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Questions for urologist post-SRT / Lupron treatments

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Posted 1/3/2020 6:16 PM (GMT 0)
I am meeting with my urologist next week as a follow-up to my most recent PSA test, which came in at <0.01 in late December, 9 months post-SRT and 7 months after my last Lupron injection "ended". I was on Lupron for 6 months, with the last 3-month injection in February. I am working on a list of questions for my appointment and would welcome any feedback from forum members (other questions to ask. etc). Thanks in advance for your input.

1. Is it too soon to tell if the radiation was at all effective?
2. My testosterone pre-treament was 207. It's now 285, a slight drop from the test 4 months earlier. What can I expect moving forward?
3. Is the Lupron completely out of my system now?
4. I put on a lot of belly fat during my Lupron treatment. I've been exercising regularly and watching my calorie intake but my midsection, although smaller, isn't even close to where it was pre-Lupron. What can I expect moving forward?
5. I still experience ED (left bundle of nerves removed during RP almost 2 years ago). I take 60mg of Viagra 3X week for blood flow. Can I expect my ED to improve over time, or is this the new normal?
6. You've been scheduling PSA tests every 4 months, but it seems most men in my situation go every 3 months. What is the reason for that? As a high-risk patient, isn't it better to go every 3 months?
Posted 1/3/2020 6:34 PM (GMT 0)

MotownPaul said...
I am meeting with my urologist next week as a follow-up to my most recent PSA test, which came in at <0.01 in late December, 9 months post-SRT and 7 months after my last Lupron injection "ended". I was on Lupron for 6 months, with the last 3-month injection in February. I am working on a list of questions for my appointment and would welcome any feedback from forum members (other questions to ask. etc). Thanks in advance for your input.
1. Is it too soon to tell if the radiation was at all effective?
2. My testosterone pre-treament was 207. It's now 285, a slight drop from the test 4 months earlier. What can I expect moving forward?
3. Is the Lupron completely out of my system now?
4. I put on a lot of belly fat during my Lupron treatment. I've been exercising regularly and watching my calorie intake but my midsection, although smaller, isn't even close to where it was pre-Lupron. What can I expect moving forward?
5. I still experience ED (left bundle of nerves removed during RP almost 2 years ago). I take 60mg of Viagra 3X week for blood flow. Can I expect my ED to improve over time, or is this the new normal?
6. You've been scheduling PSA tests every 4 months, but it seems most men in my situation go every 3 months. What is the reason for that? As a high-risk patient, isn't it better to go every 3 months?


your testosterone is back and radiation is a success! I was on Lupron nine months and put on maybe 30 pounds but took it off in 3-4 months through dieting and exercise. my midsection is probably slightly bigger these days but that's the tendency of an aging mesmo smile
my doctor always used 4-month intervals in the beginning.
as far as ED goes your case is an example why I feel it's irresponsible for doctors to operate on high risks cases if the patient wishes a better probability of avoiding permanent SEs. I hope it improves for you!
Posted 1/3/2020 7:57 PM (GMT 0)
MoPaul - Sorry, can't help with the ADT questions.

You are just playing the waiting game now like many of us after ART/SRT treatment. It really does not matter whether you are on a 3 or 4 month PSA schedule as nothing is going to happen in a month or two now that is going to create any opportunities or threats. In fact, watching PSA numbers at very low levels does nothing either now and a standard PSA test (<0.10 sensitivity) would be perfectly fine if you are so inclined (I never changed once I decided on ART).

I am pretty sure that the radiation stopped any progress on the ED front as far as I can tell with a partial nerve sparing on the affected side and discussions with doctors . Maybe it is just a recovery delay, maybe not, but taking 2 years to recover is not out of the question for those who have had surgery and no radiation so there is still time to hang in there and stay after it considering all factors.

Your PSA looks good and you should be in good shape going forward. I asked my urologist at my last visit if my next stop is the oncologist or Mayo if my PSA goes up and he told me to stop thinking like that. If and when that ever happens he said, we can worry about it then and to enjoy life. So time to move on..
Posted 1/4/2020 2:16 PM (GMT 0)
Motown,

These are excellent questions and I am going to save them for my next visit. I find post SRT to feel a bit less clear than all the steps till now. For example, I am not really clear on who should I be seeing for followup, my RO or my Uro or an MO if PSA rises?
Posted 1/4/2020 4:07 PM (GMT 0)
AJ - I guess we are all high risk members of the Class of 2018...

FWIW, I will be keeping my PSA testing with Uro for the foreseeable future and will probably meet with him first if he calls with adverse results someday. I will then immediately call Mayo and try to setup a consult with Dr. Kwon who is well regarded (also only 1.5 hours away) for advice on "state of the practice" recommendations and treatment options at that time. Might even try others depending on how I feel at the time since I am retired.

I agree, it is a lot easier studying treatment options that are curative in nature vs. the black hole of what happens next if the problem is not solved after a couple of tries. If and when that ever occurs, my plan is to go for the best chance of success for the long term. It may be that I will end up with local MO for execution of a plan but I will at least have researched it at the expert level prior to proceeding.

I guess the answer is you can see them all for opinions if your PSA rises or none of them and look for the best prostate doctor, MO or otherwise, you can find who specializes in the difficult cases. You will have to decide at that time and probably should not think a lot about it until then, at least that is what I am trying to do...
Posted 1/4/2020 4:37 PM (GMT 0)
Paul, all good questions..
Regarding the ADT - You recovered nicely, depsite a low baseling. I am 12 months past my last 3 month lupron shot, and still at 150, T, with baseline of 308. So you are pretty good in that regard, if i am any barometer. But everyone is different.
Regarding mid section belly fat, i am in the same boat. You should be able to get it off, just might have to work really hard at it to do so. I am exercising hard, and watching my diet, working towards near perfect, right now I am better on diet, but still not near perfect.
Stick with it, that problem will be solved.
Until you see a detectable PSA, just consider yourself cured, and focus more on the ADT questions, belly fat, and quality of life.
Posted 1/4/2020 5:28 PM (GMT 0)

MotownPaul said...
I am meeting with my urologist next week as a follow-up to my most recent PSA test, which came in at <0.01 in late December, 9 months post-SRT and 7 months after my last Lupron injection "ended".

My perspective is that with your current PSA RT was quite effective. Lupron is out of your system, belly fat is very individualistic but work on it, your T is fine and expect it to bounce around - how is your free T?, ED too is case by case...I've had very minor ED, and finally get a PSA check every 3 months only IF it makes you feel better - at your low readings I wouldn't worry.
Life is good Paul....be thankful.
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