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Went from Grade Group 1 to 3 & 4 in a 3 year period, stressed
Prostate Cancer | Last Active: Feb 11 11:10am | Replies (7)Comment receiving replies
Thanks jeffmarc. That's a lot to take in at one time. You said you were "I was a 4+3 after surgery", was this what was assigned to your prostate after it was removed and biopsied?
I know they did genetic testing of some kind with the sample tissues from the first biopsy. I just looked through MyChart and the genetic testing results are not listed that I can find. All I know is they said it showed that the type I had was not likely to spread.
I want to go in Wednesday with some knowledge but I don't want to overload my Urologist and sound like I'm playing Dr. if you know what I mean. I've been using this Urologist for quite sometime well before my PSA hit that magic number to cause alarm.
Being a Gleason 8 how quickly do I need to move on this? I'm a fully disabled railroad Journeyman Machinist, disabled due to failed L3-S1 lumbar fusion and Meniere's Disease. It doesn't take much for a Class 1 railroad to take you out of service permanently for medical issues. So time off from work is not an issue at this point. If I absolutely need to travel somewhere besides central North Carolina I can I rather not but if I have it can be done.
Replies to "Thanks jeffmarc. That's a lot to take in at one time. You said you were "I..."
Centers of Excellence available in NC.
Certainly recommend a consultation.
Best wishes.
I am telling you many things to prepare you, knowledge is important you want to be able to guide your treatment if it isn’t standard of care. Urologist are not Genito urinary oncologists, They frequently don’t keep up with the latest developments.
My Gleason after biopsy was 3+4. After surgery they examine the whole prostate and upgraded it to 4+3. I did have another pathologist review the slides. I have heard about other people with 3+4 who had a 9 after surgery.
Urologist are surgeons, So they prefer to do surgery. There are also radiation oncologist you can talk to about doing different types of radiation. You don’t want to pick one without checking out both. The best SBRT treatment is with an MRIdian SBRT.
When they test your tissue, it is called a somatic test. It is not a hereditary test. The link I put up for that test is for a major prostate cancer study of hereditary anomalies. Color does the actual DNA testing. That’s why it’s free.
You can get free hotel rooms for cancer trips. Just search the web for “ free cancer hotel” and American Cancer Society pops up first.
A Gleason 8 is very aggressive. If you don’t get treatment soon you should at least be put on ADT so it will stop the cancer from growing, And it can even shrink it before surgery or radiation. Many radiation oncologist want you to do that? At this point, it’s very unlikely that a urologist can properly guide your future treatment.
To get more information, you should sign up with Ancan.org and attend their advanced prostate cancer meeting today or next Tuesday. They have weekly two hour online meetings. The people there have 15 years experience handling prostate cancer treatment. There’s always at least three doctors at the meetings. You need some expert advice and they can give that to you. You may be more suitable for their low/intermediate sessions, but you could attend the advanced one to get help right away and find an oncologist in your area. They talk to new people first, you should get to the meeting five minutes early.
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Don’t worry about “overloading” your urologist with questions - that is his job. Remember, he is there for YOU , not the other way around and asking questions puts him/her on notice that you cannot be bullshitted….they often do that, unfortunately.