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Posted 8/30/2023 10:03 AM (GMT 0)
So I am 5 years post intumial biopsy. Had 2 out of 14 cores positives 1st time. Just had 5 year check. Still have a Gleason 6, they went transperineal this time. Had 6 out of 17 cores postive. All Gleason 6.

I asked for Decipher testing 0.7% 5 year 1.7 % 10 year. Risk of metastasis.

1.6% 15 year mortality.

24.5 % @RP risk of adverse pathology

I don't know what this means. Dr has went from for sure AS to thinking no more AS. I'm 48. The side effects of a RP doesn't appeal at all. Being able to hold my urine and have intercourse are significant quality of life items.

Not sure what avenue to take. Don't know how to read Decipher testing.
Posted 8/30/2023 10:24 AM (GMT 0)
Jmurph,

You're still solidly G6, so I don't know why your doc wants to pull you off AS. I'll wait for others to weigh in with their thoughts.

All I'll say is: Surgery is not the only option. Many of the current Radiation therapies work very well, and take very little time, effort, or recuperation time.

For me, if SBRT(Cyberknife) had been available when and where I was treated in 2015, I would readily have gone that route. And I'm a guy who has had a totally uncomplicated surgical outcome. I hit trifecta within 6 weeks.
Posted 8/30/2023 12:13 PM (GMT 0)
Just a guess, the Dr may be thinking too many cores, even if it's G6.
I don't understand the Deciper scores, my understanding was always that it was a fractional number between 0.00 and 1.00.

I agree with Hal, regarding SBRT
Posted 8/30/2023 1:50 PM (GMT 0)
Murph, I'm guessing it's the number of cores that has your uro a bit worried. I suggest you get the pathology slides sent to Johns Hopkins at this point. They are the best at reading prostate pathology and that way you will have a better view of what you may or may not have.

Jim
Posted 8/30/2023 3:14 PM (GMT 0)
The number of G6 cores isn't the problem (although it is true that a guy with 6 cores would not be a good AS candidate). Rather its the nature of your particular cancer.

If you look at the "Test Description" section at the bottom of your Decipher Prostate report, it explains that "adverse pathology" means that were you to have surgery now so your status could be accurately determined, the percentage shown in the report is your risk of actually being Grade Group 3-5 (Gleason 7 to 10), pT3b or pT4 (seminal vesicle involvement or worse), and/or be found to have one or more regional lymph nodes with cancer. In other words, you would be upgraded because your cancer is not G6(3+3) at all even though all your biopsy cores happened to sample only Gleason 6 tissue. (Prostate cancer is called a "heterogeneous disease" because men often have cancer lesions with different Gleason scores. However, a prostate biopsy samples a minute amount of tissue. This is why perhaps a third of G6 men who choose surgery have their Gleason score upgraded after the whole prostate is sampled and examined.)

The results in your Decipher report are based on the examination of the RNA in your particular prostate-cancer cells. So another fellow in your situation with, say, 6 cores of Gleason 6 cancer could get back a Decipher Prostate report with a very low % risk of adverse findings: his cancer would more likely be and remain indolent, and he might be able to stay on AS for the rest of his life.

A 1 in 4 chance of any of the above adverse findings means active surveillance is no longer for you and it's time to seek treatment, as your doc advises. But of course the decision whether to treat now is yours. (Note that Decipher results do not speak to the relative merits of surgery over any other treatment, e.g. radiation, but they reference post-surgery grading and findings because they accurate assesses the status of one's prostate cancer in the pelvis.)

I suggest looking over the report carefully, making some notes, and discussing all this in detail with your doc. He'll correct or confirm what I've said. Remember--we are not doctors!

Djin
Posted 8/30/2023 6:15 PM (GMT 0)
Murph, At the young age of 48 and an increasing number of positive cores it’s a good time to be investigating treatment options. This certainly is a disease where one size fits none. Every treatment comes with risks. The good news is you have plenty of time to evaluate treatment options and most options are likely to provide you a cure. This is a good place to start the treatment search.

I chose SBRT since it was effective, safe, offered low risk of urinary and sexual side effects and was done in five treatments. No regrets. That said; I’m only a data point of one. Feel free to ask questions. Terry
Posted 8/30/2023 6:25 PM (GMT 0)
Recommending to take action now. In 30% of cases the cancer is upgraded after surgery. Mine went up from 3+4 to 4+3.
Posted 8/30/2023 7:37 PM (GMT 0)
I was lucky. My 3+4 stayed at 3+4. But the shocker for me was the path report indicated it had grown outside the capsule making me a pT3a & putting me at increased risk for recurrence. No MRI prior to. Again, I lucked out. 7 years later I remain undetectable. A couple docs told me some studies indicated AS is still an option for a 3+4. I'm no gambler and took the 'err on the side of caution' approach in life. But everyone has a different stomach for risk. I'm not one to roll the dice when it comes to cancer. Opting for the surgical table or RT with a 3+3 is a tough one. No idea what I would do, other than get the best medical advice I could afford.
Posted 8/30/2023 9:31 PM (GMT 0)
I.shoud have noted I have a yearly MRI and have for 5 years plus 2 PSA a year. Last PSA was 2.6. MRI has never shown any evidence of anything. No cancer detected. No lesions

My PSA history has been 2 times a year for 8 years. Only 1 was above 3.0. It was 3.9

Every other has stayed between 2.5 and 2
9

Case Number
View
FINAL DIAGNOSIS
A. Prostate, right posterior medial apex, needle core
biopsy:
Benign prostatic tissue

B. Prostate, right posterior medial base, needle core
biopsy:
Benign prostatic tissue

C. Prostate, right posterior lateral apex, needle core
biopsy:
Benign prostatic tissue

D. Prostate, right posterior lateral base, needle core
biopsy:
Benign prostatic tissue

E. Prostate, right anterior horn, needle core biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score 3 + 3 = 6
Grade Group: 1
Tumor involves 5% of overall specimen (1 of 1 core).

F. Prostate, right anterior apex, needle core biopsy:
Benign prostatic tissue

G. Prostate, left posterior medial apex, needle core
biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score: 3 + 3 = 6
Grade Group: 1
Tumor involves 30% of overall specimen (1 of 1 core).

H. Prostate, left posterior medial base, needle core
biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score: 3 + 3 = 6
Grade Group:
1
Tumor involves 10% of overall specimen (1 of 1 core).

I. Prostate, left posterior lateral apex, needle core
biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score: 3 + 3 = 6
Grade Group: 1
Tumor involves 20% of overall specimen (1 of 1 core).

J. Prostate, left posterior lateral base, needle core
biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score: 3 + 3 = 6
Grade Group: 1
Tumor involves 30-35% of overall specimen (1 of 1 core).

K. Prostate, left anterior horn, needle core biopsy:
Prostatic adenocarcinoma
Type: Acinar
Gleason score 3 + 3 = 6
Grade Group: 1
Tumor involves 5-10% of overall specimen (1 of 1 core).

L. Prostate, left anterior apex, needle core biopsy:
Benign prostatic tissue

M. Prostate, right anterior medial, needle core biopsy:
Benign prostatic tissue

N. Prostate, left anterior medial, needle core biopsy:
Benign prostatic tissue

Post Edited (Jmurph) : 8/30/2023 1:40:43 PM (GMT-8)

Posted 8/30/2023 9:43 PM (GMT 0)
My significant other wants me to have it done at John's Hopkins instead of Mayo. My Dr went to Abu Dhabi

Supposed to come back. UT hasn't yet.

Post Edited (Jmurph) : 8/30/2023 1:47:14 PM (GMT-8)

Posted 8/30/2023 10:13 PM (GMT 0)

Jmurph said...
My significant other wants me to have it done at John's Hopkins instead of Mayo

I'm assuming you are talking about RP.

In your original post you said: The side effects of a RP doesn't appeal at all. Being able to hold my urine and have intercourse are significant quality of life items.

Why not follow your gut and look into the various forms of radiation treatment? RT will get rid of the problem at least as well as RP. If you just go ahead and do RP, you could be setting up a lifetime of treatment regret.
Posted 8/30/2023 10:27 PM (GMT 0)
Mayo has told me my best and sure fire option due to age is RP and likely of full recovery and function. They haven't even given ne other options. I've learned more on this forum

Post Edited (Jmurph) : 8/30/2023 2:48:42 PM (GMT-8)

Posted 8/31/2023 1:32 AM (GMT 0)
You have to be your own advocate in today’s medical world. Just ask for a referral to their radiation oncology people for treatment options or just make an appointment. I sent a friend down to Mayo and he explored both options there. Ended up having radiation treatment in Twin Cities as the recommendations were the same, 28 EBRT + ADT. I know some people that had surgery there and they seem to have done ok, they have a couple of good surgeons to seek out from what I hear.

Your young age commonly tilts the scale towards surgery but you have to talk with RO’s and get their thoughts. Don’t be surprised if they suggest surgery as well due to age considerations but you owe it to yourself to explore options.
Posted 8/31/2023 9:04 AM (GMT 0)
jmurph,

What we have seen in here, and in the literature, is that there is a real thing called treatment regret, in which PC patients get passive about their choices and just do what the dr says, and doesn't dig deeper.

Consider this: if you have surgery, and you have the ugly side effects, will you always wonder, "I should have at least talked to the Radiologists"?

If, after you've talked to them, had them review your records, and still go for surgery, then it goes badly, that particular form of regret will be lessened. Don't forget, doctors are people too. They have their own preferences, biases, and self interest. If all the people you talk to are surgeons, then in a case like yours-early stage, likely uncomplicated, you're relatively young and healthy, etc., you're ideal for surgery.

Oh, don't fall for the "if you have radiation as primary treatment, you can't have surgery later" line. Really think this one through. It assumes that your primary treatment will fail. In your case, the odds of THAT are so low to be almost laughable. It assumes also that if radiation fails there are no other options, and you're on the fast track to death. Also totally false. You're G6.

I say all this, having seen too many guys in here rant on and on for years after, because they were an uncomplicated G6, with no other indications (positive MRI, etc), and had a bad surgical outcome, about how their surgeon actively discouraged them from looking into Radiation. We thought this was becoming a thing of the past. It appears not.
Posted 8/31/2023 11:00 AM (GMT 0)
Murph, that's a great post from Halbert above. You need to carefully explore your options before pulling the trigger on a potentially life changing decision. While it's true that your young age means that you'll likely recover better from surgery than an old guys, it also means that you could face a longer lifetime of negative side effects if the surgery leaves you incontinent and/or impotent.

I get that your significant other prefers "getting it out". My wife did also as that's a typical first reaction to learning of cancer. But, after 15 years of great sex life and no incontinence since I had radiation, she is really happy I looked at radiation options. I'm not saying radiation is right for you but do your due diligence and check out the options. Rushing into any treatment is a fool's game.

Jim
Posted 8/31/2023 11:53 AM (GMT 0)
ps: I forgot to mention that your pathology and Decipher scores do not make a compelling slam-dunk case for treatment at this time so you probably want to explore that more. You should be in no hurry to do anything at this point, plenty of time to study the “to treat or not to treat” options. Having Mayo sent the pathology slides to John’s Hopkins pathology for a second opinion might be a good idea so you confirm exactly what you have.
Posted 9/1/2023 5:14 AM (GMT 0)
Thank You so much. This was eye opening. All I've been told is surgery surgery. No options for radiation at my age. Could cause horrible outcomes down the road. Wasn't even offered a Radiologist visit. I'm going to explore that.

I've qorked.in surgery at Mayo and in surgery for 23 years. Surgeeins cut and ask questions later. With this seems unjust. IMO
Posted 9/1/2023 9:26 AM (GMT 0)
Murph,
Bless you.

I love your comment: "Surgeons cut and ask questions later".

We are simply saying, it is best to explore all your options before the fact. As I said at the beginning, I'm a surgical patient who has had a great outcome. The options were much more limited then (going on 9 years ago) than they are now. The major options are:

External beam. This is what we think of as classic radiation treatment: 30-40 treatments, you on the table getting zapped. This can be isotope or proton.

Brachytherapy. They insert seeds of radioactive material inside you to cook the tumors from the inside. This also comes in a couple possible flavors.

SBRT, sometimes called Cyberknife (brand name). They insert precious metal--gold usually-pellets inside the prosate to aim at. Usually 5 treatments over 2 weeks and done.

If possible, talk to people who specialize in all the different modes available. The only drawback that I see is that you won't ever have the pathological certainty of knowing how bad, by Gleason score, your cancer was. Aleo, you need to be prepared to watch your PSA take a while--up to 2 years--to reach it's low point--it will never go to zero.
Posted 9/1/2023 12:04 PM (GMT 0)
Murph - try to prepare a list of all the cancers that are not primary treated with surgery and you see where the historical bias is. Right or wrong, doctor’s have been slow to embrace alternative primary treatment methods for a variety of reasons.

IMHO, nuclear testing in NV, the atomic bombs dropped in WW II, and power plant accidents led to incredible collateral damage from radiation years after exposure which tends to influence the reluctance to use radiation on younger patients unless absolutely necessary. I have no idea what the correct answer is to these concerns but the final decision should rest with a well informed patient which is what you need to become. Welcome to the PCa abyss.
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