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How to decide treatment options?
I decided to post this question after my most recent Decipher test results. I have read a number of threads on this subject and it seems to me that if people are happy with their results they recommend their treatment path. If they had a negative experience they wish they would have done a different form of treatment. But it seems this question is one of the questions a lot of men struggle with after diagnosis.
At every stage of diagnosis and testing I have felt that my cancer was caught early and was looking at a very favorable and treatable disease. I won't lie my Decipher test has raised my concern significantly. I have an appointment with my OHSU Knight Prostate Cancer Center surgeon on 6/8 and I am doing research and forming questions for him. I'm also going to ask for another appointment with the Radiation Oncologist. At my first appointments with them I felt like their explanations were given with a Intermediate Favorable position and not with a Decipher score of 0.9. Any input or help would be appreciated.
Here is the detailed information from my testing and diagnosis:
63 years old
PSA History – 3/24 = 1.6, 3/25 = 3.83, 11/25 = 4.6, 3/26 = 3.3 (right after biopsy)
Biopsy Results – Lesions in 2 of 12 cores
Prostate, left base, biopsy:
• Prostatic adenocarcinoma, Gleason score 3+3 = 6 (Grade group 1)
• Carcinoma involves 1 of 1 core, 2 mm, 15% of tissue
• Perineural invasion is present
Prostate, left mid biopsy:
• –Prostatic adenocarcinoma, Gleason score 3+4 = 7 (Grade group 2), 10% pattern 4
• Carcinoma involves 1 of 1 core, 2 mm, 15% of tissue
Comment: Fused and vaguely glomeruloid pattern 4 are seen but well-formed large, expansile cribriform pattern 4 is not identified. Foci of chronic inflammation and atrophic changes are seen
MRI:
TECHNIQUE: Multiparametric and multiplanar MRI of the prostate performed, including axial T1 images of the pelvis and high resolution T2, diffusion, and perfusion pre-and post dynamic intravenous gadolinium images of the prostate.
FINDINGS: Exam mildly limited by motion artifact.
PROSTATE: The prostate measures 4.4 CM transverse by 3.3 CM anteroposterior by 3.5 CM craniocaudal, giving a gland volume of 26 mL. Mild BPH.
A tiny lesion is identified in the left paramedian peripheral zone mid gland, measuring 0.5 CM transverse by 0.4 CM anteroposterior by 0.4 CM craniocaudal, giving a tumor volume of 0.04 mL. The tumor demonstrates:
Low T2 signal: Yes.
Restricted diffusion: Yes.
Early enhancement: Yes.
Delayed washout: Yes.
Overall Pi-RADS classification: 4
A codominant tiny lesion is identified in the left lateral peripheral zone apex, measuring 0.6 CM transverse by 0.4 CM anteroposterior by 0.3 CM craniocaudal, giving a tumor volume of 0.04 mL. The tumor demonstrates:
Low T2 signal: Yes.
Restricted diffusion: Yes.
Early enhancement: Yes.
Delayed washout: Yes.
Overall Pi-RADS classification: 4
With respect to tumor stage:
Likelihood of right-sided extracapsular extension: Absent (0-20%).
Likelihood of left-sided extracapsular extension: Absent (0-20%).
Likelihood of right-sided seminal vesicle invasion: Absent (0-20%).
Likelihood of left-sided seminal vesicle invasion: Absent (0-20%).
BLADDER: Unremarkable.
LYMPH NODES: No lymphadenopathy.
VESSELS: Unremarkable.
BONES AND SOFT TISSUES: Unremarkable.
IMPRESSION: Two tiny left peripheral zone PI-RADS 4 lesions. No evidence of extraprostatic extension.
Prior to Decipher test results both Surgeon and Radiation Oncologist agreed my NCCN was Favorable Intermediate-Risk group. AJCC = IIB. AJCC = IIB. TNM = T1c N0 M0.
Both felt active surveillance was a very good option.
Decipher Test score = 0.9 High Risk
After the Decipher result both Surgeon and Radiation Oncologist agree that they would not recommend active surveillance now.
Thank you.
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HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
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I still think you have a lot of options. The decipher score & "Perineural invasion is present" are the only things concerning. Just my opinion but I would not have surgery to remove prostate. 40-50% of men who have prostate removed end up needing radiation anyway at some point. There are so many options available for someone with your stats. Take your time and don't rush or get pushed into a treatment you will regret later. Prostate is typically a slow moving cancer so no need to rush!
I would get 2nd & 3rd opinions from "prostate specialist" usually found at univ hospitals, cancer centers of excellence like Mayo clinic, John Hopkins, UCLA, Sloane Kettering NYC, Univ of Penn, Fox Chase, etc. You can also get consultations from doctors with video conferences. Medicare will pay for video consultations. Best of luck
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Hug
3 ReactionsI am also trying to determine treatment options.
From everything I have been studying, Active Surveillence is still a good option for you.
Minimum number of positive cores. Small percentage of pattern 4. No ECE. Relatively low PSA.
I would only be discussing and thinking about:
1. When to have another MRI and biopsy for more information. Are more 3+4 cores to be found?
2. As long as PSA does not continue to rise, 2027 may be good for next biopsy.
3. Decipher is a piece of the information, not a direct diagnosis.
Best wishes.
Having experienced surgery buyers remorse I would suggest that you research if you might be good candidate for the Tulsa procedure. Less invasive, fewer side effects and all surgery and radiation options still open .
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Hug
4 ReactionsSince both lesions were on the same side of the prostate you might be a good candidate for focal therapy which ablates the lesion. Besides Tulsa Pro there is laser, IRE (DC current), and Cyro. All of these have less of an impact on quality of life and preserve future treatment options. The disadvantages are higher recurrence rates and getting insurance coverage (except classic Medicare). This is sort of the middle road between active surveillance and going through a full treatment of RP or radiation which effectively destroys the prostate and seminal vesicles.
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Hug
1 ReactionThe most important thing in my experience is to not be rushed into treatment. Take your time, do your research and seek other opinions. I have a very similar diagnosis and have been on active surveillance for 3.5 years.
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Hug
2 ReactionsYou guys are all much tougher than I am. I lose sleep thinking whether I made coffee. I was a 3+3 with 1 out 12 on the biopsy. No rise in PSA. 1.0. I opted to remove it and be done. I suffer from both ED and INC but 6 years now not a thought about perineal invasion or cribriform or decipher tests. I thought about Tulsa but not covered under insurance and I would still have it in me. Seemed likely if it returns I can go any direction.
All the comments about focal therapy make excellent points - even your biopsy states “two tiny…”
It’s the Decipher score that throws a wrench into everything and seems to call for more aggressive treatment…
However, focal therapy can kill PCa cells just as effectively as radiation and the single most important consideration is the clinical experience of the focal surgeon.
Many surgeons “do” focal, but are they experts? No, not very many are.
You want a surgeon - or center that primarily (or only) does focal therapy day in and day out. TulsaPro has a fairly long track record and their surgeons really know how important the location of the tumor inside the gland will affect the outcome; in fact, a good focal surgeon will NOT treat you if the probability of success isn’t high enough. Good Luck!
Phil
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Hug
4 Reactions@copyman
Thank you. I have already gotten a 2nd opinion from a prostate cancer team at OHSU Prostate Cancer Center. It is part of the Knight cancer center (as in Phil Knight of Nike). It is a center of excellence.
Well...
Advances brought about through medical research have greatly improved the clinical data we can collect about our PCa as well as treatment choices.
That's the good news...
But, the plethora of data and treatment choices may lead to paralysis by analysis...
What clinical data do we need to make a decision
What clinical data constitutes sufficiency to initiate treatment.
What treatment:
Active Surveillance
MDT
Systemic Therapy, if so, doublet, triplet, which agents, how long, criteria for de-intensification..
The NCCN and AUA guidelines may be a good starting point for discussions with your medical team, though as I have said, they are population based (so are clinical trials) and because of the scientific rigor, may be dated.
As others have said, you may not need to rush into a decision. - https://www.urotoday.com/recent-abstracts/urologic-oncology/prostate-cancer/168250-natural-history-of-untreated-prostate-cancer-a-comprehensive-review-of-long-term-progression-patterns-and-survival-outcomes-beyond-the-abstract.html
Kevin
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Hug
4 ReactionsDr. Claire de la Calle was interviewed about how she makes decisions about active surveillance:
She feels that any time on active surveillance is a good thing, as it gives a patient more time with their life before the side effects of treatment.
She discusses so many variables of a prostate cancer workup and the weight she puts on each factor that she takes into consideration, that any patient would have to wonder how on earth can a de novo patient get up to speed to participate in what the prostate cancer world calls "shared decision making".