Advice Needed on High Risk Cancer...

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veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 7/23/2007 11:14 PM (GMT -7)   
I believe all prostate cancer is very insidious and risky. But I was not shocked after a biopsy Gleason 10 put me in a high risk
 
 catagory. I was immediately put on hormone therapy (PSA only 5.7) and scheduled for surgery on 2/14/06. The path findings revealed a Gleason 5 + 4 = 9 and seminal vesicle involvement.
The cancer had grown out of the prostatic capsule. I've had 2 bone scans which were clear. Next came adjuvant radiation therapy, June thru July of 06. My PSA as of May 29th is a very negligible .01. Everything appears to be going fine.
 
Now my uro wants to take me off hormone therapy despite high risk features. I've been on hormone therapy or intermittent HT since 12/03/05. You'd think I'd be glad to get off this form of therapy. It prevents testosterone production which presents a list of nasty side effects including: loss of libido, muscle mass reduction, fatigue, thinking problems, weight gain, and possible anemia. But high risk prostate cancer can feed off testoterone causing a recurrence.
 
I know it is not unusual for uros to discontinue hormone therapy after about 2 years. I want testosterone  production as much as any man. It would alleviate the side effects I mentioned. I just don't know if it's safe or if it has become a very uncomfortable security blanket. 
 
I know men who have been on hormone therapy for 3 or 4 years without a recurrence. Are they wrong?  I realize that everyone is an individual who has to make his own decisions. This is a tough one. I have gotten mixed second and third opinions. Most agree, despite positive attitude, that this cancer will most likely come back within 1 to 5 years. It's like a crap shoot.
 
Would you take the risk of stopping hormone therapy to feel like your old self again knowing that a recurrence while on hormone therapy is still very possible? Or realize that it can stop cancer recurrence for many more years?
 
I don't expect a definitive answer. I'm not sure what I expect from you. Maybe just writing about the decision I have to make is helpful in some ways. Prostate cancer can be a mean old nasty dog that bites you when you least expect it. I do or don't get my next 3-month hormone shot in August. Not sure what to do.
 
 
Thanks,
 
 
     Vet
 
Age: 55
Biopsy: Gleason 10
Hormone Therapy: 12/15/05
Surgery: 2/14/06
EBRT: 6/05/06 thru 7/25/06
Diagnosis: T3b Seminal Vesicle Involvement, Gleason 9
Current PSA: .01
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Post Edited (veteran1) : 7/24/2007 9:00:17 AM (GMT-6)


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 7/24/2007 1:13 AM (GMT -7)   
Hello Vet,

I don't know what to tell you. All we can do to fight this PCa is research every possible bit of info dealing with our unique cases, and then do what you 're doing now. Every choice is made with a "feeling in your gut" that this is what is right. Hopefully someone else that has all ready made this choice will post their experiences. I wish you good luck finding your answer.

Glen
Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 7/24/2007 1:27 AM (GMT -7)   

Hi Vet,

Why does your Doc want to take you off the hormone therapy?  If you choose to stop can they take a PSA weekly or monthly so that if your PSA starts to climb you can take action right away? Are they worried that the hormone thearpy will stop working if you take it for a long period of time? Is there another form of meds they can try?

I am sorry, I know you were looking for advice or answers but I don't know enough yet to offer advice, just questions.

Wishing you the best!!!!

Rick


Rick & Diana
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
 


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 7/24/2007 5:50 AM (GMT -7)   

Vet,

As you are aware, no one knows the answer as to whether continued HT is better than Intermittent therapy, or how long it might contine to be effective ( either way).

The side  effects of hormone treatment over an extended time can become permanent so all of this comes down to a personal choice.

Personally I'd use hormones for up to 2 years then monitor with tests of PSA, Dihydrotestrosterone and Testosterone.


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 7/24/2007 8:07 AM (GMT -7)   
Hi Vet,

You do pose a good question. My personal answer is a definate, yes, I'd take a vacation from HT for the simple fact that it would hopefully keep me responsive to HT that much longer. Good luck in making a decision that is right for you.

No one can make the decision but, we'll hang out and support ya kiddo!

swim
 


veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 7/24/2007 8:19 AM (GMT -7)   
Hi Aus,

Thanks for your posting. Over the course of my research, and talking to 3 uro doc's, I have never heard that long-term hormone therapy produces permanent side effects. Perhaps you are referring to bone thinning. This can be monitered with bone density tests. I agree about the survival benefits of continued vs. intermittent HT. I'm just getting differing opinions regarding recurrence free survival benefits of HT over a longer
period of time.

Thanks,

Vet

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 7/24/2007 10:45 AM (GMT -7)   
Hi Vet,
I'm pretty much in the same boat as you. My PSA is all the way down and my oncologist suggests that we will have another Lupron injection in September, my 2nd one, but that we won't do a third. He wants us to use the intermittent approach. If the PSA begins to rise, then we will measure dihydro-T and regular T. If it is my regular T then he would reintroduce casodex and Lupron. If the PSA is nonresponsive, then it may be supplemented with ketoconazole and perhaps Avodart. These two agents address dihydro testostorone. I like you am pT3b though my Gleason was 4+3, my PSA before treatment was 19.8. I am not sure who is worse off for recurrance. If you haven't already read the Myers book. It does go into detail on his experience treating advanced PCa. It gave me a loy of insight of what is predicted for me to experience. I know what works and what doesn't, and that their are additional therapies when HT is supplemented with addition medicines.

Tony

veteran1
Regular Member


Date Joined May 2007
Total Posts : 133
   Posted 7/24/2007 12:37 PM (GMT -7)   
Hi Tony,

I always look forward to your posts. You have a very insightful way of presenting your thoughts and getting to the point. I wish some docs I know would do the same. I just finished Dr. Scardino's The Prostate Book. I'm sure you have read it. I recommend it anyone reading this post. Sounds
like you have a good plan. I'm going to print this page.

Happy Vacation,

Vet

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 7/24/2007 2:16 PM (GMT -7)   
Happy to oblige Vet,
The long term affects of HT are real and some are irreversable. Osteoperosis, anemia, and weight gain, and depression are the most dangerous. As Myers said in his book, "any doctor who prescribes long term hormone therapy hasn't tried it". Myers himself had stage IV and your Gleason of this disease and is on his eighth year. This is why I put emphasis on his book. He is inciteful as a urologist and a patient. He is very much a promoter of not just remission but a durable remission that inproves the quality of life. Much of Scardinos book, who has co-authored books with my oncologist, is more general about all illnesses of the prostate. I showed the Myers book to my oncologist and he said he had read it and agrees with Myers approach. In fact he suggested the intermittent approach he was already planning for me.

Tony

AEG
Regular Member


Date Joined Nov 2005
Total Posts : 154
   Posted 7/24/2007 7:57 PM (GMT -7)   
Hi Veteran1,

I'm posting an article/interview with Dr. Fred Lee, link is: http://72.14.203.104/search?q=cache:GHnxYm2x0jsJ:www.rochesterurology.urologydomain.com/handler.cfm%3Fevent%3Dpractice,template%26cpid%3D34+dr.+fred+lee+prostate+cancer&hl=en&ct=clnk&cd=10&gl=us
My husband consulted with him early on in our journey and I think he's a brilliant man. I'm posting this article because it's inspirational and it also mentions that he's been on HRT for quite some time. Perhaps you can do a phone consult with him or better yet, ask to speak to his assistant Ingrid and it won't cost you anything. The only thing is that I’m not sure if Ingrid will return calls to non-patients.

Best of luck to you. I'm sending you a blessing that you should have a full and speedy recovery and that you should have good news to report to us.

AEG

sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 7/25/2007 5:25 AM (GMT -7)   

Hey Vet and Tony,A

Another excellent thread with you two!  Tony, you said you're having a second hormone shot....am I correct in guessing that you are on an initial ht course of six months, and then wait-and-see?

I had my second zoladex shot the beginning of March this year....that was my last one.   I've been wondering the same thing as Vet -- should I be on this longer?  I've read some material that suggets the longer (say three year course) inital period MAY have some advantages, but in my case, six months in conjunction with post-op radiation is what my oncologist suggested.  I'm almost five months past my last 3-month shot----still having hot flashes and total loss of libido (which was alwys strong before PCa!).....kind of wondering when my testostirone will kick back in.....

I asked my oncologist if I did have a recurrence, would he put me right back on HT, and he indicated that is is normal to let the PSA "run" to get a good idea on doubling time, etc.  Of course, we all hope and pray we don't get there!

I have not read the Myers book, but many of his articles and am a fan....have either of you taken on his diet recommendations?   Does anyone know of anyone who has gone to see Myers for a consult?

I'm kind of like Tony --- I'm T3a, but my pre-op PSA was 39---I don't know if that puts me on a higher or lower risk for recurrence....

 

 

 


Sterd82
Age 47
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sessions of IMRT Ended Feb 1, 2007
PSA as of May 25, 2007 undetectable
Next PSA November, 2007


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 7/25/2007 8:20 AM (GMT -7)   
Sterd,
I can see where we differ in our treatmemnt but can't explain it. It just falls in line with this stage having a contraversial array of treatments. You say three month shots, I am on 4 month shots. So my intermittent therapy would be for 8 months. Then we wait and see. I am almost thinking about seeing Dr. Myers at that point in treatment. One area my oncologist varies from Myers, he isn't as convinced about starting me on Proscar or Avodart. Even in Myers book that type of androgen blockage after RP is unclear. But he applies it anyway to block dihydrotestosterone. My understanding is the dihydro-T is much more potent. And when HT fails and the disease appears to be refractory, it is because while the T-levels are very low, the cancer has become very efficient at using the the lower levels of testosterone, and very efficient at using dihydro-T. Many oncologists, including mine, apparently do not test both levels of these testosterones. Enter the Myers approach of triple androgen blockade. this consists of Lupron (or Zoladex), Casodex, and Avodart or Proscar. And if that does not do the trick, enter oral Ketocanazole three times daily.

On the diet. Well I'm trying. I eat much more fish and chicken. I need to eat less salad dressing but have increased salad consumption. I don't "burn" the meats any more but turn them regularly to keep the carbonization minimal. I could lose the red wines but I don't want to. Pom is now part of my diet but hard for me to digest. So now I am mixing it with something else. I haven't tried the fish oil supplements (omega-3) yet, but may as soon as I can find the ones he endorses. The problem with fish oil for me in temperature. It is very difficult to store the fish oil supplements without 117 degree temps we sometimes get here in Vegas. Shipping them to me will be as effective as a UPS truck can be delivering in a timely manner so that the supplements don't get warm. Not as easy as it sounds. I have some of my wines shipped to me from Napa and they get here, well packaged, but warm. As a wine lover I can taste the effects of the wine being warmed. I can understand what Myers says about the importance of proper storage of the omega-3 supplements.

I'm curious when you start to feel more normal. Let me know so I know what to expect. I see all kinds of warnings about side effects with HT, I see them state many will go away after treatment, but no time tables are given.

Tony

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 7/25/2007 9:27 AM (GMT -7)   
Tony, Vet, AEG, Rick & Dana, & Swim,
 
I agree with Sterd, you folks are both informative and encouraging for those fighting this aspect of our battle.

Tony - an excellent source of omega-3 that is not quite so temperature sensitive is cold-milled flax seed.  A lot of stores (Like Whole Foods - not my company - deliver these products to their stores in refrigerated dairy trucks.)  It tastes fine added to yogurt, cereal, or salsa.
cool  Flax oil is also very sensitive to heat.  DO NOT COOK WITH FLAX SEED OR FLAX OILS AS FLAX OIL BECOMES (...toxic, furniture polish...) LINSEED OIL AT - I THINK - OVER 140 DEGREES.... 
cool  about 10% of the (lineaic?) omega-3 oil in Flax is transformed by the body into the "Fish Oil" type (dhea?) of omega-3 the body uses.  So the daily dosage should compensate.  It is still less expensive than buying salmon or fish-oil capsules every day  - and fresh and vegetarian.

Fight the good fight.  Run the good race!
Whatever your current mental battle to remain positive, know this:
  You have helped many here and we are always prepared to return your kindness!

CCedar
ICTHUS!


2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 7/25/2007 10:45:51 AM (GMT-6)

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