Hello again ConfW,

I believe current studies think early SRT and PSMA scan eligibility start at PSA = 0.20 and depends on situation and PSA doubling rate. That does not mean a doctor can not get something approved at lower PSA nor is approval automatic guaranteed at 0.20. This is still one of those grey areas with insurance and standard of care.

I don’t know about a pathology second opinion at this time. As I recall, he ended up with a G4+3, a high Decipher score and now a measurable PSA that seems to be bouncing around. The problem is that sometimes PSA does this for a long time so there is a reluctance to initiate treatment and risk side effects if it not really necessary until recurrence is demonstrated. This seems to be at 0.20 now.

The good news is that 0.20 is considered early now and the focus on lower values seems to not be a such a concern unless one has a “real” high risk situation. Regardless of where he goes at this point, most will want to test and see if he gets to 0.20 in the near future. He has to yet to break 0.10 so the argument is bit weak now for action.

He can always seek out a well respected cancer center and start the process. Hang in there, they are just little numbers. Weekends in summer tend to be slow, it is raining here.

Does your husband share your anxiety? It is tough to not get excited about things related to cancer but PCa rarely moves fast and doctors tend to not get alarmed and not proceed aggressively like they might with certain other cancers with marginal numbers. It is hard to sit back and wait it out but that is what is required.

https://pathology.jhu.edu/patient-care/second-opinions

Sr Sailor - I was able to find a link although it is a little different and more expensive than before.

Please do not be very anxious. Mumbo is right prostate cancer does not move fast. And at .20 PSA or less, it is not urgent that he act immediately.

So here was my situation.
When my PSA started going up, my doctor, like yours, told me not to worry and recommended to do nothing until it gets to .20, and then we will do a scan. And if the scan showed nothing, he would even wait until .4 then do another Scan.
First of all my doctor was my surgeon. And although he is very well respected and has done over 10,000 surgeries probably by now 15 or 20,000, he is a surgeon, and I felt that he is not the expert on recurrence, and his job was over after surgery.

So I made an appointment on my own with a doctor at Sloan Kettering in New York where I live. He told me that the recent research showed that the earlier you treat the better chance you have of a cure when doing salvage radiation. He also told me that if we treat before my PSA reaches .1, he would be OK with me not doing ADT, even though he would recommend it it. After it gets to .1 or above, he would insist that I do ADT for six months.

I then saw another doctor at Cleveland Clinic in Florida, who is also well respected. He said the same thing and he showed me studies to back it up.

So my PSA was .08. And I had two highly regarded radiation oncologist, recommending that I treat and not wait. They also said there is no point in doing the scan at such low numbers because it will not show anything.

Problem with this is that you were doing radiation to the prostate bed, assuming that that’s where the cancer is but not really knowing for sure because you have nothing to scan. But the alternative is to wait and that to me was not acceptable. I am aggressive by nature.

So when my PSA was .08, I started ADT and one month later I started radiation. It lasted eight weeks. The radiation was really not hard other than going into Manhattan five days a week at 6 AM for eight weeks. The hormone therapy was not fun, but it was manageable. Keep in mind everybody is different, but for me, I had hot flashes, gained a lot of weight, and also my lipids went very high

Now I have lost all the weight my lipids are good and I’m back to normal. It has been five years and my PSA is undetectable..

Either way, it’s a risk. Waiting till your PSA gets high. Enough for a scan is a risk. And doing radiation not really knowing for sure that you are Targeting the right place is also a risk.
But with a high decipher score which I believe you had, I think you are better off being aggressive. Just my opinion, I’m not a doctor.

One thing you might do is meet with the radiation oncologist or maybe even two, and ask a very specific question like I did. Ask him “if we go ahead and do radiation to the prostate bed what do you think the chances are that’s where the cancer is and that we will be successful, in my case based on my surgical pathology, they told me the chances were 80 to 90%. That’s what convinced me to move forward in your case it might be the same or might be different but it will give you a basis to make a decision.

One other thing… things may have changed and the thinking might be different since 5 years ago, when I was treated. I just don’t know.

I hope this helps you and your husband, I know it really sucks to have to go through this. But just remember that he will be OK one way or the other it’s not like the cancer is out of control. It’s just a few cells that have been left behind, and it’s enough to cause PSA to stop the move doesn’t mean he’s got cancer all over the place

Keep us posted and keep posting on the forum.

Thanks so much for your responses Pratoman and Mumbo, I really appreciated you both. We will start looking for second opinions and go from there. Thanks again.

Hello - There are times during the process when emotions and despair peak. In my case, I retired in June a healthy individual and in July my PSA jumped 4->5 at annual physical, I did not need to know the answer as I knew this was not going to turnout good and began to feel like crap. Urologist laid out the diagnosis plan, DRE->MRI>biopsy if required which did not make me feel much better. When I got the post-biopsy phone call, I probably reached a new low from the previous low. Then it was the slow climb back up with scans, seeing RO, 2nd opinion, etc. I felt much better the weeks before surgery but nothing like when I first retired. The story had its ups and downs but I was ok about a year after diagnosis and treatment was over with a couple of good PSA's under my belt. As some point it just became a treatable cancer diagnosis in my mind and I was was not going to pass soon. The 6 month PSA's are always a reminder that it could appear at any time but that is just a day or two.

You may want to look for some sort of caregiver or spousal support since you don't have the disease. These exist for many cancers and may be what you need rather than talking with a bunch of disgruntled me with PCa. Just a thought.

Thanks, I will note that my wife is on her second bout with BCa (doing well) and I am a much better spouse now than when she when she was first diagnosed with two boys in high school. I did what I could at the time but appreciate the situation much more now as I can relate to every aspect of it and can actually guide her this time.

She (woman) was lucky as she had a large friend group with a number of BCa survivors for advice and sympathy. I (man) knew two people with PCa, one was my father, and they were not much help as they were men also and just said they had it and got treated, any questions?

There a few support groups for PCa spouses and/or caregivers on Facebook