!

I think this is attributed to Woody Allen: I'd never join a club that would allow a person like me to become a member.
Posted 11/12/2015 12:38 AM (GMT 0)
Well that didn't take long to come up with 2 new members.

Welcome to the pT3 Club Cincy12 and djdego and their DH's. I have added you to the growing membership.

Cincy12, you are correct, I believe it was a Woody Allen statement.
Sorry to see Tom's PSA is rising again. What if anything is he doing about it?

Welcome Jen, to HW and the exclusive pT3 club!
Sorry to see your DH is starting ADT already. Hopefully that will do the job. How is he doing so far with his side effects from his surgery?

We formed this little club inside of Healing Well to help each other that have been staged pT3 because we are a special group whose world could change again with a rise in PSA at any given time.

Both of you new members certainly qualify to be here with your DH's.

Remember members, we are here to help each other. If a member has a question or concern, if you can help with your experience, please jump in. If a member just wants to vent, help them get through these bumps in the road.

Bill from Florida cool
Posted 11/12/2015 2:43 AM (GMT 0)
Thanks for the warm welcome, Bill. You put it very well - we just had the PSA rise that changed our world! Tom's oncologist basically just advised him to schedule a Lupron shot, without much discussion of options, etc. So we're trying to educate ourselves and start being more proactive. As I said on another thread, I feel like we've been sleep walking for a bit. So any suggestions are greatly appreciated as we start another phase of this fight. Being here has raised my spirits - thank you!
Posted 11/12/2015 3:43 AM (GMT 0)
Cincy12, you and Tom are not alone in this. We are here for you. I haven't had recurrence yet so hopefully some of the brothers will come around and pass along some of their experience, strength and hope for both of you.

Keep the Faith

Bill from Florida cool
Posted 11/12/2015 4:08 AM (GMT 0)
Bill, After this last monster PSA, I was overwhelmed by fear and a kind of rage (which surprised me). Getting involved here has done a world of good for my psyche, giving me the strength I need to support Tom.

Your kind words will help me sleep better tonight - thank you for that!

Hope I can eventually get the point of being a little help to others, too.
Posted 11/12/2015 1:43 PM (GMT 0)
Thanks for the warm welcome. DH has had incontinence issues since his surgery. He is going to physical therapy to help that. With the PSA hanging at a .4 we opted for Lupron 4 month to let him hopefully get that back.We see the surgeon in january for "what next"

jen
Posted 11/12/2015 3:05 PM (GMT 0)
Jen,
It is still early in your husband's recovery, he can still get dry in a few months. Unfortunately I never did and had to have an Artificial Urinary Spinichter installed that solved the problem.

Slings are an option also iF it comes to that which it may not. I didn't know that 2 months after surgery and I had a lot of anixiety feeling I would never stop leaking. It is many a man's fear that he may become incontinent forever. There are solutions so tell your DH to relax, take care of himself, watch what he drinks, ex. Coffee, citrus drinks, beer, etc, do his walking and Kegels and see what happens.

Bill from Florida cool
Posted 11/12/2015 3:12 PM (GMT 0)
Thanks for that Big Mac....I think it is a rush to get him healed up it seems he may need radiation if his PSA don't go lower with ADT. He has the next PSA january before the dr appointment. It is so hard on him. He had 0 symptoms and missed 1 blood test last year...I am glad to have found this group of real people to share with and pray I can help or share with others in the same boat.
Posted 11/16/2015 2:21 AM (GMT 0)
Add me to the list. First post op PSA tomorrow.
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