Prostate cancer
Discussion
Regarding infections my GP did a PSA test (my first ever) 3 weeks after I had had a UTI treated with antibiotics. I had been having gradually worsening flow problems for a year or so. The result was 19 which not surprisingly put the wind up me. A DRA by the GP conformed the prostate was bigger than normal but smooth (good). A repeat PSA was 4.8. I was told to watch and wait. Being the sort that'd rather be doing something I had a private consultation and an MRI which confirmed it was a little enlarged but didn't look cancerous. During the consultation the consultant, who's life work is prostate issues, said an infection, particularly a UTI, can possibly raise PSA levels for up to three months after the infection is sorted.
I've since been on Tamsulosin and my last PSA was 1.8.
I've since been on Tamsulosin and my last PSA was 1.8.
I visited a registrar oncologist for the first time yesterday having been diagnosed last September. I've been on three monthly Zoladex injections which has "put it to sleep" to use his terminology.
He was very thorough and spent a good 40 minutes running through everything. We discussed the choice of having just the prostate targeted by radiotherapy or taking in the pelvic lymph nodes also. That is 4 weeks of treatment vs. 7.5 weeks - all Monday to Friday of course with time off for good behaviour at the weekend. I opted for the lymph nodes too. Nuke it from orbit - it's the only way to be sure.
So they will carry out a targeting CT scan very shortly with treatment starting early in May. We've now booked a holiday for the last week in April as a little treat before the radiotherapy starts.
Oh yes, and I saw the urologist last week. I need to have a 13mm stone dug out of my left kidney by keyhole surgery some time this year. Such fun.
It's fortunate that I am otherwise fit and strong and have an optimistic outlook on life.
He was very thorough and spent a good 40 minutes running through everything. We discussed the choice of having just the prostate targeted by radiotherapy or taking in the pelvic lymph nodes also. That is 4 weeks of treatment vs. 7.5 weeks - all Monday to Friday of course with time off for good behaviour at the weekend. I opted for the lymph nodes too. Nuke it from orbit - it's the only way to be sure.
So they will carry out a targeting CT scan very shortly with treatment starting early in May. We've now booked a holiday for the last week in April as a little treat before the radiotherapy starts.
Oh yes, and I saw the urologist last week. I need to have a 13mm stone dug out of my left kidney by keyhole surgery some time this year. Such fun.
It's fortunate that I am otherwise fit and strong and have an optimistic outlook on life.
I am in the middle of four weeks of targeted radiotherapy (including at least one lymph node). The first two weeks have been fine - just a bit of a time sink. I am starting to have some effects: reduced flow first thing in the morning, looser bowel movements, some tiredness. All are to do with the irritation being caused.
One recommendation, which is working for me, is to take some paracetamol to bring down some of the inflammation.
One recommendation, which is working for me, is to take some paracetamol to bring down some of the inflammation.
Well, after 8 years since radiotherapy finished and 3 monthly then 6 monthly blood tests, I've decided enough is enough. The battle to get anything done by the NHS here, Mid Yorkshire Teaching NHS Trust, is just too much now.
From the start it has been a fight with almost every department, from the GP with her lies (formal complaint upheld after a lengthy fight), to the consultant who told me I had prostate cancer by saying, "I'm Mr ...... you've got cancer. You will have radiotherapy and hormone treatment." No discussion, no outlook, no alternatives etc. He made the nurse who was taking notes sit by the sink despite his enormous desk. Formal complaint upheld and given advice - nurse had also complained.
On to St James Leeds for the radiotherapy. Consultant almost as bland and uncaring, no discussion and simply said I had a maximum of 18 months if I did not have the treatment. During the 37 visits, 2 radiographers never spoke to me, numerous times, as they chatted about their own lives. They left me in the changing room for 30 minutes and having drunk lots of water had to go for a pee. They were rude and angry with me. Formal complaint upheld and they never appeared again in this section.
Needed some medication as the proctitis became very unpleasant and took prescription to the in-house pharmacy. After another 30 minutes they said they didn't have any so had gone to another wing to get it. Another 15 minutes and none in the hospital. Leaving, the pharmacist, a Boots employee, shouted across the room in front of other patients, "Don't you want it then?" Obviously she didn't know but still. I was very tired by now. Formal complaint upheld and apology.
GP does the blood tests and all going well. But I move house, just 5 miles, within the same hospital trust, but the Clinical Commissioning Group in the new area does not do blood tests or hormone injections at their GPs as they do not get paid (£10). I go to the CCG meeting and make my case to the chair, a local GP. He refuses outright. However, a number of nurses and doctors present take up my case and a year later the policy is changed.
However, my GP is less than enthusiastic and it becomes a struggle to get appointments so I choose to go to the nearest hospital instead. No parking as car parks completely full every day so a long walk. For a while all is good but my next telephone appointment is next Friday. Yesterday I went for the test. It was packed with a queue out the door along the corridor and the ticket machine for your place in the queue was empty. Decided to try again later and went back at 3.30pm. All seats taken and ticket machine empty. Another patient said, "She's not taking any more today, she's on her own and finishing at 4." My wife calls the main hospital to discover no blood tests anywhere within the trust group until next Tuesday and as I have to have the test done 7 days before I have no option but to cancel.
I am supposed to get a letter to say when the telephone appointment is going to be but of course it has not come. Again I have to chase it up and more often than not no one answers the phone. When you query it, its always some other department's fault.
I gave a short talk at a Cancer Alliance meeting with representatives from all over the country about my experiences. Some cancer specialists from other areas were appalled at how the trust I am in gets it so wrong. The Care Quality Commission last week rated it as 'Requires Improvement'.
I have now opted to cancel which means I will be discharged. I sincerely hope that you who are starting out with your treatment get the care you deserve.
From the start it has been a fight with almost every department, from the GP with her lies (formal complaint upheld after a lengthy fight), to the consultant who told me I had prostate cancer by saying, "I'm Mr ...... you've got cancer. You will have radiotherapy and hormone treatment." No discussion, no outlook, no alternatives etc. He made the nurse who was taking notes sit by the sink despite his enormous desk. Formal complaint upheld and given advice - nurse had also complained.
On to St James Leeds for the radiotherapy. Consultant almost as bland and uncaring, no discussion and simply said I had a maximum of 18 months if I did not have the treatment. During the 37 visits, 2 radiographers never spoke to me, numerous times, as they chatted about their own lives. They left me in the changing room for 30 minutes and having drunk lots of water had to go for a pee. They were rude and angry with me. Formal complaint upheld and they never appeared again in this section.
Needed some medication as the proctitis became very unpleasant and took prescription to the in-house pharmacy. After another 30 minutes they said they didn't have any so had gone to another wing to get it. Another 15 minutes and none in the hospital. Leaving, the pharmacist, a Boots employee, shouted across the room in front of other patients, "Don't you want it then?" Obviously she didn't know but still. I was very tired by now. Formal complaint upheld and apology.
GP does the blood tests and all going well. But I move house, just 5 miles, within the same hospital trust, but the Clinical Commissioning Group in the new area does not do blood tests or hormone injections at their GPs as they do not get paid (£10). I go to the CCG meeting and make my case to the chair, a local GP. He refuses outright. However, a number of nurses and doctors present take up my case and a year later the policy is changed.
However, my GP is less than enthusiastic and it becomes a struggle to get appointments so I choose to go to the nearest hospital instead. No parking as car parks completely full every day so a long walk. For a while all is good but my next telephone appointment is next Friday. Yesterday I went for the test. It was packed with a queue out the door along the corridor and the ticket machine for your place in the queue was empty. Decided to try again later and went back at 3.30pm. All seats taken and ticket machine empty. Another patient said, "She's not taking any more today, she's on her own and finishing at 4." My wife calls the main hospital to discover no blood tests anywhere within the trust group until next Tuesday and as I have to have the test done 7 days before I have no option but to cancel.
I am supposed to get a letter to say when the telephone appointment is going to be but of course it has not come. Again I have to chase it up and more often than not no one answers the phone. When you query it, its always some other department's fault.
I gave a short talk at a Cancer Alliance meeting with representatives from all over the country about my experiences. Some cancer specialists from other areas were appalled at how the trust I am in gets it so wrong. The Care Quality Commission last week rated it as 'Requires Improvement'.
I have now opted to cancel which means I will be discharged. I sincerely hope that you who are starting out with your treatment get the care you deserve.
Edited by Viper201 on Sunday 31st March 13:47
Blimey - our local hospital (of Lucy Letby "fame") is known to be pretty useless but - touch wood - neither of us have had quite that bad experiences.
Must admit It had occured to me with the news about Charles and Kate that it must be nice not to have to circle the hospital car park for 45 mins looking for a space.
Must admit It had occured to me with the news about Charles and Kate that it must be nice not to have to circle the hospital car park for 45 mins looking for a space.
The unforgettable words delivered to me from my consultant will remain with my for the time I have left. Whilst staring at his computer screen ‘ yes you do have cancer and it’s aggressive, the nurse will take you through to the next door room and explain and answer questions you may have’.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
I had two conversations.
The first was a call after the MRI from a urologist. Very matter of fact. "You have advanced prostate cancer. It is spread to your bladder and at least one lymph node. It's inoperable. We need to do a biopsy to know how aggressive it is." I was alone at home at the time. My wife and kids were 200 miles away. Tough day.
The second was with the Prof of Urology. He absolutely did NOT say these words but both my wife and I took away the following: "You have advanced prostate cancer. It is the most aggressive form possible. It is inoperable and incurable. There's nothing we can do for you. You might have five years if your lucky. The oncologists might be able to treat you. Good luck." I had to move to another room for the nurse to give us some leaflets and some sympathy - but not much positive. Toughest day.
Thankfully, an oncologist offered to see me the next day as a personal favour and he was absolutely brilliant at picking us both up again, showing us how treatable it is. He really understood how to deliver the message. Better day.
I think if there isn't anything surgical available, the urologists want to turf you as quickly as possible to the oncologists (for both good and bad reasons) and so are quite abrupt.
The first was a call after the MRI from a urologist. Very matter of fact. "You have advanced prostate cancer. It is spread to your bladder and at least one lymph node. It's inoperable. We need to do a biopsy to know how aggressive it is." I was alone at home at the time. My wife and kids were 200 miles away. Tough day.
The second was with the Prof of Urology. He absolutely did NOT say these words but both my wife and I took away the following: "You have advanced prostate cancer. It is the most aggressive form possible. It is inoperable and incurable. There's nothing we can do for you. You might have five years if your lucky. The oncologists might be able to treat you. Good luck." I had to move to another room for the nurse to give us some leaflets and some sympathy - but not much positive. Toughest day.
Thankfully, an oncologist offered to see me the next day as a personal favour and he was absolutely brilliant at picking us both up again, showing us how treatable it is. He really understood how to deliver the message. Better day.
I think if there isn't anything surgical available, the urologists want to turf you as quickly as possible to the oncologists (for both good and bad reasons) and so are quite abrupt.
crankedup5 said:
The unforgettable words delivered to me from my consultant will remain with my for the time I have left. Whilst staring at his computer screen ‘ yes you do have cancer and it’s aggressive, the nurse will take you through to the next door room and explain and answer questions you may have’.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
sorry that you had that level of bedside manner & also for the diagnosis. Fingers crossed that subsequently you've had better treatment in every senseThe nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
rovermorris999 said:
Regarding infections my GP did a PSA test (my first ever) 3 weeks after I had had a UTI treated with antibiotics. I had been having gradually worsening flow problems for a year or so. The result was 19 which not surprisingly put the wind up me. A DRA by the GP conformed the prostate was bigger than normal but smooth (good). A repeat PSA was 4.8. I was told to watch and wait. Being the sort that'd rather be doing something I had a private consultation and an MRI which confirmed it was a little enlarged but didn't look cancerous. During the consultation the consultant, who's life work is prostate issues, said an infection, particularly a UTI, can possibly raise PSA levels for up to three months after the infection is sorted.
I've since been on Tamsulosin and my last PSA was 1.8.
I’ve gone as high as 22 I believe or in the 20,s for sure so it could be infections but I definitely haven’t had any symptoms , only time I can remember a infection was 40 yrs ago & the doctor did say you know what you’ve got ( std ) , how do you explain that to wife , but turned out to be a infection , thank god I've since been on Tamsulosin and my last PSA was 1.8.
Apparently Leicester are going to look into why psa is rising after kidney is done so will report back when / if I get a answer
crankedup5 said:
The unforgettable words delivered to me from my consultant will remain with my for the time I have left. Whilst staring at his computer screen ‘ yes you do have cancer and it’s aggressive, the nurse will take you through to the next door room and explain and answer questions you may have’.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
Awful crank , a few kinds words wouldn’t of hurt , thoughts with you The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
Gas1883 said:
I’ve gone as high as 22 I believe or in the 20,s for sure so it could be infections but I definitely haven’t had any symptoms , only time I can remember a infection was 40 yrs ago & the doctor did say you know what you’ve got ( std ) , how do you explain that to wife , but turned out to be a infection , thank god
Apparently Leicester are going to look into why psa is rising after kidney is done so will report back when / if I get a answer
We're exposed to infectious bacteria and viruses on a daily basis but our immune systems deal with them so it's quite possible to have low level infections that are either symptomless or with very mild symptoms which we may not notice. Whether that would be enough to trigger a raised PSA I don't know.Apparently Leicester are going to look into why psa is rising after kidney is done so will report back when / if I get a answer
westberks said:
crankedup5 said:
The unforgettable words delivered to me from my consultant will remain with my for the time I have left. Whilst staring at his computer screen ‘ yes you do have cancer and it’s aggressive, the nurse will take you through to the next door room and explain and answer questions you may have’.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
sorry that you had that level of bedside manner & also for the diagnosis. Fingers crossed that subsequently you've had better treatment in every senseThe nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
Gas1883 said:
crankedup5 said:
The unforgettable words delivered to me from my consultant will remain with my for the time I have left. Whilst staring at his computer screen ‘ yes you do have cancer and it’s aggressive, the nurse will take you through to the next door room and explain and answer questions you may have’.
The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
Awful crank , a few kinds words wouldn’t of hurt , thoughts with you The nurse apologised to me for the consultants statement of fact in such a terse tone.
His day couldn’t have been as bad as my day, could it.
crankedup5 said:
Thanks, we are all in a similar boat of course , but it’s good to talk. Received my treatment package at Addenbrookes, have to say it was exemplary in all senses. My biggest let down has been with my local G.P. who have proven themselves to be utterly useless. From the outset the doctor allowed the receptionist to pass on the diagnosis from my initial blood test ‘all clear no further action required’. That was a receptionist telling me all was well. Thankfully for myself I argued and insisted on a conversation with a doctor. I was referred and the result was as I previously mentioned. Unimaginable that a GP would allow reception staff to have so much authority over matters of life and death! But there it is.
Similar incident with me. Receptionist calls to say the blood test result (PSA 3 monthly) is 'clear'. What do you mean by 'clear'? There's nothing to worry about. Okay but what is the actual reading? Oh, I don't know I'm just the receptionist. Yes but I am always given a figure, last time it was 0.7, is it still the same? I don't have that information. Can you get the doctor to call me with it then please? I'll leave him a message. Never did get the call so had to contact the hospital (which took a lot of chasing) who sent me the results sheet. (It was 0.7).
When I watched a previous series of Surgeons at the Edge of Life from Addenbrookes and Papworth, I thought all the staff and consultants were outstanding. I said to my wife that we should move to Cambridge.....
omniflow said:
Not sure if this applies to all test results, but I'm seeing some quite detailed blood test results, including PSA, in the NHS app.
You can also use it to order repeat prescriptions.
Yes, mine are all there from from my PSA and liver function tests a couple of weeks ago. Loads of results. Looks like it should show history as results are added. You can also use it to order repeat prescriptions.
Not sure it's a good thing. Quack sent a text about the PSA result. but Googling the individual blood and urine results just throws up more questions.
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