Last week I had another PSA test and it recorded 0.57 5 months after salvage radiation. Before RT to the prostate bed and pelvic area PSA was at 0.25. 1 month after RT it didn't decrease and it was already at 0.35.
So today I had another PSMA PET Scan which came completely cleaned. My doctor, who I appreciated a lot, came to speak immediately with me and advised on starting hormone therapy now for being on the safe side
So I am taking for 30 days a pill of Bicalutamida 50mg each a day. In 15 days from now I am starting the first shoot of Goserelin, sold under the brand name Zoladex among others, 10.8mg each 3 months for as long as I can take
This is something I didn't see coming before RT. I was so much confident that Salvage radiation would do the trick ... What now? I am calm, but with my head spinning! I just need a few comfort words!
Written by
Paulo1968
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Non-detectable recurrent men often can be maintained for a long time. Some doctors are trying a short course (≤ 12 months) of ADT+ a second-line hormone therapy. It seems to work!
Hi, sorry to hear your news. A rising PSA is always worrying. Hopefully the Zoladex will knock it down and keep it that way for some time. There are other medications such as Zytiga, Xtandi, Erleada and Nubeqa and more on the way which can be added now or at a later date where needed.
I can only imagine the shock to the system that your news is having on you, you will get through this. I have been taking Zoladex almost 3 years; it’s not a picnic but it could be much worse.
Every man’s experience of androgen deprivation therapy drugs like Zoladex or Lupron etc. is slightly different at least. If you experience side effects that cause you difficulties there are mitigation options available. There are many men on this site that will be helpful to you.
For now, just realise that you may be grieving the loss of the life that you assumed that you would have and are facing an unknown different future; and give your self permission to grieve.
You don’t need to decide much at the moment (the Zoladex will control things at least for now), give your self time to catch your breath. You may want to review your situation with your doctors and perhaps add a medical oncologist going forward, but give your self a little time to adjust.
I hope that my words will bring you a little comfort, you are not alone with this.
Thanks very much for your words Hugh. Indeed yesterday was a bit of a turmoil. I had a good night sleep and I have woken up feeling as before. This is the strangest part! Medicine allows you to know what you have without you feeling any symptom. It is quite strange actually!Maybe I will face this differently in a month after the side effects start showing up! I will have time to think this all over in a different perspective, because before I was facing a battle that I was expecting to mean a cure and not having to leave with it for the rest of the life ...
I wonder if I should also look for the other group?! I mean advanced PC?
Let me start by telling you that I am very impressed by your command of the English language. I wish I could speak any foreign language as well as you speak English.
I'm sorry to hear that your salvage radiation did not succeed. It is my understanding that, even under good conditions, salvage radiation produces long term success less than 50% of the time. It was still worth trying because, if it did succeed, you could be home free with no more treatment needed.
Now you have a new challenge ahead of you. That challenge is to face the future under new conditions. You may feel isolated and alone, not like other people that you know who live lives without the effects of androgen deprivation and don't think about this particular challenge. But in fact you are not alone. Just in this one online support group there are almost 15,000 members, a small fraction of the total prostate cancer patients in the world. Most of us have undergone androgen deprivation therapy. Many of us adapt. We counter the tiring effects of ADT with regular exercise good diet. Many of us counter the loss of libido by engaging in sex even though we have no interest in it. To our surprise, we find that, as our partner gets aroused, it arouses us too and the interest returns, at least for that session. Some of us can successfully use "BAT" (Bipolar Androgen Therapy) to give us vacations from ADT without shortening our lives. Many of us live for many years and there are quite a few men in this group who have lived more, sometime much more, than ten years on ADT without ever having any cancer symptoms. Many of us have found that the things we value most in life - family, friendship, music, reading, helping others, and more are all still there for us and all still just as meaningful. Life goes on and, if we try, we can make it a good life.
I don't know if these ideas qualify for you as "comfort words". I sincerely hope they do. I know that it will take some time before your head stops spinning and you adjust to your new situation, but I think you will and I think you have a good chance for a very good life ahead of you in spite of this setback.
We're all behind you, all wishing you the best of luck.
Thank you very much for your words Alan. Your message really helped me. Life has much more around and I have to start enjoying the small things that we usually take for granted! Yes I have many interests in life and I have to make them more important. This group has helped me on my discovering PC and I am sure it will move on helping me live with it, even with difficulties. I will keep my eyes here for sure. I am in the initial phase of accepting a disease that will be with me for the rest of my life. As I said in my previous post, I had thought I could still had a remission one day! This is the mindset change I have to make.
Thanks again,
Paulo
PS - thanks for the compliments about my English Really appreciated! Then a thing I am doing quite right
I'd like to add one more piece of advice for the future. You have been treated by a surgeon and by a radiation oncologist. Now, if possible, you should try to find a good "medical oncologist", a doctor who specializes in the use of hormone based and other drugs, reads the latest research and clinical trial reports on new drugs, drug combinations, countering side effects, working with BAT, and so on. Cancer is a very complicated disease and our understanding of it is still very much incomplete. The literature and research is vast. Doctors just can't keep up with all of it, so they pick the limited area of particular interest to them or in particular demand by their patients. If you can find a good one who specializes in drug treatment for advanced prostate cancer, that will be great.
Here's some extensive advice from Tall_Allen, our local prostate cancer guru, on how to find a doctor: prostatecancer.news/search?... . His advice is oriented towards patients in the United States, but I think a lot of his advice here can be useful to patients living elsewhere.
Thanks, I will have a look to that link advise. In fact this radiation oncologist told me she made this initial prescription together with an oncologist, who is her hospital colleague and who I had several appointments before I had radiation. So I will be followed up by a new team of doctors ... but of course if they are good or bad it will be difficult to judge. I will read that advise and try to be inquisitive as possible. Thanks again Alan.
Hi PauloI'm glad all feel your getting the right treatment you feel you need. It's can be so easy to feel low mood I always just make sure I get on with life by keeping my busy and continue to do my 3 monthly PSA test following Radiotherapy 2 years ago. Stay happy that's one of the best therapies.
I totally understand how you feel, Paulo. I had salvage RT a year ago when my PSA was .42. In 6 months it was down to .16 and I was feeling hopeful. Three months later is was .19 and recently .22. It’s a great disappointment and makes your stomach sink… at first. Then we pick up the pieces and forge ahead. I have not yet been advised that I should start ADT, but I’m in no hurry for that. I had 1 shot in 2016 and stopped… it was very difficult for me. Good news though… my PSA went down to ZERO after just that one shot, and for many months. The only thing to do is stay close to family and friends for support, eat well, exercise, and pray for the best. On the spectrum, so many are way worse off than us with no options. Thank God for the little things. Take care my friend.
Thanks Bild9946, I will try to keep spirits high no matter out ... I have read so many things about side effects that future may not be as bright as I had expected a few years/months ago though. All the best to you too.
Hi Paulo, I am so sorry to hear your news. We have been following each other since surgery and I didn't expect that you would be in this situation and just wanted to say that I am thinking of you. I have read the posts above and some wise words. As tough as it is do try to keep on living as much as you can. With luck the hormone treatment will not have side effects that are too bad. Take care. Bill
Thanks Bill, Indeed I was not expecting salvage radiation not to work out, particularly as I didn't have any scans showing anything ... I will try to keep my head up. All the best to you too
Hi Paulo, I chatted with you this site several years ago. You were so encouraging to me! I just went back on this site and read your posting. I am so sad to hear of what you are going through. I want to say I am thinking about you and wishing you the very best. Sincerely, Rick..
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Really appreciated! Then a thing I am doing quite right 
Cancer undetectable but PSA is rising.
Getting things finished
I Simply Don't Understand...
PSA undetectable for years, now 0.11
