Prostate Cancer Network
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Looking for hormone side effects

Diagnosed 5 Oct, PSA 11, biopsy 12 cores, all positive. Lowest Gleason 6 (3+3), remaining 11 a mix of 8's and 9's (4+4), (4+5) & (5+4). Surgery out. Hormone + Proton and Seeds + IMRT my two options. Looking for info on hormone side effects when used to shrink prostate prior to Proton's. Looking at 6 months to 18 months of hormones. No I don't know which ones, yet. I am looking for someone that had hormones for a limited time (less than 2 years) before stopping them. Did you return to normal, how long did it take, If not back to normal, how close? What works and dosen't work?

Finding much about long term hormone use, not so much about short term effects and recovery.

Thank you,

Rich

17 Replies
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So sorry that you are here. But it is a great group of men and women here. You are not alone! Have they done any scans to see if it has metastasized? If not please push you doctors to do so ASAP.

There have been some major results from trials dealing with hormonal treatments that where published this summer. In short, they found significant advantages for using first and second line treatments at the same time. This approach may offer some short term advantages. In any case, with your advanced cancer there is a good chance that they will keep you on some form of hormonal therapy even after your prostate is treated. If so, you may want to start the dual treatment now.

Traditionally they would put you on just one hormonal therapy like Lupron. When that failed then they would go to a second one. Here are some references:

pcf.org/news/breaking-news-...

nejm.org/doi/full/10.1056/N...

I am currently taking both Lupron and Zytiga.

Another advancement is that they are finding positive results with surgery, even when the cancer had metastasized to the pelvic area (but not to the distant organs or bones). That was my case and why I asked about the scans. I was a G (4+4, 4+4, 4+3) where it had spread to my pelvic lymph nodes. I had surgery where they removed my prostate (74 grams) along with 14 lymph nodes, one being “100% cancer”. Not saying that surgery is right for you. Just want you to know that there has been movement on when to operate. I went on to have both hormonal and radiation treatments.

Another generic source for information comes from the prostate cancer foundation:

PCs.org

This may not be exactly what you were asking but I hope it is of help. Please know that everyone here is on your side.

Walt (a chemist not a MD)

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Dr. Who, a most entertaining individual and long running show. A man who finds a way out of the most dire situation. Walt, thank you for taking the time to share your experience and knowledge. I have no background and am seeking information from everyone I meet. My situation is somewhat different than yours, but there are enough parallels that your info is relevant. They have done a CT & Bone scan, both negative. I pray for your continued success and that good health will stay with you.

Thank you,

Rich

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Thank you for your words. It is very, very great news that your scans where negative! Good luck going forward.

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You ought to look at:

amazon.ca/Androgen-Deprivat...

I think it's the only book devoted solely to ADT treatment, and its side-effects.

. Charles (bias -- I know the author)

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Hi Charles, Thank you for the info. I'll check on the book.

Rich

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One of the side effects of hormone treatment is hot flashes. In my experience I have found that most MALE doctors will mention them but will minimize their effects and for a majority of men they aren't a problem. However, everyone is different and because I had to have an orchiectomy (testicles removed which is a permanent form of hormone treatment) I suffered from frequent hot flashes for 18 years, sometimes as many as 2-3 an hour. Finally my new urologist recommended a testosterone injection once month as he felt I was far enough out in time from being treated for PC (24 years) and that stopped the hot flashes with no effect on my PSA. I still have my PSA checked every 6 months to make sure all is well. Good luck.

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Congratulations on 24 years! I have read about the side effects and it does seem that the medical community does 'gloss over' most of them. I will meet my 'hormone doctor' on Nov 21st. It will be interesting to see how forthcoming he is on the side effects. I have some other medical issues that may remove hormone therapy from my short list of treatments, will know more Tuesday night. I will pray for your continued good health.

Thank you.

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I was on eligard (similar to lupron?) for six months. That was long enough for me to develop gynecomastia (boobies). Radiation to the breast area is said to prevent this but urologists seem to care only about the disease and not the side effects. You would likely have to demand this. Sorry to see that you've joined this club but this is a good place to get advice and support. Good luck.

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Thank you for your information. Was this prior to protons or as a follow up? Were they trying to shrink the prostate? I think that is what the proton folks are planning for me, shrink the prostate, get a better target for the protons and then stop the hormones. At least that is what I am planning on. :)

Hope you are doing well, I'll say a prayer for you.

Rich

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Thanks. This was prior to scheduled external beam radiation treatment. After prior TURP surgery I was not a candidate for RP surgery. Why were you ruled out for RP surgery -- was it due to spread outside the prostate? Have you had your CT and bone scans?

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CT and Bone scans have been completed and returned negative for cancer outside the prostate. Surgery was removed from the options by my urologist and myself. Based on biopsy, surgery wasn't an option for solving the problem.

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Rich,

Before you get to tied up in hearing about the side effects remember that those you learn about are ones that you MIGHT experience. Each man will experience different side effects and with a different intensity. There is no way to predict what side effects and how tough they will be from one individual to the next.

As far as recovery, that too is different from one man to the next. Younger men tend to recover more quickly than older men, some men will never recover. The older a man the higher the risk that they do not recover or that recovery will be slower.

To learn how to deal with a diagnosis, your personal attitude, dealing with doctors and living your life with cancer go to my new website at cancerABCs.org

Joel

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Good morning Joel. Thank you for your reply and a different viewpoint on my question. I needed to think about your reply before I answered. I understand that attitude and outlook are very important in dealing with the issues prostate cancer, or any serious disease, presents. However, if someone invited me to go for a walk and I found myself in the middle of the 'Running of the Bulls' I would have appreciated the heads up and the experience of other people that had been there. Some of those stories would be horror stories of injuries received while others would be more tame recountings of scares and discomforts endured. While each story would be unique to the individual, their shared experiences would build a general picture of what to expect. Mental and physical preparations could be made to address the most commonly experienced effects. Nothing is worse than being blindsided by something. Especially if the effects are known but not shared. Temporary loss of libido is one thing, complete loss for the rest of my life is a completely different situation. Temporary physical discomfort is one thing. Long (years and years) term pain is a horse of a different color. I understand radiation and radiations effects on tissue. What I don't know (and what honest doctors will admit) is the effects chemical castration will have on me. They are very good at turning the switches in the male body off. They have no way to turn them back on.

I have to make a decision that will affect every day of the rest of my life, as has every other man on this site. That decision also affects my wife, in some ways even more than it affects me. I just have to endure my choice. She has to endure it with me and also watch me endure it as well. That is a very hard job, watching. A positive attitude will make the coming days a little easier, but knowing what to expect or look for will provide more armor for the body and soul.

I did go to you site and found very useful information that will make my journey easier and hopefully less painful. If my reply sounded like I did not care for your assistance, that is not the case. My question was like asking what is 2 + 2 and receiving an answer that indicated the great usefulness of knowing math. Very useful in the big picture, but somewhat limited in the context of the original question.

Please, continue to provide your answer to anyone that will listen, Math is a very good subject to know. And attitude can work miracles.

Thank you Joel and may God continue to bless you.

Rich

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Sorry you have reason to join the group. But it is a good group. I am glad to see you appear to be getting good treatment and advice. Hormone treatment doesn't work on everyone. After surgery and non-proton radiation failed I went on intermittent Lupron and found it works great for me. I prefer the Elegard procedure under the skin over the lump of Lupron in the hip. Side effects besides hot flashes have been weight gain, lack of energy, body aches and not much interest in sex. I have been on intermittent for 15 years. But I can tell you the 6 months I'm off treatment I feel much better.

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Hi Steve. Glad to hear you have had 15 years and that overall they have been good ones. I am also sorry that I am here. I also have seen and read of the wonderful people that are part of this group. Their selflessness and desire to share their stories and experiences with total strangers brings hope to my heart and a tear to my eye. I know there is a light at the end of the tunnel and I am really starting to believe that it is an exit to a brighter and better place for us all rather than the head light of a freight train. God has a plan that includes all of us. We have a part to play. The challenge is determining our part and our lines. The choice is ours, like the choice of our treatment. We have multiple paths to follow. We choose our path. Free will is our blessing and our curse. Outside forces, whether they be friends or doctors can provide us with advice, but the final choice is ours.

Wondered a bit astray from your response, I apologize.

Thank you for your advice and kind thoughts.

Rich

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Sir ... I have been treating my prostate cancer non invasively for 10 years now...original Gleason score 6 now....with great success...my recent PSA was .5. Please please I urge you to contact them at this email address and tell them of your situation: choi@nutrition2000.com ..BEFORE you do anything medically invasive. ..including the hormone therapy & seeds you mentioned ..or the Proton therapy. THEY can help you.!! I am living proof! If you want to speak to me by phone I will be glad to talk to you 440 227-0344.

I am in Ohio

also you can go this other associated website : nutrition2000.com/ and read about the testimonials of men they have helped in the past.

God Bless you Dave

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Good evening Dave,

Thank you for the information. I will look into it.

Rich

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