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Hormone therapy, to start or not?

Murray01
Posts: 3
Joined: Oct 2011

Here's my story:

PSA 3.3 on 1/2003
PSA 4.4 on 1/2004
Biopsy on 2/14/2004, Gleason score of 3+3. Clinical stage T1c
BNS robotic LRP on 6/22/2004 (age 55)
Post-op Gleason Score was 4+5. Tumor was present in both the right and left lobes, estimated to involve 30% of the entire gland. There was extensive invasion of both right and left seminal vesicles. Focal extracapsular extension was identified in sections from the right base/seminal vesicle interface. Microscopic lymphatic invasion was also identified in this area. There was extensive perineural invasion in these sections. Although no tumor was seen transected in these sections, cauterized tumor was identified less than 0.2 mm from the nearest inked margin along the left anterior base, adjacent to the seminal vesicles. According to report it was difficult to entirely exclude that tumor extends beyond the area due to cautery artifact. Other than this area, the margins of excision are negative.
After surgery PSA was <0.1 until 1/2009 when it went to 0.1>. PSA at <0.1 for 4 1/2 yrs.
Underwent 37 treatments of radiation therapy starting 6/2009 when PSA was 0.2. Radiation didn't stop PSA from going up.
PSA is currently at 2.5, doubling time for PSA is about 3 months, doc is recommending hormone therapy, lupron shot every 3 months.
Everything I read, there is so much debate from the "experts" as when to start hormone therapy.
I would appreciate hearing from anyone who has started hormone therapy, side effects, etc. and to those of you who have decided to wait until the cancer spreads and then go on hormone therapy.
Thanks.

VascodaGama's picture
VascodaGama
Posts: 1517
Joined: Nov 2010

Murray

Welcome to the board.
Definitively you should not wait for apparent symptoms to start hormonal treatment (ADT). The trigger for starting ADT in high risk cases (Gleason score 9) with confirmed metastases is THE SOONEST.
This means that once recurrence is confirmed (three consecutive rises of PSA after nadir) and in cases with PSADT of less than 9 month, ADT should be started, expecting that the patient is not yet systemic. Triggers are used in low risk cases with low nadirs. In intermittent ADT protocols, triggers establish the start of a cycle on drugs.

I also failed RP and SRT. My Gs is 5 (6 by the new norms) and nadir PSA got me to 0.05 13 months post SRT. Recurrence was established at a PSA of 0.26 (PSADT=9.6 months) and the trigger for starting ADT was PSA=1.0.

I recommend you to discuss with your oncologist and start ADT as soon as you are ready. You could discuss about ADT protocols which add other drugs to Lupron to effectively control any advancement of the cancer, specifically, antiandrogens and 5-alfa reductase inhibitors.
I also recommend you to get a Testosterone test before starting ADT to serve you as a base line to compare with future test results and certify for drugs effectiveness.
Patients on ADT should also check for bone loss (osteoporosis). You could get now a bone density test too.

Here is a link of my story with the side effects. http://csn.cancer.org/node/224641

Wishing you a good start.
VGama

Murray01
Posts: 3
Joined: Oct 2011

Thanks for your reply VGama. I guess the problem I have with starting with Lupron is the quality of life issue. Right now I'm almost 63, feel great, work out 5 times a week, 3 to 5 miles on the elipitcal or treadmill, plus some weight training, play golf, etc., etc.. I've heard of too many guys going on this and then feeling like crap. I've read about just taking anti-androgen monotherapy (AAM) by itself (not in conjunction with LHRH agonists), fewer side effects and just as effective, not sure if this is true or not. I've also read that it is important to take an AAM 10 days to 2 weeks before the first shot of an LHRH to prevent a biochemical flare. I'm also concerned with swelling of the breasts (gynecomatisa) but I've read that if you have radiation to the breast tissue before the shot, this will prevent that problem. Anyway I plan to discuss all of this at my upcoming appointment (second opinion).

Murray

TitusvilleBills
Posts: 23
Joined: Nov 2011

Hi Murray
I am 47 years old, tested positive on 10/13, my PSA were 91, 110, 118, my Gleason is a 7, CAT Scan came back clean as did my Bone scan. I've struggled with the right treatment, but recently decided to go with what is being referred by some as a "triple prong appraoch". I received my first Lupron shot on 11/3, and am taking Advart and some other pill to bring my prostate down below 50 mg (presently at 60mg, enlarged prostate). I will start radiation in Dec, and seed implants afterwards. I know it has only been a few days sine the shot and was told it may take 2 weeks before I feel the side effects (no problem with ED yet, but I expect that soon due to the medicine). My plan is to remain positive and do everything I can to make the most out of each day. It may be easier said than done, but I will "Find a Way" (Merill Hoge) to get better, and keep smiling daily.
Take care
Jim

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

Your age is a big factor here. Hormone therapy might keep your psa number down but it will not mean much. If you want a better quality of life you should have no therapy. I had Gleason of 9 and took one shot of Lupron to shrink the prostate before radiation which killed all the cancer in my prostate. I am now 60 yrs. old and have survived over 8 years after being given a 50% chance to survive 2 years. I took no more curative treatment since 2003. It was the right decision and I have no regrets. Now hospice takes care of my needs to keep out of pain and it costs me nothing. You have to assume the cancer has spread, it will not go away and then deal with it from there. There will be side effects if you do treatment and a lot less if you do nothing. Lately I took radiation treatment on tumors of spine and ribs and it really knocked down the pain. I still do tutoring at a local university. The best thing one can do is to eliminate all stress from your life. I hope you make the best decision for you and wish you all the best. Remember the doctor makes a lot of money to give you those shots. A whole lot.

Murray01
Posts: 3
Joined: Oct 2011

Thanks for replying 2ndBase. I'm all about the quality of life issue, that's why I'm wavering on doing anything right now. Almost 63 and feel great! As the saying goes, "not as good as I once was, but good once as I ever was". I'm a bit of a cynic myself when it comes down to the best treatment and what the docs recommend. It seems everything I read, no one really knows what the best treatment is or what and when to start it. I'm going in for a second opinion and ask some more questions before or if I start any treatment.

Murray

Old-timer's picture
Old-timer
Posts: 109
Joined: Apr 2011

My story may or may not be useful to you, but I will share it. I had radical prostatectomy in 1991 at the age of 65. Gleeson score of 7 (3+4) and PSA at 4.0. PSA dropped to 0 after surgery and remained at that level 13 years. In 2002 it was .2. It took two years for it to reach 1.16. I had 36 sessions of external beam radiation in 2004. My PSA continued to rise. My urologist said I should go on hormone therapy when the PSA reached 5.0. In 2005 I moved to another city and changed urologists. The new person said we could wait until the PSA reached 10.0. It reached that level in 2007. For reasons too lengthy to explain, we ended up waiting until 2008. By then the PSA was at 20.4. In June, 2008, I went on hormone therapy. The PSA dropped to less than .1 and is still at that level after three and one-half years. The side effects of the hormone therapy have been tolerable. I expect that this would be more of an issue if I was a young man.

I do not recommend this schedule; I am not qualified to do that. But it has worked well for me.

Good luck to you.

Jerry

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