Hi John,
I’m new to the website and in a similar place to you. There are lots of us out here. My express ride to hell started in April 18, figured I would start collecting data on my prostate at age 53. 😂 fist reading 7.5 and I just knew I was in the shoot.
If you all think about your journey this far we have gone through multiple layers of medical professionals who have all been at best overly optimistic at worst unrealistic. We forget that they are trained to manage us through the layers of disappointment it’s a skill. I had to get past 3 GPS who told me I had nothing to worry about. 2 DRE’s undetectable, smooth prostate nothing of concern. Private urologist who told me I had nothing but a UTI and an NHS queue at the leading London centre pretending to be a same day service, one stop shop diagnosis centre that turned out to be one month long queue management centre to get here today.
MRI staging - Risk of microscopic t3a, leasion visible with capsular contact. Tumour confined so T2
Biopsi. Gleason 3+4 medical staging t2c, PSA 7.5 - Here I dogged my first bullet. Private biopsy (saturation 24 core sample) at my request completely contradicted MRI. If I had gone with the NHS targeted 4/8 core I would have missed a lot of info.
Consultation with leading Prof - called it t1a, surgeon 1 called it t2c, surgeon 2 called it t2B. Surgeon 1 said I would live to 80 and had more chance of dying of being run over by a cab and offered AS. Everyone saying it’s treatable.
RALP in June, now at the six weeks PSA check everyone expecting to get zero PSA and pop a cork. But not me, I knew it would be bad, and so it goes on ... At consultation PSA is detectable at 0.03 I’m sold more rubbish and told it will drift to undetectable - I go home and calculate for myself where I should be using the PSA half life calculator. I should be zero!
Cosultation was like being told I had cancer all over again. Earth moving. Histology now says t3a NX MX. I’m told that it was actually a negative margin because the cancer never passed the nerve bundle.
You know what. I don’t believe a word of it. You cannot let your guard down. Not a single medical professional has made a reliable call in my case. Not once.
Fresh
Edited by member 20 Jul 2018 at 20:22
| Reason: Not specified
Base jumping without a parachute should be frowned at, never criticised. Fresh |
User
Oh for Goodness sake! 0.03 is an undetectable result - you should be out celebrating! There is no such thing as a zero PSA result (apart from in an exceptionally rare circumstance)
Edited by member 20 Jul 2018 at 21:51
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
My husband was diagnosed in April - very similar results to yours - Gleason 4+3 =7, stage T3b N1 M1. At no stage did his consultant give him a prognosis of life expectancy, just the comment ‘you have several years ahead of you, we can’t cure you but we can try to arrest it’. He took this as a positive and accepted the course of treatment recommended - hormone tablets initially, early chemo and participation in a Stampede trial. The trial started a month ago and consists of estradiol hormone patches, 4 placed on upper body, changed twice a week. Up to now he has felt fine, the only niggle is the patches can slip if he gets hot and sweaty and they initially left red raised patches but this is now lessening over time. He started his chemo last week. Feeling ok apart from aching legs and a little nausea last couple of days but his chemo nurse said that was to be expected as days 3, 4 and 5 after chemo can be when he will feel ‘a bit rough’, but then he should start picking up again. He has a positive outlook and takes each day as it comes. I know everyone isn‘t the same and take bad news in different ways but try to be positive. You’ll get lots of help and support from many areas, including this website.
User
Lyn we need in this forum to agree on standards that will help everyone be equipped to challenge and verify their prognosis and also the medical professionals who are somethimes falling short.
CRUK call undetectable PSA at less than 0.02 so do all of the practitioners I am engaged with at a leading institution. So a measured PSA at 0.03 is not undetectable. I accept we are not seeking zeroes.
Its interesting to compare notes with my friends in Europe and America who measure PSA to a more precise level at 0.001 they use greater precision and never really use the terms zero/undetectable.
The reason I raised this point is the doughnut boy said his staging was t3a n0 m1 - that should be t4 right. M1 So that’s the first question I would ask
Fresh
Edited by member 22 Jul 2018 at 15:40
| Reason: Not specified
Base jumping without a parachute should be frowned at, never criticised. Fresh |
User
No, there is a difference between ‘undetectable’ and ‘detectable enough to be worth acknowledging’ - CRUK are clear that biochemical recurrence is marked at 0.2 or above and almost all the leading oncology centres have dropped usPSA as unreliable. It may be that testing to 3dp is still common overseas where there are commercial motivations for getting people to believe they need more treatment but that is going out of fashion now in England. My OH has had results to 2 or 3dp in the past. Strssing about a PSA of 0.03 is a waste of what should be happy times for you since a woman that just had a good orgasm or is breast feeding will have a higher PSA than yours.
Having M1 doesn’t make a T3 into a T4. You can have a T1 and still have mets (M1) although it is quite rare.
Edited by member 22 Jul 2018 at 16:10
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Lyn,
This is a question I have been thinking about a lot over the last few months. When does T3 become T4? My diagnosis was T3,M1,N1 with extensive mets. My understanding that was that any spread beyond "local" was defined as T4. Is this not correct?
Peter
User
Assume the prostate is an orange in a fruit bowl.
T3 is where the cancer has broken through the orange peel and is bulging out. (T3a - it is only on the orange / T3b - it has also spoilt the paper the orange is wrapped in)
T4 is where it has broken out and is also now on the apples in the bowl (the apples might be the bladder or bowel, perhaps)
M1 - it has spread to the bananas which were on the table (bones, liver, lung, etc)
N1 it has spread to some cherries that were lying on the table (lymph nodes)
Sometimes the cancer hasn't spread to the apples but it has jumped out of the bowl to the bananas or cherries (T3 N1 M1)
Sometimes the cancer has only made it as far as a few cherries that are right next to the bowl (locally advanced) but in other cases, it has gone into loads of cherries (advanced)
Your diagnosis of T3 N1 M1 means that although cancer cells migrated to your bones and lymphatic system, there isn't a massive tumour that has burst out of your prostate and moved into your bladder, bowel or pelvic wall
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Thanks Kazzy
I look forward to hearing that all is going well. I'm going to have a chat with my oncologist on 6th August, to put my mind at ease that not going on chemo now isn't a case of shooting myself in the foot.
It's very, very difficult, and a little disconcerting, when people with similar (on the face of it) diagnoses get diverse treatment plans.
All the best
John
User
Lisa
Thanks very much for the reply.
I agree that there is this disparity about level/type of treatment, as in including the chemo or not early.
I'd read the info on the stampede trial that indicated early chemo was shown to have benefits.
I will definitely be asking for more info/clarification at my next meeting.
I hope to hear good news for you moving forward.
Kind regards
John
User
Hi Lyn,
Thank you for the explanation, that does make it much clearer. It was only an academic question anyway and a point of interest to me.
For the record, my complete diagnosis is as follows (quoted directly from my onco's summary)
T3 N1 M1c carcinoma of the prostate.
TRUS guided biopsy Gleason 4+5 cancer affecting all cores from the right lobe. Gleason 4+4 cancer affecting all cores from the left lobe.
It is all very confusing!
Apologies to DonutBoy for using his thread for this enquiry.
Peter
User
Lynn / Fresh
0.2 is the internationally accepted level at which a biochemical recurrence has occurred. This does not mean you will die of cancer or that you even have to have more treatment it is just a figure that indicates if the treatment was RP it has probably failed.
"Undetectable" depends on the assay being used so if the level is 0.05 and you use the 0.1 test you will be "undetectable". If you use the 0.001 test you will be 0.050 ie detectable. There is no accepted definition of undetectable since the USPSA was invented.
Fresh
Even in the USA where USPSA is routinely used some institutions are reverting to the standard (0.1) assay because of the lack of tangible benefit from testing to 0.001. This is because people with adverse pathology at RP tend to get ajuvant radiotherapy anyway regardless of PSA. There is some research that suggests a post surgery PSA of 0.03 is "indicative" that further treatment will be required but this is not widely accepted and there are enough guys out there with detectable stable PSA to prove that it is worth waiting for a definite PSA rise before risking the potential side effects of radiation treatment.
Finally the same research that came up with the 0.03 figure also confirmed there is very little risk in waiting to hit the 0.1 threshold. The nomogran below shows this:
http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/
Edited by member 24 Jul 2018 at 10:46
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User
Useful response fracij but when you reply using quote, click your cursor after the last bracket and drop down one line. Then your response appears below the item you are quoting which is easier for everyone else to follow.
Edited by member 24 Jul 2018 at 10:34
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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