It will be the highest number of deaths in 2 decades... Saddening.... they need to push PSA test and DRE for men... There needs to be a push to move to targeted screening as it may reduce deaths by 1 in 6...see below:
That would mean a decrease of 5,500 deaths annually based on estimates for 2020...
It is too late for us, but many of us have family that this could benefit...The new drugs are coming and they will help, but this is a simple fix to reduce deaths and suffering by 16%...
Any thoughts or feedback..??
Don Pescado
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NPfisherman
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We can...several new drugs will be here within 5 years and it will change OS for us Stage4 guys...also, things like SBRT, nanoparticles, vaccines / CAR-T will help...but the idea that targeted screening will reduce deaths by over 5,000 men annually...Why does not the Government get behind this concept?? It is money from the insurance companies...all IMHO..
Don Pescado
In my case, it would have been great to be screened...I'm certain that I wouldn't be in this situation today. I got a physical every year, and my doc never did a PSA or finger up the butt. My guess is that he just didn't want to do it, and never told me to get it done.
Mother of Pearl... I do not know what to say..... Did he ever acknowledge any of this in regards to your having advanced PCa?? You got stuck on this hell ship because of his failure to do a thorough exam !!!!!
Similar situation. Had PSA tested in 2012 ... normal ... and was told it was no longer the protocol to test PSA because of false positives, so for the next 6 years I didn’t have one. Guess what ... fast forward to 2018 and a shock Dx of aPC with PSA of 168.
I tell every man I know to get his PSA checked regularly. False positives be damned, it’s the relative changes that matter. Still a friend had to ‘fight’ to get his tested. Just as well, he had a PSA of over 10 and has now been further tested and is being treated appropriately.
Exactly right....the insurance companies have had the bean counters figure it out and even with legal fees they are ahead...now the fact that people have a terminal disease...they could not care less...
Here in Australia the “ norm” is advised PSA every two years.
My husband did that ... somewhere in one screening , after 17 months he went from fine to APC.The urologist we saw initially thinks it should be annually .
It’s difficult to get humans to be vigilant when they feel healthy ....
but I agree with All you’ve stated.
We have had great results here with breast screening . I get a reminder every two years for breast screening .
Thank you and all here, who provide me with information .... and so much more .🙏🏽
Blessings upon you and all the wives that support us, go to the visits, live with the anxiety of PSA testing , do research, and help in every possible way.... What would we do without our wives?? I could not live without Margaret, my beloved wife...
Thanks for your reply...I am amazed at the courage and fight that this disease brings out in all of us....
So Sorry to hear that news....went out to look at your profile to see if I could make any suggestions , but it doesn't show where you are or what you have done... Did you have any DNA testing--germline or somatic??
Hoping things stay quiet and you find a successful treatment path in this new year...
I have to believe that with so many pages of options that something could be found...I do know that there is a company in Oz called Starpharma that Alan Levrenson likes that is doing dendrimer docetaxel, dendrimer cabazitaxel, etc...-- I believe they have trials ongoing:
Never give up and never give in... If you would like help looking for a trial, then I will gladly review that list and make some suggestions based on information that you provide based on previous treatments and current status....
Feel free to message me and I'll see what I can do to help...
I'm so sorry to read the rough road you've had along the way. It's been very unfortunate that the advice you had was not appropriate but I think here in Oz it's probably not much different than in the States as I've read similar stories from those that post and it depends how well the GP is across the various conditions.
My husband, although not known for being careful with his health, took the advice to have a PSA and digital check religiously every year and as soon as there was a slight increment was hurried off to a urologist. On an initial, very careful digital check, the specialist too could find nothing of concern but followed the usual SOC by ordering a PI-RADS and doing a biopsy and the rest as they say 'is history'. I tell you this just as an example of even if every care if taken things can still go pear shape.
Not sure where you're located but we had genetic testing done at SAN and were advised to have the broader test done. I see my mate NPfisherman, has provided you with the current trials being run here and you'll find that he has a wealth of practical and well informed advice.
As we don't see our PC specialist until December I've written to Professor Michael Hoffman in Melbourne to check if there might be a suitable trial and although he's on leave until later this month I've had a very professional response from his assistant and am confident she'll check with him on his return. Maybe this direct approach might be a way if you want to check out any specific trial. My rationale was that someone like Michael would be across trials coming up the details of which are not yet released. In Sydney another person who would be a good contact is Professor Joshua. He couldn't help us but I have another contact on this site who lives in a more remote community and Prof J was very generous with his time via Skype.
Feel free to message me personally if you want to check out anything I've mentioned or if you just need another 'shoulder to cry on'. I know it's not easy.
Marnie is my mate and she is a fabulous person ....She has been doing her research...maybe you should get together and have a beer, or wait till cujoe and I get to Oz... (he's coming--he just doesn't know yet).... LOL... better do it now....you'd be awfully thirsty waiting till August/September...
Now what can we entice J.B. with to come to Oz I wonder....? I do tell him about providence....weird things happen in life and you can't work out how they happened......on reflection I think maybe the superb food and wine might do it......don't forget it better not be when I'm in NY..... I haven't told you how I'm known for getting lost in my own suburb and I'm going to need you and Lady Margaret to be on the end of the phone to get me back to wherever I have to go......
.....and yes Bebby1...happy to have a coffee anytime... M
We'll do a twofer...see you in NY and Oz... both in that period....JB will come if I have to kidnap him to come with me and the Lady Margaret...No worries, mate...( huge grin)... Have a great weekend....snow for us I believe....cold....26 degrees and the wind is blowing... Snuggle in front of the tele with the Lady Margaret tonght...
Ever the advocate, our Marnie... Our mate is a fabulous person !!! ... Ron is a lucky guy... You tell him we said so... if not, we'll tell him in August/ September... over a beer, of course...
Moved out here to where the crows fly backwards( literally from the dust) to keep my dear mum on the farm That her and dad battled through droughts and floods to keep
All treatment is two hours away in Orange Nsw
We like and continue to like our oncologist
Gives us time andgood explanations ( albeit we misunderstood the trial criteria for eligibility )
Husband was Gleason 10 on biopsy
In 95% of tissue tested
Extensive boney and lymph node involvement
We are told that this oncologist is “ all over it” with current treatments and trials etc
But I do feel he genuinely thinks we should now let my husband live his best life and wait till the” best “part shows cracks
On the way home we discussed second opinions etc
Husband became resistant to cosudex then enzalutamide very quickly
Only managed two of the six Docetaxal ( I asked about Nuelasta as suggested by Tall Allen ... answer was that studies show it wouldn’t help going on his previous attempts )
The rapidity in which the resistance occurred he said displays the aggressiveness of the tumour
My head has been everywhere this morning
Husband happy not to to be taking drugs from today
Due to side effects mainly
Should we put him through more crap more side effects ?
Of course this is not my journey
But my better half thinksBecause I am a nurse ... I’ll know what to do .... God how I wish
I can see why Dr feels quality is more important and As a nurse ...
I get that also
It’s just the waiting
The thought that this breast is free to roll
I’m hopeless with tech
But if I can contact you by phone how do I see that privately???
Just to finish
How beautiful are these men (and women ) here!!!
I’ve come to know the humour of some
The desperation masked
The sadness
the serious
The total focus
And still they continue to share whatever they have
Yes you can contact me by phone. I’ll message you my mobile number later today and if you text me when it’s a good time to call I’ll call you as it will be free call for me 😊
Thank you Daisy. It was lovely to talk to you and you be sure to ask if I can help in any way. I'm thinking of you and will keep in touch via text. Marnie.
Yes Bebby, the men (and the women who support them) here on the site are fabulous. They provide a life line to many of us apart from the sensible and balanced information they also provide and stories they share. Unfortunate about the trial.
I've messaged you privately with my mobile number. If you text me your number I'll phone you on that number or if you prefer just ring and I'll take a note of your number and phone you back.
Geographically, I see now what you are up against. I know the area well and know the great expanses of country you need to cover to access services ....well at least specialised services. Can I say you are fortunate that you like and have faith in your oncologist.
Many struggle with the balance you mention between extension of OS and QOL. I personally think my husband should be on a more aggressive treatment regime but as you say it's a journey that you can only do so much to influence. Our PC specialist has always said that my husband's treatment should be guided by QOL if that helps you come to terms with the advice you've received.
Take care and keep in touch if it will help to talk.
I agree....low T should also be monitored...it just makes sense... too many stories of people not getting a thorough exam... not being monitored regularly...I fell into the antibiotics first and monitor....I wasted months on this... this disease challenges me religiously... the cursing part...not the faith part...
If you look at Marnie's reply below--it would seem that is indeed part of the issue.... there are many factors involved----the protocol wit the antibiotics, watchful waiting, and the lack of more frequent testing in higher risk individuals is all playing into the problem... ALL IMHO...
Hi Fish. Always respect your opinion and the vast knowledge you apply to discerning where things are at in the PC world.
I wonder if you'd like to comment on the recent email attachment I received from PCF yesterday. How do these sit with your figures? Would value your interpretation.
I appreciate your reply and this information from PCF--an organization that I believe in and support financially... I do believe that the increasing number of baby boomers will increase the total numbers... there are many factors including the science developments and drug discoveries that will help hold the death rate down... I do believe that the drugs currently under development will play a huge part in getting us to chronic disease state and change the 5 year survival rate closer to 50% or greater for stage 4... there will be a 10 year survival rate closer to the current 5 year rate-- ALL IMHO....
I appreciate and value your insights and I, too, like to support this organisation. In 2016 when I knew nothing about this condition it was the one publication that has helped me come to terms with what was in store and I'm always impressed by subsequent editions and the way the information is updated and kept current.
I'm just disappointed I'm not permitted to put up the link to the 2019 PCF Guidelines on the main HU hub though I do notice one member has made reference to it a few times since the post by a member was taken down around Christmas time.
Fortunately we now have FPC that enables you and other well informed members to keep us updated on the science. Keep well.
Unfortunately, there seems to be a trend to not mention other NFP organizations for PCa on the other forum.. I suspect it has to do with donations but that is all IMHO... The PCF guide is a great piece of work...Thanks for your reply...
Our little town has started a “ testicle “ festival .... not really pertinent but in the two years it’s been held has raised over $25000 ( town has population of approx 500)
Surrounding districts came on board
Local footballers did the full monty
Bossiness donated to the auction
We had oncologist speak
Fantastic result
Very humbling as my husbands colleagues initiated
All proceeds to go to research
I wish I had answers for all of you
Damn cancer
“ Give prostate cancer the finger” is the main slogan 👍
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