Advanced Prostate Cancer
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Anne for Ron

hello. My husband had been on Lupron (ADT) for just over a year. he had been diagnosed with advance pros ca Jan 2016 with mets to bones. His PSA was only 11 so i think from the research i have done that he is what you would call a PSA negative case in that he already had advanced cancer when the PSA was significantly lower than majority of cases of advanced disease. His Ca was advanced on initial diagnosis. This was unfortunate. Anyway. he has now been off Hormone Tx for six months and his negligible pSA is now 1.7 and Test 10. Long story short I just need some reassurrance that things are still OK. What happens next? Do we need 3 consecutive rises in PSA and then we restart ADT? Is it worse for him having the PSA show up again in such a short period of time off ADT? We will see his urologist Jan 23....Should he be referred to an Oncologist soon? Thank you for hearing my concerns. Anne For Ron

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Hi Anne,

Ron was on Lupron for 1+ year & off for 6 months. You give his numbers for PSA & T.

In the off-phase of intermittent ADT [IADT], T begins to recover. It takes time. But a testosterone [T] of 10 (ng/dL?) after 6 months is strangely low. Do I have the correct units? 10 ng/dL is still castrate. Perhaps his baseline T was also very low?

If T really is 10 ng/dL, there is no point in resuming Lupron right now, or while he remains castrate.

It is normal in IADT for PSA to rise during the off-phase. The PSA settles down when T gets above ~250 ng/dL, but PSA movement makes people nervous.

IMO you should not be concerned about his PSA of 1.7.

I wonder if Ron will recover normal T levels (>350 ng/dL)? To my mind, the PSA doubling time once T is >350 tells the story. With super-low T, I can't see the PSA numbers shooting up.

But keep reporting the numbers.

Best, -Patrick

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This all seems about right to me, too. As to having an oncologist on his team, I would do that now. A good questions for the next visit with the urologist is when will he have new scans? If, in fact, he grows cancer without PSA rises, then you'll want to keep track of things another way.

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I think Canad and US have the same units for PSA but we may have to add a '0" to the Testosterone results.... so 10 would be 100 maybe? Does that seem right?

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The waiting game is never easy. A value of 11 for the PSA is lower than normal but it may not indicate that he has one of the rare forms that do not produce PSA. There are certain cancers, like Ductal, that I have, which do not produce a lot of PSA. My PSA was 4.7 when they found it. You may be able to get some answers from his biopsy. First, the biopsy report should of described what type of prostate cancer your husband has. Second, you could ask if they can stain a biopsy slide for sensitivity to PSA. In my case, about 30% of the cancer does not produce PSA. The concern is that the PSA negative cancer may be more agressive and spread faster.

Hopefully he does not have one of these rare forms. There are many men here with “normal” prostate cancer but who also had low PSA readings. In my case, with Ductal prostate cancer that does not produce that much PSA, I have to have scans at least twice a year, though for a number of reasons they now bumped that to four times a year.

I would definitely recommend that your husband get a medical oncologist that specializes in prostate cancer. They would be a lot more knowledgeable than an urologist. Again, make sure that they specialize in prostate cancer.

Finally, please know that everyone here is pulling for you and your husband. Finding out you or a loved one has cancer is hard. But please note, there is every reason to believe that the two of you have decades and decades to be together. Please be extra careful on what you read on the web, especially dealing with life expectancy. I can not tell you how many men here that are still with us decades after the web stated that they “should “ of died.

The two of you are now part of our family. You will never be alone again. As the song says “people like us we have to stick together “. We are with you, always!

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thank you so much!

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Also, we thought his CA should be monitored with more scans too so we actually had his GP order one for us. It was a good scan showing shrunk ca all over and no ca in some places. even if it is just to ease our minds i find those scans helpful because we dont really trust psa results that much

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6 months is par for the course...you need a MO....most Docs start ADT at PSA 2

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It’s a commonly heald belief that its best to have a prostate cancer specialist if it’s possible. I believe you need more then a Urologist..Mine made some calls early on that the Uro didnt confer with immediately .The main one was to give me RT instead of 5days a wk chemo for six months as the Uro had suggested. I still feel relieved that I avoided chemo so far. Now flash forward near 3yrs and I.ve had a neg Psa and no visible signs for the past 11/2. what we all hope for.. As you read these pages more it should become immediatly evident that this is a life change and something that we all will deal with and live with as long as we are here.. Good luck and God bless!

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Anne,

As others recommend, Ron needs to see a medical oncologist who specializes in prostate cancer. I would not wait.

If you let us know what city (and country if you live in if it’s outside the US), I’m sure our friends can recommend a doctor.

Best of luck in the journey! We are all pulling for you both!

James

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Anne, as several have mentioned, see a medical oncologist now. Skip the urologist. I was dx with PCa last March and immediately put on ADT. My Onc said I will be taking shots of lupron for the rest of my life. So far so good. I've recovered from the bone pains. My PSA continues to be very low. Please keep us posted.

Nick

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He should be with an oncologist now. Preferably one who specializes in prostate ca.

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I agree with all of the above concerning finding a Medical Oncologist that specialises in prostate cancer. I'm not a doctor, but if I was a situation with a low PSA and advanced cancer I would be trying to see if I could find the reason for that as it could effect the course of treatment.

Specifically, I would want a biopsy to look for the presence of neuroendocrine cancer cells that don't express the PSA and also a liquid biopsy to look for genetic mutions such as BRCA2, ATM, TP53, etc. Many of these mutations have targeted treatments available for them.

Good luck and keep us posted. We are all family here so you willl find lots of support and encouragement from this group.

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He appears to be receiving standard palliative care delaying the inevitable.

You wrote advanced Prostate cancer. To me this this means he has metastatic disease. How he treats is up to him.

Me? Immediately after receiving news that I had advanced prostate cance, I was offered palliative treatment with Lupron and told that any Urologist or Radiation Oncologist could administer. I immediately asked my two Radiation Oncologists (one for seeds and other for IMRT) if they were in my shoes, what would they do?

Both replied that they would find the best Medical Oncologist who specified in prostate cancer; not any other, not breast, lung, etc. preferably one in research and very current on the cutting edge of treatment. I asked if they knew one.

The first RO in San Antonio did not; the second in Houston, did. Told me that he sat on a committee with one, but did not know if he could get me in.

Fifteen minutes after I got home an hour later, I received a telephone call that Dr. Robert Amato wanted to see me in the morning and that he had already seen my scans.

After spending about 2 1/2 hours with me, I enrolled in a six month chemo and hormonal therapy trial. That was over 14 years ago.

I was able to stop Lupron in February 2010 and starting T replacement a year later with the help of 4mg of Androgel, my T ranges from 450 to 650 and u remain undetectable I have been most fortunate and because I started a very aggressive trial early on, I am where I am today at 70 years of age.

Keep kicking the bastard

Gourd Dancer

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Oncologist at a center of excellence---ASAP! Not to fear---just to get a team together.

Nalakrats

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We live in Kelowna, British Columbia in Canada. My husband Ron is registered with the Cancer Centre in Kelowna but we have not seen an oncologist. I can ask his urologist to refer us to one on Jan 23, Rons next appt. I have always thought it a good idea to have one too and wondered why he wasnt referred. thank you everyone for your insights....we really appreciate it.

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To: rfurgason

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Medical oncologist who specializes in prostate cancer.

Catch my drift?

Good Luck and Good Health.

j-o-h-n Tuesday 01/09/2018 10:39 PM EST

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thank you.... i think we get the point now....thank you so much for your caring advice to get an MO for Pros CA

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You can succeed with much effort you will survive with our common friend APC. .and it’s possible to find joy in living a health conscience albeit altered lyfestyle. Don’t fret.there is much to be done .fight , fight , fight, .

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thank you ....we will.

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Hey guys,

I discussed my 30 months of ADT with MedOnc and he allowed me to stop the Lupron and daily Casodex with the last shot on 03/31/17. I got a PSA nadir of 0.1(from 840) two months ago and then it has ticked up to 0.5 with testosterone at 86. We didn't wanna go castrate resistant and want the "normal" cancer to grow again. Will reinstitute the ADT when it hits 2 PSA. I have already doubled twice in two months and gotta see what it hits at the end of January

Best to you guys

Randy

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best to you too, Randy and thank you. This sounds similar to our situation except your psa is going up slower.

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Hi Everyone....This is Anne and Ron....just want to give an update on our own comment.

So...Rons Doctors appt with urologist got cancelled and moved to Feb 5 - - next week. Any way just to recap i was wondering what next because after being on Lupron for over a year and then having his non-detectable PSA and T go up within six months off ADT to 1.7 and 10.4 (maybe add a zero to convert to American) respectively I now have another question. my new question is......since the PSA rose to 1.7 off ADT are these PSAs considered CRPC?

(thank you and we will be getting a referreal to an MO and asking for scans (since Ron was detected originally in an advanced stage, mets, with low PSA of 11 (or 110?)

Hope all is well with everyone....lets keep on keeping on

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Sorry..... I meant......The cancer that those PSA's now my possibly represent....are those cancer cells considered CRPC? Thanks, Anne for Ron

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