adt options/symptoms headin my way

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turner
Regular Member


Date Joined Jan 2010
Total Posts : 119
   Posted 1/9/2010 12:53 PM (GMT -6)   
Hello everyone
  Just joined a few days ago & this is my first post here. Was wondering if any one could share their experience on adt as my psa failure will make this a reality. I lost my father to pca in 93' @age 68. Sad that in this day and age of early screeming (I started at age 43,50 now) i ll be lucky to see 68.
 On to my question:
 
 I would like to keep this treatment between my wife and myself. Is that possible or will i eventaully show signs or symptoms that would be noticeable to others?
Thanks,turner

 
 diag 2/09 @ 3 wks before 50th
 
 psa 4.5
 
 t2b
 
 5 of 6 cores pos....5,20,50,25,5 %
 
 gleason 3+4
 
 RALRP 4-20-09
 Path: lymph node -
          seminal ves -
          margins -
          EPE -
          preineural inv-
          gleason 3+7
          stage pt2c
          tumor vol 40%
         
 
 psa 7/22/09  0.1
      10/23/09  0.3
       11/23/09 0.5
 Met with raidioligst 12-28
 Meeting prostate oncologist @Uof M 1-11
 Not like'n where this heading.  Surgery was and still is a walk in the park compared to what lies ahead :(
 
 
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/9/2010 1:01 PM (GMT -6)   
Hello, and welcome Turner, to HW Prostate Cancer. There are a lot of men here with similar stats. I am also a Gleason 7 (3+4) like you. I had surgery. It failed, and I recently completed Salvage Radiation Treatments. Sorry that your father died from PC at a relatively younger age. From your posted stats, you do have recurance going on for sure. It would be most normal at this point to have some form of radiation treatments, with or without hormone treatments being added to the mix. In my case, my radiation oncologist thought it was best to give me a strong dose of radiation without the HT, in hopes of knocking the remainder of the cancer out of my prostate bed. RIght now, the jury is still out.

Don't quite understand your last question, with PC, not sure what kind of signs/symptons you think someone could see. From the outside, no one would ever know I had cancer or had been through all the treatments that I have.

Please stay with us and keep us posted on your journey. You are most welcome here.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/9/2010 1:23 PM (GMT -6)   
Hi Turner,
Welcome to HealingWell. I just completed a two year four month stint on hormonal therapy, and try not to be too negative about it. I am in remission and I have been very positive for the most part. You are setting expectations for the worst and I can't blame you for it. I did have a brief bout with depression in the early going, but once I recognized what I allowed it to do to my psyche I better prepared myself mentally and "got a grip" so to speak. I am off the drugs now and things are indeed looking up. An important note is that I was diagnosed at the age of 44 with advanced prostate cancer. I am 47 now and believe I am living a very satisfying life.

Please follow my motto and that is to "Stay Positive". I believe in the power of positive thinking. And besides, why let this disease take away what you still have ~ Hope.

Peace to you my friend. And welcome again!

Tony
Prostate Cancer Forum Co-Moderator


turner
Regular Member


Date Joined Jan 2010
Total Posts : 119
   Posted 1/9/2010 1:34 PM (GMT -6)   
David
 Thanks for the welcome and quick reply. Radation has been considered. Thats one reason for my appt. at u of m on monday. My problem is rapid failure & doubleing time..approx 2 months. Last psa on tues of 1.1 points to micro metasis along with prostascint scan showing distant lymph involvement. If one can rely on such scans.Radation might not be of much benifit with distant mets? My question pretains to visiable signs of hormone therapy.
 My uro suggests hormone therapy but is worried that u of m MIGHT want me to consider some possible clinical trail as i have not yet started any salvage therapy. Sounds tempting but iam just going to wait and see what happens on monday. Will report back then.
 
 diag 2/09 @ 3 wks before 50th
 
 psa 4.5
 
 t2b
 
 5 of 6 cores pos....5,20,50,25,5 %
 
 gleason 3+4
 
 RALRP 4-20-09
 Path: lymph node -
          seminal ves -
          margins -
          EPE -
          preineural inv-
          gleason 3+7
          stage pt2c
          tumor vol 40%
         
 
 psa 7/22/09  0.1
      10/23/09  0.3
       11/23/09 0.5
 Met with raidioligst 12-28
 Meeting prostate oncologist @Uof M 1-11
 Not like'n where this heading.  Surgery was and still is a walk in the park compared to what lies ahead :(
 
 
 
 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 1/9/2010 1:39 PM (GMT -6)   
Think you need that other consultation before, and perhaps others before you make that next step. I am aware of PSA velocity and doubling time issues, that's been the deal with my journey right from the start.

Hoping the best for you.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 in place


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 1/9/2010 3:01 PM (GMT -6)   
Hi Turner,
 
I will be getting my sixth lupron shot next week. This will be month 20 for me on HT. The side effects that I have had related to the hormone therapy are as follows:
 
   Loss of body hair. (legs, arms, chest, was already missing a good bit on my head so can't say that it has affected that)
   Hot flashes. Initally quite uncomforatable and frequent. These days less frequent and not as long in duration.
   Atrophy of testicles. Thought it was my imagination but doc says there can be some shrinkage here. Says it will come back when lupron is stopped.
   Can't say that I had a lot of depression but I did have some brief moments of self pity. Like Tony, I try to stay optimistic and positive about all this.
   Zero libido. Yesterday I was taking more notice of the women in the airport for the first time in months. My last shot must be wearing off.
   I have had a modest weight gain. I keep up with my workouts but have slid a little on diet. More likely the diet is the cause.
   I have had to cut back on the weight I was lifting. Just cannot seem to do as much so I do a few more sets. That may just be age too.
   I do tire a bit more easily when doing strenuous work but luckily I am not called upon to do that too often.
 
All in all the side effects have not been too intolerable. As for anyone noticing.... do not worry about that. The only one that is even remotely noticable to others is the brief moisture on your face from the hot flashes.
 
On the radiation side.... been there done that. It was a piece of cake. Had a mild bout with diarrhea and urinary difficulty about half way through due to full pelvic treatments. Cleared up as soon as that was complete and had no further problems and none since that I can tie to the radiation. I do not have erections but then I do not have any desire either. I am single and live alone so this has not been as issue for me.
 
As you know each of us are different and our bodies have different tolerances to abuse. (for example Keith Richards smile ) Your experience may be better or worse.
 
Wishing you the best possible outcome.
Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Lupron injection on May 15 and every four months for next two years
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 to be full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones 
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
 
 
 


Navyman
Regular Member


Date Joined Nov 2009
Total Posts : 22
   Posted 1/9/2010 4:21 PM (GMT -6)   
I have had the same experience with two years of Lupron as don826,except I did not have the hot-flashes that others have had. My weight gain was not modest.

From my personal experience, I would strongly encourage you to discuss the issue of osteoporosis with your doctor if you do have the hormone therapy. At 12 months my Dexascan showed significant osteoporosis. At 18 months I had a vertebral fracture, requiring a spinal fusion and 4 months in a back brace.

After my bout with self-pity, I too decided to live my life to the fullest and deal with whatever comes when it comes.

Pray that your journey goes as well as possible.
71 years old, healthy and active, single.
Diagnosed 9/05/07 PSA 18.09
Biopsy 12 cores all positive, Gleason 4+4=8 Stage T2
Lupron Depot and Casodex 11/07
3d Conformal 1/08 36 sessions; IMRT 2/08 7 sessions
(hospitals first IMRT patient)
PSA: all followup tests undetectable
Severe osteoporosis from hormone therapy, spinal fusion 8/09
Levitra, Cialis at highest doses gave 60% erection
Edex at highest dose gave 75% erection with aching
Cialis daily 5mg + Trimix gives 75% erection with no aching
Adding VED 1/10 hoping to increase blood flow


turner
Regular Member


Date Joined Jan 2010
Total Posts : 119
   Posted 1/9/2010 5:19 PM (GMT -6)   
 
 Tony,Don826 and Navyman:
  Many thanks. Appreciate your time and input. Will stay in touch. Its one day at a time now .....turner
 
 diag 2/09 @ 3 wks before 50th
 
 psa 4.5
 
 t2b
 
 5 of 6 cores pos....5,20,50,25,5 %
 
 gleason 3+4
 
 RALRP 4-20-09
 Path: lymph node -
          seminal ves -
          margins -
          EPE -
          preineural inv-
          gleason 3+7
          stage pt2c
          tumor vol 40%
         
 
 psa 7/22/09  0.1
      10/23/09  0.3
       11/23/09 0.5
 Met with raidioligst 12-28
 Meeting prostate oncologist @Uof M 1-11
 Not like'n where this heading.  Surgery was and still is a walk in the park compared to what lies ahead :(
 
 
 
 


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 1/9/2010 6:47 PM (GMT -6)   
Turner,

I think before you rule out HT, you will need to see what chances the radiation guys think about the chances for getting the PC are. As I look at my own situation, which I exect will result in radiation, I am thinking that 20% is better than 0 %.

I totally understand your desire to keep it between you and your wife also. I started out the same way, swearing my family to secrecy. But you know, the longer I deal with this disease, the more I am beginning to think I 'm not going to worry about who knows. In some ways, I have begun to think it is another way cancer is beating me. Making me sneak around hoping no won finds out, like I have done somtehing wrong.

I am not ashamed of having PC, and I am becoming more open about it. First of all, if by being open, I can keep one man from letting PC get the best of them, then I will continue to let others know. Secondly, I'm tired of letting this disease get the best of me. I am caring less about who knows. This thing can be beat.

I'm only telling you my own journey with PC. I am not suggesting that you should or shouldn't do anything. We all have to do what we believe is the right thing.

Good luck on your decisons you will have to make in the next few weeks.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2243
   Posted 1/9/2010 7:01 PM (GMT -6)   
Well put Goodlife. I hide my surgery but my boss asked if she could share with my co-workers about my next step, which is radiation. Didn't want to feel like I was hiding anything and the more support we have the better. But each person does it their own way, but as men we are taught to keep things to ourself and hold it in. Women with breast cancer make us look like idiots as they have a great support sytem.
 Anyway best to you Turner as you make your choice. We are here to support you.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Consulting with Primary Urologist for further tx.
Great family and friends
Michael

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