From MRI ... to Biopsy .... to Treatment

Hi Marcus! Sorry to hear about what you are going through and share your pain. 

Uroboros is quite right with many of his comments! I initially didn't get a copy of the report for my MRI. I had the bone scan the whole works. No feedback other than a verbal  confirmation that the cancer hadn't spread to my bones. 

Getting a copy of reports is not only unnecessarily long it's full of unnecessary information that patients won't be able to understand. You get a disk with your scans but unless your Dr Zhivago, you won't know what your looking at. Which could be the objective :-)??? 

Dependant on your age an Op is not always the best choice unless the surgeons categorically tell you it's the only option. 

Get as much info as possible and try to SEE the results with the surgeon first. 

Good luck and I wish you the best. 

P

PBADS,

I get copies of letters and scans as I am fed up of going to appointments where the Doc either can't get  my scans or information to load on his computer or they have not been sent relative information about me.  This has happened frequently - even with my prostate cancer.  I went to see the radiologist and she had no information and didn't know I had had a TURP.  Infact considering I waited over a month to see her she had very little information about me.  Also my wife had a letter from a respiratory consultant sent to her GP telling them to change her medication and that letter sat on her file for 5 years without being actioned making her condition worse and nearly ending up with her losing part of her lung until she found a specialist hundreds of miles away where she could get treated with medication that would counteract the damage done. We actually have had to give a consultant the disc with a PET Scan on as he couldn't get the PET Scan to show correctly using the network but the disc we gave him loaded fine.  I have also had blood test results not acted upon and all sorts over the last 30 years so that is why I get copies of letters and test results copied to me.  My neighbour had problems with her eyes because a letter she actually took the few yards down the road from her optician to her Doctor raising concerns about the condition of her eye also was not acted on.  So, now when I am given anything to take to my GP from either a hospital or optician I take it with me to an appointment as that is the only way I will know the Doc has received and read it.  I do not try and understand these reports and letters and I rarely look at the discs as can't make anything out of the ones I have had a look at  but make a routine appointment with the Doc if there is anything I can't understand and think is possibly important but doesn't seem to have been acted upon.  I never google conditions but I do look up the phraseology in a medical dictionary  on line.  All these experiences have been with different surgeries too so I can't blame just the one surgery.

Whilst I do not want to disregard anything that could, or could not be there, having gone through two years of treatment for an unrelated Cancer I am very lucky to be in a postcode area with one of the best teaching Hospitals in the UK, both for Head and Neck and Uro -Encology.

Because of my past history I had various bloods, internals, Full upper and Lower MRI body scans and the Transperinial, I get up once a night for the loo, have no difficulty going, but do take slightly longer to start and finish lets say ? 

My PSA was 6.6 and the prostrate gland was measured at 45ml.

The various MRI scans showed all of my pelvic region and indeed up to just below my chest, the small area is as they say at the front of my prostrate, but in their words "very small and not of an immediate concern" hence why they wish to monitor and do further tests i guess ?

Like all of  us, a comprehensive diagnosis with a treatment or action plan would have been preferable, but my consultant who know's my history and has looked after me brilliantly these last two and a half years ended his letter with this and I quote : " Your Biopsies have found no evidence of malignancy, I recommend you have a repeat PSA  in three months time, and if it remains elevated then we shall consider further Biopsies at that time"

So ..... I simply await and get on with life, everything i have seen and heard so far i take a little comfort in, BUT, I am also realistic and that does not mean there is not something as yet undiscovered !

We shall see ......

Thanks to all for their comments.

Marcus  

It's true that scan and x ray results may contain information that isn't "necessary" for you to know, but unless you see the reports you can't make that judgment. 

Additionally, doctors don't always act on ALL the results and you may never find this out.

Example, in 2011 I had a bone scan, I was never actually told the results and apart from a biopsy and a MRI never had any other tests prior to my prostatectomy in March  2012. 

In July this year I saw a Urologist who didn't appear to know my PSA results from June, September and December 2012, only from March 2013 inwards.  On looking into this I realised that I had changed GPs after my December 2012 PSA and my new GP had no record of these results.  My "new" GP however did have a summary of my previous GPs record and I had access to this.

I was surprised to learn that the bone scan report from 2011 stated that I had an area of "high uptake" in my left femur and needed an x ray.  I was never told this and never had an x ray.

Again, in July this year I had another bone scan.  Again I have never been told all the details of the report on this, but I was informed, in a letter that there was an area of "scarring" on my right kidney and I needed a CT scan of my kidney.

When I attended for the Kidney CT scan I was unexpectedly informed by the radiographers doing it that I needed an X ray of my right femur.  This wasn't entirely a surprise (see above) and sure enough when I ASKED, they said the bone scan had shown an area of "high uptake".  They took me next door and I had 7 X rays of my left femur and hip.  The urologist never told me I needed this X ray and never offered any explanation for it.

I have since never been told the results of this X ray and haven't even been given an appointment and hence the opportunity to ask.  It was only by good fortune that I (only recently) saw the result of my 2011 bone scan and was reassured that it was the same area of "high uptake" and since I haven't had any issue with my leg, I presume all is OK.  However, it might have been a different matter if I hadn't known this!

Doctors are reluctant to show the reports of investigations.  They justify this by saying that  it's not necessary or you might not understand the results and need the opportunity to have them explained to you.

I would first argue that it's not entirely up to them to say what is and isn't necessary to tell you. It's as much up to the patient to agree that, especially when they have, in the past, failed to act fully on results.

I agree that you should have the opportunity to have the results explained, but what if you haven't been offered that opportunity?

As for misunderstanding results, or misinterpreting them, this does run the risk of causing some distress, but I would argue not knowing the results in full can cause distress.  Again, since everyone is different, I don't believe it's entirely up to the doctors to decide what they should and shouldn't reveal to you or might cause you distress.  If there's anything you don't understand you can always ask for an explanation, e.g. from your GP.

Great, if you don't want to see the reports and YOU don't think it's necessary then that's your choice.  However by denying such access or making it difficult to get, they are not even giving you a choice.

The NHS in past decades has always claimed to give patients choice and the latest "ten year plan" emphasises "patient centred care".

Care can only be patient centred if ALL needs are considered and the need for information is a significant priority for most patients.  Doctors do not have the right to deny patients information unless they can demonstrate that  giving such information will cause significant harm to the patient or a third party.  In most cases, this is usually not really an issue.

Whether through ignorance or deliberate intent, (I doubt this latter), I believe that when doctors make it difficult for you to access ALL the information you want, they should be held to account for this, i.e. NOT providing patient centred care.

It is also pointless, since you can gain access to this information by other means anyway.

Some people may find it unnecessary to have access to the reports of their investigations, but that's their choice.  I don't believe that it's true as a general rule and people should be provided with the choice without being obstructed, or judged.

If I'd been told I had a suspicious area in my prostate, I would have found it very informative to know it's size and proximity to the prostate capsule.  If it was relatively small and distant form the capsule, that would be reassuring.  If it were relatively larger or closer, then it could give me better idea what to expect, rather than being in the limbo of not knowing or receiving a later shock.

I was recently told firstly, I had a "bit" of scarring on my kidney.  How much is a "bit"?  No indication given about what it might be.

I was only later told it was 1 to 1.5 cm in size and may "potentially" be another cancer.

For me the second lot of information was most reassuring SINCE I read that kidney cancers under 4cm are stage T1a.

In my experience's in relation to my prostate cancer over the last 9 years, I can say that the doctors managing it have been excellent clinicians and I have received a good quality service in terms of diagnosis and treatment.  The majority of the doctors, (and nurse specialists),  I have encountered have been pleasant and apparently compassionate as well as competent. I have made two complaints about brief encounters with two of them.  One for his arrogant, patronising and totally unnecessary remark to me, the other for her incompetence.  It is easy to deny making a remark, but the latter complaint was upheld.

None of them, I would say, have ever experienced cancer as a patient for themselves and therefore cannot claim to have insight into ALL their patients holistic needs, particularly information needs.

Totally agree but would also check up on those last x rays and scans as in my experience just because they haven't called you back doesn't mean there's nothing to know.  The way our radiology department give out the scans just puts everything they have of yours on a disc so it is interesting sometimes to read what the radiologists put in their report but the consultants don't put in their report and you are not told some of the things and, as you say they probably aren't important but they are interesting to know.

#freefaller

thanks for the suggestion about the disk.  My radiology department also does this and I have already requested the disk.

I am particularly interested in the X ray report since I suspect I have an arthritic left hip.  When they were X raying my femur I asked, (tongue in cheek), if while I was there, they'd do my hip as well.  They did!

I'd like to see the report on that too!