Scotland UK. Recent meet (my 3rd 3 monthly visit) with my RO and he advised that latest bloods show PSA now steady at <0.1. I asked what my T levels were and he replied that T levels don't matter as long as my PSA is maintaining the low readings. So, is he correct? Although I have steadily lost the majority of my male 'urges' occasionally I do get 'that' feeling and the resulting hardness, so I am assuming that there must be some T roving around my system! What if any, is the relationship between T and PSA levels?
T levels don't matter!: Scotland UK... - Advanced Prostate...
T levels don't matter!
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StuartS
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RO is right. That "feeling" mostly comes from brain and not from testicles now.
As long as your PSA is undetectable, you can assume your ADT is working well. But if your PSA rises, is that due to IMRT failure or ADT no longer working? How can you know unless you track T levels?
Hi Tall_Allen. Thanks. I will keep your comments in mind should my PSA start to rise. Still have a year to go before they are considering any change to Lupron, though I appear to be lucky as I am not having any side effects that I can't deal with !
The actual question is the relation of the Free T and more importantly that of DHT with PSA. Both of them are a fraction of the Total T, yet both percentages can vary by much.
StuartS in reply to
Hi justfor..., I have done minimal research on DHT, but understand that it is produced by T. So if T is low then presumably DHT will also be low and perhaps that is why I am losing body hair..., but thankfully, not hair from my brain warmer!
Technically....you might well see an increase in the hair on your head as DHT causes shrinkage of hair follicles...less DHT more and thicker hair on ones head.
Hi Tommyj2....
Funny you should mention hair thickness..., I normally visit my barber once every two months, but noticed this year that I am visiting monthly..., mainly the sides above my ears are thickening and growing much faster than normal. Never put any thought that it could be linked to the cancer and DHT. Having spent 33 years in the UK Royal Air Force, I have this thing about long thick sticky-out hair on the side of my head which I can't abide.
in reply to StuartS
After 33 years ( rebel hair) ??
Hi Jimhoy. My request for T levels were brought to a sudden stop when RO advised those figures were not necessary. However, I have since done a bit of research and it would appear that perhaps I should have requested details of my T levels so that I have assurance that I have a serum testosterone level of lower than 20 ng/dL. This level I understand would indicate that the Lupron was indeed doing its job. Not too sure if its worth progressing as I have the test results of my last bloods, and T is not included in the list of checks. To insist on T levels would probably require additional tests that are not in the current UK prostate cancer treatment protocols.
As one who for the last 16 years has always tracked T and PSA together, I am quite surprised about those who either don’t know what to do with the numbers or see little value with treatments options. There is nothing in the UK treatment protocol that precludes monitoring T. Here are two discussions on the subject.
ncbi.nlm.nih.gov/pubmed/304...
ncbi.nlm.nih.gov/pmc/articl...
Good luck.
GD
StuartS in reply to
Hi gourd-dancer. Many thanks for the links. The first one concerning the UK survey is particularly interesting; something to consider before my next RO appointment at the end of January.
I’m hard every night and I have had 3 t four years now. I’m also castrated surgically and still on adt .. t level proves castration .Women have more t than I..I’ve been on a test adt drug and they test my T and Psa and and 50 other things. I thought testing for t was mandatory for all pc patients. Not with your guy. You could probably pay for your own test . I think that you should know .what your t level is ...Good Luck .
StuartS in reply to
Hi Lilu700. I agree with your comments. I will be discussing this with my RO in 6 weeks, and then see if they will add T to the tests they do at the moment. I may have to go 'private' (pay) for the T test but that is not really an issue.
in reply to StuartS
You should know .. it your life . Not the doctor’s .. let us know please what that t level is . Mine is 3 . That’s almost nothing. Ahhh the joys of castration persist .. Take care .. scott 🌵
StuartS in reply to
Lulu700..., I will certainly post my T levels as and when!!!
in reply to StuartS
Thank you . Welcome to our band of misfits. I speak only for myself. You can get great advice here.
StuartS in reply to
I know. I have had some extremely good pointers from Tall_Allen and others over the past year or so. I read the postings on this site daily, and its amazing what snippets of information can be gathered from the many contributors.
in reply to StuartS
We do have some Amazing people . Youre a great addition to the crew... Enjoy your day
I asked the same question as you to my MO and got the same answer. My PSA has been <0.01 since I started ADT almost 4 years ago. I had my 8th 6 monthly Eligard injection 2 weeks ago and my MO said there was no point checking my T in my blood tests because it would be low as well.
Hi Brightman. Thanks for the feed-back. Will probably challenge the RO at the next meeting to include T in future tests even if only to re-assure myself that all is OK.
in reply to Brightman
He’s is correct., you’re probably very low like me..Part of my test drug is testing for t level.. Its nice to know where you’re at .. peace...
I would think that knowing T levels would be particularly necessary if one were planning on intermittent ADT...No?
Tommyj2...., Absolutely!! I think you have now added to my ammunition cache for my next confrontation. I am aiming to temporary discontinue Lupron in 2020 so knowing my T would be extremely beneficial in this respect.
in reply to Tommyj2
For sure..
I always arrange a blood test through my GP about a week before I see the consultant. I tell the GP what tests are required.... That gives me an element of control and I can address any concerns I have in advance and have a proper discussion with the consultant. I found it unsatisfactory to see the consultant with no current information and then be sent for a blood test.... No logic in that is there. Cheers
Hi TFBUNDY..., I have a dedicated local NHS cancer support team in UK working to a specific agenda who set up the RO appointments, then coordinate the blood tests as necessary. I usually get a text 10 days before my RO appointment to attend my local health center for bloods to be taken. The results are uploaded to the NHS system by the lab, and my RO can then view the details before I attend my appointment. Unfortunately, I don't get a copy of the report before meeting with the RO, so I only discover any issues when at the actual appointment. I feel that the RO is not comfortable with having to respond to questions from patients in real time, and that the patient should just accept his diagnosis without comment. At my last RO appointment he was quite taken aback when I requested a copy of the report. He casually flipped the report to me across the desk in a reluctant manner, and I was expecting him to follow that up with a 'now get out of my office' comment, but he didn't! We shall see how he reacts next visit when I request T details in future blood tests!
in reply to StuartS
A big ego and poor beside manor.. I’ve had a doctor like that . More typical than not.. Good luck unblocking that log jam ..
I don't work well with doctors like that. I would seek another. At least in the USA, I've rarely run into one who acts that way.
Probably the Doctors in the US know that the patient is generally free to change their consultant when they are unsatisfied with performance/diagnosis. In the UK NHS, you take what is offered. It is very seldom that any patient will request a change in consultant, unless there is a serious incident that demonstrates that the consultant is incompetent.
One of the drawbacks of “universal” coverage. We pay SO much more in the US but choice IS one of the advantages
That's difficult indeed. In the US, the massive Bell System phone company had a reputation like that. There was a joke bumper sticker with the Bell symbol on it, saying "We don't care. We don't have to.". Funny because it's true!
in reply to VHRguy
They broke ma bell apart didn’t they?
Just had my first two shots of Firmagon about 2 1/2 weeks ago. The MO said my T numbers were 534, he is confident a good response in PSA will be achieved.
Love Border Collies
Hi Ramp 7. Only been subjected to Bicalutimide and Lupron in my bid to kill the beast and have found the side effects a pain in the butt..., but not as debilitating as some others have on this site. So I guess I have to be thankful for that.
Border Collies..., kings/queens among dogs. Islay is a 4 year old bitch with a mind as sharp as a surgeons blade. I suspect that she is the main reason I am not suffering more with Lupron side effects. She wakes me within five minutes of 07:00 each morning, with a firm paw to get me up, and is so enthusiastic about her walks that, regardless of the weather, I just have to get up/dressed and we are out within ten minutes, for an hour or so through the woods and across farmland. I could go on for ages about her antics, but if you know Borders, then I have no doubt you will have many stories of your own to tell! Just got the paw and she is now standing at the front door - time for her afternoon outing to the rive, certainly keeps me on the go!
She is your friend, your partner, your defender, your dog.
You are her life, her love, her leader.
She will be yours, faithful and true, to the last beat of her heart.
You owe it to her to be worthy of such devotion.
My 3 year gal, Skye, gets me up a tad earlier, usually 4 AM. We don't have sheep but she'll push the chickens around. Yes, long walks in the woods chasing sticks ending with a swim in the Lake. Peace of mind.
My sentiments entirely..., we have a set of marked hardwood sticks for her.., short run .., she drops the stick then low low on the ground hiding until we approach..., keeping her steady collie stare eyes on you..., then a race to see who gets to the stick first! We are knee deep in leaves at the moment and she behaves like an Arctic fox at times..., pouncing into the leaf piles looking for field mice and squirrels to chase! She does the same routine when we get snow. Absolute 'peace of mind' and periods daily where I can put my PC troubles into perspective!
in reply to Ramp7
Nice..
in reply to Ramp7
Good luck with the Firmagon. It worked well for me ..I wish you the same . It knocked me down to undetected and I ve stayed there over four years now. Will it last ? Only god knows.
Ramp7 in reply to
That's great news. Twelve years since RP, a four year remission would be welcome. This is my first time for any ADT therapy.
in reply to Ramp7
Welcome aboard the castration train... you’re sure to have fun.. what once made us strong is now our nemesis..at least until they come up with something more humane than stripping our T to the ground...
On ADT as long as PSA remains very low, Testosterone is expected to remain low. I have been on Lupron + Casodex for my metastatic prostate cancer. Every time I had a Lupron shot doctor checked only my PSA, which has gone down from 4.48 to 0.06 in one year. Now that I am on ADT vacation, my PSA as well as Testosterone will be checked every three months. If my PSA starts rising without Testosterone increase, that could be indicative of onset of castrate resistance. I don't know why I feel that I will be playing Russian roulette with my metastatic cancer as long as the ADT vacation continues.
in reply to dac500
We are all at the roulette table with APC....
Hi dac500...,
Thanks for your comments. I will be watching my PSA closely, and hopefully the RO will add T to the blood test requirements so that we can also watch for anything that would indicate the onset of castration resistance.
Kill two birds with one stone.... Tell that snotty doctor to bend over and grab his ankles, then let him tell you that T doesn't matter.
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 12/16/2019 6:51 PM EST
in reply to j-o-h-n
Bend over , I’m driving !
j-o-h-n in reply to
a stiff oops stick shift......
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/18/2019 4:32 PM EST
I am reminded of the Indian chief who was riding his horse across the prairie and met this blonde who was lost. He had her get on the horse behind him and he took her to civilization. The young lady thanked him and he said: "no me thank you". The young lady related the story to a friend who wondered how she kept from falling off the horse. She said she held on to the saddle horn. Her friend said Indians don't use saddles. 🍸🍸🤠
HOW!!!....... Now that was funny white eyes.......Thank you...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/18/2019 6:32 PM EST
Reminds me of a song;
🎼He’ll be coming round the mountain when he comes🎼
Thats good, 2U,🍸🤠🤠
I stated my history below, now I’ll state my opinion!!!
I believe that T should be tested prior to any subsequent injection of Eligard (or its equals). If T is below castration levels, then the PURCHASE of unnecessary drugs are not necessary “at....that....time”.
Leuprolide drugs are used to cause castration.....PERIOD!!! It does NOT cure cancer. Castration has it’s own side effects that are very common and are predictable. I feel the rest of the side effects (less common to rare) are due to drug allergies in a best case scenario and “poisoned” at worst case!!!!
A 3mo dosage of Eligard keeps me AD for over 6 to 9 months (both periods durations / results were physically proven). Therefor, on a regular 3mo SoC protocol, @ 6 mo’s I could be overdosed x2 and @ 9mo x3 (worst case)!
The last two injections were unnecessary and what I claim to have caused my current horrendous mental and physical condition (too long of a story)!!
Sooooo there’s my opinion. I know that opinions are like A$$holes, that everyone has one and most stink but mine is combined with my personal experiences and unfortunately for me, it’s all hindsight!!
When your Dr says “ ADT for 18 months” it shouldn’t automatically be 6 x 3mo dosage @ every 3mo intervals (or 1mo, 4mo, 6mo). It should be 3mo and then testing @ 3 - 5mo’s for T levels to confirm castration. Put the poison on hold until it is actually needed again!!!! Change the SoC to benefit the patients well being! Not Big Pharms’ and their own financial well being, while still competently continuing to treat the disease. ESPECIALLY FOR THOSE PAYING OUT OF POCKET!!!!
They use so much of this shit that I read there is now a shortage!!! We all know what that means!!!!! $$$$$$$$$$$$$$
Rant over!!!
Jc
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