More Prostate Cancer Issues

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More Prostate Cancer Issues

Postby Brit-Car-Nut » Wed 04.04.2018, 17:57

Unfortunately, it seems I have joined the (not so) small Prostate Problems club. Less than frequent PSAs (all low with no warnings) until a DRE (look it up) suddenly finds a lump. Biopsy has 6 of 12 samples at Gleason 8, 1 at Gleason 7, so just read the riot act and lots of things to get done. No insurance is a bitch (no way I can afford $1,560.00 a month with $20,000 deductible). My Leukemia team has arranged for the prostate group to do the required CAT scans and PET scan and then a conference to see if I fit in any study that they are hosting.

If Dave felt back and pelvis pain anywhere near where I was last week, I am truely sorry for his ongoing fight. I don't think anyone really can appreciate what is happening until they get to share the ride.

I hope Dave continues beating the system and I now join Dave with his PSA push but suggest that a PSA- FREE (it is not much more but provides better data) should be done as frequently as you can arrange but no more than a year between tests. Get a DRE EVERY YEAR or more often as well.

My doctor thought he was helping me save some dosh by not even suggesting it. I had to push him the last two times I had it done and regret not making it mandatory.

WAKE UP EVERYONE! Nobody is immune and everyone is suspect.

I thought I was all done in when I was hit with the leukemia diagnosis right after getting my M100, but that appears to have been a minor blip compared to the prognosis I got yesterday from my new doctor.
Last edited by Brit-Car-Nut on Sun 03.06.2018, 14:58, edited 3 times in total.
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Re: More Prostate Issues

Postby Rusty Wishbone » Wed 04.04.2018, 21:56

I'm sorry to hear your news BCN. I wish you all the best with the treatment. You are in our thoughts.
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Re: More Prostate Issues

Postby Steve A » Wed 04.04.2018, 22:09

Sorry to hear your news, it should spur us all to get checked
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Re: More Prostate Issues

Postby Jamie N » Thu 05.04.2018, 09:03

Sincerest best wishes for the future BCN, Keep your chin up and stay as busy as you possibly can.

And for others reading this... take on board what is being said, get checked regularly, putting it off
until next year is the worst thing anyone can do, that is one thing above all others that will
result in the poorest prognosis.

Cancer does not discriminate... it will come after every single one of us given the chance.
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Re: More Prostate Issues

Postby Giniw » Thu 05.04.2018, 12:50

Sorry to read this news, I wish you all the best Brit-Car-Nut! :-)
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Re: More Prostate Issues

Postby Fredjohn » Thu 05.04.2018, 13:03

Sorry to hear this John, I wish you all the best.
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Re: More Prostate Issues

Postby Brit-Car-Nut » Thu 05.04.2018, 13:33

DaveT wrote:Sorry to hear this news BCN

To BCN
The best place in US for clinical trials is the Sloane Kettering Cancer Centre in New York. If you can get into there youll have a fighting chance

Dave:

I have been a (well pampered) patient at the National Institutes of Health (NIH) for almost 8 years with my leukemia. (May 7, 2010)

I was "invited" to visit their Prostate group for testing and consult on April 17 and 18. I will fly up on the 16th and home late on the 18th.

I will know a lot more after they are done with their tests.

My current oncologist seems to have $$$$ in his eyes when he talks to me. I don't have insurance, so he was quoting costs between $150,000 and $300,000 which I am sure is their wishful costs before insurance and other healthcare negotiations knock them down to reality.

The symptoms happened suddenly, and PSAs, 2 weeks apart, have completely different results which is why I added the PSA-Free.

The sudden appearance of severe lower spine and pelvis pain is the terrifying symptom followed by the suggestion is it is probably now too late ...

When you have to pay for everything yourself, you can run up a nifty bill really quickly. The NIH invite was unexpected, but a tremendous relief for us.
Last edited by Brit-Car-Nut on Sun 03.06.2018, 15:00, edited 1 time in total.
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Re: More Prostate Issues

Postby Brit-Car-Nut » Thu 05.04.2018, 13:35

Thanks for all of the messages from everyone.

There most likely will be a huge amount of new M100 replacement parts on the market soon...

I will know better next week what steps I will have to take.

For anyone considering a Shift Cable Kit, I have 2 sets assembled and one set in the test car. I hope to be able to continue offering them but probably won't order any more bare cables until things calm down.

I also have a warehouse full of used parts, so asking sooner is better than later if you are looking for anything to fix your own car.
Last edited by Brit-Car-Nut on Sun 03.06.2018, 15:00, edited 1 time in total.
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Re: More Prostate Issues

Postby tigerdog » Wed 18.04.2018, 01:43

Just saw this post, John. Truly a sucky turn of events. I hope the NIH folks are as on-the-ball as they have been for your ongoing ills. Please keep us posted!
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Re: More Prostate Issues

Postby Brit-Car-Nut » Wed 18.04.2018, 12:10

I have been at NIH Maryland since Monday. One day of paperwork and two days of tests and scans. I will get the results later this afternoon and then more paperwork.

Early flight home tomorrow morning and then will have time to digest what they tell me.

Thanks for everyone's concerns.
Last edited by Brit-Car-Nut on Sun 03.06.2018, 15:00, edited 2 times in total.
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Re: More Prostate Issues

Postby Dave Eds » Sun 03.06.2018, 14:40

Temporary thread title - John to edit as appropriate.
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Re: More Prostate Issues

Postby Brit-Car-Nut » Sun 03.06.2018, 14:53

Thanks Dave. I changed the first post to better identify the basis of the thread.

Can you change all the headings on the postings by others to "Re: More Prostate Issues"
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Re: More Prostate Issues

Postby dapinky » Sun 03.06.2018, 15:40

Brit-Car-Nut wrote:Can you change all the headings on the postings by others to "Re: More Prostate Issues"


Done.

And yet another oportunity to encourage all guys of "a certain age" to get yourself tested - whilst I fully appreciate that there is no 'foolproof' test for this horrible malady, there are things that can be done - and something is better than nothing.
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Re: More Prostate Cancer Issues

Postby texas2201 » Sun 03.06.2018, 15:53

Sorry to hear this John - I wish you well and all the luck you can get
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Re: More Prostate Issues

Postby Saltire » Thu 28.06.2018, 10:08

dapinky wrote:
Brit-Car-Nut wrote:Can you change all the headings on the postings by others to "Re: More Prostate Issues"


Done.

And yet another oportunity to encourage all guys of "a certain age" to get yourself tested - whilst I fully appreciate that there is no 'foolproof' test for this horrible malady, there are things that can be done - and something is better than nothing.


Dave, I wish it were that simple. My NHS practice (the only one within a 10 mile radius) is advising against, and issuing the attached documentation to those who ask.

My suspicion is that they don't want to be swamped by 'men of a certain age' asking for PSA tests, and so they're trying to fob everyone off.

Patient_info_sheet - Prostate cancer.pdf

Prostate cancer - Should I have a PSA test_ - NHS.UK.pdf
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Re: More Prostate Cancer Issues

Postby dapinky » Thu 28.06.2018, 11:26

Jonathan,

I know where you are coming from with this. I had to go for my anual blood tests a week ago - I asked if PSA was one of the 'standard' tests (they took enough blood to float a small ship). The nurse looked shocked that I should ask, and said 'no'.

Apparently, I need to specifically ask, then see a Dr for a 'physical exam', then they decide if they NEED to do a PSA...... until I explained that it was my right to demand a test due to age/family history..... especially as I have been tested for the past few years anyway (but they seem to not have any records of that).

.... at my old surgery, all that was required was a question about it and I was 'on the system' for testing. I know that the NHS is struggling for cash (and this isn't the place for political arguements about whys and hows), BUT even if they can't do it for everyone, they could refer patients for 'private' testing.
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Re: More Prostate Cancer Issues

Postby Steve A » Thu 28.06.2018, 14:26

I’ve now had the “physical examination “ , I discussed having the blood test with the doctor but he insists you only need to if you have symptoms, which we all now know is rubbish, he even said that an annual physical check isn’t necessary.
Because the testing is flawed it seems to have given them an excuse not to do anything :x
The irony is now I’m having a blood test because I suffer from carpal tunnel :bonk: but that won’t shorten my life :banghead:
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Re: More Prostate Cancer Issues

Postby chris.t » Thu 28.06.2018, 14:36

This is a ridiculous situation. When I think of my own situation where I had a cholesterol test and without telling me they decided to do a PSA test as well. The test was positive which led to biopsies being taken. Whoever decided to send my blood off to be PSA tested on the fly saved my life. I had no symptoms whatsoever!
Could the 'Hokey-Cokey' actually be what it's all about?
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Re: More Prostate Cancer Issues

Postby Rusty Wishbone » Thu 28.06.2018, 21:22

All I can say is that women wouldn't put up with this for smear tests and breast cancer tests.
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Re: More Prostate Cancer Issues

Postby Steve A » Thu 28.06.2018, 23:47

Rusty Wishbone wrote:All I can say is that women wouldn't put up with this for smear tests and breast cancer tests.

There is no comparison as there test is more “black and white” ie straight forward with no false positives or negatives
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