Questions about hormone therapy...

[JetBoy]

Greetings,

I was diagnosed with prostate cancer, Gleason 8, no indication of metastasis in January. I just had a radical prostatectomy, including the removal of nerves. Post surgery pathology downgraded the two legions to a Gleason 5 and a Gleason 7, with no indication of any cancer touching the anterior wall.

I have to wait three weeks before taking my first PSA, but it is my understanding that if I don't drop down to a completely normal level (1-4), my doctor will recommend a treatment of radiation and hormone therapy.

I've been reading a lot about hormone therapy and it's overwhelming. From what I can glean, even short-term hormone therapy has the effect of:

- chemical castration

- shrinkage of testicles to the point they cannot be felt

- shrinkage of the penis

- hot flashes

- weight gain

- tender breast tissue and breast growth

I'm having a hard time wrapping my mind around this. I also feel like I've been strung along - that doctors have held back on some of these symptoms, probably to ease the blow of this very emasculating process.

Had I known all of this before hand, I might have made a different set of decisions. And I'm pissed it didn't have all the info.

Can those of you who have experienced this path give me any information - physical and psychological - that might be helpful?

Many thanks.

- M

[Tall_Allen]

You should be waiting 3 months for your first PSA, not 3 weeks. At 3 weeks you will still have PSA from the prostatectomy in your blood.

You should have started penile rehab by now.

[JetBoy in reply to Tall_Allen]

You didn't answer my question.

[Tall_Allen in reply to JetBoy]

It is always best to stay in the present moment. "What if's" serve no purpose other than to create anxiety.

[JetBoy in reply to Tall_Allen]

That's a load of bullshit.

[JetBoy in reply to JetBoy]

It also smacks of authoritarianism. Don't look ahead and do what you're told.

[Tall_Allen in reply to JetBoy]

If you want to worry yourself sick, it's your life. Most of us have learned to take it one step at a time.

[JetBoy in reply to Tall_Allen]

Your attitude is condescending and superior. And you're also incorrect in assuming that everyone need not know what happens next. I don't care to engage with you ever again.

[JoelCairo]

Like you, I'm 62, and I started Lupron 2 months ago after my PSA level began to elevate post-surgery. I am doing a combination of ADT and radiation therapy. It has been challenging dealing with side effects, but to answer your question specifically, I have no sex drive at all and erections are impossible. I have not noticed any penile shrinkage since my surgery when I lost length and girth. There's been no gynecomastia or breast tenderness, though I was told that side effect is much more likely with oral ADT, whereas I am doing the 6-month depot injection. I think what's been most shocking for me is my complete lack of interest in all things sexual. I have a wonderfully understanding partner, but it feels so unfair to him. I'm told that I will have an increase in libido and erection capability once treatment is over. I frankly don't believe it; but if it's true, then I will accept it as a gift from the universe.

[JetBoy in reply to JoelCairo]

Thank you for your frankness and honesty. I cannot tell you how much I appreciate it.

[SeattleDan]

I was younger than you when I had my prostatectomy 12 years ago, followed not long after by radiation, then ADT, etc.. I too wasn’t told everything initially, but got past the initial anger and stress and am living a contented life with an understanding husband. Definitely a changed stage of life, but not a bad one. TA is correct in recommending penile exercise- that can make a difference. On the side effects everyone is different (no weight gain at all for me- keep exercising!). Happy to talk more with you if you wish.

[FLLStan]

I had Robotic Surgery at a local hospital over two years ago. No nerves were spared. My advice is don't jump to conclusions that you will need more treatment prior to being told you will need it. I know guys who did not need any treatment after surgery. The hard part is the ongoing PSA Test. Like Tall Allen said, is best to deal with your rehab after surgery. If further treatment is needed, I recommend you get second and third opinions prior to any treatment.

My first PSA after 3 months was .05 . Two more 3 month test followed that were .03 . One year after surgery my PSA jumped to .1 . Salvage Radiation and ADT were recommended as the next treatment. My second opinion was at an NCI designated Cancer Center. I was assigned a team that included a Radiation Oncologist and a Medical Oncologist. After 3 months of scans and bloodwork, the team of doctors said the treatment would be 34 radiation treatments and 4 once a month shots of Lupron.

At the end of the treatment plan visit to the Medical Oncologist, the Nurse Practitioner and and I were left alone for final paper work before leaving the office. He saw the fear in my eyes. (I had my mask on ) He told me this was short term, a chance for a cure, and things would be better in 6 months. Don't back out now. I signed the papers.

The monthly Lupron shots did not have many side effects until about half way through the 3rd Month. The side effects I had were the shrinkage of the testicles, no libido, some hot flashes, and some weight gain. The Radiation treatments made be tired.

During my weekly and monthly visits with my team of doctors and their support staff, side effects of the treatments were discussed. Suggestions of how to minimize the side effects were discussed in detail. My treatment team was there for me. Two months after the last Lupron shot, I was feeling better. At 4 months, my testosterone was back to normal, my PSA was undetectable. My next PSA test is in late April.

[JetBoy]

Thank you. This helps.

[thethinman]

I've been on ADT(Eligard)for almost a year. I'm also on daily 5 mg. Cialis. Sexually I no longer have the jump your bones urge that I used to when I saw a man that appealed to me. However I do still enjoy talking about sex and exchanging fantasies with guys online. I haven't been with a man since starting but definitely feel like the prospect of doing so is appealing. I can no longer top as in the past, although I can get satisfactorily firm and even orgasm with enough effort although orgasms are now dry. I would love to engage in oral and would love to cuddle with the right man. I have not gained more than a couple pounds, but I'm a very disciplined eater and walk a half hour every day. My energy level has not changed noticeably. I do have hot flashes, but their manageable, and I have lost some hair from my chest. Overall I feel I'm one of the lucky ones on ADT but proof that you can survive it. All the best to you going forward.

[JetBoy]

That's so helpful. Thank you!

[Jordache]

I was on lupron for 18months after brachytherapy and 5 day external radiation. Yes no sex drive but I’d rather deal now then wonder later what I could have done better if it returned. Tim Allen is right on point and is very knowledgeable. I will attribute your shortness to anxiety of the unknown. Yes some shrinkage which is more severe with removal. Hot flashes were bothersome but worth it. Erection are back and sex drive more than before. And I still ejaculate with is wonderful. Follow Dr and stay positive.

[JetBoy]

Tall Allen is a know-it-all and presumptuously advised me on something I had not requested advice on. He should learn some boundaries. It is absolutely my right to know what possible outcomes a treatment might cause. That is part of the decision making process that leads to a treatment choice.

It is MY choice, first and foremost. And I will follow the doctor if his recommendations meet my quality vs. quantity of life quotient.

I don't know where people get the authoritarian notion that they are to obey whatever the healthcare community deems their treatment path. Follow daddy and don't question?

I do appreciate your reporting of what you encountered on your treatment journey. Thank you.