Diagnosis and beyond
Posted , 3 users are following.
The Meeting for the diagnosis went well. A MacMillan nurse was in attendance and followed up immediately with a further session to make sure I had understood and remembered what was said and agreed. She also gave me a number of leaflets etc.. The homework I had done meant that I was familiar with the terms used. The details are :-
PSA 2011:2012:2014 7:10:18
Left 4+3=7; 3/5: 27% Right 4+4=8; 4/5; 12%
Volume 61cc T2 ? T3
The recommendation was radiotherapy for 7.5 weeks after 3 Months of LHRH hormone treatment. I was also offered surgery after hormone treatment with the likelihood that I should also need radiotherapy once I had recovered from surgery. The option was not too inviting and about 30 years ago when I last had a general anesthetic I had great difficulty in recovering consciousness. So the decision was easy for me. After all my anxiety and self-education over the preceding week the diagnosis was easy to understand and accept. I had guessed T2 or T3 from the comments following the DRE. The Gleason scores I just accepted. The biopsy had been very well done with 7 of the 10 samples containing cancer cells.
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My wife accepted the result With resignation and did not wish to get-into the details.
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So that tidies up the three conversations I started during the week before the diagnosis. Now I can turn to the present and the future in this new conversation. Well, almost. I discovered a few days later why I had not been referred to the clinic 2 or 3 years earlier. The PSA values for 2011and 2012 were on the hospital's system but not on the G.P.'s system. That is something for me to follow up.
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My wife is determined to support the medical treatment by feeding me all that is best to combat prostate cancer and to maximise my health generally. To this end she is giving me a vegetarian diet including a daily glass of liquidized raw vegetables. Her researches have indicated that beetroot, radish, carrots, some sort of seaweed are important elements and lots of spring water. When she can get them all vegetables, pulses and seeds should be organic. Coffee and black tea are out and green tea is in. (There is a conversation somewhere on green tea.)
And so if she has anything to do with it I shall go through my treatments fighting fit. At present I don't find this difficult for since my biopsy I have had a poor appetite. I expect that I shall do very well and suffer little from being deprived of fish, poultry and red meat. I am happy drinking green tea. So things are shaping well as I get through my first week on hormone therapy.
George
0 likes, 16 replies
Dudley71081 georgeGG
Posted
Commiserations. A plus though, is how calm you sound.
My ipad has again lost a response to you ( will have to run it into an Apple store ), so forgive me, for now will just reply staccato:
Anasthesia today has made incredible advances from 30 yrs ago, much the same as Space travel has.
Also bear in mind, you may not be able to have Rad if you don't have surgery.
How you have been allowed to fall through the cracks and not be offered any investigation / treatment from 2011 through 2013 is...UNBELIEVABLE !
Who authorised the PSA tests ? Why weren't you rung with the results ? Why didn't YOU follow them up ? What happened to 2013 ?
Basically what the HELL was going on, or not...and why?
As you will have found out in your research, delay in commencing treatment is the principal progenitor of a poor outcome. So someone somewhere has an awful lot of explaining to do.
More pad probs so I'll keep this short for now.
Good luck George. Hang in there.
dudley
georgeGG Dudley71081
Posted
Oh I was pretty steamed up and had some choice and unkind thoughts about my G.P. Not nice being the subject of a horlicks. How many others in that practice have defective information? The system may be country wide, so how many in UK have defective information? And why no follow up in 2011 and 2012? 2013 is simple. I thought PSA was included in the annual blood tests but I had changed G.P. and the new practice does not do PSA unless the G.P. asks for it. In 2014 the lobotomist ask me if I wanted PSA too? "I usually do" I answered casually. Ignorance can be deadly in many situations. For once ignorance countered the ills of ignorance. How close I was to being T4+++ before I knew anything about it.
So I have two issues. PC and what went wrong? I need to keep the two appart or WWW wll prejudice the outcome of PC. PC has the priority in my book. But I owe it to others to attend to WWW.
I hope you find a solution to your iPad problem. It sounds frustrating and very annoying.
George
georgeGG Dudley71081
Posted
George
Dudley71081 georgeGG
Posted
I wish you well and I am not judging you. Also I intend no offence. But I am simply unable to believe the veracity of the chain of events you have described.
Regards
Dudley
georgeGG Dudley71081
Posted
I am sceptical too and such failures are just something that happens in the media reports. But it has happened to me. It is bizar. It is unbelievable - incredible in the sense it had when we were younger. So I will try your incredulity a bit further. There are ramifications beyond what I have discribed. I changed G.P. practices about two years ago. The reality is that both practices have failed me.
I can say no more. Our Master instructs us the our yea should be yea and our nae should be nae.
George
Dudley71081 georgeGG
Posted
It is probably best for me to explain where I am coming from.
My career was in Hospital Risk Management and Medical Negligence Prevention.
I worked concomitantly with the Medical Defence Union.
In the chain of events from 2011 through 2014 which you have postulated, there are if what you say is true, seven clear breaches of Medical Protocol. And frankly George whilst according you respect and acknowledging that your case could be one in about two million ; without substantiation, I do not believe it.
The harm which posting false or misleading information on a site like this causes, is immeasurable.
Rregards
Dudley
georgeGG Dudley71081
Posted
I understand your point. On an anonymous forum such as this I cannot provide any substantiation. If true, do I have a moral obligation to have the matter investigated independently? George
Dudley71081 georgeGG
Posted
And prior to this, you have posted the following :
' I had been beating myself this morning with a belt and then a cane '
' So I led you all a merry dance, not at all realising I was acting and feeling so out of my usual character '
' I hope this unpleasant and potentially dangerous phase passes soon '.
And in consequence of which you may like to consider whether you have damagedyour integrity as a witness, if called upon to give evidence I any trial of Liability. In my experience, any Defendant's Lawyer would seek to exploit such a
perceivable lack of stability.
Your best way forward then would probably be, to approach a Lawyer experienced in matters of Medical Negligence on behalf of Plaintiffs. If you can convince him/ her of the veracity of your case then he/she will in due course write to the Hospital and both GP Practices on your behalf.
This act will trigger an internal review by those bodies and consequent upon that there would be, if those Institutions are in any way culpable in the delay to your receiving treatment, procedural amendments aimed at preventing a recurrence.
It would seem the moral obligation you have is the historic one. Which is to tell the truth, the whole truth and nothing but the truth.
Regards
Dudley
georgeGG Dudley71081
Posted
1. yes that unpleasant phase ended on the day before the diagnosis meeting. There has been no recurrance.
2. thank you for those helpful and constructive comments. It seem right to speak to my G.P. before consulting my lawyer who is partner in a large national practice.
George
Dudley71081 georgeGG
Posted
' in 2014 the lobotomist asked me if I wanted PSA too ? " I usually do " I answered casually '.
I am not forgetting that if you are genuine then you are like many of us, in a difficult position health-wise.
You have not said whether it is now disproven or either proven / suspected that your PC has escaped the capsule.
Fourteen days ago, you said : ' crucial issue is likely to be whether cancer has spread or not '.
So...now that you know...how are you George ?
Regards
Dudley
georgeGG Dudley71081
Posted
Thank you for those further thoughts.
I have now received my appointment to have an NM Bone whole body scan next Tuesday.
The urologist thought I might be T2 but there is the possibiliy that the seminal vesicles may be involved but too small to show on the MRI Scan. Hence the T3. The bone scan is to confirm that there is no spread to any bones.
And yes I am in a difficult position healthwise. My earlier worries were all too sound. But knowing the situation is much easier. I have got used to it and am getting on with things in my new normality. At 73 it is a much lesser issue than for a 50 year old or even 60 year old.
Dudley71081 georgeGG
Posted
It is a good idea to talk to your current GP whose interest in your health care is wholistic; and which therefore encompasses both your physical and mental status and contrary to concern you have expressed, this will not prejudice the ongoing* standard of care you receive for your PC. She is in any event out of the frame so far as that* goes; but she may be able to cast some guiding light as to whether there have been lapses in the duty of care towards yourself, whether actual or perceived, before her time.
Furthermore you may also gain insight as to whether any action/inaction you may be responsible for has affected the timeliness of your treatment and/or your current prognosis.
You have said...' and the new Practice does not do PSA unless the GP asks for it '.
I do not understand that remark. No Practice would instigate a PSA test unless a Doctor had asked for it. I am wondering whether you have confused this procedure with biopsy which, taking into consideration the age and underlying health status of the Patient, is not always prudent?
Finally you talk about your Urologist and ongoing treatment (s) including Radiation Therapy and Hormone Therapy but make no mention of being referred to an Oncolgist, whose responsibility these therapies are; and who would be organizing your ongoing treatment plan. Have you seen an Oncologist ?
Kind regards
Dudley
georgeGG Dudley71081
Posted
Thank you for that further help. I will take that on board.
No, I have not seen the oncologist yet. The urologist told me that he would not be seeing me again and that I would in the future be cared for by an oncologist. The report from the bone scan will I expect go to my G.P. but I will ask.
George
Dudley71081 georgeGG
Posted
On the face of it and without the benefit of further information, what you purport has been said to you would seem to be, not right at all.
The bone-scan report will go to your Urologist, because he ordered it. Also, a forward review apptmnt would have been made for you.
What you are purporting, is just plain wrong.
And if what you say were true, once again in your case, there is potential for a breach of protocol. After all, what Specialist would order a test for a Patient the results of which, he is not interested in ?
So once again we have you in an unusual medical scenario and with the potential for another stuff-up..
Generally speaking, so much within the content of your voluminous posts is un-cohesive, or medically unsound practice, or just plain wrong George, that anyone might be forgiven for wondering, if the whole thing is not a fabrication ? Additionally, there are so many places where you do not mention a standard sequential aspect of normal medical treatment in YOUR supposed treatment scenario, until it is fed to you by another correspondent's post.
And so, I am sorry to feel obliged to say to you George, that neither it nor you ring true.
Nonetheless I close by sending you both my regards and best wishes for a speedy recovery from whatever illnesses, whether they be physical and/or mental, from which you may be suffering.
Dudley
georgeGG Dudley71081
Posted
Thank you for these comments. I will keep them in mind.
Best wishes for you recovery.
George