New to the Forum. Looking for some positive..

Hi JPS1. I may have missed it, but I don't see your actual biopsy report. All I saw was your comment that you were told that there was a G9 core. Is it the case that you got the report but just haven't posted it here, or that you haven't gotten the report yet? If it's the latter, I don't understand what you are basing your treatment cogitations on or why a doctor expects you to start treatment when you don't have all the information yet (let alone have reviewed its implications with your doctor).

Djin

JPS1 - I agree with Djin, it would be helpful to know more about your biopsy results as it is the basis for most decisions. You can call MSK and ask if they have any problem with the Casodex at this time when scheduling with them again. My guess is they would not mind as you have 2 weeks before the hard stuff and you should be able to see them.

I have no direct experience here but Casodex is prescribed many times to help avoid "testosterone flare" from Lupron and other similar shots. I would also suggest not getting a 6 month shot of Lupron either and start out with a 1 month dose so you can see how it affects you. I have never understood that with many doctors.

Michael - I think the tendency is to not prescribe ADT for surgery patients unless it is really bad since they are waiting to see the pathology and make final decisions from there.

JPS, here's the deal about having surgery first.

Surgery causes a considerable injury. The radiation (called Adjuvant Radiation in this case) could not start for some time after surgery--3 months is typical. And then, the radiation causes more injury. The logic is--if you are going to have radiation anyway--and with the lymph node involvement you will need it--why compound the injury?

Basically, doing both doubles the chances of bad side effects. "Cutting it out", in your case, really won't hasten the cure, and adding radiation on top of surgery could make your long term side effects worse. The combo of radiation + HRT will take care of it.

JPS1...just checking back in with you. Did you end up starting your hormone therapy? I've been keeping an eye out for your posts, since both our diagnoses and ages (at the time I was 51) were similar.

Received a six month dose of Eligard. Next is the MRI next week then meeting again with the local RO. Also meeting with my MO at MSK in a few weeks to discuss the local treatment plan.

Preparation for radiation treatments presumably to begin within the next two weeks. Also starting Zytiga soon.

The ups and downs of this ride are tremendous. I keep having to remind myself not to jump ahead. It adds to the anxiety significantly. I’m already thinking about the first blood tests post RT and I know I shouldn’t be doing that.

Everyone’s journey seems to cut a different way. The situations are all so unique. So badly do I just want one of the doctors to say “after treatment you’ll be all set and don’t have to worry about this anymore”.. Unfortunately, that’s just not a reality. But, I’m slowly learning to cope with all of this.

There seems to be a general consensus amongst the docs that recurrence is likely at some point due to the G9 classification. But they didn’t seem overly concerned about treating it.

I’d love to hear anyone’s story of recurrence and how it was tackled.

JPS, you've had a lot thrown at you and we all know from experience how stressful it can be. I struggled for a long time until my primary care doc suggested low dose Xanax for the times when I was having a particularly tough time. It was really helpful for me. Some days I was fine without it, other times I felt like I needed to calm down. I would research so much until sometimes I was so apprehensive I was a wreck. It really help me to sleep better too. I wish I had known about it sooner.
I haven't seen anyone here recommend an anxiety med before so I don't know if it's allowed. People are different in how they handle the initial diagnosis, treatment decisions, dark thoughts about the future, etc. I needed help and I'm glad I got it. ADT can cause depression too. Dont be afraid to discuss this with your doctors.

I haven't taken any for a long time but I see it in my future. I will take one or two before my PSMA on Wednesday and depending on the results I may take it as needed for a while. I don't have an appointment with my new MO until March 5, so I really don't have anyone to discuss the results with except my urologist and I doubt he knows what to do for a RT guy who has a recurrence.

in 2017 I was beyond anxious. between a possible recurrence of my PCa, a diagnosis of coronary artery disease, and my wife dealing with serious health issue, I was off the charts anxious and, I guess, depressed. I was taking occasional Xanax, and a therapist I was seeing at the time recommended Setraline (Zoloft). I was hesitant, but my cardiologist/internist also recommended it. its been a huge help in just keeping me level. and there is no shame in it, half of America is on SSRTs.

I still take an occasional Xanax, but more to get a good nights sleep. I get a 30 pill scrip (which I split, so 60 doses, and it generally lasts about 15-16 months.

yes its a rollercoaster. if you can handle it without help, then great. But many people have a hard time, and if you are one of them, get help.

Some news. I’ve been on Eligard for three weeks now and just started Zytiga today. Only Eligard side effect that I’ve experienced has been mood related, but I’m not even sure if that’s the Eligard. Too early to judge for Zytiga obviously. Is three weeks too early for Eligard side effects?

The MRI performed by local team noted “diffuse left bladder wall thickening”, which led to a cystoscopy (last week) to rule out bladder invasion. Results came back benign. When the urologist called with the results, he basically said, “nothing exciting on the report”. When I asked if this is good news, he said yes, but also stated that he’s not able to biopsy the outside wall and that he’d inform the RO and see if he still wants to widen the radiation field to include the bladder. Very confusing. If that was the case, what was the point of putting me through a cystoscopy??

I then met with my local MO yesterday to discuss Zytiga and everything that comes along with that. I asked about the bladder issue. He confirmed I was all clear on the bladder and that it was a non issue..

Starting to get frustrated with the local team..

Behind the scenes, MSK has been doing their own analysis of my scans/MRI/biopsies as well. A few items of note. They noted Gleason scores for tumors found on the left apex, left mid and left lateral base of 3+3 6, 4+4 8 and 4+3 7 respectively. The local team biopsy noted a generic reference of “focal adenocarcinoma present in perineural space” with no Gleason scoring in these areas. Both local and MSK agreed on left lateral mid 4+3 7 and left base 4+5 9. They disagreed on left lateral apex, local 3+4 7 vs MSk 4+3 7.

Additionally, MSK’s MRI did not reference potential bladder invasion. Both local and MSK agreed left external iliac lymph node is involved.

I’m meeting with my MO at MSK on Friday morning and seriously considering transferring my care over to them.

Meeting is with MO, but he will presumably want me to meet with the RO as well. I was reading about Brachy and would love to include it as another form of attack, if it makes sense.

Be careful what you wish for…MSK may have a different opinion on ADT duration and it may depend on the treatment scheme you end up with such as the triple play that Michael references.

Hope your meeting goes well and you get some clarity for your decision making.