How is type of ADT determined. MD preference? PSA level etc.....

[Tommyj2]

Never yet on any ADT but with rising PSA and STILL waiting on results of recent bone scan I am wondering how it is determined which ADT to try first.... If I am without detectable bone mets would LUPRON be first order Tx ( again... I realize that there are any number of other scans to do to determine origin of rising psa.... but... suppose no distant mets???

[Tall_Allen]

Have you had any primary treatment (RP or radiation)? What is your PSA and your PSADT?

[Tommyj2 in reply to Tall_Allen]

One course in 2012 of External Beam radiation.. no hormones. Without going into all the psychological reasons for my decision I refused any further treatment and proceeded to ignore rises in psa for the past 7 years. PSADT according to online calculators is 1.73 yr.. Velocity .03ng/ml/mo. Current PSA=5.9. Negative Bone Scan( results received 30 minutes ago)..... I am 67 this July and wondering how long I might actually last if I continue to leave this untreated... Discussions will be had in the future with Urologist and quite possibly MO.... Have been following this forum for , perhaps, a couple of weeks and recognize there is much testing ahead if I REALLY want to get an accurate picture of Disease advancement. Have pets that I need to remain alive for for at least another 3 years ( odds are pretty good : )

Not ruling out ADT but not at ALL enthralled with the prospect as my hobby is trail building and this requires a considerable amount of physical stamina .... Finances are a major consideration as well

[Tall_Allen in reply to Tommyj2]

So you have no detectable mets, low PSA, and long PSADT. Have you explored salvage radiation? Whatever path you decide, an Axumin scan would be a good idea first. Then you can decide if you are a good candidate for salvage radiation, whether ADT is a good move, or whether you can coast for a while.

[Tommyj2 in reply to Tall_Allen]

Thank you allen.... I assume that no bone mets does not assure an absence of soft tissue infiltration so my presumption is that I will go on to PET/CT unless otherwise advised ( I have reduced kidney function and any time I can avoid contrast all the better)..... I have been so much luckier than many in this forum so I will keep my questions to a minimum...

[Tall_Allen in reply to Tommyj2]

Yes, no bone mets on a bone scan tells you nothing about lymph nodes, organs, or even smaller bone mets that a PET scan can tell you. You can discuss having the CT without contrast. A handful of hospitals have the new PET/MRI, which doesn't require a CT.

[sunhine]

hi tommy I have advance prostate cancer gleason 9 psa was 9.6

I started on firmagon it work so far no big side effect hot flashes you can email me if you wish just started this journey myself. on firmagon for 3 months and still seeing other doctors to realy decide what im doing next . you can email me if you wish .best of luck . we all need it henry

[Tommyj2 in reply to sunhine]

Hi Henry... Have you had any other treatment for your Pca yet??

Not familiar with Firmagon... is it administered in MD's office?..what is your objective in getting this drug and why did MD select it ( if you know)

[j-o-h-n in reply to Tommyj2]

Well Tommyj2 we know you'll be 67 in July (and live in New York) would you be kind enough to tell us where you're being treated and Doctor(s) name(s)? All voluntary but your info helps us help you and it helps us too. Please reply in a future post and not this one (todays) and NOT to me. Thank You.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/02/2019 6:12 PM DST

[Tommyj2 in reply to j-o-h-n]

Yes you are right... should have included more information.

One course in 2012 of External Beam radiation( Montefiore Hospital, Bronx NY) PSA of 20 at time of treatment... Two Biopsies a month apart... first Gleason 6 the second Gleason 8 ( don't know who was right or if I'm recalling incorrectly )...... no hormones. Without going into all the psychological reasons for my decision I refused any further treatment and proceeded to ignore rises in psa for the past 7 years. PSADT according to online calculators is 1.73 yr.. Velocity .03ng/ml/mo. Current PSA=5.9. Negative Bone Scan results received 2 days ago).....

Not ruling out ADT but not at ALL enthralled with the prospect as my hobby is trail building and this requires a considerable amount of physical stamina .... Finances are a major consideration as well

[j-o-h-n in reply to Tommyj2]

Thank you for the information. I was born and raised in the Bronx... Just post here if you need more info or camaraderie. Wish you well on your decision not to ADT (right now). Keep on building those "trails" while most of us are on "trials".

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/03/2019 8:33 PM EDT

[Tommyj2 in reply to j-o-h-n]

J-o-h-n....

I haven't decided NOT to do ADT I just wan't to check out any an ALL alternatives before I decide..... Need opinions re: how long I might have " untreated" as well, as I am not enthralled with life and, unlike many, have no desire to be around into my 80's ( or so I say now : )

I am painfully aware that I sound like a guy who is complaining that he didn't get enough chocolate chips in his chocolate chip ice cream in comparison to the challenges so many here are facing. ( I'm thinking of adding the above as a disclaimer in any post I make)........ in fact I guess you could say I'm on the lucky side of unlucky.... I wish you the best...

[Tommyj2 in reply to j-o-h-n]

Meant to ask.... are you still local to the area or far away at this point....?

If local would appreciate any recommendations you might have for Medical or urological oncologist..... or reference to prior posts that address this??

[j-o-h-n in reply to Tommyj2]

Well if you decide to go the ADT route there's lots of expertise here as you know.

When you hit your 80's you gonna turn around and say "where the fk did the time go?.

I'm in Queens now... you know that place where people of the Bronx never ventured to.

To answer your question: I would definitely recommend Memorial Sloan Kettering cancer center (68 street - new First ave). My oncologist (who is great) is Michael Morris. Here he is from a "2017" MSK video:

youtube.com/watch?v=bEsQQGf...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/05/2019 2:22 PM EDT

[Tommyj2 in reply to sunhine]

Hi Henry...

Forgot to ask.... what side effects are you having beyond Hot Flashes... Weight Gain?, Loss of Muscle tone?? Mood changes...

Interested a LOT because I have to decide if I am going to go that route..... thanks

[Hidden]

I don’t know about the new scans available. From 2003 through 2010 and once again in 2016, my MO relied on nuclear bone scans and soft tissue abdominal CT scans to follow my metastatic disease. I had 23 sets done mostly in conjunction with a chemotherapy with ADT trial.

Good luck and keep kicking the bastard.

Gourd Dancer

[MarkBC]

When I was diagnosed, my urologist started me on monthly Degarelix (firmagon). He said he likes to start with it because it hits hard and brings the PSA down quickly. It did. From 103 to under 2 in three months (with chemo). He then switched to Zoladex because the injection is easier and I only need to have it every three months. PSA now holding steady around 0.25.

I think the doctors here make the decision which ADT to use. In the USA, insurance may have a say in what they have available.

Good luck with your treatments.

[Tommyj2 in reply to MarkBC]

Thank you Mark..... I am presuming that this treatment was for recurrent Pca no?? I am VERY reticent to go on hormones if there is any way that I can do without them ( salvage radiation, HIFU, Cryo etc) seems I have to make a choice as to WHICH type of lousy side effects I " wish " to deal with... I may be lucky in that my cancer appears to be slow growing but I have seen others here with low PSA that have mets to bone etc. How have the hormones affected you ( eg......muscle tone, weight gain.... the only thing that keeps me going these days is my trail building and to not be able to do it would really reduce the quality of my life..... ag ain...thank you for your reply.

[MarkBC]

My cancer was diagnosed at stage 4 with mets to bones and lymph nodes. My ADT side effects are fairly typical. Fatigue, lack of libido, weight gain (15 lbs), hot flashes (about 10 times per day). I am still able to ride my bike, chop firewood, and do the physical labour needed to maintain my property. I built a new shed last month. Right now I am tearing down a deck to replace it. With physical work, things just go slower and take longer to do. I keep a chair nearby so I can sit when I need to. I usually nap once or twice a day too. Of course I would rather not be on the ADT but it is the most effective treatment for metastatic prostate cancer. Cancer is a life altering event. Lots of people go through life altering events. We just need to adapt and carry on. If your doctor is recommending hormone therapy, I would be reluctant to disregard his/her advice.

[Tommyj2 in reply to MarkBC]

Thank you Mark.... I have some thinking and a LOT of checking to do to find out if there is any alternative to Hormones..... I refused them in the beginning and during the past 7 yrs that my PSA has been rising. The cancer has still not reached my bones ( at least to the degree detectable on stardard whole body nuclear bone scan and seems to be moving rather slowly... If there is ANY alternative to hormones I will take it as the entirety of my Social World is based on physical activity and poor kidney function has already put a crimp in this due to my inability now to take NSAIDS for Arthritic pain.... I am luckier , so far, than many in this forum. I caught my cancer early and it wasn't as aggressive as many here have. I am single with a dwindling supply of friends and family ... I REALLY need my other activities to feel as though I have any quality of life...rather than just " life"..... Don't mean to sound complaining as my situation is more fortunate than yours... just mentioning my reasoning for my reticence ..... I wish you all the best and applaud your attitude..