Lorraine is a nurse specialist and sex therapist and here to answer your questions...
Hi all, first post, so let me know gently if I commit any faux-pas!
I am tracking my PSA pretty closely, as I am trying unconventional stuff while my PSA is still low (0.1). I had a +ve margin after prostectamy.
Can anyone recommend a good lab for taking a monthly PSA sample?
BTW I am currently working on:
- Traditional Chinese Medicine (but prepared by German Pharamacy)
- Diet (no sugar, carbs, starch) pretty successful, lost 20kg!
- mediation (apparently helps the immune system)
All of which are pretty off the traditional path, but as long as the PSA keeps low, then I feel that I will give them a chance.
I am experiencing the UK, and the German health system on this, which in itself is quite interesting!
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Hello RobD, I can’t answer your question. Are you not getting regular PSA tests at your local GP? Are you concerned that some labs are more accurate than others?
Good luck with your diet, exercise and meditation. Not sure about traditional Chinese medicine.
Can you also tell us your PSA at diagnosis, Gleason score and staging?
Best wishes, Ian.
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Personally I feel that 1 month psa's is a bad idea, you 'll be on tenterhooks all the time, what if it goes up 1 month? Far better to go for quarterly psa and try not to think about it too much.
I like the rest of your regime though, cutting out sugar and carbs and exercising will all help hopefully keep the cancer at bay.
Thanks for that, the reason why I am so interested, is that I have had a drop in my PSA, following the curve on my graph I should have been hitting 0.13 to 0.16, and from the same lab have gone from 0.1 down to 0.09
Obviously one swallow does not make a summer, but it's a bit of good news, and makes me feel that it might be worthwhile tracking the "alternative" approach until I hit say 0.15, and then revert to Hormone + Radiation, which is what is currently on the cards.
And mediation might be a great help...I suspect Theresa May could do with some of that today at Chequers!
First (Nov15) PSA was 5.66ug/l, (Dec15) Gleeson 3+4, (Feb16) prostectamy...but positive margin, (apr17) PSA was 0.029 ug/l, climbs to high point (mar18) of 0.1 ug/l
At that point resigned to Hormone/Radio treatement, then surprise RMH 0.08ng/ml, which I then verified with my German Lab a few days later with 0.09ug/l (all of my other readings from the German lab).
Early this year the "Traditional Chinese Medicine" that I am taking (prescribed, and made up in Germany, German Dr, German Pharma), had a change of prescription.
So it would appear (and I am not an expert), that there seems to be a change in the PSA curve around the same time as the change of prescription. But it is only a sample size of 1, which why I want to watch this like a hawk!
Sorry I meant meditation, although the idea of a counselor aiming to mediate between the patient and the cancer is an approach I had not considered!!
First of all I have found a lab (The Dr's Laboratory, through a private Walkin GP on London Wall), so that is sorted, and they get the results back next day.
Secondly what I had meant to say was Meditation, not mediation, which was one of my slightly alternative approaches!
Thinks of best selling book: "a conversation with my cancer", hmm dark humour, I guess that is my way of dealing with it.
Yes, I think we could all do with some of that.
Now please . excuse me while I tuck into another piece of triple choc gateaux.
I agree with Steve, I avoid testing too often as it just stresses me too much.
I am on three monthly tests, next one 1st August and I’m thinking about it already.
Hi Rob, I see why you want to keep a close eye on things. There are some who feel the super sensitive PSA test is less reliable than the less sensitive one at one decimal point.
I am not expert enough to add to that, however if you read my profile you’ll see that I had prostatectomy July 2015, (Gleason 3+4 from biopsy). Negative margins but a second more aggressive ducal cancer was also found. Staging became T3a,N0,M0.
My PSA jumped from <0.1 on 1st June 2016 to 0.3 on 1st September 2016 then onto 0.7 by November.
I sometimes wonder if the more sensitive test(not available in my area) would have picked the rise up earlier.
I hope your PSA remain undetectable.
Thanks for that, I am flitting between the German system, and the UK system. As a gross generalisation the approaches are:
a) don't worry we have the best in the world, no need to get into a fuss, and let's not make a drama out of if, we are very caring and sympathetic
b) we are very precise, and like clarity, if things are not clear then we will investigate, we look for trouble and like to resolve things
I picked my PSA in the German system which can report down to PSA<0.014 ug/l
My personal view having gone through this, is that I advise my friends to have a PSA test every 4-6 months, along with other tests, and if they find it expensive, spend less on their car (I know a bit provocative!)
Rather than state that one is better than another, I feel that both systems have their merits, and feel fortunate that there are so many wonderful & dedicated people in both systems.
I have just had my first post-op PSA after 5 weeks which was 0.1 ug/L. (I went to Lloyds Chemist on Monday afternoon and the result was on my EMIS Patient Access file the next day).
The samples go to one of the newest and biggest teaching hospitals in Britain, University Hospital Coventry and Warwickshire, which has all the hi-res scanners and laparoscopic robots, yet the phlebotomy department can only test PSA down to 0.1, which I am told is ‘undetectable’.
I would sooner have a reading of 0.001!
5 weeks is quite early. What you are looking for is a reading of <0.1. The < is important as a reading of 0.1 is detectable. That’s the same number of decimal places my tests are i.e. 1!
There are some who say the higher resolution tests are not as reliable but like you I would probably rather have test results to more decimal places.
Hope your recovery continues smoothly.
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