Went from Grade Group 1 to 3 & 4 in a 3 year period, stressed

I was also diagnosed at 62, I was a 4+3 after surgery. My father died of prostate cancer at 88 But my grandfather died of pancreatic cancer. I am still alive after 15 years and four relapses. You can live a long life with the right treatments.

I bring this up because a combination of pancreatic and prostate cancer may mean that you have the BRCA2 Genetic anomaly like I have. It causes those two types of cancer. Have you had a hereditary, genetic test? If not, you can get one for free here.

Prostatecancerpromise.org

They will send you a spit tube and about three weeks later a geneticist will call you to discuss the results. Do not mention that you want your doctor involved or they won’t send it to you until speaking to your doctor.

You have a Gleason 8. The other cores don’t matter it’s the highest Gleason that counts. That is pretty aggressive so you want to do surgery or radiation or other options like Focal Therapy, NanoKnife, cryotherapy, HIFU, TULSA-PRO, if it is isolated to the prostate still they work.

I don’t see a mention of certain things that Are important to know. Is there any cribriform, intraductal, perineurial invasion or seminal vesicle invasion present?

It is probably time to move beyond your urologist. A Gleason eight is very aggressive. You want to be able to speak to multiple people about what’s going to happen. A center of excellence, like Mayo, would be the best place to start. You can get yourself a good oncologist to direct your treatment since you have many options. A Genito Urinary oncologist specializes in prostate cancer, unlike a medical oncologist that works with everything.

You definitely want to get a PSMA pet scan as soon as possible. That will tell you if your cancer has spread anywhere.

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.

@im62at2024

There is a lot to take in and decide, so one step at a time. See if you can get them to run a decipher test on your biopsy material. Doctors do use the results to decide what treatments to give you and it gives you a feel for the aggressiveness level.

I agree with @jeffmarc about a center of excellence. As a matter of fact, you might want to send your test results to a second center of excellence to do a telehealth. If you need a name at another center of excellence, private message me.

When they talk to you about treatment options, come back to this website as there are many people willing to help you here and answer questions about their experiences various treatment options. It’s important for you to feel comfortable with your choice and to educate yourself, so don’t be shy about asking questions.

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.

Centers of Excellence available in NC.
Certainly recommend a consultation.
Best wishes.

Your biopsies certainly show a more aggressive cancer and you should talk to multiple doctors about their recommendations and see if you can also get a Decipher test done to discover the genetic signature of your cancer and determine if it might be worse than the biopsies reveal.

For me I talked to three urologist, three medical oncologists and three radiation oncologists before making my decision. I also started working on pelvic floor and physical fitness with an emphasis on core strength immediately to give myself as much of an edge as possible for recovery (which was 100%).

This is a scary road to travel and your mind will swirl with all the worst case scenarios you can imagine, I know mine did, but everyone here can help you. One day at a time is more than a saying, it's how you work this problem.

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.