Am I Under-Reacting to my Prostate Cancer Proposed Treatment?

Posted by missetype @missetype, 3 days ago

I just had a post-Fusion Biopsy follow-up with my Urologist. I have two lesions of interest. The first lesion is rated a Gleason 3+3=6. The second lesion is rated 4+3=7 with Cribriform Pattern 4 present. I also have a enlarged Prostate. My last PSA was 9.2. The doctor pushed that I should take immediate action and wanted to consult with the robotic Prostatectomy surgeon and a Radiation Oncologist. He also mentioned Hormone therapy. He said I was not a candidate for Focus therapy, Brachytherapy, or Cryotherapy. This is a life changing decision. Is my Urologist's push for immediate action warranted or do I have time to explore other options/opinions?

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I know this can be a stressful time, and the decision demands seem to be flying at you fast.

Since you have the opportunity, I'd suggest going ahead and consulting with the surgeon and oncologist. They will be able to give you expert information and help make your options clearer. I'd also do any extra tests or imaging they recommend.

In the end, it will be your decision whether to go ahead with any specific treatment — consultations don't commit you. You can also seek second opinions. But there's no benefit from just waiting.

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There are many places that will still do your lesions with Tulsa Pro or perhaps other options, many academic places will not because they are doing studies for publications, and the study parameters mandate only 3+4 and were set before the academic center even got the machine or used it for the first time. So in those places that is a study parameter limitation. Tulsa Pro can burn any lesion up as long as it is reachable, not so far out in an enlarged prostate (it would have to be really big to get this elimination), and not blocked by calcium deposits or some other issue.

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Cribiform 4 indicates a greater risk of metastasis.
Your calm is a great advantage in addressing the cancer.
Schedule the consultations right away and then take your time deciding. I assume they all will agree that hormone therapy should begin asap to prevent those cancer cells from wandering about. Usually they want you on therapy for two months before treatment. During those two months you'll have time to decide.
Gather all your records and schedule with a medical oncologist, radiation oncologist and surgical oncologist.
Ask your biopsy provider to order a decipher test, so that you can get the genetic mutations of your tumor.
And find one of your providers who will order a PSMA PET/CT.
It you tell us on Connect where you live, someone will probably know of good oncologists in your area.
Ideally you'd want more than one radiation opinion. More than one surgical opinion would also be advantageous.

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I agree with the opinions stated by “ North of the border” and “gently”. As a lay person who had focal Brachytherapy that failed I agree that with your urologist that you are likely not a good candidate for focal therapy, brachytherapy or something like HIFU as none of them deal with metastasis related disease that more than likely would not show up on a biopsy.

One last thought: considering that you may be dealing with aggressive disease, you would do well to consider being treated at a nationally recognized center of excellence that has an excellent track record for experience, treatment and success. Here is the link to national cancer Institute recognized sites:

https://www.cancer.gov/research/infrastructure/cancer-centers

Good luck on your journey. We’re here for you.

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@missetype I agree with the last three comments. If it were me, I would do my research including this site and nccn.org which is used by doctors and patients for treatment guidelines. Definitely get more than one opinion from doctors at centers of excellence at different institutions.

If you do radiation, check out the different types of radiation machines as you will have different exposure to your healthy tissue which does impact side effects. Ask about 5 hypo fractional treatments, mri real time radiation treatment machines and as was mentioned, the Decipher test from your biopsy material.

It’s a shock to go through this stuff but a process that you will get through. Just take one day at a time and keep coming back and asking questions. Sometimes the answers are not black and white as success stories vary upon circumstances but you will end up with a “decent” feel for a reasonable direction you can take for the myriad of issues that will come up. We are all here to help.

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2 resources that were of benefit to me were "Surviving Prostate Cancer " by Patrick Walsh MD and the Patient Guide free from the Prostate Cancer Foundation (download or hard copy), pcf.org.
Good advice from others who have responded already.
The PSMA PET scan particularly will help identify or rule out additional cancer locations and be important in decision making.
Best wishes.

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I'm not a doctor yet I have researched cribriform pattern 4 extensively. While it is true that the vast majority of prostate cancers are slow growing and you can take time to research and decide your best options, other cell structures, like cribriform pattern 4, are agressive and time is important. I was diagnosed in mid-April with a Gleason 4+4, stage cT3a, and cribriform pattern 4. I had no symptoms, but by the time of my RARP on Monday, the PIRADS-5 tumor had grown to the point that urination was practical impossible. Additionally, during surgery, the surgeon found that the prostate had grown into the rectum, requiring disection of the prostate from the rectum. My surgery was over 6 hours. A colorectal surgeon was called in to scope the rectum and sutures were required to repair the rectum. We are waiting on pathology but obviously there could be cancer spread to the rectum and/or positive margins though I'm trying to remain positive. My point is, not all prostate cancer is slow growing and some, like cribriform pattern 4, can grow fast and lead to poor outcomes and mortality. My urologist said I had 3 weeks, not 3 months to start treatment. Find the best Dr. you can and listen to them.

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@robertmizek

I agree with the opinions stated by “ North of the border” and “gently”. As a lay person who had focal Brachytherapy that failed I agree that with your urologist that you are likely not a good candidate for focal therapy, brachytherapy or something like HIFU as none of them deal with metastasis related disease that more than likely would not show up on a biopsy.

One last thought: considering that you may be dealing with aggressive disease, you would do well to consider being treated at a nationally recognized center of excellence that has an excellent track record for experience, treatment and success. Here is the link to national cancer Institute recognized sites:

https://www.cancer.gov/research/infrastructure/cancer-centers

Good luck on your journey. We’re here for you.

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I would wholeheartedly agree with your statement on the nationally recognized Center for Excellence. There are many out there. I receive treatment at Mayo Clinic - Phoenix. These centers have decades of experience, treatments, known outcomes, data, research, etc. They almost could plug your numbers in and project the outcome.

Most importantly, do your research. It's your new job. Any provider promising a "new scientific breakthrough that will cure your PC" ... be very skeptical.

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It’s the 4+ 3 that needs to have attention before it gets worse.
If you have cancer in two different spots - then focal therapy is a bit trickier.
Do your research. All modes of treatment have side effects and downside. Be armed with info and questions.
One site I suggest is : Prostate Cancer Research Institute videos on YouTube. Lots of good info.

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@stevemaggart

I'm not a doctor yet I have researched cribriform pattern 4 extensively. While it is true that the vast majority of prostate cancers are slow growing and you can take time to research and decide your best options, other cell structures, like cribriform pattern 4, are agressive and time is important. I was diagnosed in mid-April with a Gleason 4+4, stage cT3a, and cribriform pattern 4. I had no symptoms, but by the time of my RARP on Monday, the PIRADS-5 tumor had grown to the point that urination was practical impossible. Additionally, during surgery, the surgeon found that the prostate had grown into the rectum, requiring disection of the prostate from the rectum. My surgery was over 6 hours. A colorectal surgeon was called in to scope the rectum and sutures were required to repair the rectum. We are waiting on pathology but obviously there could be cancer spread to the rectum and/or positive margins though I'm trying to remain positive. My point is, not all prostate cancer is slow growing and some, like cribriform pattern 4, can grow fast and lead to poor outcomes and mortality. My urologist said I had 3 weeks, not 3 months to start treatment. Find the best Dr. you can and listen to them.

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Really helpful, Steve! What abouth antandrogens?

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