New, questions.

My oncology urologist told me that if my biopsy came up with Gleason 6 that he would not do any surgery but will start active surveillance. Mine came back as GS 7 (3+4) and had surgery.

The one thing I learned about biopsies is that they are a shot in the dark. Many times prostate cancer starts off as small isolated diffused tumors, which can be missed during a biopsy. Currently, about 2% of men with GS 6 will develop metastases.

Here is a link you can read. It is a little dated (2016) but still pertinent.

https://ascopost.com/issues/december-25-2016/a-gleason-6-tumor-is-it-cancer-and-should-it-be-treated

Post Edited (lapilot) : 6/21/2022 3:17:46 PM (GMT-6)

I’ve seen a lot of conversations on this forum about getting a second opinion from Johns Hopkins, how do you go about doing that? Do you actually have to go, do they need to take new biopsies? A lot of what my daughters and I have read show that a 6 is an ideal watch and wait candidate, however, I’m having a hard time knowing it’s just there & doing nothing about it, just waiting.

Maddixone,
First I agree with the others. With 8 cores out of 12 positive, and a relatively high PSA of 9.3, active surveillance seems to me to be a bit of a questionable strategy even in the face of a G6. Some others will disagree with me. And I may be wrong but the way to make the best judgment on that is to follow the advice above. Get the MRI and very important, get a second opinion from Johns Hopkins on the biopsy.

If you tell your urologist office that you want the slides sent to Dr. Johnathan Epstein at John’s Hopkins for a second opinion, they will in all likelihood know exactly what to do and either direct you to the pathology department of whatever hospital did the pathology or they will take care of it themselves for you. No need for another biopsy they will send the slides and the slides will be returned to them by Johns Hopkins after the second opinion is rendered.
If your doctor does not know how to do this and it’s left to you to take care of, it’s a simple process. Here is the link to get started…

https:// https://pathology.jhu.edu/patient-care/second-opinions/send

The second opinion probably will not be covered by insurance but it’s not that expensive I believe it’s somewhere between 250 and $300. As an aside, my biopsy six years ago was graded Gleason 8 by the local pathology department. Dr. Epstein downgraded me to Gleason six, which was confirmed by the pathology department at Memorial Sloan-Kettering. This completely changed my course of treatment in a good way .

As far as your aversion to leaving the cancer in there and doing the watch and wait or active surveillance approach. It may or may not be an option depending on what Johns Hopkins comes back with. Even if it is an option and turns out to be the best approach, I have to say I understand your feeling of not wanting to do nothing when you know that you have cancer. I think the mental part of active surveillance is given less attention than it deserves sometimes. Some men just don’t have the mindset to deal with knowing they have cancer and they are doing nothing. But as was mentioned in a post above there is even controversy as to whether Gleason 6 should even be considered cancer .

The best thing you can do is get that second opinion, get the MRI, do a lot of reading and educate yourself and then make your best decision. Each of us are unique and what is the right thing for one may not be the right thing for another. If it turns out you do need to be treated there are many options sides surgery including various forms of radiation. Get yourself educated on everything related to prostate cancer. And remember at the end of the day it’s your decision so you do you .

Prostate cancer is one of the more slow growing cancers and is very often cured. when it’s not cured it’s most often treated as a chronic disease. So do not panic. Hang in there and stick around you’ll get plenty of education and support here. Good luck.

https://pathology.jhu.edu/patient-care/second-opinions/send

Prato - double https got you again

I have no regrets about selecting early aggressive treatment over active surveillance. I found SBRT radiation treatment effective, safe, and easy. SBRT can go by several names including Cyberknife and Precise. With 8/12 cores positive treatment is likely in any event. HDBRT was my second choice. Keep learning and asking questions. It’s important to make an informed decision. Terry.

Active surveillance would not be standard of care for 8/12 G6 positive cores OR a PSA of 9.3, let alone the combination. In fact, AFAIK, an 8/12 biopsy would get you kicked off a serious AS program, and your PSA is approaching 10, a separate criterion that signals it's treatment time in many AS protocols.

If your second opinion confirms many G6 lesions, you don't have to have surgery if you are set against it: there is radiation. But I wouldn't advise the ostrich approach of using AS as your sand. You could be closing a window for a definitive cure and daring your G6 to progress to something potentially much more serious.

Djin

The introduction fo the PSA totally transformed prostate cancer treatment. Before the PSA test, prostate cancer was usually discovered very late, when little could be done. With early discovery of prostate cancer now possible, as in your case, early treatment was possible and the death rate from prostate cancer plummeted. This introduced a new problem, that of over-treatment, aggressively treating cancers that might never have amounted to anything but leaving the patients with unpleasant side effects. This led to a backlash of sorts against the PSA test. It seems to me that the prostate cancer community is still struggling with the proper balance between over and under treatment. Your situation seems to be on a borderline. Medical science may not be able to give you a clear answer on whether you should seek treatment or not. You should certainly follow through with the suggestion to get a second opinion on the biopsy slides. You should probably also get a second opinion from a urologist as to whether you should pursue AS or not. To some degree it may come down to your risk tolerance.

Definitely get the 2nd opinion. I had mine upgraded by Hopkins (Epstein) from 3+3 to 3+ 4. If he says 3+3, then that's a good warm and fuzzy.

From the MRI you will also get the prostate volume, which will allow you to calculate your PSA density. If you have a big prostate, that's a lower density.

You can have your biopsy sent off for a genomics test too, which will help adjust your probability that what you have needs immediate treatment or not. It won't tell you the answer, it will just narrow the odds a little.

So there is lots of data to still be gathered to make your choice, all the while you'll be doing lots of reading and thinking. Best of luck, Mannixone!

Madd, I obviously concur with the suggestion of others to get the second opinion on your biopsy slides. DO THIS ASAP. Beyond that, I find the 8/12 cores a bit worrisome as well as the PSA level. I frankly don't know why 4 years elapsed from a rising number above 7. Many of us had biopsies done at lower PSA levels found on routine exams.

In the meantime, IF you are considering AS (NOTE: This is NOT watchful waiting), please make sure you go to a practice or institution that has wide experience with AS patients. There are strict AS protocols to follow to make sure the cancer doesn't get away from you. Even though our cancer is "slow growing" that doesn't mean we can ignore it for lengthy periods of time.

You may even want to discuss the situation directly with Dr. Epstein. He has been known to be generous with his time so when you get the results of his reading you may want to ask to chat with him personally.

Finally, if you do decide you want to treat this beyond AS there are many excellent options that are likely to cure you including surgery and various radiation options. Feel free to ask us and you will get a lot of good advice re alternatives.

Good luck.

Jim

I was at 3+3 but with high volume and my PSA was between 8 and 9 so I decided to go with SBRT/Cyberknife. Having made that decision and reading on this forum I also got the advice to get a 2nd opinion from Epstein. It came back 3+4 in several cores so I'm glad I didn't dither any further.

You didn't say what your volumes were from the biopsy, but with a PSA that high I'd be nervous about continuing SA anyway.

You should definitely see an RO (Radiation Oncologist) to see what your options are. I think somebody here suggested that you consider consulting with two RO's and I concur. Choose the best therapy without regard to whether your local hospital has this machine or that due to investment costs. Consider well regarded doc's in medical centers that have access to the tools you want, be it in NYC, Baltimore, Phoenix, etc.

I went with SBRT but there are several other radiation options such as IMRT, HDR/Brachy, Proton Therapy and more.