Testosterone Replacement Therapy after RALP

Posted by jeb0505 @jeb0505, Sep 16 1:38pm

I get so many mixed messages about Testosterone Replacement Therapy, i've read contradicting information from different clinics/hospitals, etc., so it's hard to know where to begin.

My question is for those who have spoken to their doctor about this, and especially for those who are now taking TRT after surgery. First- what has your doctor said about taking TRT after surgery, and Second - have you been given any alternatives to TRT?

My T level prior to finding out I had cancer was sub 300 ng/dL, when on Test, my levels were raised to about 700 to 800 ng/dL... Following my diagnosis, i stopped taking T, and i could definitely notice a change for the worse. After surgery, it's noticable worse. By me, my wife, even friends notice a change in "me"... I talked to my doc about it, and he suggested waiting for 'at least 1 year after surgery'... well, surgery was in May, and i am seriously dealing with side effects.

Any help from those who have had similar experiences, is appreciated.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I had RALP in Feb2020. I have always worked out been active. My TEST before surgery was about 650. About a year after surgery I was just worn out feeling puny. I spoke with my urologist about TRT he said absolutely not. Dont risk it. My GP is mens and womens health specialist. She checked my TEST and it was 350. She said if I waited 3 years and had a PSMA PET scan with PSA tests every 6 months she would agree to TRT. I waited 3 years and had the scan. No cancer. I decided on the cream. My TEST runs about 720. I try to keep it somewhere around 700. I feel much better. I might add that my cancer was a gleason 3+3. biopsy was 1 out of 12. Post surgery diagnosis was small lesion with clean margins. My initial PSA was never higher than 1.2. All my PSA tests in last 5 years are < .01. I am 72 now.

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@tuckerp

I had RALP in Feb2020. I have always worked out been active. My TEST before surgery was about 650. About a year after surgery I was just worn out feeling puny. I spoke with my urologist about TRT he said absolutely not. Dont risk it. My GP is mens and womens health specialist. She checked my TEST and it was 350. She said if I waited 3 years and had a PSMA PET scan with PSA tests every 6 months she would agree to TRT. I waited 3 years and had the scan. No cancer. I decided on the cream. My TEST runs about 720. I try to keep it somewhere around 700. I feel much better. I might add that my cancer was a gleason 3+3. biopsy was 1 out of 12. Post surgery diagnosis was small lesion with clean margins. My initial PSA was never higher than 1.2. All my PSA tests in last 5 years are < .01. I am 72 now.

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With only one of 12 of your biopsy having cancer and a 3+3 you should not have had surgery. Your urologist must’ve been looking for some income. The standard now (and in 2020) is that you do not have surgery with a 3+3 you go to active surveillance and wait till it becomes more severe. 3+3 is not considered cancer you have to do anything about.

It’s a shame people don’t get a second opinion on this.

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The reason they tell you to wait a year before getting testosterone after surgery is that the cancer can come back. It took 3 1/2 years for me, but it did come back and if I had taken testosterone it would’ve come back sooner. Prostate cancer feeds on testosterone.

You are talking about your T level, but that is not the important thing. What was your Gleason score? What was your PSA before you had surgery? Knowing how aggressive your cancer was (Gleason) lets you know whether or not you want to take a chance of doing testosterone. If your Gleason score was above seven, you definitely don’t want to do it before or even after 1 year.

If you have a lot of fatigue because of the drugs, you are on get a lot more exercise, that can defeat the fatigue issues and make you feel a lot better.

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@jeffmarc

With only one of 12 of your biopsy having cancer and a 3+3 you should not have had surgery. Your urologist must’ve been looking for some income. The standard now (and in 2020) is that you do not have surgery with a 3+3 you go to active surveillance and wait till it becomes more severe. 3+3 is not considered cancer you have to do anything about.

It’s a shame people don’t get a second opinion on this.

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yes. I agree. I did not use Mayo clinic. But I doubt it would have changed my mind. I was reluctant to answer jebo505 because the subject has come up a dozen times and I understand that I am not normal. Thats why I mentioned all my statistics which jebo5o5 did not. I would have made a different decision if I felt that I had a greater chance of it returning. I basically forced my Dr to remove it. His advice was to monitor. He felt at a later time their were better ways to approach it if we ever needed to. My PSA was not even elevated from normal. I watched my Dad die from it by waiting and treating. Sure he was 87 with other issues by then. It was a personal decision to be done with it. Hopefully that pays off. As for the outcome, I am incontinent and no erection. I had not counted on either. Hopefully increasing my TEST to the 700 range is not a stupid mistake as well. Despite my urologist telling me not to. I have switched care to Mayo. But we have not discussed my taking TRT.

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My father died of prostate cancer at 87. When I was diagnosed at 62 it was a 3+4. After surgery it was a 4+3.

He had radiation and it came back and killed him. I decided to have surgery and that gave me 3 1/2 extra years before I needed radiation. No erection like you but I didn’t have any incontinence until about six years after radiation.

Taking a pill that really helps with incontinence, Myrbetriq.

Since you were a 3+3 you have a chance that the cancer won’t come back from adding testosterone? Just make sure to get your PSA checked at least every three months.

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@jeffmarc

My father died of prostate cancer at 87. When I was diagnosed at 62 it was a 3+4. After surgery it was a 4+3.

He had radiation and it came back and killed him. I decided to have surgery and that gave me 3 1/2 extra years before I needed radiation. No erection like you but I didn’t have any incontinence until about six years after radiation.

Taking a pill that really helps with incontinence, Myrbetriq.

Since you were a 3+3 you have a chance that the cancer won’t come back from adding testosterone? Just make sure to get your PSA checked at least every three months.

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good advice and helpful. Our Dads were on the same path. You and I almost. I was 68. I thought no way am I going to watch it and then have to make a decision. Genetically my chances were not good. I know it was early to make that decision but I have had 5 years of no treatments or issues with cancer. Seems if it starts back I am in good place to go for additional treatments. I recently went to Mayo mostly as a consultation and to run all the tests and what I can do from here. Probably incontinence is my biggest irritation. The testing revealed no issues with the surgery. I have to decide what to do. I have been on a 3 months PSA testing. This is the first time I went to 6 months. test is in October.

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@jeffmarc

The reason they tell you to wait a year before getting testosterone after surgery is that the cancer can come back. It took 3 1/2 years for me, but it did come back and if I had taken testosterone it would’ve come back sooner. Prostate cancer feeds on testosterone.

You are talking about your T level, but that is not the important thing. What was your Gleason score? What was your PSA before you had surgery? Knowing how aggressive your cancer was (Gleason) lets you know whether or not you want to take a chance of doing testosterone. If your Gleason score was above seven, you definitely don’t want to do it before or even after 1 year.

If you have a lot of fatigue because of the drugs, you are on get a lot more exercise, that can defeat the fatigue issues and make you feel a lot better.

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Testosterone is a prostate cancer fertilizer.

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I’ve had a similar question. Intermittent ADT has proven superior to continuous. It is considered a good practice by many to come off of ADT, monitor Testosterone and PSA every three months to see how the PSA responds to the increasing Testosterone levels. At some PSA level imaging (PSMA PET/CT and maybe others) is done to identify problem areas and treat.
My problem is that after being off of Lupron for nearly a year, my Testosterone has not returned. If after a full year there is still no Testosterone, I plan to request a short period of TRT for the above reasons and to give my body a break.

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@zmarkv

I’ve had a similar question. Intermittent ADT has proven superior to continuous. It is considered a good practice by many to come off of ADT, monitor Testosterone and PSA every three months to see how the PSA responds to the increasing Testosterone levels. At some PSA level imaging (PSMA PET/CT and maybe others) is done to identify problem areas and treat.
My problem is that after being off of Lupron for nearly a year, my Testosterone has not returned. If after a full year there is still no Testosterone, I plan to request a short period of TRT for the above reasons and to give my body a break.

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The problem with intermittent ADT is that it tends to be less effective with repeated intermittent usage.

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Thanks Jeff, can you reference some white papers or similar?

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