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Why are urologists dismissive about Decipher?
Prostate Cancer | Last Active: Sep 13 12:48pm | Replies (60)Comment receiving replies
I was put on Active surveillance earlier this year. The urologist at first was dismissive about my elevated psa, thinking it was likely due to inflammation. He said to get the psa tested again in a few months. I did and psa was the same level about 4.2.
I asked if i could have an MRI, he agreed. It showed a lesion likely to be cancer. A biopsy was then done with 4 cores 3+3 and one core 3+4.
He suggested Active Surveillance for quality of life. He said a study was done at the John Hopkins instititue of 1800 men on actice Surveillance for an average of 15 years. Only 4 of the men died of prostate cancer, while 48 percent eventually underwent treatment and 52 percent remained on A.S. He then recommended a Decipher test as I was about to leave. The Decipher turned out to be high risk. on the follow up visit he then recommended surgery.
I told him i wanted to wait another 6 months to a year and have another MRI and biopsy. He then got a little angry and combative and asked me what was the point of me coming to see him at all, as if i was wasting his time. I told him I was hopeful that my cancer would regress due to going all out on healthy lifestyle choices and would like to wait for another MRI and biopsy. This goes along with quality of life in my view.
He asked me why I originally even wanted a psa test and the subsequent mri and biopsy. Isn't it normal for me to want to monitor my condition and progress? Do some urologists use the decipher as a tactic to get more surgeries scheduled? Kind of a bait and switch like tactic.
First dismissing any cancer likelihood, and then it's urgent to operate?
I realize some may feel the need to argue this as another conspiracy theory, but others might feel the same apprehension as me. As a side note, when i got to the consult today, the nurse said the doctor wanted to perform a cystoscopy on me. I said I did not know anything about that but she said the doctor wanted it. She then filled me with lydocain. She came back a couple minutes later and said she gave it to the wrong patient.
Replies to "I was put on Active surveillance earlier this year. The urologist at first was dismissive about..."
A high decipher test is a real warning. Waiting 6 months would be just plain foolish. Another person posted in this forum that they had a Gleason 7 and the doctor put them off for 6 months. When they came for further treatment, the cancer had spread and was outside the prostate. You don’t want that to happen.
Listen to the doctor they are giving you great advice.
hi, dgd1953. the Decipher test indication of high risk is prognostic for metastasis. So your cancer is planning to escape the prostate. The test is most often used to determine if you should take hormone repression ADT to slow the spread of cancer. Decipher is also useful to determine the strength (GYs) of radiation best for destroying your cancer.
In your situation, I can't see why you are directed to surgery instead of radiation, but maybe others, more knowing, will weigh in.
Your impulse to keep waiting is natural, and sometimes dangerous. I'm not sure why the oncologist didn't have the sense to explain his recommendation. It couldn't have been his finest medical moment.
So you have this cancer that can threaten your whole body, but you have the chance to limit the battleground, which increases your chance of winning.
Gather your records and find or ask the urologist for referrals to see a surgical oncologist and a radiation oncologist. I lean toward radiation and early treatment. But, after talking to oncologists you'll have a broader view to aid your decisions.
Don't be agreeing to cystoscopies or other treatments without knowing why. Sometimes they get our charts mixed up.
Your doctor should welcome your questions and understand your resistance.
Bless your journey.
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What is the result of the Decipher test ? If it is really high, there is no scientific base for expecting it "regress". High Decipher score means that your cells have high rate of mutations and that can not change unless you have some genetic engineering done on your prostate gland cells.
Yes, you can decide to "wait and see" and use that time to do tons of research and decide what your next step will be - surgery of radiation therapy. Personally - I would not wait too long. With high Decipher you are risking your cancer becoming even more aggressive and cribriform and IDC developing and at that point you will have much narrower options for a treatment.
At this point you definitely do not have to have surgery, you can opt for radiation or even some focal therapy, but you have to start doing research and do not wait too long. You have to keep in mind that biopsy can miss some even more aggressive cells that are maybe already there 😟. I understand that perhaps you do not trust your doctor any more nor does she instill confidence in you - just find a better doctor and second opinion is always welcome anyways. If you can go to urologist at some university hospital or at Cancer Center of Excellence.
Wishing you the best of luck 🍀