Difficult for you Steamboat. I was sorry to read about your wife, it must have been a dreadful time for you both.
Is this the same GP surgery that dealt with your wife's health and referrals? If so I would have expected them to be more sympathetic towards your concerns.
I can understand that your GP wouldn't want to go over the head of the expert by referring you for a private MRI
although a) if it shows nothing your consultant doesn't need to know you had one since it's private and the results would presumably go back to the GP and b) if it shows something then the consultant will have been proved wrong.
Consultants in their rarefied boxes may well know what is best for you but unless that is communicated to you with the whys and wherefores you will worry.
Often it is such a simple explanation they probably think it's obvious. ie "I'm not worried so neither should you be"
Perhaps if you asked to see an oncologist you would get a second opinion that way and would still be under the same hospital.
I know two weeks seems such a long time to wait but at least then you should be able to ask some relevant questions based on what you've gleaned from this site.
I'm sure that others will have suggestions for questions to ask.
I did wonder whether you could demand a second opinion so looked how you go about it and I found the following. It might help.
___________________________________________________________________________________________________
NHS CHOICES - taken from the internet
You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor).
Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one.
For more information, see your choices in the NHS.
Do you need a second opinion?
Before asking for a second opinion, it’s worth asking your GP or consultant to go over your diagnosis and explain anything you don’t understand.
If you’re unhappy with your diagnosis or would like to consider a different course of treatment, discuss this with them. Your GP or consultant will be happy to explain things and, in many cases, there may be no need for a second opinion.
Can anyone else ask for a second opinion?
Your family or carer can also ask for a second opinion on your behalf, but only with your consent. If someone requests a second opinion on your behalf, they should have all the information about your illness or condition, and check they understand it thoroughly.
Sometimes a GP or consultant may ask a colleague to provide a second opinion. For example, doctors may ask their colleagues about a complicated case.
Second opinion from a different GP
If you would like a second opinion after receiving advice from your GP, you can ask them to refer you to another GP.
Alternatively, you may consider asking to see a different GP at your surgery, if you’re registered at a surgery with more than one GP, or changing to a different GP surgery. For more information, see choosing a GP.
Second opinion from a different consultant
If you would like a second opinion after seeing a consultant (a senior medical doctor who specialises in a particular field of medicine), you 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 will also be sent any relevant test results or X-rays previously carried out.
This does not mean that the new consultant will automatically take over your care. If you want to be treated by the new consultant, this will need 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 that 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:
We can't control the winds - but we can adjust our sails |
User
Brian,
Some GP's are more helpful than others. We have had men on this forum refused an initial PSA test by their GP yet alone be referred for a second opinion. But let's hope your GP is more forthcoming, if not alternatives have been suggested. You could ask your GP for the name of somebody he recommends for a second opinion or do what I did and find somebody or a well regarded hospital to be referred to. You don't have to have your treatment at the hospital where your second opinion practices. However, before you go down this route I would question your present consultant more closely - it could result in a change of mind about the MRI scan.
You shouldn't need to pay for an MRI scan. Men should be told what their options are. If one of the options is radiation and that was to be your choice, you would need an MRI scan anyway.
Barry |
User
Sorry for the long absence from the site, been on my travels in my motorhome before the weather gets bad.
Last consultants visit was the 17th of last month.
Treatment of any sort was not considered an option my PSA is unchanged at 9.8 and the consultant said because of that "I am not ringing any of his alarm bells".
So back on to the six month blood tests and appointments schedule until further notice, or something happens.
With the idea of enjoying life while you have it I have bought another motorbike!
Thanks for all the input from all the above people, and may I wish you all a Happy Christmas.
Brian
User
Hi Brian,
I am a little confused. You originally reported that you had been diagnosed with PCa with a PSA of 7.4 and that you had been offered RT but were on Watchful Waiting/ (Active Surveillance). You subsequently posted on 30th Oct that your Gleason was seen as 4+3=7, (the top end of intermediate grade). Your PSA has now risen to 9.8 but you say treatment of any sort was not considered. Was the offer of RT mentioned in your first post conditional on your PSA progressing and rising to a certain level and if so what is this level? Also, there is no mention of staging, perhaps due to lack of MRI. A slowly rising PSA by itself is not always an entirely reliable indicator of progression and I would seek assurance from your consultant that your cancer is not breaching the capsule. An MRI could be helpful for this. It does not follow that similar stats for two men require the same course of action but I mention that when first diagnosed my Gleason was 3+4=7, ie there was less advanced cancer in the graded cores than yours although my PSA was higher at 17. The staging was T2A, which would have been operable. However, following an MRI scan the staging was upgraded to T3A, showing the cancer breaching the Prostate and my surgeon did not want to operate, so I had missed that option.
It would be helpful to forum members if you would show the main stats of your diagnosis under your profile and update with significant follow ups, as this serves as a ready reference rather than having to plow through a thread to extract relevant details.
Trust you had an enjoyable holiday and wish you safe and enjoyable biking.
Barry |
User
Barry
I have basically given you all the information that I have been given. My next review is mid March 2016 with a further blood test week prior to that.
I have mentioned and requested (not demanded) an MRI scan but it was deemed not necessary by the consultant this time, and also the one I had seen previously six months before.
I don't know what else I can do if I get stonewalled at this level, after all these people are the experts, aren't they?
My Gleason level of 4+3 =7 was as a result of a biopsy done in January 2015 when my PSA was 7.4. My prostates size I am told is 86 and therefore too large for seeding, so RT is the only course of treatment available I am told. My Consultant ensures me that I am "not ringing his alarm bells" and so the 6 month regime is still viable, he says.
A previous consultant, whilst my regular one was away said " if you get fed up with it we can start RT anytime you like".
I do not know exactly what he meant by "it" because my lifestyle is normal for a 77 year old, I am not in pain, incontinent, or in anyway debilitated by the illness. So why would I decide to undertake a treatment that has so many unwelcome possible side effects?
I have no information on staging it has never been mentioned I did ask during the last consultation if there was any way of knowing if the cancer was still contained, didn't get a response to that, other than " you will possibly, and most likely have to find something else to die from".
User
Brian,
Nobody on this forum would suggest you have treatment and all that may entail, although many of us believe it is a good idea to find out where one stands and from what you say I wonder if you do fully. I would just say that feeling well and being fit is not necessarily an indication of how advanced PCa is and most men don't wish to miss the best opportunity of successful treatment should this situation arise and maybe pass. If you and your consultant feel AS is working fine for you and this may well be the case, long may it continue to do so.
Consultants may be experts, some more so that others but they sometimes come to different conclusions as I can personally testify. In my present situation Consultants at two of the UK's leading hospitals have read my same scans differently, one suggesting I have cancer in an iliac node and recommending I start HT immediately, the other being unconvinced there is cancer and recommending I don't start HT unless my PSA rises significantly. I obtained an opinion from a 3rd hospital who inclined to the latter view and I am following this.
Barry |
User
Manwith, it is rare but this time I think you are missing the point. Apparently, Steamboat wants to continue with AS - he doesn't want RT - the consultant is therefore offering the usual AS regime of 6 monthly PSA and annual scan. Why rock the boat or befuddle him?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Lyn
I am well aware that Steamboat said at the outset concerning RT " ......I am not keen to try it" and nowhere in any of my posts in this thread have I suggested he should have this or any other treatment! I have read this thread through 3 times and feel this is abundantly clear.
With respect, I think you are missing the point which I am making which I consider is relevant. Steamboat made no mention anywhere of having had an MRI scan and indeed posted on 3rd Nov that his Consultant said one was not necessary so you are only assuming he will have one annually. He doesn't know his staging. His cancer may be indolent and I hope it is but if it is more advanced than he is apparently aware, or becomes so, treatment which may include RT among other possibilities may be considered appropriate sooner or later and faced with such a possibility he would have to decide which option(s) open to him, if any, he would be prepared to go with.
Really can't understand why you suggest I am rocking the boat or befuddling him where in summary I am only suggesting he finds out how he stands so he can act in a timely way in need if he so chooses. There have been men that have been on AS but have 'missed the opportunity of most successful treatment' and I hope that Steamboat will not be one of them. In his post of 31st October Steamboat posted that he had lost his wife to cancer of which she had had several kinds all of which had been misdiagnosed. So not everything consultants say is right and I repeat it is prudent to keep a close check on how one stands.
Barry |
User
.
Whoa folks
I don't want to start a row here of all places.
Just re- state my questions and my situation.
If and it is a big if,
I had not decided to upgrade my UK driving licence as I passed the age of 70 I would not actually know that I have Prostate Cancer.
I do not think that I have the classic symptoms as mentioned by my consultants (various} like frequent urination urgency, feeling my bladder was not fully emptied, and the other symptoms I am sure you know about.
So when one of the consultants says if I am fed up with it at any time I am confused as to what "it" actually is.
This is primarily because I do not appear to have these symptoms why should undertake EBRT treatment which they are offering if I am fed up with "it". When " it" does not seem to have manifested itself?.
I would like one however for peace of mind if the "experts" say that I do have PC.............. and the biopsy says I do have PC.
Then is it unreasonable to request an MRI to ascertain whether it is contained within the gland or has spread ?
It appears from the reactions that I am getting at the urology department that it is.
That contradicts what I am reading in the media and on the net.
It is where I am at the moment, in limbo it seems.
User
Not unreasonable in my opinion (for what that's worth) Steamboat.
Perhaps present the request as a desire to gain as much info before you commit to the treatment path.
They'll want to save money where they can, that's not unreasonable given the strain in the NHS, and as I see it they are saying we know you have cancer and we know how far it's travelled and you don't need to worry yet.
That's fine as far as it goes but it does still leave you in limbo as you say. Did your results ever go to a Multi discipline team. Thinking about it probably not as they are saying RT is the only option.
If it were my man I would be saying we need an MRI for peace of mind as the not knowing is causing worry which is having an effect on our quality of life.
Consultants aren't always good at reassuring their patients because they know what they are talking about
Edited by member 21 Dec 2015 at 08:59
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Hi Barry, cross purposes - I will message you. Steamboat has previously said that he had an MRI before so my interpretation was that the uro is saying he doesn't need another one. Perhaps I have misunderstood.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I have never said that I have had a previous MRI scan, I had requested one previously but had been denied it!
User
The Daily Mail 22nd Dec should have been called the "prostate edition". Three separate articles about prostate cancer.
The most interesting was that 10,000 more men will be allowed to have Docetaxel as it will be prescribed in England for the disease, it is already used in Scotland.
I would not hold your breath though once NICE find how much it costs.
NICE always seems to know the cost of everything, but not the value to the patient
User
Oh I am really sorry, I must have misread something. How did they know your prostate gland was 85cc without a scan?
ManwithPC, profuse apologies 😕
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Lyn,
You may well have assumed that there was an MRI as part of diagnosis because of the size of the Prostate having been given which is the usual way of determining. I also wondered how this could be calculated so specifically without an MRI. Apparently, the size and weight can be calculated by x-ray but we don't know whether Brian had one at some stage or if it was arrived at by another means, maybe ultra sound scan given for some reason, although Brian would likely have said so if such was the case.
Brian,
When your consultant offered EBRT if you were fed up with 'it', he/she would have been aware that you were were not experiencing the symptoms and adverse effects often associated with PCa. So it rather looks like the 'it' was the uncertainty of how the PCa would develop and/or how you are coping with the monitoring of WW or AS. However, from what you say, the absence of these effects means you do not wish to have major treatment soon unless it is advisable, which is understandable. An MRI scan could well provide you and your consultant with a better idea of where you are and as you say give you greater peace of mind, perhaps in the knowledge that treatment could be deferred for quite a time. Up to you how hard you press an unhelpful GP to refer you for another opinion. Alternatively, you could write to the consultant asking for a written answer as to why you were being refused an MRI, perhaps first having a word with the hospital PALS people - maybe worth a shot!
Barry |
User
My initial visit to a Urologist after a PSA of 15 , involved a DRE followed by an ultrasound scan. He took measurements of cubic capacity using that. He also made me express a quantity of semen when removing the device , as I had agreed to take part in a trial looking for a better marker than PSA
Chris
If life gives you lemons , then make lemonade |
User
Just had another blood test and another refusal of an MRI scan .
Blood test result
Told not to worry no change in PSA
Brian
aka Steamboat
User
Sorry that you still can't get it all sorted Brian, what a nuisance.
If you were, as you previously stated, worried enough to consider paying privately then the situation must to some extent be playing on your mind.
Quite normal in that respect, it would certainly play on mine if my John had such vague comments said to him.
Given the high (9.8) PSA, whether it's changed or not and the Gleason of 4+3 and 3+4 I cannot understand why you are being refused the reassurance an MRI could give you.
At least you would be able to make an informed decision based on the result.
I realise that you do not want to go down the EBRT, or indeed any, treatment path if it isn't absolutely necessary and good for you but for the sake of being a little forceful, either with the GP or hospital, you may never know whether early intervention would have helped you if at some stage in the future this cancer really does come and bite you on the bum !
Could you not ask for a second opinion,preferably at another hospital. I know I posted earlier that it isn't an automatic right for any patient but this seems to be getting into the realms of stupidity.
Good luck anyway
We can't control the winds - but we can adjust our sails |