Frustrated and confused

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net
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 1/7/2008 10:22 PM (GMT -7)   
Hello everyone,
It has been a while since I have visited here as our lives seem to be upside down all the time.  My husband. Brice, finally had the bracytherapy in early Dec along with a cysto to try and determine why he continues to bleed.  The urologist wanted to make sure the tumor had not returned in the urethra (the original site of CA) and the only symptom he had was bleeding, PSA was normal as well as DRE.  There was no apparent signs of this tumor but still cannot explain the bleeding ????  He had a bone scan in late Sept and the 5th and 6th ribs showed increased uptake from the previous one in May so they had him get a chest xray which did not "appear" to be cancer.  They kept telling me that we needed to proceed with the PCA and mets would not change their treatment plan. 
He is suffering terribly with the 'hot flashes', 'sweats', from the Lupron and of course the frequency is non stop.
 
On Christmas day we had our traditional opening of gifts and breakfast and prepared for guests coming later in the day for dinner.
The following Saturday, Brice's daughter came to visit us from Va. and I was showing her the shirts and pants that I had bought him for Christmas and he said to me, 'where did those come from?, thinking he was teasing me, I laughed and then realized he did not remember opening his gifts and acted as if he had seen them for the first time.  I called the oncologist's office and the nurse had me take him in on Friday and he told me that he treated the prostate and this incident had nothing to do with that and I should see my primary..
I was ticked.....asked about the continued bleeding and he says, it could be an infection and we could get a culture to see if it was and he would prescribe antibiotics....I don't think so....he just had a U/A at the urologist office and the bleeding has been going on for months!!!!!  
I feel like IF they do not know what is going on, they simply discount it and refer us out or say ...we don't know why he is bleeding....
well, that is not good enough for me....and I reminded him that Brice has nothing that is "norm" and we will have to go beyond the standards of care to monitor his progress and since we are scheduled for the IMRT for five weeks in Feb., I feel like we are expected to
go through the standard protocols for this disease without regard for his unusual circumstances.
He is extremely fatigued most of the time and other than going to church on Sundays, he isn't up to doing much of anything.
Thanks for letting me vent....
Faith

Faith
Husband - Brice
dx 8/29/07 Gleason 4+5=9 up to 90% of core bx (8)
tumor has unusual immunophenotype & features suggestive of
ductal (enodmetrioid) differentiation (???) per path report
Stage IV adenocarcinoma
urethral polyp
PSA 2.5 (never elevated)
Started Lupron & Casodex
2nd bone scan 10-15-07
rec. tx brachytherapy & IMRT
Jax., FL
 


naimnut
Regular Member


Date Joined Jan 2007
Total Posts : 93
   Posted 1/14/2008 8:34 PM (GMT -7)   
May God bless you.  I will include you and your husband on my prayer list.  Sounds like a really tough time.

Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 1/15/2008 6:59 AM (GMT -7)   
Faith,
Please feel free to vent anytime on this forum. We have all done it. You are another much needed reminder that this terrible disease affects many more than just those of us who have it. While your concern for Brice is so understandable, please - PLEASE take the time to take care of YOU too. I will continue to keep both of you in my thoughts and prayers. You have the perfect name - Faith....Please don't lose yours.
Best,
Mike
June 2005 - Age 53 PSA 4.8 at regular physical October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist November 2005 - Biopsy negative July 2006 - PSA 5.9 at regular Physical October 2006 - After several more rounds of anti-biotics PSA 8.1 November 2006 - Second biopsy - Positive December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear. February 2007 - Three to fo ur pads a day, no erection with viagara. April 2007 - First Post-Surgical PSA 0.02. Down to one pad a day.July, 2007 - Six Month Post-op: PSA 0.04 No change in ED. October, 2007 - Nine Month Post-op: PSA back down to 0.02!Almost totally dry! Only slight improvement in ED - Will try injections if not improved by next appointment. January 2008: One Year Post-OP PSA 0.02 still dripping, but improving. Tried 500 dose of MUSE for ED, no luck. Will try 1000.


wd40
Regular Member


Date Joined Jan 2008
Total Posts : 218
   Posted 1/15/2008 7:42 AM (GMT -7)   
You have to be careful to not fall in the doctor crack. That is the void between specialist and you family doctor where each one says it is out of their field. You best bet maybe a major health center like a Mayo clinic that pulls all the disciplines together so you don't fall into the doctor crack. If you are not getting results and feel lost then take the bull by the horns and get him to a place that will attach all his problems not just their specialties. Be sure and carry with you test results and a good history.
12/06/07 DaVinci and LRP


gulp
New Member


Date Joined Dec 2007
Total Posts : 4
   Posted 1/16/2008 12:59 AM (GMT -7)   
Hey, this is all new to me. I'm 83 and diagnosed at 78 with Gleason score of 7. No operations or anything invasive only 3 injections of Zoladex which I stopped years ago. My PSA is now 36 and keeps going up. I've no idea what that means, and am not sure my oncologist knows. I just wonder how high it will go before something happens.....

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 1/16/2008 10:50 AM (GMT -7)   

Hey Gulp,

Help is on the way.  Maybe our moderators will help you get your own thread started so we can all talk to you.  There is lots of knowledge and support here.  Don't give up on us..

Jim


Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 10/17/07 0.00. 
Next PSA test on 1/15/08
 
"Patience is essential, attitude is everything."
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/16/2008 12:29 PM (GMT -7)   
tongue  Hey Biker.... your wish is our command ~ Gulp's post got by me too!!!  Here it is...
 
Reminder to readers:   REFRESH (F5) when linking from within the forum
 
 
Personal Thread by GULP:   prostate cancer
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