Should I refuse Hormone treatments?

flagstick · New User Joined: 17 Jul 2009 Posts: 3

I'm 60,and had a RP in April. The pathology came up with PT2c Gleason 9 with positive margins. My PSA went from 12 pre=op to <.1 in June. I am going to ge Adjuvent Radiation, but the Radiation oncologist wants me to have Hormone therapy for at least a year as well. I dread the side effects of HT, and I think I will refuse it. Am I making a mistake?

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

I have a few thoughts about this. I'm sort of ambivalent. In my own personal case, I was glad not to have HT and SRT in combination. Having SRT alone avoided muddying the water--either it worked or it didn't. If my PSA had been suppressed by HT, I'd be wondering whether the radiation worked.

But I had Gleason 3+4=7, not 9.

There have been recent studies showing an advantage to the combination.

If you go with HT and decide you can't tolerate the side effects, you can stop. As I understand it, in the short term the worst thing is hot flashes. Yes, you will lose your libido (as one guy who had his testicles removed told me, "every woman is about as attractive as my sister") but you will probably not care about that once it happens. The worst of the side effects build up over years--not during the short term you would have the treatment.

What your doctor is advising is well within established medical practice, and you should feel comfortable following his advice. If you think there's a better path for you, I would seek out a second opinion from a center of excellence in prostate cancer care.

I wish you the best. Please keep us informed.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

johnw100

[quote="flagstick"]I'm 60,and had a RP in April. The pathology came up with PT2c Gleason 9 with positive margins. My PSA went from 12 pre=op to <.1 in June. I am going to ge Adjuvent Radiation, but the Radiation oncologist wants me to have Hormone therapy for at least a year as well. I dread the side effects of HT, and I think I will refuse it. Am I making a mistake?[/quote]

Yes

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

I agree with johnw100, Yes.

Your doc is prescribing the gold standard of care, given your circumstances.

My Hubby is on Casodex and Eligard after having a RP and is now taking radiation therapy.

He has hot flushes and isn't as patient as he used to be....*somedays*, not all the time.

Hot flushes are a small price to pay, IMO.

I've had them for years.... Wink

mkane09

Not so fast. Flagstick, I am EXACTLY where you are at: post DaVinci, Gleason 9, PT2c, positive margins. I had SRT which finished the end of May. One of my doctors wanted to start HDT, but Dr. Joseph Smith at Vanderbilt said there was no reason to rush to HDT.

On top of that, I AM concerned about side effects. I know many men "only" have hot flashes, but others have severe hot flashes, significant weight gain, develop diabetes, and long term, osteoporosis and cardiovascular disease. How do you know which group you will fall into??? I think there are very significant quality of life issues that revolve around HDT and I don't think anyone can flatly say "Yes, you're making a mistake." I think Hawke hit the nail on the head in a separate post. Quality of life IS very important, and I think the meaning of that varies for every man (and woman). If being on HDT means a) gaining another 20-30 pounds, b) becoming diabetic, c) having hot flashes bad enough that I can't sleep at night or practice my profession, d) develop osteoporosis and spinal compression fractures but live 10 more years vs. none of that crap and I have 4 good years of activity, golf, riding motorcycles, hunting, fishing, being able to work, well, I'm taking the 4 good years. BUT, I'm not married, don't have a current S.O., the rest of my family is already dead, so my situation might be very different from yours. You have to make this decision for yourself. No one else knows what is in your heart and your mind. To me, there is a big difference between existing and being alive. YMMV, and, as always, with a buck and a quarter and my opinion, you can still get a large coffee at McDonalds.

Peace....

mkane09
_________________
PSA 6.48, biopsy Gleason 3+4, robotic prostatectomy 9/17/08, pathology Gleason 4+5, pathologic stage T2c, positive margins, first post-op PSA 10-15-08 0.10; 2nd post-op PSA 0.18; SRT completed May 22, 2009. 1st post-radiation PSA, 8-4-09, <0.06.

flagstick · New User Joined: 17 Jul 2009 Posts: 3

Thanks all. I decided to go with the hormone treatment. The data clearly shows a chance for a better outcome. I'll keep you posted

johnT · Senior User Joined: 27 Apr 2009 Posts: 175

Flagstick,
the Prostate Cancer Research Institute web site has a lot of information on the side affects of HT and how to control them.
Excercise is the most important as it will stop muscle mass loss.
also get a bone density scan as a baseline; there are drugs that can stop bone loss. Ask your doctor about Femera, it stops breast growth. There are some meds that can help hot flashes, but there is nothing that will stop the libido loss.
Good luck, there are many men that have been on HT for over 10 years with good results.
JohnT
_________________
psa at diagnosis 40 in nov-08
gleason 6 and 7
Treatment choice seeds and IMRT

G2e4n3e4 · Regular Joined: 13 Apr 2009 Posts: 25

Hi Flagstick,

I had seeds in Jan 08 which failed and started Lupron 30 Mg injections every 4 mos in Apr 09. Hot flashes are a nuisance, some pretty good sweating, but not incapacitating. May be putting on pounds around the waist - maybe from lack of activity - had a lot of fatigue until early afternoons until recently. Now doing pretty well all day. Uro has me on bone supplement (Prosteon from Therologix) to counter osteoporosis side effect. The cost is reasonable. Maybe the other side effects will appear later, but at 70 (next month), probably something else will get me before the cancer or the Lupron side effects. See my signature for details. I think you made a sensible decision. Our choices are very individual and personal. We need to be comfortable with them and with our docs.

Best of Luck with your treatment.
Gene in Md
_________________
Age 70 Dx Dec 07 PSA 8.4 DRE positive. Gleason 6 (3+3), T2 PC confined to prostate. Brachytherapy Jan 2008 failed rising PSA's. Began Lupron 30 MG ea 4 mos. hot flashes, fatigue. Occasional urinary and rectal bleeding. Aug 09 - PSA 0.5. Lupron is working!!! Aug 21, 09 - 2nd Lupron shot. Continuing hot flashes. Doc recommends weight lifting - 20 to 30 lbs. July, Aug, Sep. rectal bleeding - hyperbaric chamber treatments.

johnw100

[quote="flagstick"] I dread the side effects of HT[/quote]

Every treatment has POTENTIAL short term and long term side effects.
With some treatments like radiation and surgery, any resulting long term side issues can be permanent.

Unless Hormone Therapy is used for an extensive time, side issues are usually of a short term nature. ie if there are any acute problems they usually subside if the treatment is discontinued or an alternative medication is used.

My belief is that our potential outcome is often largely in our own hands: with any treatment, including hormone therapy, our personal approach plays an important part. If we strive to improve our lifestyle, with better diet and activity we can do a lot to improve our outcome and reduce some side issues.

One of my friends that I often mention here is a real inspiration. He was diagnosed with advanced PC at age 60 several years ago and has since used Hormone Therapy with success. He has remained active, plays a lot of golf and travels extensively.

Two good books worth reading are the publications by Lee Nelson MD, "Prostate Cancer Prevention and Cure, and Dr Charles Myers book "Beating Prostate Cancer:Hormonal Therapy & Diet" which is often mentioned here..

Lee Nelson included Hormone Therapy in his own treatment when he was diagnosed with high risk PC some years ago. He subsequently did extensive research into PC and published his comprehensive book on the subject. His book is very informative and includes a lot of information on various treatment options including hormone treatment.

Dr Myers also used hormone therapy for his own high risk PC some ten years ago. He used hormone therapy for a relatively short period, and has since successfully used it to assist many of his patients. To my mind he one of the top Medical Oncologists expert in this field.

Best Wishes.

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