Prostate cancer progression

Glen - Could you provide a little more info. What has your PSA history been? Was your Decipher sample taken from a second biopsy? Any MRI’s done?

Yes, mono means one which could one of the radiation methods such as IMRT or SBRT beam vs. brachytherapy (seeds), low or high dose. Surgery is just a separate mono therapy.

Thanks Mumbo and i recognize the name Halbert from before,hello again.
My psa had been all over but i used to get bad Uti,s which caused spikes. My family doctor did a 30 day Cipro cure and stabilized it. I run at 4.5 to 5.5 this is due to a very large prostate shown on Ct scan.
No Mri
4 months ago it was 5.5 last week was 5.0


Not sure why it took so long for the 30 Cipro dosing. I used to get Uti,s every 4 weeks with hematurea pain and retention. It is a blessing to be rid of it. Doctor explained the E coli can lurk deep in the prostate tissue

Glen

Glen - I think you were addressing the question about T replacement therapy to me. Yes, I am on T gel. I have been all along -- before diagnosis, during and after treatment (almost 7 years, so far). I have been able to do this with a very up-to-date local care team (RO and uro) in concert with their remote/written consultation with Dr. Abraham Morgentaler. I am in the Chicago area, but I flew to Boston to be evaluated/examined by Dr. Morgentaler. He wrote case-specific evaluation notes and recommended treatment plan, directed to my local doctors. They agreed, and implemented his plans.

With the addition of T-gel, we (doctors and I) believe that as long as we maintain my T levels consistently within normal ranges, there should be no negative effects. (See Dr. Morgentaler's publications regarding the Saturation Theory for the technical support.) The only thing which could be a negative for some patients (but not me) is that the external T may induce some "noise" to my PSA readings, depending upon any potential changes in the rate at which my system absorbs the gel. My T levels vary some, probably depending upon skin conditions and who knows what else, but they usually stay in the range of 450-650. We try to keep it at or just below the mid-point of the range, which for my lab is 300-1,100. My PSA has decreased from a pre-treatment maximum of 5.69 down to its present 1.55, almost 3 1/2 years post SBRT treatment. I have experienced minor bouncing, but mostly just a slow downward trajectory. (My reading thus far has shown that both the post-RT bouncing and the slow downward trajectory are favorable toward good long-term treatment success.)

I think that with your pathology, some form of SBRT should be on your short list of potential treatments, barring medical contra-indications. With the right doctors, the T may (should?) also be in your future.

By the way I prefer the gel but cannot afford it and another footnote is I called Dr.Morgenthaler,s office but changed my mind and instead went to my old testosterone doctor's office. He had retired but his partner had taken over the office which I did not know but found out while surfing the web. I told them I was a former patient and showed them my T level at 56 and they starred me back that day.

My Psa was once up to 8 but it was taken at an office visit for a severe UTI. I'm diabetic and prone to them. I'd get them like clockwork every 4 to 5 weeks. Since the 30 days if Cipro zero UTI,s
MRI I cannot do unless under heavy sedation
Glen

Oh Mumbo not sure insurance will pay for another genomic test. That thought did enter my mind. Maybe the NY doctor can have it sent to their lab since it is a major teaching hospital " Columbia "

Okay I will talk to the doctor first then depending on what I hear I'll act accordingly.
Weird that we still cannot pin pathology down and have 100% accuracy.
There are stories online of grade 6 actually being non cancerous and vice versa. Confusing and frustrating

I understand and have reviewed countless items be it "stories " or published in medical journal.
My point was that in this age we do not have a perfect marker for grading...we do well and I am glad at how far we have come from "just cut it out" to AS cyro etc

Thank you David. You are all very helpful in as you well know is a stressful time.

Bless you all

Glen

http://pathology.jhu.edu/department/services/secondopinion.cfm

I sent my urologist a note requesting that the slides be sent per the above link. They said fine and would request hospital pathology take care of it. I got a call the next day from the hospital asking where to send it. I then gave them the link above and they said, no problem, they do it all the time.

I suggest starting with your urologist then working backward to whoever has your slides if they give you any trouble. You can do it all yourself but a lot easier if it is one pathology group sending to another as you will see when you read the instructions. JH billed my Medicare who paid it and I never saw a bill directly. No one charged me to do anything.

Most importantly, try to think about this rationally as you are in pretty good shape from a diagnostic standpoint and have plenty of time to think this through. I think you find a solution that meets your requirements.

Thanks Mumbo and thanks Halbert. I'll save the link and take care of it soon. I'm at my apartment in the city and do not want to use the phone and my wife's PC. I'M using my cell and cannot type well until I get upstate to my refuge. My wife wants an cure ASAP I am not ready to explain options with her until I get more information.
I went outside got some sun then went to the gym and am feeling better. By the way the landlord said the gym is closing as soon as I leave until further notice due to the virus -that stinks!

Anyway doing better thanks again

Glen

Thank you Garyl
I do feel a lot calmer since coming back to the forum. Sorry to hear about the proctitis. I have read about that. Is it manageable? I imagine there's pain involved. I did read about a gel that may help those planning radiation which may keep the rectum away from damage. Did you have this before treatment?
Sorry I forgot the name but it has "oar"in the name
Best wishes to you

Glen

Thank you. With a name like "Spaceoar" you'd think I'd remember but the oar part I did.

I will get on the ball with ordering the second opinion on the slides soon. I'll update when I hear back. I write to my urologist via a "patient portal" and they are usually pretty good at getting back to me

Glen