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Prostate Cancer Network
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Hi All,

I guess I am one of the newer members of the club nobody wants to join. I have been lurking for a few weeks, but finally decided to spill my guts. I was diagnosed with PC around Christmas of 2018, had RP in Feb of 2019. I just had my first post procedure PCA test which came to .8, where the doctor was looking for .2 to declare victory.

I suspect this means more treatment in my future, but am not yet sure. Will see the doctor next week and find out.

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Your the only other Irish person I have found on here. I live in Tramore, Co Waterford. Have a look at my posts and you will see my story. I’m having Stereotactic radiotherapy in The Beacon Hospital, Dublin soon. Sorry to hear your news. Although.8 is high after RP I was told that it takes a few months for the PSA to reduce fully after surgery and only had it tested 3 months after surgery. They will want to confirm the levels with a further PSA test probably in six weeks before they start further treatment. At least that’s what they did with me however if it’s confirmed you are probably looking at more treatment okay. I went to Germany for a PSMA-PET scan and they found it in another lymph node which is why I’m having the specific radiotherapy.

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I'm more of a wanna be Irish than in reality. My family has been in the US for 5 generations now, but with an Irish last name (Callahan) and a lot of pride in the homeland it was the first thing that came to mind when setting my screen name.

I have really no clue what is happening, but I have Doctor's appointments already set up for six weeks and four months out. They expect you to have had a second test by the four months. I guess they want both to see the trend. That is probably when they make the treatment decisions, but as I said I am clueless.

I am starting to learn to consciously not worry about what COULD happen in the future. Not something that comes naturally to anyone, I think.

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I’m a bit disappointed as I thought I had finally found another guy living in Ireland. Although 6 weeks is a bit soon your PSA result is high for a post surgery and to be honest I wouldn’t be waiting for 4 months. I think if the result is confirmed you probably need further treatment sooner rather than later. I was advised that they would not consider external beam radiotherapy until 6 months after surgery because it takes the body that time to heal but might put me on hormone treatment before that. In Ireland they start treatment when the PSA level goes above 0.1. and you are already a good bit above that. My PSA was 0.035 three months after surgery and went to 0.05 at six months. The trick is to find where the cancer is now. Standard scans may not pick it up at your low PSA level. If you had any positive margins from surgery that would give them somewhere to treat however if it’s possible a PSMA-PET scan would give more details. With luck maybe radiotherapy to the prostate bed and lymph nodes would do the trick. Best of luck to you. There are guys on here much more knowledgeable and experienced than me and I’m sure some of them will respond. Best of luck when you meet the surgeon next week. I would advise you to prepare all your questions beforehand and take notes so you remember what answers you gat. Also a good idea to take someone with you.

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Talk to a radiation oncologist, rather than a urologist.

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I agree with Tall_Allen

The urologist has done whatever he can do. The next steps will either be radiation or androgen deprivation drug (ADT) therapy. Radiation therapy can only be given by a radiation oncologist.

Radiation therapy can cure some men in your situation but, statistically, only a minority of men are cured. For the best chance you would need to see a radiation oncologist who is highly competent and has done a lot of work with prostate cancer. If your cancer is localized into one or a few spots, it's critical that he find them and deliver the right dose to them. On the other hand if the cancer is in diverse places, radiation can't find and cure it and you'll have to consider drug therapy to hold it down. In that case you'll want to find a good medical oncologist with a specialty in prostate cancer.

In the U.S., the National Cancer Institute maintains a list of hospitals and clinics that they recommend for the most advanced care. See: cancer.gov/research/nci-rol... . Also get recommendations for rad oncs from your urologist and, if possible, other patients.

I also recommend that you join the Health Unlocked Advanced Prostate Cancer group where patients with cancer that was not curable by initial treatment participate.

You're facing a future with some life changes, but we have seen many men in your situation who live years and even decades with incurable cancer, and as the treatments get better and better the mean survival time keeps going up and up.

I wish you the best of luck.

Alan

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best of luck Irish Dude (1/4 Irish-American here)

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I am 35% Irish and my wife is a McGraw. Welcome, your PSA is still low, so you might consider radiation if the cancer has not spread beyond the prostate.

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I'm not sure, and haven't talked to the Doctor yet. He was pretty sure he got it all in the surgery, but then the pathology report shows 1 of 30 lymph nodes harvested was positive for cancer. I am assuming that given these circumstances further treatment will be in order.

The general consensus seems to be that this would most likely involve some ADT therapy very soon to hold things in place until I heal from the surgery, followed by radiation some months down the line.

However I have read some study's that seem to imply that if your PSA has never gone undetectable after surgery then most likely it is a distant microscopic metastasis, and radiating the prostate bed is locking the barn door after the horse has already gotten up.

Obviously a great conversation to have with the Doctor.

I appreciate all of your thoughts and advice. It is hard to get up to speed in this new world without knowing the path others in your situation have experienced.

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u got this ...

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Irishdude,

At this point, speaking to your urologist seems useless, other then for ADT. Chances are you will need some sort of radiation treatment. Do some research and find a top rated radiation doctor in your area and make an appointment to see him. You do need about six months to heal up after RP but you can start getting your ducks in a row now. If you post the area where you live I’m sure some folks will stop by with some Suggestions on radiation docs. Best of luck.

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Yes, there will most likely be more treatment. What was your pathology (gleason score, margins, etc.) and age?

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After the pathology report I was set at a Gleason 9. I am 61. I don't know about the margins, but was told that they stalled the procedure long enough to send some tissue to the lab. As I said the surgeon was quote confident that he got it all. I suspect he might be right, he got all that was in that spot.

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I am sorry you are part of this club-that-nobody-wants-to-be-a-part-of. A postop 0.8 PSA is high, though get another in 3 months (you should be getting them every 3 for awhile). It should be under 0.1, undetectable. Even your doctor's 0.2 to declare "victory" is disturbing. For one thing, anything above .1 is considered chemical recurrence. Your doc should know that. Second, "declare victory"? Maybe after 7-10 years of undetectable PSAs. I think you're a candidate for further treatment, for which I am so sorry.

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Well to be fair the "Declare Victory" was my interpretation. They know 1 month is too early to be undetectable, but apparently .2 is what they see when it on it's way to undetectable. Their normal MO is one test in 4 weeks, then another in a couple of months. What exactly they do with these results I will be finding out I guess.

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welcome

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First, welcome. Second, I think most of us "lurk" at the beginning. Third, it takes three points to plot a trend so try not to obsess over PSA. HARD. But try. Check the studies on POMI-T and its effect on PSA.

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I cannot say that my first thought upon hearing I had PC was to consult the internet. Maybe that shows my age. I did not find this site until 2 or 3 years after I had surgery. I did find a prostate cancer support group almost immediately after I had surgery. I went to their meetings for many years. Not exactly an uplifting group of people as several had been at this battle for over 12 years. Then one day you don't see them anymore. I did it more for the newbies that walked in looking like a deer in the headlights.

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POMI-T looks promising, it certainly can't hurt. There is probably a lot I need to learn about supplements, quickly.

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Not only can't hurt but also studies showed it effective. As to all those other supplement: be cautious. A lot is bull shite

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Good luck. Be patient.

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