Received G9 Biopsy

You are doing fine, stay focused and you will get it done. It may feel like an eternity waiting until next Friday but chances are you will get the PSMA scan figured out next week as well and things will start coming together. Seems like a marathon at times.

How is everything going JCSav?

JC9sav said...
Had my appointment with Simon Indy (hematologist oncologist) yesterday. We discussed some scenarios depending on what the scan will show. Still waiting on the scheduling of my PSMA or Bone / CT scan. The Simon Dr. said she believes the scheduling of the scan should happen by next week and to notify her when it does so she can look at the results. Since Simon is IU, she had all my records and had reviewed them before our appointment. She also said the approval of PSMA's are becoming more common and with my Gleason score she seemed confident that I would get approved. She said that even if I have to settle for the bone / CT scan now that she would still lobby for a PSMA. She also mentioned a radiation oncologist that I will be meeting with after my scan.
Larry

This is encouraging, Larry.

I agree, the wait is so frustrating.

Steven, it's funny you mentioned following up with insurance and the authorization. My wife contacted the insurance to check on the PA to see if a request has been put in by my doctor's office. On two separate phone calls they told her they did not see any request. I contacted my doctor's office and they said they were waiting on insurance but that was a day or two after contacting my insurance. On a third attempt by my wife contacted the insurance and they told her they needed to have me present in the phone call conversation to give out the information.
A little bit of the back story to this is, the day or two after discussing the scans with my urologist the scheduling person called wanting to know why we wanted the CPT code. My wife had asked for the code during my doctor's visit with the urologist. The urologist did not know the code but said she would have someone in the office get us that information. She must have forwarded on to the scheduling person. The scheduling person seemed to be more concerned with why we wanted the code because she said that she was working on it. I explained to her that just in case my insurance wouldn't pay for a PSMA scan we would like to check around to see what it might cost out of pocket. As I mentioned in a earlier post on this thread the urologist quoted us $47,000 but I was reading online that the cost could be anywhere from two to ten thousand dollars. It's not that I didn't believe the urologist I just thought she was dealing with the cost when it goes through an insurance company. I had a past experience with my son where he needed some scans done for a possible kidney stone. My son did not have insurance at the time. The Doctor's office quoted $20,000 on one scan and close to that on another test, It may have been another type of scan. I called around for CT scan and got one for 1 or 2k. And right then and there after the scan they had a doctor on staff and said they saw kidney stone.
So anyway, with my situation, the scheduling person seemed to be offended and then ask If she should not schedule the scan if I'm going to look around for a scan. I said just follow through with what the urologist ordered I'm just checking cost. So my belief is it's very possible she intentionally sat on it for a while.

Post Edited (JC9sav) : 4/21/2024 8:24:43 AM (GMT-8)

Hi Stephen -

I know that a G-9 diagnosis is a kick to the gut but it is NOT a death sentence. I had my surgery 11 years ago to the day. I went into surgery thinking I was a G-7 (3+4) but the post op biopsy found a G-9 tumor lurking in there. Fortunately it was organ confined and my PSA has been undetectable (<.01) ever since.

Stay positive!

Jeff M

So glad to hear you've been approved. It just didn't make sense that with your stats they would not. Good luck, hang in there.

Concierge care can be a great thing. The idea of having a virtual consult/2nd opinion with Cleveland is also good--this is the sort of thing that is almost always recommended in high risk cases. Two top docs looking over your case is going to be a good thing. And, since it's coming from your insurer, chances are they are covering the whole cost.

Yes, it's about the insurance company covering their bases--but it's also good for you.

I am not an expert nor a doctor but the last sentence right now is the most important, "no metastasis".

Thank you for your input. The statement, "Diffuse
physiologic uptake in the bowel. Liver, kidneys, spleen, and pancreas
are unremarkable" may or may not refer a normal uptake of the Tracer in these organs due to how those organs function. Or there may be need for more investigation. This is at least what my vague interpretation is after a brief search on the web.
I will let the Dr. answer that but for now I am very pleased.

Ok no distant mets. It seems everything is still in or very near the prostate.

You will have to make choices now
Surgery or radiation.

It seems they are already mentioning an extracapular extension so i would be looking forward to the meeting with the radiation oncologist at Simon you mentioned earlier.

Now that the psma pet is done I would ask if starting casodex and then lupron is advisable regardless of the treatment decision you make.

its time to go on offense and take some mighty, decisive, swings.

Met with local urologist today and discussed surgery and radiation. I did not realize radiation would be done every day for about 8 weeks. It would be quite a task driving to Indy that often. I do like the idea of surgery except for the possibility of permanent incontinence. Have done research and talk to RO tomorrow but not sure how I can come to a confident decision at this time.
Research seems to indicate G9 will need RT even with surgery.