My 67 y/o husband was diagnosed in October 2017 with Gleason 9 and PSA was 41 at start of ADT of Casodex and Lupron in March 2018. He had 39 sessions of EBRT; some to nearby lymph nodes and balance to prostate. His last 4 PSA: 6/19 at .02, 8/19 at .02, 11/19 at <.01 and 2/20 at <.01. His last Lupron shot was 12/19. He just finished Casodex. He feels he has had pretty limited side effects though I definitely observe some cognitive changes for the worse.
We see his MO on 3/2. As far as I know, based on what his RO and MO have said, this will be the end of active treatment. My question is, should it be? I just finished reading another string about continuous ADT vs intermittent which is what brought me to this question. I’m wondering what our questions should be when we see the MO. I know when we last saw her in December, she was trying to generate some excitement in us that his course of ADT was coming to an end after two years. I’m feeling a little anxious about being cast adrift with little navigation after 2.5 years of staying the course of ADT.
Should we ask for some type of scan and when? Does he need to become symptomatic before that’s done? How often will PSA be checked? Is there an argument to be made to continue ADT since he hasn’t found it nearly as awful as some others have? Any suggestions would be appreciated.
Thanks to all. Mary
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Emmett50
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The problem is that you are looking at a website for men with advanced PC, and those therapies discussed are only for men with advanced PC. You may find the following site more in line with your husband's situation:
As far as you know, your husband has been cured by the treatment given by his RO. Once the course of adjuvant ADT is done, he is done (other than monitoring PSA). I know that at some places they make you see an MO too to get the adjuvant ADT, but that is his only purpose. His RO is his lead doctor.
Thanks for your reply. So I’m sure I understand, my husband’s cancer extended outside the prostate to 4 nearby lymph nodes. The distinction then is between locally advanced and those with more distant mets in lymph or bones?
You are right that he is called "locally advanced," but when you read about men taking ADT permanently (either intermittent or advanced), that is for distantly advanced or recurrent PC. Pelvic lymph node metastases may still be curable by a combination of radiotherapy and long-term adjuvant ADT. That's what Touijer's study suggests:
If it were me I’d want to be at an undetectable level for longer than 3 months, especially with Gleason 9 before stopping ADT. You may also want to inquire about an ultra sensitive PSA test which checks for lower levels of PSA. Labcorp has one that goes to .006.
FYI - I tend to agree with T_A and Nal, but I think I can offer a bit more to consider.
MY numbers and story have some things in common with your situation.
I was diagnosed as G9, node positive with a PSA slightly above 300.
They called it 'advanced and aggressive' PCa (non metastatic). It turns out that (thru advanced third party testing) that there are circulating tumor cells that 'escaped' thru the nodes and into the blood stream. That testing occurred about 14 months ago, so it is possible that that situation has changed. The results of the test showed a 'low burden' or a lower risk (50 / 50) that some of these cells could become a problem ' later'.
What is unknown NOW is how many cells survived or what is the current status ? Answer - don't know BUT a baseline was set during testing and ANNUAL testing is recommended (at a cost) to monitor your condition(s). For now, I will not test further until I get past the next year (2020). (RGCC Group refers)
I thought it was a death sentence at the time - I had no idea what was ahead of me, but I feared the worst.
My story starts in May of 2017 - Dx at that time - also, I had a full urinary blockage which caused me to have a catheter for about 4 months BEFORE treatment even began. It took 4 months to see a urologist - no one would talk to me !!!!!
I received maximum radiation to the prostate and a lower dose for the pelvic area.
A few key points I'd like to make - I received ADT for 16 months (Lupron) which ended i July of 2018 but 'timed out in October (add 3 months).
My nadir reached undetectable - something you hope will happen. Once you get there, you need to stay there for awhile (6 months or more minimum). That also happened to me.
Assuming all goes well, an ADT 'holiday' might be in order.
The 'holiday' could last forever IF you are cured. IF not, then the journey continues to more advanced treatment options and testing.
IF you aren't, the PSA numbers should eventually start to rise OR there could be some 'morphing' of the cancer to something that does not produce a lot of or any PSA. For now, that doesn't appear to be the case - so on we go .....
There is a ceiling on rising PSA (your testosterone begins to recover and your PSA starts to climb). That number is usually less than (or around) 2.0 or within the normal range.
What surprised me was that the prostate still produces PSA after radiation treatment !
I thought I was dealing with a 'blob', but I was wrong.
So, to close, there is a chance he is on the road to a cure. Time and numbers will tell.
Hopefully, he is on that road.
MY numbers today - PSA = 0.67 with a 'T' around .9 - that is nearly 3 years post Dx and on a holiday - no treatment since July 2018 and counting. I'm at the point where the next few months will reveal my true status because the numbers keep climbing - but I'm still looking good - at least for now. I pray I got through the worst of it and still came out 'cured' or at least in remission,
On behalf of all the others and myself, we wish you well.
Nalakrats, those wild cancers-- cribiform, intraductal-- what can they bring? My friend(Gleason 9) has the bladder intrusion, a few lymph nodes, and pelvic floor involvement but no bone mets, but the pathology identifies the wild cancers you reference. What are the implications down the road? He's only had the diagnosis since early December, though symptoms were present for months. He wouldn't go to the doctor....
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