DECIPHER TEST?: I am a fit 67 year old... - Advanced Prostate...

Advanced Prostate Cancer

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DECIPHER TEST?

JPnSD profile image
16 Replies

I am a fit 67 year old now and was diagnosed with PCa with Gleason 9, RP 8/2019, and PSA of .01 11/2019, and .05 1/2020 and .05 04/2020 on quarterlies. Both my URO and MO say sit tight and wait for the PSA to rise before next steps. I have asked repeatedly for DECIPHER testing of my tumor (contained to prostate, seminal vesicles clear, 1 lymph node with microscopic cancer cells - technically Stage 4).....but have gotten..."not indicated" response from both doctors for DECIPHER. How hard should I continue to fight for this information...in order to make best chance of survival choices?

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JPnSD
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16 Replies
Tall_Allen profile image
Tall_Allen

I don't think you need it. You've had a positive lymph node. Why aren't you talking to an RO?

JPnSD profile image
JPnSD in reply toTall_Allen

I did...they are all in synch. Waot

Tall_Allen profile image
Tall_Allen in reply toJPnSD

I think any positive node is reason for adjuvant whole pelvic RT with 2-3 years of hormone therapy. Not sure why your doctors are taking a wait-and-see attitude.

Concernedwife24 profile image
Concernedwife24 in reply toTall_Allen

There are so many different opinions. What would you say about quality of life versus how much longer you get to live? Any studies to back up your opinion? Thank you.

JPnSD profile image
JPnSD in reply toConcernedwife24

I agree...having just recovered from incontinence and ED...hard to plunge back in and start again with disabilities and side effects that become you primary daily experience. I feel totally well at the moment..biking, hiking, kayaking, etc. I would embrace 10 good years...rather than 20 compromised years.

Tall_Allen profile image
Tall_Allen in reply toJPnSD

If you have visible lymph node metastases and do nothing, it may be 10 years, but they may not all be "good." QOL always deteriorates over time. You can't just assume you will feel this good as the cancer progresses.

Tall_Allen profile image
Tall_Allen in reply toConcernedwife24

Yes, the Touijer study (discussed below) suggests that salvage whole pelvic RT with long-term ADT has a survival benefit. They didn't look at toxicity.

pcnrv.blogspot.com/2017/12/...

Perhaps email a link to the Touijer study to your RO and ask for his comments.

JPnSD profile image
JPnSD in reply toTall_Allen

Thank you. Appreciate your expertise and support.

Concernedwife24 profile image
Concernedwife24 in reply toTall_Allen

Thank you. Just the kind of study I was looking for

Magnus1964 profile image
Magnus1964

What are they waiting for. You need to take action now. Start with an ADT drug and radiation therapy.

JPnSD profile image
JPnSD in reply toMagnus1964

Not exactly things I can do without a doctor's direction.

Gemlin_ profile image
Gemlin_

I don't believe a gene test is helpful. High-risk prostate cancer, rising PSA and spread to lymph nodes. That are strong predictors of metastasis disease. You should undergo radiation therapy (RT), IMHO.

timotur profile image
timotur

With +LN, your next step would be at a PSA of 0.2, technically a BCR, then RT + ADT to the pelvic region. Decipher is an independent predictor of metastasis, but not a confirmatory test, such as a PSMA scan. It would be used after BCR, not before, to evaluate the future possibility of distant mets, and possibly give input to the decision on whether to do early chemo or not.

JPnSD profile image
JPnSD

Thank you. I will call. The lymph node was one of 4 removed...and that was the pathology report (micro).

JPnSD profile image
JPnSD in reply toJPnSD

All I got was marketing from a receptionist.

JPnSD profile image
JPnSD

So containment was the observation of the tumor upon removal.....prior to pathology report of microscopic detection in 1 of 4 lymph nodes removed. That put me in Stage 4...but I skipped Stage 3...as seminal vesicles were clean.

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