I had spent a week in the hospital from the sepsis from the transrectal biopsy. Back home with a midline for an afternoon IV for the next week. Strike one against my Dr. who poo-pooed the transperineal.
The results were that there was cancer but still within the prostate capsule - stage 2. The doc. recommended a PSMA test. After the options given it appears that radiation will be the route to go. He recommended a Dr. about 30 miles away and said that the machine they have is better than the one in my local hospital (3 minutes away). I obviously want the most accurate machine and technician.
So how do I verify that? What am I looking for in the machines and Drs.? What questions should I ask?
This newsgroup has been so supportive and knowledgeable. For people who are absolutely new to this domain it's difficult to know how to make decisions moving forward.
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I did not go to Johns Hopkins. I don't know how to do that. I plan on contacting MD Anderson in Houston for a 2nd opinion. MY GP has to give the order. I see him Tuesday. Urology Dr. is still waiting on DNA from one or more of the cores. He also recommended the PSMA scan.
I have to get over this sepsis, first. I'm in Central Tx (Austin) and would appreciate any referrals for the best radiation/oncologist and will research them. I wonder how rushed I should be... Dr. recommended one but I need to verify.
Thank You TA. Epistemology seems to be the biggest issue when you are new to a life/death domain.
Click on the link I provided above for instructions. Johns Hopkins pathology lab is the Gold Standard - no other lab is as reliable. They will tell you how much pattern 4 you have - that is what you have to know if you are going to be on active surveillance. You have plenty of time to decide after you get the second opinion from Johns Hopkins.
A Decipher score is a good idea only if you are going on Active Surveillance. But you have to wait for a response from Johns Hopkins before you make up your mind.
You do not need a PSMA PET scan - that is only for high risk men to check for metastases.
I am almost out of the woods with the sepsis from the biopsy. I hope to get the midline out tomorrow. I see my GP today who has not been in the loop, to request an order for a 2nd opinion from John Hopkins. I thank you for the link. MD Anderson reviews are uniformly bad - but that's the internet. My urologist already set up an appmnt with the radiologist. But no word on the PSMA scan. I read if the PC is outside the prostate then radiation is useless. True? So if the urologist recommended it and hasn't scheduled it prior to the appmnt with the radiologist it seems ass-backwards to me. I feel I'm being led around with little explanation.
For a rough idea you can ask the make and model of both machines and check with Google the year of their first anouncement. Traditionally new announcements are launched during trade exhibitions. Typical mechines are 6 +/- 3years old. More than 10 years it is already obsolete. Less than 3 years it is as new as it can get. Mind you that the year a machine was installed in a specific institution is irrelevant. They are expensive pieces of kit and being such there is a very active second hand (refurbished) market.
If your physician recommended a PSMA, and your insurance covers it, I would seriously consider having it done. The biopsies may have missed areas with potentially a higher grade. Since it isn't a very invasive procedure, and presents another data point which would confirm that everything is localized.
Getting a second read of the slide from John Hopkins is good. Your medical facility should be able to order that without any issue, and the link from TA should facilitate that.
It is true that a biopsy is a hit-or-miss proposition (like stabbing a needle into a blueberry muffin; you may actually miss the blueberries - the cancer tumors) PSMA-PET scans are also not 100% certain to find cancer The resolution of the imaging is limited and micro-metastases can be missed. So, a negative scan is not a guarantee.
I will stipulate that image-guided biopsies have improved the accuracy of biopsies and that improved tracer elements have improved the image resolution of PET scans. Also, PSMA-PET scans can view a lot more than just the prostate. My (one and only) scan revealed a LOT of details in my body completely unrelated to cancer. Very informative.
In my experience the radiation oncologist didn't actually personally plan the radiation parameters, but delegated them to a radiation physicist. That was also true of most of my treatment details, they were delegated to other specialists and support people by the radiation oncologist. The quality of the overall institution is probably key in this respect. 🦊
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
For what it's worth, your mileage may vary: I went with the org (UCHealth in Colorado) that used a Varian TrueBeam machine. Treatment times were shorter than the other devices I checked into (about 2-3 minutes of actual radiation), plus I thought the office had it together very well compared to some others, and I liked the docs I talked to and the results they quoted. Plus a friend had used them and had good results and actually recommended them to me. Just about done with 18 months of ADT (Orgovyx). That has been tolerable, although not without side effects of course. Looking forward to being done!
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