Testosterone Replacement Therapy after RALP

Posted by jeb0505 @jeb0505, Sep 16, 2024

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.

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@stevecando54

we both about the same, age included. I get firmagon once a month and take Abiraterone daily. Been on this for the last 18 months. Have the fatigue since the beginning. I will say I don't believe it has gotten worse over time but I sure know I have it. You just have to do the best you can to keep moving. Having it every day at times wears me down. I sometimes have to fight through it so I don't fall into that hole. I consider a good day when I keep my head on straight and have a good time, fatigue be damned. Welcome to the site, so many here that share, and I wish you the best on your journey. Best to all

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The reason they give you prednisone with Zytiga is to replace the cortisol lost by taking Zytiga.

Low cortisol can be a problem. According to a web search low cortisol causes this.

‘Low cortisol levels can cause any of the following symptoms: Fatigue and morning sluggishness. Depression. Anxiety.”

It’s possible you can talk to your doctor into increasing your prednisone from 5mg to 7.5mg or 10mg to see if that relieves some of the fatigue problems. Some doctors actually give their patients 10 mg of prednisone with Zytiga. Can’t hurt to ask.

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@jeffmarc

The reason they give you prednisone with Zytiga is to replace the cortisol lost by taking Zytiga.

Low cortisol can be a problem. According to a web search low cortisol causes this.

‘Low cortisol levels can cause any of the following symptoms: Fatigue and morning sluggishness. Depression. Anxiety.”

It’s possible you can talk to your doctor into increasing your prednisone from 5mg to 7.5mg or 10mg to see if that relieves some of the fatigue problems. Some doctors actually give their patients 10 mg of prednisone with Zytiga. Can’t hurt to ask.

Jump to this post

I've been on 10mg of prednisone since the beginning. I will talk with my oncologist next month about this. Does cortisol levels show up in blood work? I get tested for quite a few every month, I look at them but don't understand a lot of them. Of the list you mentioned the only one I could cross off is anxiety, otherwise the list fits me. Thanks for the info. Best to all

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@stevecando54

I've been on 10mg of prednisone since the beginning. I will talk with my oncologist next month about this. Does cortisol levels show up in blood work? I get tested for quite a few every month, I look at them but don't understand a lot of them. Of the list you mentioned the only one I could cross off is anxiety, otherwise the list fits me. Thanks for the info. Best to all

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I suffer from Polymyalgia Rheumatica. (PMR) an autoimmune disease. As with many autoimmunes steroids are used to treat it. Your symptoms fit steroid use. The test for cortisol is ACTH but the test is useless for testing cortisol until you get down to about 2-3mg of prednisone. Prednisone is an anti inflammatory and immune suppressant. Besides the list jeffmarc gave it raises blood pressure, raises cholesterol, raises A1C, causes gastric issues, floaters in the eyes, and bone density issues. Physical features such as moon face, thin skin, and weight gain. The worst thing is that after 2 weeks your body stops making cortisol. Prednisone is supplying it. You cannot live without cortisol. The bodies adrenal system will have to slowly restart while you taper off prednisone. The length of time and dosage of prednisone can effect this restart. You will go into extreme pain if you taper to quickly. Prednisone will fix a lot of issues but it is the devils tic tac. Google "prednisone and cortisol".

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@stevecando54

I've been on 10mg of prednisone since the beginning. I will talk with my oncologist next month about this. Does cortisol levels show up in blood work? I get tested for quite a few every month, I look at them but don't understand a lot of them. Of the list you mentioned the only one I could cross off is anxiety, otherwise the list fits me. Thanks for the info. Best to all

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The reason I recommended more prednisone was because I thought your problem was fatigue. now that I review what you said I do not see that mentioned.

I’m not sure what changes you are referring to. I was speaking to someone yesterday who has major fatigue, problems, and hard time getting out of bed in the morning. he’s on 5 mg and a shortage of cortisol could be causing his problems, and more prednisone might fix it.

Not knowing the details of “changes in me” Makes it difficult to suggest anything. Maybe in your case you’re taking too much prednisone.

You definitely have to talk to your doctor and try to resolve this. You might consider getting a palliative care doctor. They work with people to resolve conflict with medicine they are taking that are causing them medical problems.

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@jeffmarc

The reason I recommended more prednisone was because I thought your problem was fatigue. now that I review what you said I do not see that mentioned.

I’m not sure what changes you are referring to. I was speaking to someone yesterday who has major fatigue, problems, and hard time getting out of bed in the morning. he’s on 5 mg and a shortage of cortisol could be causing his problems, and more prednisone might fix it.

Not knowing the details of “changes in me” Makes it difficult to suggest anything. Maybe in your case you’re taking too much prednisone.

You definitely have to talk to your doctor and try to resolve this. You might consider getting a palliative care doctor. They work with people to resolve conflict with medicine they are taking that are causing them medical problems.

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This site has been so good to me. These last few posts got me to thinking about my meds and side effects. Some how I forgot I get a Xgeva treatment each month for bone strength. Side effects include shortness of breath and fatigue. Bingo, I finally realize where my sides are coming from. I was on monthly for one year, now I just started getting quarterly. Hoping they back off some over time. I've been pushing through for the last 18 months but at times it gets rough with no let up. This site has been a blessing to me with so many caring and sharing people on here, I thank all you. Best to all.

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Hi,

I'm 49. Gleason 3+3.

Last December my PSA doubled from around 2 to 4.15, had a Multiparametric MRI, it showed a lesion and the fusion biopsy confirmed a localized tumor with seemingly nothing affected outside the prostate itself. Three positive cores out of 18. One within the lesion; two more in the same lobe outside the lesion. The other lobe is clean.

In these three months, two more blood tests showed the PSA went down to 2 again (January) and up to 3 again (February).
My T is high naturally, in the 900-1000 ng/dL range. I've always assumed it is because of my vigorous workouts and healthy habits.

My father had prostate cancer too, his prostate was removed and he has not had any recurrence to date. I don't know what Gleason he had. And I won't know till after surgery, because I've decided not to worry him and my mother until everything is taken care of.

Because, yes, after thinking it through and doing my research I've decided to undergo surgery and it is scheduled for next week.

My surgeon says he believes my nerves can be spared, and he is confident I will be dry in 3 months and optimistic about my erections.

However, I'm having second thoughts. I wonder if my naturally high T will increase my risk of recurrence even if everything is removed now. I also doubt that the outcome in terms of functionality will be as positive as my surgeon implies.

So, I'm not sure if it's stupid or overreacting to undergo surgery now.

I do know that if I don't undergo surgery, I will be thinking about it 24/7. And I'm afraid that if I don't do it now, even under AS, (a) my cancer will progress suddenly beyond treatment or (b) it will progress slowly but beyond a nerve-sparing stage or (c) other health issues will arise down the road, so when (if) I really need to undergo surgery, I won't be as prepared either physically or economically to face the procedure.

I don't know. I had made up my mind, but a week prior to surgery, I question my decision.

REPLY
@someotherguy

Hi,

I'm 49. Gleason 3+3.

Last December my PSA doubled from around 2 to 4.15, had a Multiparametric MRI, it showed a lesion and the fusion biopsy confirmed a localized tumor with seemingly nothing affected outside the prostate itself. Three positive cores out of 18. One within the lesion; two more in the same lobe outside the lesion. The other lobe is clean.

In these three months, two more blood tests showed the PSA went down to 2 again (January) and up to 3 again (February).
My T is high naturally, in the 900-1000 ng/dL range. I've always assumed it is because of my vigorous workouts and healthy habits.

My father had prostate cancer too, his prostate was removed and he has not had any recurrence to date. I don't know what Gleason he had. And I won't know till after surgery, because I've decided not to worry him and my mother until everything is taken care of.

Because, yes, after thinking it through and doing my research I've decided to undergo surgery and it is scheduled for next week.

My surgeon says he believes my nerves can be spared, and he is confident I will be dry in 3 months and optimistic about my erections.

However, I'm having second thoughts. I wonder if my naturally high T will increase my risk of recurrence even if everything is removed now. I also doubt that the outcome in terms of functionality will be as positive as my surgeon implies.

So, I'm not sure if it's stupid or overreacting to undergo surgery now.

I do know that if I don't undergo surgery, I will be thinking about it 24/7. And I'm afraid that if I don't do it now, even under AS, (a) my cancer will progress suddenly beyond treatment or (b) it will progress slowly but beyond a nerve-sparing stage or (c) other health issues will arise down the road, so when (if) I really need to undergo surgery, I won't be as prepared either physically or economically to face the procedure.

I don't know. I had made up my mind, but a week prior to surgery, I question my decision.

Jump to this post

If you weren’t already scheduled for surgery, I wouldn’t tell you about the things below but it seems like you came here to get other people’s opinion.

With your father having prostate cancer it greatly increases your risk. My father died of it and my brother got it at 76. I got it at 62 because my mother added on, by giving me BRCA2.

If you review the recent medical information about a Gleason six you will find the medical community feels that people with a Gleason six are over treated. Staying on active surveillance is the optimal thing at this point, Unless they found some extenuating circumstances in your biopsy or heredity. You can look on YouTube for videos about it.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


You could get a PSA test every three months to keep things under tighter control.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link. Do not check the box to get you want your doctor involved or they won’t send you the kit. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

REPLY
@someotherguy

Hi,

I'm 49. Gleason 3+3.

Last December my PSA doubled from around 2 to 4.15, had a Multiparametric MRI, it showed a lesion and the fusion biopsy confirmed a localized tumor with seemingly nothing affected outside the prostate itself. Three positive cores out of 18. One within the lesion; two more in the same lobe outside the lesion. The other lobe is clean.

In these three months, two more blood tests showed the PSA went down to 2 again (January) and up to 3 again (February).
My T is high naturally, in the 900-1000 ng/dL range. I've always assumed it is because of my vigorous workouts and healthy habits.

My father had prostate cancer too, his prostate was removed and he has not had any recurrence to date. I don't know what Gleason he had. And I won't know till after surgery, because I've decided not to worry him and my mother until everything is taken care of.

Because, yes, after thinking it through and doing my research I've decided to undergo surgery and it is scheduled for next week.

My surgeon says he believes my nerves can be spared, and he is confident I will be dry in 3 months and optimistic about my erections.

However, I'm having second thoughts. I wonder if my naturally high T will increase my risk of recurrence even if everything is removed now. I also doubt that the outcome in terms of functionality will be as positive as my surgeon implies.

So, I'm not sure if it's stupid or overreacting to undergo surgery now.

I do know that if I don't undergo surgery, I will be thinking about it 24/7. And I'm afraid that if I don't do it now, even under AS, (a) my cancer will progress suddenly beyond treatment or (b) it will progress slowly but beyond a nerve-sparing stage or (c) other health issues will arise down the road, so when (if) I really need to undergo surgery, I won't be as prepared either physically or economically to face the procedure.

I don't know. I had made up my mind, but a week prior to surgery, I question my decision.

Jump to this post

There will be just as many that will tell you that surgery was no big deal as those that had issues. My Dr gave me 85% success on ED and incontinence. I think most of those successful are not on this site. I was a gleason 3+3 at age 67. No other issues. I had 1 out 12 samples with cancer and my PSA was not elevated. My Testosterone was 650. I elected for LARP. Family history and my own anxiety were my deciding factors. I have both ED and incontinence. I have had no issues with the cancer in the last 5 years. I appear to be cancer free. I am not 49. Would I do it again. Probably.

REPLY
@jeffmarc

If you weren’t already scheduled for surgery, I wouldn’t tell you about the things below but it seems like you came here to get other people’s opinion.

With your father having prostate cancer it greatly increases your risk. My father died of it and my brother got it at 76. I got it at 62 because my mother added on, by giving me BRCA2.

If you review the recent medical information about a Gleason six you will find the medical community feels that people with a Gleason six are over treated. Staying on active surveillance is the optimal thing at this point, Unless they found some extenuating circumstances in your biopsy or heredity. You can look on YouTube for videos about it.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


You could get a PSA test every three months to keep things under tighter control.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link. Do not check the box to get you want your doctor involved or they won’t send you the kit. It takes about three weeks to get the results and then a genetic counselor will call you.
`
Prostatecancerpromise.org

Jump to this post

Thanks for posting Dr. Laurence Klotz‘s video, it’s an outstanding summary of what modern AS is all about from one of the true pioneers in the AS field.

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Thank you! I will check that video out. @tuckerp do you think robotic vs non-robotic would have changed your functionality outcome? I'm saying because that's what my surgeon says and your conditions and mine before surgery are similar.

(He also says that both bundles can be spared, so... His confidence is what makes me consider surgery. Had he said to me my functionality is at high risk, I'm not sure if my decision would be the same)

Thank you!

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