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GregMac

Hi there,

I am almost about to 62 and had a radical prostectomy with some nerve sparing when I was 46. For the first seven years post surgery my PSA was unbearable. I did not have to have any followup treatments post surgery.

Over the following 8 years my psa had been gradually increasing to a level around November last of .11. At the beginning of this year I had a PSMA scan and CT abdomen followed by an MRI abdomen. Nothing showed from these scans.

I have been having ongoing follow ups with my oncologists since monitoring my PSA. Five weeks ago it reached a level of .19, a considerable increase over the last 12 months. I was required to do a retest of my PSA around 2 weeks later which showed a further rise to .21. I realise this represents a doubling in 12 months.

I have undergone another PSMA pet scan and CT abdomen still not showing any results.

My oncologists wanted me to do a preventative blanket radiation treatment of my prostate bed.

I was concerned about outcomes from this treatment given that I feel well and have no other symptoms and also have a trip coming up in February next year to see my daughter in the USA.

As a result he is suggesting hormone treatment initially to control PSA level with radiation after my trip next year.

I am really anxious about entering into a treatment that has potential to cause other health issues as I am generally active and healthy atm.

I am due for a follow up PSA test mid next month with appointment with oncologists to make a decision.

Interested to hear from others that may have had a similar journey or advice anyone may have.

Should I have just gone straight to preventive radiation of the prostate bed in the hope that's where it's is?

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kujhawk1978

Hope is not a method. I did SRT when I had BCR 18 months after a very successful surgery. It was an epic failure. 90 days after I completed PSA was .7. A moth later 1.0, by the time I went to Mayo four months later is was 4.8. The C11 Choline scan showed four pelvic lymph nodes involved but no organs or bones. I had talked with my medical team about adding six months of ADT and even including the PLNs. They discouraged it saying there was no long term data. It was the last time I let them talk me out of combined treatments. I started 18 months of ADT, six cycles of taxotere and 25 more radiation treatments now that my radiologist has something to aim at.

 

i finished my treatment in May 18, by October T was back at 135, in Feb it was 482. PSA remains undetectable, August labs were .05.

 

here’s a link to a study about ADT with SRT - https://www.practiceupdate.com/c/91355/2/3/?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_uro&elsca4=urology&elsca5=newsletter&rid=MjI5MTYzNjYwMzQ5S0&lid=10332481

 

this seems to be more and more mainstream treatment in clinical practice.

 

not saying that six months of ADT is a breeze, we all react in different degrees if severity to the side affects  but if it increases your time to PFS and OS, it may be something to consider.

 

the only time my treatment prevented me from doing what I normally do was during radiation treatments when I had to be there every day M-F, meant I couldn’t travel. Other than I traveled for work, took vacations, exercised...
 

the side affects if ADT, hot flashes and muscle and joint stiffness kind of sucked but you learn to just deal with them.

 

Kevin

 

 

 

 

 

 

 

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Charles (Chuck) Maack

I can understand you wouldn't want to go directly to radiation to the prostate bed until you know where your cancer must have returned since it may be externa of the bed and metastasized elsewhere in your body. You mention imaging with the PSMA testing; was that the PSMA radiotracer 18F-DCFPyL?  Of the top imaging methods, this test is considered the most sensitive.  The others, in order, are 

68Ga-PSMA-11 PET/CT, 18F-FACBC (radio tracer FLUCICLOVINE) (aka Axumin) PET/CT, then  11C-Choline or (b)11C-Sodium Acetate.  In the U.S. the first two are not covered by our Medicare, so out-of-pocket cost.  The third and fourth are covered.  Until imaging identifies PCa cell activity location, I can understand waiting, but I would recommend Androgen Deprivation medications prescribed/administered to stop that PSA elevation or drastically slow it down until after your visit here in the U.S.  In my opinion, that would mean a Lupron/Lucrin injection for one month to make sure your testosterone shows significant drop, then before heading to the U.S., if your testosterone is dropping, a six-month effective dose to carry you through your visit until your back for more imaging that finds that location.  No sense radiating the prostate bed if the cancer is active elsewhere, which could be in other organs, bones, of soft tissue somewhere wherein targeted radiation may work.  

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Charles (Chuck) Maack

I meant to add that the 50mg tablet Casodex or its generic bicalutamide taken once daily may also be prescribed.  Your sex life, if active, will be curtailed during this period, but the importance is curtailing this rapidly elevating PSA ASAP.

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stevecavill

0.2 is the very lowest that a gallium PSMA scan will show mets.  I’m in a similar boat, as my psa has risen from 0.03 to 0.15 in the last 12 months.  My initial treatment was EBRT to prostate and ADT, followed up by SBRT to bone Mets and  docetaxel. I have a doubling time now  of about 7 months.  A doubling time of 12 months is relatively  slow.

 

My med onc is happy to do a PSMA scan at 0.2, my rad onc would prefer to wait to 0.5 to see a clearer picture.  I will have a scan at 0.2 and if it shows nothing wait until 0.5.  I prefer not to start treatment until I know where it is.  If it’s a bone met then I can radiate it, if it’s more widespread I can use a systemic treatment.  If I start treatment now, then it will hinder future scans finding anything, even though I know it’s there.  

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Admin

PSMA detection is better at higher PSA.

Detection rates of [68Ga]THP-PSMA PET/CT increased with increasing PSA level in this particular PSMA scan:

  • 94.1% for a PSA value of ≥10 ng/mL,
  • 77.3% for a PSA value of 2 to <10 ng/mL,
  • 54.5% for a PSA value of 1 to <2 ng/mL,
  • 14.3% for a PSA value of 0.5 to <1 ng/mL,
  • 20.0% for a PSA value of >0.2 to <0.5, and
  • 22.2% for a PSA value of 0.01 to 0.2 ng/mL. 

(https://www.ncbi.nlm.nih.gov/pubmed/29308527)

I had recurrence detected in my prostate when my PSA was 0.029

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GregMac
2 hours ago, Admin said:

PSMA detection is better at higher PSA.

Detection rates of [68Ga]THP-PSMA PET/CT increased with increasing PSA level in this particular PSMA scan:

  • 94.1% for a PSA value of ≥10 ng/mL,
  • 77.3% for a PSA value of 2 to <10 ng/mL,
  • 54.5% for a PSA value of 1 to <2 ng/mL,
  • 14.3% for a PSA value of 0.5 to <1 ng/mL,
  • 20.0% for a PSA value of >0.2 to <0.5, and
  • 22.2% for a PSA value of 0.01 to 0.2 ng/mL. 

(https://www.ncbi.nlm.nih.gov/pubmed/29308527)

I had recurrence detected in my prostate when my PSA was 0.029

Thanks for all the feedback so far it's much appreciated.

 

5 hours ago, stevecavill said:

0.2 is the very lowest that a gallium PSMA scan will show mets.  I’m in a similar boat, as my psa has risen from 0.03 to 0.15 in the last 12 months.  My initial treatment was EBRT to prostate and ADT, followed up by SBRT to bone Mets and  docetaxel. I have a doubling time now  of about 7 months.  A doubling time of 12 months is relatively  slow.

 

My med onc is happy to do a PSMA scan at 0.2, my rad onc would prefer to wait to 0.5 to see a clearer picture.  I will have a scan at 0.2 and if it shows nothing wait until 0.5.  I prefer not to start treatment until I know where it is.  If it’s a bone met then I can radiate it, if it’s more widespread I can use a systemic treatment.  If I start treatment now, then it will hinder future scans finding anything, even though I know it’s there.  

 

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Patrick Turner

Hi gregmac,

If your Psa is only 0.19, then why be so worried? At age 62, my Psa went to 5 in 2009, I got biopsy at Psa 6, Gleason 9 was found, and open RP attempted in 2010, and PG was inoperable with Psa at 8. No mets were found, but there was no PsMa scan at that time.

So I was assigned to begin begin ADT for 2 years and got 70Grey EBRT after first 6mths ADT. This didn't work because once I paused ADT after 2 years to see if it had worked Psa whooshed up from 0.08 to 8 in 6 months as T came back to a normal level. I recommenced ADT and am still on it, and it lasted to 2016 with help from Cosadex then Zytiga added.  

By them all my sexuality was exterminated but didn't matter at all because I was alive not dead, and I didn't have a wife to please.

I kept both body and mind fit by cycling 220km a week. Psa has been up and down like a yo-yo and highest its been was after 5 chemo shots in October 2018 when it went to 50, after beginning chemo at 12. Chemo failed, I knew it would, my oncologist said it would, and it did, so he referred me for Lu177.  

I got a few PsMa scans after 2016 when Psa was about 5, and saw the growth of many lymph node mets and bone mets and there wasn't anything I could have done to avoid that before 2016 when getting Lu177 wasn't a choice I could make easily.

But in November 2018 I began Lu177 given at Theranostics Australia clinic in Sydney, and Psa was 25. I began Xtandi after 3rd Lu177 shot, and now, after 4 shots of Lu177 and 5 months after last PsMa scan that told me I had nothing more to worry about, Psa has gone down more and was 0.32 a week ago, and so things look good for me, I might get repeats of Lu177 if it comes back, but seems like I should live another 4 years to 76.

I had a pause off the bike for 3 months last winter but am back to 220km a week at 72yo.

I've just survived 10 years since diagnosis. But Pca would have started in 2004, but nothing was done until Psa went to 5, so I had low Psa for larger amount of Pca. Not a good start for treatment to begin.

But a friend of mine died within 3 years of diagnosis that seemed so treatable at first, but his Pca mutated so fast it overwhelmed whatever his best doctors in Oz could do for him.

I have another friend who had unknown cancer in his neck about 12 years ago, at about 65, and then minor op, RT, chemo, and after surviving that he gets Pca, has RP, undetectable Psa for 3 years, but it slowly rises, so he had same70Grey EBRT that I had, Psa went undetectable but at 79 its on the rise again, and he's scared. He's never had ADT. But his sexuality was also exterminated too early, when he had a lady pal still able to do it.

ADT side effects may not affect him much but might hold down Pca for years. 

But his Pca is nowhere near being able to kill him soon, so worrying a lot about it is pointless. I have had to learn to live with Pca as a chronic condition, and despite me feeling Pca could have me in palliative care within a year at any time over last 9 years after 2009, I really didn't worry too much about how long I had left because I kept asking doctors what could they do, where could I get some good treatment and I read all I could about Pca online, and talked to many about latest treatments such as Lu177. Luckily, doctors like seeing me turn up for a talk dressed in lycra, and doing all I could myself to stay healthy, and found solutions that were available outside the public hospital system. Lu177 has turned out to be the best treatment so far, and had it been available in 2009, I may have done well, but then it could have come back, and there's only so many repeats of Lu177 that a man can have.

The trouble with Pca is that you can have a pile of treatments when Psa is low, and the darn thing still grows back like an unwanted weed that you can't get rid of in your garden of life. 

IMHO, you must keep fighting, but there's a point where whatever treatment you might like or have faith in may give you a pile of side effects that you have to suffer sooner rather than later, and still not get a cure.

Not many men get into remission with Pca. We would like it to happen, but it just does not happen and best we might hope for is that we have it under control when something else takes us out. 

Patrick Turner.

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DarrylB

Hi Greg

My picture is the same as yours, I am 63yrs old and had a disastrous robotic prostatectomy in 2010 by a person I would call incompetent. My gleason 6 cancer must have been spread by the biopsy or mechanical means with the robotic surgery.

None the less my PSA began to rise about 11 months post surgery and has continually since with a few tests showing pause and in some cases temporary reduction.  My results at the moment is my PSA is .18 and last test in May 19 was .24.

It seems Australia is the only country where .1 means biochemical recurrence and the rest of the world is .2.

I am faced with the same decision making issues you have and I have decided to hang in there and watch and wait. I am waiting for immunotherapy to come of age and at the moment it is probably 3 yrs or so away. There is trials being performed now.  I intend to wait till they have killed a few hundred or so before I roll up, that will give the specialist time to perfect the cure. I am serious about my path for cure as NONE of the treatments currently available offer a cure.

Another man local to me has had radiation to the pelvis with exactly the same story, that is the cancer might be local in the pelvis so "let's just blast it anyway"... No evidence and No guarantee it will do anything but fill the radiologists pocket with money!  It's a worry! He is just about finished his radiation course so I will catch up and see how he went.

Dr Bert Vorstman (USA) suggests a negative full body scan may mean the microscopic cells might already be in the bone marrow... if so radiation to the pelvis will not only cause serous damage to the local organs and blood vessels but subject you to cancer in the future.

I am glad you are cautious because every step from here is downhill with any of the treatment options offered. You'll notice I said treatment not CURE.

Oh, I forgot to mention Australia seems to be so backwards in PCa treatments, you'll notice when you research enough that this is so.

This website publishes many interesting article about trials and outcomes....

https://prostatecancernewstoday.com/2019/10/16/long-term-hormone-therapy-does-more-harm-than-good-in-prostate-cancer-patients-with-low-psa-levels-after-surgery-analysis-shows/?utm_source=Prostate+Cancer&utm_campaign=550e1b01e2-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_a6d9c27ca8-550e1b01e2-71328057

all the best and don't panic, take your time and research every angle of any options offered.

 

Darryl

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GregMac

Thank you to everyone for your help and information. I have been able to obtain an appointment at the cancer clinic at the St George Hospital in Sydney next week. Will see what opinions are offered and take some time before my appointment mid December to make up my mind. best wishes to everyone journey.

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DarrylB

hi Greg

I am keen to know what the Dr at the cancer clinc suggests ... 

Can you please keep us updated?

thanks

Darryl

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GregMac
11 hours ago, DarrylB said:

hi Greg

I am keen to know what the Dr at the cancer clinc suggests ... 

Can you please keep us updated?

thanks

Darryl

Hi Darryl,

Happy to follow up and let you know.

Will probably post on Wednesday night when I get home.

Cheers

Greg

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GregMac
On 11/25/2019 at 8:43 AM, GregMac said:

Hi Darryl,

Happy to follow up and let you know.

Will probably post on Wednesday night when I get home.

Cheers

Greg

Hi Darryl,

 

The consultant in Sydney has backed up what i was told locally in Canberra.

Salvage radiation of the prostate bed is recommended.

The only difference being is that she suggested that she would do the lymph nodes as well in the pelvic area.

I have an appointment this coming Friday with my local oncologists to discuss the plan moving forward.

 

Greg

On 11/17/2019 at 7:37 AM, DarrylB said:

Hi Greg

My picture is the same as yours, I am 63yrs old and had a disastrous robotic prostatectomy in 2010 by a person I would call incompetent. My gleason 6 cancer must have been spread by the biopsy or mechanical means with the robotic surgery.

None the less my PSA began to rise about 11 months post surgery and has continually since with a few tests showing pause and in some cases temporary reduction.  My results at the moment is my PSA is .18 and last test in May 19 was .24.

It seems Australia is the only country where .1 means biochemical recurrence and the rest of the world is .2.

I am faced with the same decision making issues you have and I have decided to hang in there and watch and wait. I am waiting for immunotherapy to come of age and at the moment it is probably 3 yrs or so away. There is trials being performed now.  I intend to wait till they have killed a few hundred or so before I roll up, that will give the specialist time to perfect the cure. I am serious about my path for cure as NONE of the treatments currently available offer a cure.

Another man local to me has had radiation to the pelvis with exactly the same story, that is the cancer might be local in the pelvis so "let's just blast it anyway"... No evidence and No guarantee it will do anything but fill the radiologists pocket with money!  It's a worry! He is just about finished his radiation course so I will catch up and see how he went.

Dr Bert Vorstman (USA) suggests a negative full body scan may mean the microscopic cells might already be in the bone marrow... if so radiation to the pelvis will not only cause serous damage to the local organs and blood vessels but subject you to cancer in the future.

I am glad you are cautious because every step from here is downhill with any of the treatment options offered. You'll notice I said treatment not CURE.

Oh, I forgot to mention Australia seems to be so backwards in PCa treatments, you'll notice when you research enough that this is so.

This website publishes many interesting article about trials and outcomes....

https://prostatecancernewstoday.com/2019/10/16/long-term-hormone-therapy-does-more-harm-than-good-in-prostate-cancer-patients-with-low-psa-levels-after-surgery-analysis-shows/?utm_source=Prostate+Cancer&utm_campaign=550e1b01e2-RSS_MONDAY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_a6d9c27ca8-550e1b01e2-71328057

all the best and don't panic, take your time and research every angle of any options offered.

 

Darryl

 

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GregMac

Appointment last Friday with oncologist locally.

Will start salvage radiation treatment late February 2020 after my trip to the states.

We had a discussion re possible lymph nodes as well in the pelvic area but have decided to just do the prostate bed at this time.

I will have another PSA test mid Jan 2020 and if there has been a further a major lift in level may do a single hormone shot.

Heres hoping that post treatment the levels decrease other wise the assumption that its in the prostate  bed is wrong and we are back to square one as well as dealing with the outcomes of radiation.

Cheers

GregMac

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