Diagnosed Today

Posted by broderbund1 @broderbund1, Feb 26 2:19pm

Hi -

I'm 59 years old and just received biopsy results today. Two areas of 3 + 3 were noted and one 3+4 with 10% pattern. Most recent PSA was 3.5 and PSAD was .06 so a bit shocked at the news.

From what I've read I'll have options but my first inclination is to opt for radiation to eliminate all three spots. I know Mayo is great and will likely visit there but where would you recommend going in addition to Mayo for a second opinion as to treatment? I'm fortunate to have the means to go and then stay if need be anywhere for treatment.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for copyman @copyman

I would also get a GPS test https://mdxhealth.com/gps-physician/. This is similar to the decipher test but better for newly diagnosed localized PC, and help with treatment decisions. The decipher is better for recurrences after treatment. Best of luck

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@copyman After treatment? Kinda late by then, isn’t it?

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Sorry to hear of your diagnosis. We all make our own decisions based on what our physicians say, and your discussions with family.
Some here have told you that with your Gleason Score you might be a candidate for Active Surveillance. Others may tell you that they went with radiation first, despite making it nearly impossible to surgically remove the scarred prostate thereafter - described to me by my urologist as a walnut sized chunk of concrete after radiation. Others like me will recommend having the radical prostatectomy immediately, and here is my testimony as to why:
My urologist was all happy and confident when my Gleason Score came back, saying “we caught it early”, because I was barely a Gleason 3+4=7 with just 6-10% of cells on the second slide reviews being graded “4” cells. I was close to being a 3+3=6. I had three normal/negative cores, three 3+3=6 cores, and six cores that were that minimal 3+4=7. When discussing my options, my physician basically told me he doesn’t do Active Surveillance…”you’re just giving your cancer two more years to get worse.” He also doesn’t do radiation “first” because of what I wrote above. So, I had the prostatectomy. I’m glad I did. My urologist was humbled…almost shaken by my post-surgical pathology report where the entire prostate was dissected as well as seminal vesicles, and vas deferens. And this is where I came up with my saying that the “Gleason Score is only the tip of a very large iceberg with massive things unseen underneath.” That Gleason Score comes from the sample of very few cells and says nothing about the anatomical and microscopic disease features of your prostate. Based on my Gleason Score my urologist and I expected a T1 or T2 classification of my cancer. “Wrong”. Lurking under that “tip of my iceberg” Gleason 3+4=7 was: Extraprostatic Extension, surgical margins, Cribriform gland tissue, and left seminal vesicle invasion (no tumor or nodules, just cells). That shot me up to a pT3b category with a 25-50% probability of the cancer returning “within” 5 years”, even though the prostate, seminal vesicles, and vas deferents are now gone…it just tends to come back up to half the time. ***Had I resisted and done two years of Active Surveillance, I would have ended up as a Gleason 8 or 9 with far worse growth in my left seminal vesicle, with likely spread to the right seminal vesicle, involvement of the bladder neck, and likely spread to one or more lymph nodes, perhaps even bone. So…
The bottom line, is the Gleason Score is really useless in identifying the true extent and pathology of what is going on with the prostate as a whole. It merely tells you “Yes” you have cancer or “No” you don’t have cancer.
I am a living example of how your prostate cancer can be far worse than the Gleason Score might suggest, and how Active Surveillance, even with slowly increasing PSA levels can hide serious pathology that may take you beyond the possibility of outliving it. Please ponder that long and hard.
Also, think about the other men in your family who may have had prostate cancer - surgically treated or not, and what they went through, and if it killed them or if they survived it and died of something else. You will likely have the same experience (familial genetics at play).
To all the guys like JeffM and others who have read my story before, sorry for the repeat. There are sadly too many newly diagnosed guys joining this Mayo blog who need to know the vast diverse presentations of prostate cancer and its outcomes. Good luck

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There are not three spots on your diagnosis. The entire prostate is treated or surgically removed.

In your area, nothing beats Mayo Clinic.

If you do radiation, you will more than likely have ADT for 4-6 months. If you choose RALP, no ADT but much worse QOL outcomes.

Take some time to research the processes and outcomes before you pull the trigger.

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Hi, too bad for your diagnosis. I'm being treated at Memorial Sloan Kettering in New York, but I got two second opinions from Mayo and MD Anderson. All three of those are known for their excellence for cancer care and research. I'm so happy that you are reaching out to get other opinions as you only have one life and need to fight with all you have.
There are others, but I felt confident with my choices, and they all came to the same conclusion for my care which make me feel better as I've made bad choices in the past for health care. There are some bad players out there.
You picked a good group here to help you along your way.
BTW, if you choose radiation, not all radiation machines are created equal and I'm not sure if all centers of excellence have the newest and the best equipment. My radiation was only 5 sessions for the prostate and three for the pelvis. Some machines require many more sessions to accomplish the same results. Ask questions about the number of sessions needed if you go that route.
Dave

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I always under care of two oncology resources. One, local oncologist with real communications skill. The other an ongoing oncology consult at oncology research and teaching hospital. Best of both worlds.

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Profile picture for surftohealth88 @surftohealth88

@copyman

You are completely wrong about Decipher.

It actually has some value after recurrence BUT is best done before ANY treatment is initiated since it can inform patient if AS is at all advisable.

It also helps with decision about adding ADT or not for initial RT treatment etc.

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@surftohealth88
I said GPS was similar to the decipher test. From what I've read the decipher can be used before or after TX but is used more for re-occurrence. Many doctors don't even do the test before treatment. This is why it's important for the patient to ask for it.

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Profile picture for heavyphil @heavyphil

@copyman After treatment? Kinda late by then, isn’t it?

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@heavyphil
I meant for re-occurrence after treatment

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Profile picture for copyman @copyman

@heavyphil
I meant for re-occurrence after treatment

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@copyman Okay, so how does it help after treatment? Decipher tests for aggressiveness and if your cancer comes back after primary treatment, it is more aggressive by definition.
You want to know before primary treatment just how aggressive your cancer might be; if it is, you might need ADT, you might need surgery first followed by adjuvant radiation, etc.
Using it afterwards ‘could’ be helpful if certain genomic mutations are observed but it wouldn’t really change anything as far as treatment is concerned, as far as I can see. But I guess there are always cases where every bit of info is useful. Best,
Phil

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Profile picture for bonanzaman @bonanzaman

Hi, too bad for your diagnosis. I'm being treated at Memorial Sloan Kettering in New York, but I got two second opinions from Mayo and MD Anderson. All three of those are known for their excellence for cancer care and research. I'm so happy that you are reaching out to get other opinions as you only have one life and need to fight with all you have.
There are others, but I felt confident with my choices, and they all came to the same conclusion for my care which make me feel better as I've made bad choices in the past for health care. There are some bad players out there.
You picked a good group here to help you along your way.
BTW, if you choose radiation, not all radiation machines are created equal and I'm not sure if all centers of excellence have the newest and the best equipment. My radiation was only 5 sessions for the prostate and three for the pelvis. Some machines require many more sessions to accomplish the same results. Ask questions about the number of sessions needed if you go that route.
Dave

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@bonanzaman
Just FYI, the numbers of radiation sessions isn't dependent on the quality or state of the art of the radiation machine, be it a linear accelerator/LINAC (photons) or a cyclotron (protons). Generally, the key factor is the total radiation dose as expressed in gray (Gy). The total dose is almost always divided into fractions, delivered daily or every other day. Both the total dose and the number of fractions is decided by the Radiation Oncologist (RO) dependent on a number of factors. In many cases there isn't a definitive "right way". The RO may decide to deliver, say, 30 Gy in 3 fractions or 5 fractions. In primary treatment of prostate cancer a total of 35-45 treatments are administered at a daily dose of 1.8-2 Gy. Some RO use higher daily dose so less number of treatments, but still the approximate same total dose. Radiation is fractionated because the radiation damages normal, healthy tissue also. But healthy cells are more efficient at repairing the damaged DNA (the target of the radiation) than are cancer cells. So by fractionating the dose the normal cells have a better chance of surviving than the cancer cells.

I practiced Radiology for 45 years so I have a modicum of knowledge about radiation treatment. Sometimes radiologists are confused with radiation oncologists but they are 2 entirely separate specialties. Radiologists interpret various imaging studies (MRI, PET, CT, US etc) and RO administer radiation to treat cancer.

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Profile picture for copyman @copyman

@surftohealth88
I said GPS was similar to the decipher test. From what I've read the decipher can be used before or after TX but is used more for re-occurrence. Many doctors don't even do the test before treatment. This is why it's important for the patient to ask for it.

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@copyman
It is quite common at UCSF to do the decipher test before treatment. That can decide whether or not ADT is necessary after treatment , And is also a factor in other treatment options.

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