Hello Ramuk and Mrs Ramuk and welcome
So sorry you had such a rotten experience with your consultant at your first visit. We had a similar one on our subsequent visit when the consultant told my husband he couldn't have Brachytherapy as he had left it too late and he should have taken the option when it was first offered to him. He was dismissive because he wanted to operate on my husband and John was looking for another treatment so the consultant was a**y with us. He did however refer us to an oncologist who was quite the opposite and told John she thought he was an ideal candidate as did the consultant who did the procedure, and so it proved.
Your PSA of 4.6 and Gleason of 3+3 are pretty good and should give you a number of options for treatment. Are you set on having an operation to remove the cancer?
We have something on the site called The Toolkit which you can download from Publications and you might find the information contained in them very helpful.
I have found the following for you so hope it helps. If you are not happy then tell the hospital so and tell them why.
Second opinion from a different consultant (Ref: http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68)
If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you can discuss this with them directly or with the hospital unit.
You could also contact the hospital's Patient Advice and Liaison Service (PALS) if you have any concerns or complaints.
Find your local PALS
You'll usually need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They'll also be sent any relevant test results or X-rays previously carried out.
This doesn't mean the new consultant will automatically take over your care. If you want to be treated by the new consultant, this needs to be arranged with the doctors and hospital.
How long will I have to wait for a second opinion?
People who ask for a second opinion have already seen a doctor, so they may have to wait. A second opinion with a different consultant will also usually be at a different hospital, which may involve some travelling.
Getting a second opinion may therefore delay any treatment you need. If you have a serious medical condition, you should take this into account when deciding to ask for a second opinion. Ask your doctor whether a delay in starting treatment could be harmful.
Read the answers to more questions about NHS services and treatments.
Further information:
Can I choose where to receive treatment?
Can I demand specific treatment?
How do I change my GP?
GPs
Citizens Advice
Edited by member 07 Oct 2016 at 18:40
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Active surveillance was in my mind when I posted as your scores are pretty low. My husband was on AS for a year before he had permanent seed Brachytherapy.
If you are given the option of AS it does at least give you a bit of breathing space. When this diagnosis is first made it often produces a knee jerk action of "cancer, let's get it out" and that's often the surgeon saying that!!
Not everyone can live with the knowledge that they have a cancer inside them though so it can be a tough decision to make. You are not abandoned but are monitored with regular PSA tests and usually an annual biopsy. That way, any changes can be dealt with promptly but you will have been given the time to suss out all your options.
If you get hold of that Toolkit that I mentioned it will help you when writing a list of questions for your next consultant. I expect your wife will be attending those with you anyway which is good because that's the advice we usually give. Two pairs of ears being better than one for taking in the information given out.
We had to go to PALS following cancellation of consecutive appointments. It was dealt with very quickly and to our satisfaction.
I am sure that because you have your GP's support you will get the matter resolved very quickly. Don't fret, you have plenty of time on your side at the moment.
Sandra
********
Edited by member 09 Oct 2016 at 09:22
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi
This is totally opposite to my experience of NHS.
This is so early stage at Gleason 6. has the detail of the biopsy been explained in a simple and informative way. Obviously I don't know your own medical history. In my opinion, please take plenty of time and use as much resource and help available to make your next decision. Everyone is unique.. One solution does not fit all. I doubt if I remembered much the day when I was told I had cancer. All the very best
User
Hello. We saw the urologist first, he had done the biopsy. He told us the results. Gleason 3+3 then he handed us over to a Macmillan nurse. He did say if it ware him with the same results he would go on active surveillance. The nurse gave us all the leaflets with the different treatments. Told us to read through before our next appointment.
The next appointment a week later was with an oncologist. She went through every treatment doing hand written notes as she went, for us to keep. She didn't really say much about surgery. Just said st 57 my other half was a bit young for surgery, and would be impotent so it was instantly dismissed.
We decided on either radiotherapy or brachytherapy. We were the referred to someone at another hospital to discuss these treatments. The first thing he said was "why do you want treatment?" With a low PSA (3.9) he recommended leaving it and monitoring it. He gave us more info and gave 3 months to go away to make a decision.
3 months later the PSA was 4.9 but consultant was still saying leave it. But the other half decided on brachytherapy. He did say if it was left and monitored that it would need treating eventually as my other half was 57. He said if he were 10 or 15 years older he would probably never need treatment.
So with similar scores to yours, you are probably open to all areas of treatment. Brachytherapy isn't an option if you have a large prostate. The size/volume should be on your paperwork with appointment on. Ours was.
Wishing you all the best. I hope your next appointment goes better.
User
I can relate to this, the first consultation was of a similar ilk. My husband walked out, I managed to persuade him to make another appointment for the urology department. Subsequently we were able to get a ' name' of a different consultant. It was very distressing. . Anyway he asked for a consultation with the named consultant and it was totally different, he listened to his fears about the form of surgery, explained things fully and with great empathy total contrast. My husband felt so much more confident going with him.
In fact, he followed his case throughout even meetin up with him almost eight years later when sadly the cancer returned, and discussing further treatment with him .
If you can, ask for a different consultant,
User
PS be very clear about what proper active surveillance is. Under NHS guidelines, AS includes regular PSA test plus annual MRI scan, annual DRE (finger up bum) and further biopsies if there are concerns that the situation is changing. If all these things aren't done, it is not proper AS but 'watchful waiting' which is much more risky.
AS is a good option for lots of men as long as it is done properly and they are prepared to change plan if necessary.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Oh! My first post disappeared :-(
Ramuk, ask your GP about a referral to an oncologist. In many areas this is done automatically, as sjtb describes above - urologists know about surgery and oncologists know about radiotherapy, brachytherapy etc. Asking for a referral to an oncologist is not the same as asking for a second opinion from another urologist so I would do that first, with the GPs advice.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Yes if my other half had decided to go on active surveillance, the first thing recommended was a bigger biopsy. Not just the 12 needle one, but one with more needles and under general anaesthetic. This would be to check a higher grade cancer had not been missed in the smaller biopsy. Then regular biopsies from then on. He did say how often but I can't remember. Plus PSA every 3 months.
User
Hello. I am not an expert but did I just read you've still got to have an MRI? Surely that comes before you make a decision on treatment? It sounds like you have no rush for treatment anyway. So you have plenty of time to see someone else.
I said earlier that my OH was offered another biopsy if he took up active surveillance. This was offered but not done as he decided to have brachytherapy instead. He has suffered bad side effects, not quite sure why as I can't find anyone else that has suffered the same. (Basically a sort of radiation induced cystitis) But on the plus side his PSA is 0.4 at 22 months after treatment.
There are other on here that have had good brachytherapy experiences.
All the best.
User
As sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.
*******
We can't control the winds - but we can adjust our sails |
User
Originally Posted by: Online Community MemberAs sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.
*******
As far as I am aware an MRI scan is not always 100% accurate. It depends on the clarity of the picture and the expertise of the person viewing it. MRI MAY show whether or not the cancer MAY be contained. It may be interpreted wrongly. Plenty of examples of people who's MRI has been inaccurate or misread. It is another guide to be considered along with other investigative techniques.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Just to clarify, we didn't find a better consultant "based on hearsay" we are fortunate enough to hava a professor of oncology in the family, she did some background work for us, asked around. She was not based at the hospital we went to but she came up with the name of a highly regarded person by his peers and we were so thankful to her.
As I say, we were fortunate but we've had our ups and downs the hospital PALS are a great resource.
Good luck
Show Most Thanked Posts
User
I am really sorry to hear about your experience Ramuk which contrasts starkly with my own. The choice of treatment was left to me but on the basis of full explanations from both a surgeon and an oncologist. I do remember the surgeon actually volunteering the number of procedures he had done and he was able to produce a wealth of stats concerning side effects and the incidence thereof.
I'd be inclined to speak to one of the nurses available on this site as to what you can do regarding a second opinion.
Really hope you get this sorted out and you get the information you need to make an informed decision.
User
Hello Ramuk and Mrs Ramuk and welcome
So sorry you had such a rotten experience with your consultant at your first visit. We had a similar one on our subsequent visit when the consultant told my husband he couldn't have Brachytherapy as he had left it too late and he should have taken the option when it was first offered to him. He was dismissive because he wanted to operate on my husband and John was looking for another treatment so the consultant was a**y with us. He did however refer us to an oncologist who was quite the opposite and told John she thought he was an ideal candidate as did the consultant who did the procedure, and so it proved.
Your PSA of 4.6 and Gleason of 3+3 are pretty good and should give you a number of options for treatment. Are you set on having an operation to remove the cancer?
We have something on the site called The Toolkit which you can download from Publications and you might find the information contained in them very helpful.
I have found the following for you so hope it helps. If you are not happy then tell the hospital so and tell them why.
Second opinion from a different consultant (Ref: http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68)
If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you can discuss this with them directly or with the hospital unit.
You could also contact the hospital's Patient Advice and Liaison Service (PALS) if you have any concerns or complaints.
Find your local PALS
You'll usually need to go back to your GP and ask them to refer you again. If your GP agrees to refer you to a new consultant, the consultant will be told that this is your second opinion. They'll also be sent any relevant test results or X-rays previously carried out.
This doesn't mean the new consultant will automatically take over your care. If you want to be treated by the new consultant, this needs to be arranged with the doctors and hospital.
How long will I have to wait for a second opinion?
People who ask for a second opinion have already seen a doctor, so they may have to wait. A second opinion with a different consultant will also usually be at a different hospital, which may involve some travelling.
Getting a second opinion may therefore delay any treatment you need. If you have a serious medical condition, you should take this into account when deciding to ask for a second opinion. Ask your doctor whether a delay in starting treatment could be harmful.
Read the answers to more questions about NHS services and treatments.
Further information:
Can I choose where to receive treatment?
Can I demand specific treatment?
How do I change my GP?
GPs
Citizens Advice
Edited by member 07 Oct 2016 at 18:40
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi
Thanks for your swift reply.
My wife is trying to sort out something with the hospital...but...it is like walking on egg shells. We want to be seen by another consultant...so we are going to our GP and ask for a referral. If our hospital won't agree to this...then we are going to ask to go to another hospital.
Once again...thanks for your imput.
Did you have the surgery? How did it go?
Regards.
User
Hi
Many thanks for all the information.
After we came home from the hospital my wife rang the PALS and left a message detailing all that had gone on in the consulting room. She spoke to them this afternoon and was advised to make a formal complaint...which she/we will do.
Plus, we spoke to the nurse who was in the room with us....we got the impression that she was very uncomfortable with the consultants behaviour and attitude towards us. She is going to speak to another consultant at the hospital to see if he will be willing to see me.
Plus, we rang our GP...he was horrified to hear what had happened...we are having an appointment with him on Monday.
Trouble is...you need support when something like this happens...not all this hassle from the NHS.
I was thinking about going on Active Survelliance...but the consultant gave me very little faith regarding this option. He seemed vague about the process.
Once again many thanks and will certainly look at those links.
Regards.
User
Active surveillance was in my mind when I posted as your scores are pretty low. My husband was on AS for a year before he had permanent seed Brachytherapy.
If you are given the option of AS it does at least give you a bit of breathing space. When this diagnosis is first made it often produces a knee jerk action of "cancer, let's get it out" and that's often the surgeon saying that!!
Not everyone can live with the knowledge that they have a cancer inside them though so it can be a tough decision to make. You are not abandoned but are monitored with regular PSA tests and usually an annual biopsy. That way, any changes can be dealt with promptly but you will have been given the time to suss out all your options.
If you get hold of that Toolkit that I mentioned it will help you when writing a list of questions for your next consultant. I expect your wife will be attending those with you anyway which is good because that's the advice we usually give. Two pairs of ears being better than one for taking in the information given out.
We had to go to PALS following cancellation of consecutive appointments. It was dealt with very quickly and to our satisfaction.
I am sure that because you have your GP's support you will get the matter resolved very quickly. Don't fret, you have plenty of time on your side at the moment.
Sandra
********
Edited by member 09 Oct 2016 at 09:22
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi
This is totally opposite to my experience of NHS.
This is so early stage at Gleason 6. has the detail of the biopsy been explained in a simple and informative way. Obviously I don't know your own medical history. In my opinion, please take plenty of time and use as much resource and help available to make your next decision. Everyone is unique.. One solution does not fit all. I doubt if I remembered much the day when I was told I had cancer. All the very best
User
Hello. We saw the urologist first, he had done the biopsy. He told us the results. Gleason 3+3 then he handed us over to a Macmillan nurse. He did say if it ware him with the same results he would go on active surveillance. The nurse gave us all the leaflets with the different treatments. Told us to read through before our next appointment.
The next appointment a week later was with an oncologist. She went through every treatment doing hand written notes as she went, for us to keep. She didn't really say much about surgery. Just said st 57 my other half was a bit young for surgery, and would be impotent so it was instantly dismissed.
We decided on either radiotherapy or brachytherapy. We were the referred to someone at another hospital to discuss these treatments. The first thing he said was "why do you want treatment?" With a low PSA (3.9) he recommended leaving it and monitoring it. He gave us more info and gave 3 months to go away to make a decision.
3 months later the PSA was 4.9 but consultant was still saying leave it. But the other half decided on brachytherapy. He did say if it was left and monitored that it would need treating eventually as my other half was 57. He said if he were 10 or 15 years older he would probably never need treatment.
So with similar scores to yours, you are probably open to all areas of treatment. Brachytherapy isn't an option if you have a large prostate. The size/volume should be on your paperwork with appointment on. Ours was.
Wishing you all the best. I hope your next appointment goes better.
User
I can relate to this, the first consultation was of a similar ilk. My husband walked out, I managed to persuade him to make another appointment for the urology department. Subsequently we were able to get a ' name' of a different consultant. It was very distressing. . Anyway he asked for a consultation with the named consultant and it was totally different, he listened to his fears about the form of surgery, explained things fully and with great empathy total contrast. My husband felt so much more confident going with him.
In fact, he followed his case throughout even meetin up with him almost eight years later when sadly the cancer returned, and discussing further treatment with him .
If you can, ask for a different consultant,
User
PS be very clear about what proper active surveillance is. Under NHS guidelines, AS includes regular PSA test plus annual MRI scan, annual DRE (finger up bum) and further biopsies if there are concerns that the situation is changing. If all these things aren't done, it is not proper AS but 'watchful waiting' which is much more risky.
AS is a good option for lots of men as long as it is done properly and they are prepared to change plan if necessary.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Oh! My first post disappeared :-(
Ramuk, ask your GP about a referral to an oncologist. In many areas this is done automatically, as sjtb describes above - urologists know about surgery and oncologists know about radiotherapy, brachytherapy etc. Asking for a referral to an oncologist is not the same as asking for a second opinion from another urologist so I would do that first, with the GPs advice.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Yes if my other half had decided to go on active surveillance, the first thing recommended was a bigger biopsy. Not just the 12 needle one, but one with more needles and under general anaesthetic. This would be to check a higher grade cancer had not been missed in the smaller biopsy. Then regular biopsies from then on. He did say how often but I can't remember. Plus PSA every 3 months.
User
Originally Posted by: Online Community MemberHi
This is totally opposite to my experience of NHS.
This is so early stage at Gleason 6. has the detail of the biopsy been explained in a simple and informative way. Obviously I don't know your own medical history. In my opinion, please take plenty of time and use as much resource and help available to make your next decision. Everyone is unique.. One solution does not fit all. I doubt if I remembered much the day when I was told I had cancer. All the very best
Hi
Thanks for message.
The consultant never once explained the results of my biopsy. My wife had to ask him to tell us the results!!! Big issues...he wants me to ring the hospital and tell them what treatment I want!!! I saw the consultant on Thursday. When my wife asked why...we were told it was to do with meeting targets!
User
Originally Posted by: Online Community MemberI can relate to this, the first consultation was of a similar ilk. My husband walked out, I managed to persuade him to make another appointment for the urology department. Subsequently we were able to get a ' name' of a different consultant. It was very distressing. . Anyway he asked for a consultation with the named consultant and it was totally different, he listened to his fears about the form of surgery, explained things fully and with great empathy total contrast. My husband felt so much more confident going with him.
In fact, he followed his case throughout even meetin up with him almost eight years later when sadly the cancer returned, and discussing further treatment with him .
If you can, ask for a different consultant,
Hi
Thanks for message.
We wanted to walk out of my husband's appointment but felt it might go against him regarding his treatment. I have done lots of research and I have requested a named consultant. We have also implied - to our GP - that we want him to be treated outside our county if we can not have the named consultant. All very distressing...when your mind and energies should be concentrating on battling against the disease...NOT the treatment on offer or the NHS.
User
Originally Posted by: Online Community MemberHello. We saw the urologist first, he had done the biopsy. He told us the results. Gleason 3+3 then he handed us over to a Macmillan nurse. He did say if it ware him with the same results he would go on active surveillance. The nurse gave us all the leaflets with the different treatments. Told us to read through before our next appointment.
The next appointment a week later was with an oncologist. She went through every treatment doing hand written notes as she went, for us to keep. She didn't really say much about surgery. Just said st 57 my other half was a bit young for surgery, and would be impotent so it was instantly dismissed.
We decided on either radiotherapy or brachytherapy. We were the referred to someone at another hospital to discuss these treatments. The first thing he said was "why do you want treatment?" With a low PSA (3.9) he recommended leaving it and monitoring it. He gave us more info and gave 3 months to go away to make a decision.
3 months later the PSA was 4.9 but consultant was still saying leave it. But the other half decided on brachytherapy. He did say if it was left and monitored that it would need treating eventually as my other half was 57. He said if he were 10 or 15 years older he would probably never need treatment.
So with similar scores to yours, you are probably open to all areas of treatment. Brachytherapy isn't an option if you have a large prostate. The size/volume should be on your paperwork with appointment on. Ours was.
Wishing you all the best. I hope your next appointment goes better.
Hi
Many thanks for the message.
My husbands consultant could only talk about Active Survelliance - briefly and with no real content. He seemed keen for my husband to have surgery! No other options were mentioned and because we were so dissatisfied with the whole experience we wanted the appointment time to come to an end! Pressure was put on us to make a decision by Monday! We only saw the consultant on Thursday afternoon!!!!
Regards
User
Originally Posted by: Online Community MemberYes if my other half had decided to go on active surveillance, the first thing recommended was a bigger biopsy. Not just the 12 needle one, but one with more needles and under general anaesthetic. This would be to check a higher grade cancer had not been missed in the smaller biopsy. Then regular biopsies from then on. He did say how often but I can't remember. Plus PSA every 3 months.
Hi
Many thanks for your message and information.
Really interested that your partner was offered a bigger biopsy. This was never mentioned by our consultant. All he said was...if you did go onto Active Survellience there was no telling what Cancer might be lurking in the part of the Prostate missed by the earlier biopsy. He put the Fear of God into us!!!
Is your partner still on Active Survellience? How long?
User
Originally Posted by: Online Community MemberPS be very clear about what proper active surveillance is. Under NHS guidelines, AS includes regular PSA test plus annual MRI scan, annual DRE (finger up bum) and further biopsies if there are concerns that the situation is changing. If all these things aren't done, it is not proper AS but 'watchful waiting' which is much more risky.
AS is a good option for lots of men as long as it is done properly and they are prepared to change plan if necessary.
Hi
Just got a message from another contributor on this message board about her partner - who went on Active Survellience BUT had a bigger biopsy to rule out if Cancer was lurking and had been missed by the first biopsy. Is this second/bigger biopsy carried our as a requirement before one goes on Active Survellience? The consultant seemed very (too much so...) casual about Active Survellience. Felt as if it was the easy and lazy option offered by the hospital.
Regards.
User
Originally Posted by: Online Community MemberHello. We saw the urologist first, he had done the biopsy. He told us the results. Gleason 3+3 then he handed us over to a Macmillan nurse. He did say if it ware him with the same results he would go on active surveillance. The nurse gave us all the leaflets with the different treatments. Told us to read through before our next appointment.
The next appointment a week later was with an oncologist. She went through every treatment doing hand written notes as she went, for us to keep. She didn't really say much about surgery. Just said st 57 my other half was a bit young for surgery, and would be impotent so it was instantly dismissed.
We decided on either radiotherapy or brachytherapy. We were the referred to someone at another hospital to discuss these treatments. The first thing he said was "why do you want treatment?" With a low PSA (3.9) he recommended leaving it and monitoring it. He gave us more info and gave 3 months to go away to make a decision.
3 months later the PSA was 4.9 but consultant was still saying leave it. But the other half decided on brachytherapy. He did say if it was left and monitored that it would need treating eventually as my other half was 57. He said if he were 10 or 15 years older he would probably never need treatment.
So with similar scores to yours, you are probably open to all areas of treatment. Brachytherapy isn't an option if you have a large prostate. The size/volume should be on your paperwork with appointment on. Ours was.
Wishing you all the best. I hope your next appointment goes better.
Hi
Many thanks for all your information.
We were told on Thursday that my husband had to make a decision by Monday!!!!!!! Could not believe we had only 3 full days to think about everything. All to do with the hospital meeting its targets! We were told that by the specialist nurse! We are not making a decision or ringing the hospital...hopefully it might flag up something and someone might ask us some questions!
Did your partner have Brachytherapy ? If so...how did it go? Side effects?
Our hospital does not offer this treatment...the consultant NEVER even mentioned this as an option. We have done some research...but not sure if it actually gets rid of the Cancer or just controls it.
Regards
User
Originally Posted by: Online Community MemberOriginally Posted by: Online Community MemberI can relate to this, the first consultation was of a similar ilk. My husband walked out, I managed to persuade him to make another appointment for the urology department. Subsequently we were able to get a ' name' of a different consultant. It was very distressing. . Anyway he asked for a consultation with the named consultant and it was totally different, he listened to his fears about the form of surgery, explained things fully and with great empathy total contrast. My husband felt so much more confident going with him.
In fact, he followed his case throughout even meetin up with him almost eight years later when sadly the cancer returned, and discussing further treatment with him .
If you can, ask for a different consultant,
Hi
Thanks for message.
We wanted to walk out of my husband's appointment but felt it might go against him regarding his treatment. I have done lots of research and I have requested a named consultant. We have also implied - to our GP - that we want him to be treated outside our county if we can not have the named consultant. All very distressing...when your mind and energies should be concentrating on battling against the disease...NOT the treatment on offer or the NHS.
This is all very new to you but I think it may be a mistake to insist on a particular consultant based on what you have read online or someone else's story. Some of the consultants have huge marketing machines to make them look amazing but when you talk to their real patients the story is not so good. As I said before, it would be more sensible to add to see the hospital oncologist first to talk about active surveillance and other treatments. Then if you are still interested in surgery, you could ask for a referral for a second opinion.
The hospital shouldn't be putting pressure on you to make a quick decision - their target is to treat you within a set number of days after you have made your treatment decision NOT a set number of days after your diagnosis.
Edited by member 08 Oct 2016 at 14:51
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Hello again Ramuk
I know you were asking the question of sjtb but as far as Brachytherapy goes, our hospital didn't do it either but recommended us to The Royal London where they DID do Brachy and were happy for John to have it done as he fitted the criteria
It is not designed to "contain" prostate cancer but to cure it. There are two kinds. Permanent seeds implanted and left and they do their job and eventually, although still inside you, the radio part eventually dies.
The other is HD Brachytherapy, where a rod is inserted into the anus and targets the prostate. Both are designed to cure.
As with all treatments there are possible side effects
****
PS you should NEVER feel or be pressured into making a decision. If the hospital has targets to be met that is their concern and not yours. Yours (and the hospital actually) is to make sure that whatever treatment you undertake it is the one that YOU have researched and understood is the best option for you. This is going to change your life forever, no matter what the eventual outcome so be absolutely sure that you have researched your facts. You will not be able to do that from a Thursday to a Monday. Absolute rubbish and a dangerous attitude for the hospital to take.
With the PSA and Gleason that you have you will have time to make an informed decision so please do not rush this. None of us can say "OH take this route, it worked brilliantly for me and will for you too " because that isn't a given. What works for one doesn't always work for another. You can only do your best to make a decision based on all the facts available and 5 days isn't going to allow you to do that.
Sorry, I'm not very helpful I know, but I just want you to take the time to view all your options without being rushed into a choice based purely on a set of figures that the hospital has to produce on some piece of paper that is only of interest to the bureaucrats who will read it.
*******
Edited by member 09 Oct 2016 at 09:25
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
R
How did you receive your diagnosis on the 21st September, was it at the same hospital of was it at a private hospital ? Have you had any scans or MRI.
I know hospitals operate in different ways, my diagnosis was given to me a week after the biopsy by my consultant and I was given the choice's of treatments subject to scan results, then I was seen by a urology nurse who gave me reams of info and we had a 40 minute chat about most things prostate. I then returned to the hospital about 2-3 weeks later after scans and gave them my preferred choice of treatment.
Thanks Chris
User
Originally Posted by: Online Community MemberR
How did you receive your diagnosis on the 21st September, was it at the same hospital of was it at a private hospital ? Have you had any scans or MRI.
I know hospitals operate in different ways, my diagnosis was given to me a week after the biopsy by my consultantand I was given the choice's of treatments subject to scan results, then I was seen by a urologynurse who gave me reams of info and we had a 40 minute chat aboutmostthings prostate. I then returned to the hospital about 2-3 weeks later after scansand gave them my preferred choice of treatment.
Thanks Chris
Hi
Thanks for message.
I received my diagnosis by a specialist nurse. Had a chat with her for about 20 minutes. She gave us a very quick rundown of my biopsy. Did not take much in as I was still trying to accept that I had Prostate cancer.
Had an appointment with the consultant this Thursday.....dreadful experience. Did not give me any details about my biopsy test. All he offered was Active Survellience or surgery. Told by him and the nurse that I had to make a decision by Monday!!! 3 full days to make one of the most important decisions in my life!
He made an appointment for me to have an MRI scan.
Am going back to my GP to ask to be refered to another consultant.
Have been advised by Patiient Advisory Service to make an official complaint.
What treatment did you finally opt for?
Hope it went well.
Regards.
User
Hello. I am not an expert but did I just read you've still got to have an MRI? Surely that comes before you make a decision on treatment? It sounds like you have no rush for treatment anyway. So you have plenty of time to see someone else.
I said earlier that my OH was offered another biopsy if he took up active surveillance. This was offered but not done as he decided to have brachytherapy instead. He has suffered bad side effects, not quite sure why as I can't find anyone else that has suffered the same. (Basically a sort of radiation induced cystitis) But on the plus side his PSA is 0.4 at 22 months after treatment.
There are other on here that have had good brachytherapy experiences.
All the best.
User
As sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.
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We can't control the winds - but we can adjust our sails |
User
Originally Posted by: Online Community MemberAs sjtb says you should have had an MRI. It will show if the cancer is contained and if it is, given the other scores, you should have a number of options available to to you.
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As far as I am aware an MRI scan is not always 100% accurate. It depends on the clarity of the picture and the expertise of the person viewing it. MRI MAY show whether or not the cancer MAY be contained. It may be interpreted wrongly. Plenty of examples of people who's MRI has been inaccurate or misread. It is another guide to be considered along with other investigative techniques.
dave
All we can do - is do all that we can. So, do all you can to help yourself, then make the best of your time. :-) I am the statistic. |
User
Just to clarify, we didn't find a better consultant "based on hearsay" we are fortunate enough to hava a professor of oncology in the family, she did some background work for us, asked around. She was not based at the hospital we went to but she came up with the name of a highly regarded person by his peers and we were so thankful to her.
As I say, we were fortunate but we've had our ups and downs the hospital PALS are a great resource.
Good luck
User
Originally Posted by: Online Community MemberJust to clarify, we didn't find a better consultant "based on hearsay" we are fortunate enough to hava a professor of oncology in the family, she did some background work for us, asked around. She was not based at the hospital we went to but she came up with the name of a highly regarded person by his peers and we were so thankful to her.
As I say, we were fortunate but we've had our ups and downs the hospital PALS are a great resource.
Good luck
Hi
Thanks for message.
We have been doing lots and lots of research. Have 'found' a consultant in another hospital who, according to the facts/figures has complted more robotic procedures and - by chance - a friend of my brothers had him as his surgeon. He was very, very satisfied with him and said he would highly recommend him. Issue is...we have got to get our Commissioning Authority to agree to us being refered to the other hospital in another Commissioning Authority. Just seems so sad that one is battling with cancer...and at the same time battling with the NHS to get the best treatment possible.
Regards.
User
Blueytruey my comment was in response to Ramuk not you - it seems a bit early in the process for him to be deciding precisely who he wants before he has spoken to the GP tomorrow.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi
Hope things are progressing a lot better. AS is perfectly fine . The key is to keep control and ensure as you are doing get facts. Keep asking questions and if possible keep notes. Ie see Alan excellent post. Thousands of men could have Gleasson 6 or less.. and not know and never know.
I was treating very well by nhs. However the mind set tends to be if you don't ask. Info isn't voluntered.
Only in hindsight do you realise, that even agressive pc tumours don't seem like others cancers to require urgent urgent attention. Ie 2 to 3 months seems a reasonable time for you and partner to take the emotional impact on board. AS will be part of a journey. Some men I know at the extreme may just carry on and ignore and do absolutely nothing. Everyone is unique. Partners and family can put undue pressure, trying to help. My mother in law is very good, however I don't think see can understand the complexity and unknown direction pc may take. Thanks for sharing your experiences. . There should be a local support group that meet in your area, a wealth of knowledge. ...
Edited by member 13 Oct 2016 at 17:23
| Reason: Not specified
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