Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

My dad has just been diagnosed with prostate cancer

Ej21
Posted by

Hi Kerry,

So sorry to hear about your dads diagnosis.

My dad has an enlarged prostate which was thought to be benign but turned out wasn’t. I know how scary it is, from the first symptoms through to a diagnose is such a terrifying and nerve wracking time for you and your family.

My dad was diagnosed early this year and I have spent hours on Dr Google so I totally know the rollercoaster of uncertainty you feel.

One thing I have learned is that prostate cancer is very treatable. 

Wish you well. If you ever need to chat, please feel free to message me directly.

Em 

Kerrygirly
Posted by

Hello, so my dad got his ct results today they said all was good except they couldn't get a clear picture of bladder as it had urine in it. He is having trouble emptying it alright. Do you think they suspect someone. Thanks again 

Kind Regards

In Ireland

Kerrygirly
Posted by

Not too sure how to edit above.... but was thinking maybe as the bladder was full would it be possible that they couldn't get a clear picture of other organs ect that lies behind bladder?? Thanks again 

Kind Regards

In Ireland

Uroboros
Posted by

I wouldn't read too much into what they said about the bladder. Whoever looks at the images looks at everything.  The last bone scan I had said no hot spots but there was a problem with my left femur, possibly an old fracture.  If they said everything was OK, then it was.  The bladder is unlikely to hide anything behind it, CT scan doesn't work like that.  If they couldn't see the bladder very well, it simply means what it says.

Kerrygirly
Posted by

Thanks Uroboros,

I spoke with his cancer nurse this morning. He did re assure me the bladder was ok. It showed up exactly what the mri did a few months back but didnt get a very clear picture of prostate and pelvic lymph node as bladder was very full. 

Thanks again 

Kind Regards

In Ireland

Uroboros
Posted by

Sorry, I got that wrong, was just trying to be reassuring. 

If they don't want to repeat the scan, I guess that's reassuring.

Kerrygirly
Posted by

Yes thankfully that is re assuring that scan doesn't need to be repeated. I think my dad picked up the consultant wrong yesterday when he mentioned the bladder was full, dad assumed he couldn't get a full view of bladder. But the nurse assured me the bladder is ok.

Thanks again 

L

Kind Regards

In Ireland

Uroboros
Posted by

Incidentally,  it's my opinion that the treatment appears appropriate.

However, I have read through your early posts and I'm appalled at the way this has been managed.  It may be that I've misread it, or you have missed some things out.

It does appear that the treatment was decided BEFORE the CT and bone scan, which since the scans are part of the staging procedure is totally the wrong way round.

What's most appalling, if what you say is true is that he was "told" what the treatment would be.  I may also be misreading this.

However in the UK, the law of informed consent requires that patients are informed about any treatment and give their consent.

"Informed" means that the treatment is explained to the patient, it's benefits, it's risks and any alternatives.  This would appear to include results of investigations and their implications.

Not only that but "informed" also means that the health professional has a duty to check that the pateint has understood the information.

To do anything less than this is actually, theoretically, illegal.

The "choice" of treatment should  be discussed between doctor and patient, it should be a joint decision, (except in cases where delay would be life threatening or the patient  does not have sufficient "mental capacity" (another law).  The lack of full compliance with the law of consent appaars to me to be endemic, particularly in relation to urology and especially prostate cancer.

In my own part of the country I do know from the 2017 National Cancer Patient Experience Survey, where I live urology and particularly prostate cancer patients' experiences are the lowest scoring.  Being given understandable information is very poor.

One aspect of this is that you're always being told, you can ask questions, take a list of the questions you have with you.

Sometimes, there are questions you need to ask, that you don't know you need to ask.

The 2014 NICE guidelines on prostate cancer (National Institute for Health and Care Excellence) go to great lengths to emphasise what information should be "offered", i.e. you shouldn't have to ask.  My experience of diagnosis and treatment decisions precedes 2014, but I wonder if things have improved following their publication.

You may think, as long as the treatments OK why bother.  Well no bother really if the treatment's OK, it's OK.  However there's more to prostate cancer than just treatment.

For various reasons, it is more beneficial for any cancer patient to be involved in decision making, to be enabled to self-manage as far as possible and to feel as if they have some control over what's happening and know what's going on.

This significanlty benefits general well being.

I'm not suggesting that you look back at what's happaened already and wonder how things could be improved in the past, but in the  future consider how you can support your dad in taking an active part in his care and how he can put himself at the centre of his care.  Patient centred care is a significant feature of the government's ten year plan for the NHS.

Kerrygirly
Posted by

Thanks Uroboros,

So this is how things happened for my dad he is 67yrs in good health. Last Ocober my dads psa was 5.5 (dont know why he wasnt referred back then) it was then repeated in January and psa was 13.4. In March he was called for an internal examination and had an MRI. When he went back for results they told him his prostate was 5 times larger than what it should be and would be referred to a Urologist where he would have a biopsy. The biopsy was done called back a few days later for the results. They said as expected it is cancer. You will start hormone treatment and radiotherpy, hormone treatment included 6 monthly injections for up to 2 or 3 years. They also advised he would need bone and ct to rule out any spread. A few weeks later he was called to meet with radiologist. This is where he was informed he had a gleason score of 9 that it was in the left side of proatate and in left lymph node in pelvis (the lymph node came as a shock as he wasnt Initially told this ). Radiologist  advised he would be on hormone treatment for 3 months (he will still continue hormone e treatment after radiotherapy)prior to 39 round of radiotherapy  and would also need gold marker so they can target the cancer in the radiation. he had bone scan which was all clear. He had ct scan and they rang him this week to say all was good but couldn't get a clear picture as bladder was full. So my dad left that conversation thinking his bladder may or may not have cancer in it. I rang his cancer nurse this morning who told me bladder is fine. The ct showed up what the initial mri showed up I.e the prostate and lymph node but couldn't get a clear picture as bladder was too full. 

Kind Reards

L

In Ireland

Kind Regards

In Ireland

Uroboros
Posted by

Hi Kerrygirly, I see the Irish influence now :-)

Thanks for the clarification.

I'm sure ireland Eire has similar Informed consent laws.  A few bullet points

Your dad was "told" hsi treatment before staging, the staging may have altered things and they could have decided to change the treatment, how would that have felt?

You connfirm he wasn't consulted, he was told.

He wasnt fully informed, e.g. hadn't been given the Gleason scores and had them explained, akthough admittedly, consent can be gained at any point up to the very moment treatment is started.  When did he sign the consent  form?

An enlarged prostate gland in itself doesn't necessarily mean it's cancer.  Benign Pristatic Hyperplasia (BPH) is very commno, but as well as the PSA is good reason for a Biopsy.  Withjout the PSA, biposy might not have happened.

Uroboros
Posted by

Hi Kerrygirly, I see the Irish influence now :-)

Thanks for the clarification.

I'm sure ireland Eire, has similar Informed consent laws.  A few bullet points

Your dad was "told" his treatment before staging  (scans), the staging may have altered things and they could have decided to change the treatment, how would that have felt?

You confirm he wasn't consulted, he was told.

He wasnt fully informed, e.g. hadn't been given the Gleason scores and had them explained, athough admittedly, consent can be gained at any point up to the very moment treatment is started.  When did he sign the consent  form?

An enlarged prostate gland in itself doesn't necessarily mean it's cancer.  Benign Prostatic Hyperplasia (BPH) is very common, but as well as a raised  PSA is good reason for a Biopsy.  It might have also felt irregular on  rectal examination.   Without the PSA, and/or irregularity biopsy might not have happened.  My prostate wasn't enlarged,   my PSA not particularly high for someone with chronic prostatitis,  but my examination was irregular.

I have always been passionate about health care being holistic, not just focussed on physical tretament.  No matter what country you're in I believe you deserve to have ALL your needs met.

Kerrygirly
Posted by

Nope your right he was basically just told never given Gleason score then. I know he did sign off on the radiation treatment not too sure about the initial consultation where he was told he had canc. To date he hadnt been given a stage whether its t3b or t4. Maybe they were waiting for ct scan who know

Kind Regards

In Ireland

freefaller
Posted by

A PSA of 5.5 is maybe not too high as PSA does go up as you get older and can understand why they didn't refer at that stage but maybe should have followed up with a DRE at that stage and then another PSA .  Had your Dad had any previous PSA tests as it is a sharp increase over a short time which would prompt referral for further tests which it did when it went up to 13.4.  To be honest I agree with Urobros  you should not be told your treatment but given the options you may have which could include prostate removal as well as HT and radiotherapy.  The treatment of choice as the cancer has spread to lymph nodes would be HT and radiotherapy as the radiotherapy will be targeted to get all the cancer - something that could not necessarily be done with an operation once cancer has spread - even if they did remove the lymph nodes - though of course it could.  As his prostate is so large the HT will shrink that so that it is easier for the radiotherapy as a smaller target to reach.  I think you said he was having the fiducial markers - gold seeds implanted in the prostate to aid targeting?  If so this will also help with targeting the radiotherapy beams and will hopefully mean less "collateral damage" to surrounding organs and tissue.  I had this and it meant that I had  no severe side effects from the radiotherapy - maybe I wouldn't have without the gold seeds but wanted to avoid as many side effects and as much collateral damage as I could as also have bladder and sphincter problems so glad I did.  I also think you have been waiting rather a long between tests and being called for appointments - though overall that may make no difference to treatment and outcome.   I am pleased to say I  waited no longer than 2 weeks between each test and results and/or consultation - I do not know what the targets are for getting through all the tests to get to diagnosis or indeed if there are any - does any one know?  I do grumble about the NHS but I cannot fault them on the time taken between all tests and appointments though of course i wish they had been quicker as hated the waiting things went along quite quickly for me and I only held things up myself to gather more information and to consult with other consultants on other treatment options which my NHS area did not offer which is how I got to have the gold seeds implanted and consequently had my radiotherapy at a hospital out side my PCT and 3 hours from where I live.  I was diagnosed on June 9th by biopsy but had the MRI 3 weeks after (as should wait for biopsy site to heal and not cloud MRI picture - which did change the T score and started hormone therapy at the beginning of July.  

You do have to be proactive and ask a lot of questions and sometimes you do not know the questions to ask which is where this forum comes into its own.  I wish I had joined before my diagnosis as would have more information at my fingertips ready for the diagnosis.  I think the optimum time to join is when you know you are going for a MRI for prostate diagnosis.

Take care and I hope you have the results of all the scans soon.

Take care,

Des

Seamus47
Posted by

In Scotland the NHS target for any type of cancer is 62 days from first referral by the GP to the start of treatment. I was first referred by the GP on 15th April 2018 and started treatment on 2nd October, a total of 170 days, nearly three times the NHS target.

I know of several people who have all been treated withing the 62 day target but many more who have not!

Seamus
(See my profile for more)
Uroboros
Posted by

In England, Northern Ireland, Scotland and Wales) alphabetical older. the first target is that there should be no longer than 2 weeks between being referred by a GP and being seen  by a consultant.

The next target is that there should be no more than 31 days between the decision to treat and the start of treatment for 95% of patients.

The next target is that should be no more thn 62 days between decision to treat and start of treatment for 85% of the patients who didn't get treatment within 31 days.

The delay is often in the period between seeing the consultant and decison to treat which depends on  on how long it takes to do all investigations.  Maybe giving a treatment decision before completing investigations is a way of speeding things up.

In my case it was over 3 months between seeing a consultant and getting a treatment decision, two of those months they delayed the biopsy whilst I had two months of antibiotics to confirm that it wasn't my chroninc prostatitis causing the raised PSA of 6.4.  However, this was before the 31 day and 62 day rules were implemented.

Additionally the MRI, which wasn't yet multi parametric, was done AFTER the biopsy rather than before as it is now usually.

Incidently PCT's haven't existed since 2013 when they were replaced by Clinical Commissioning Groups, (CCGs).  CCG's commission secondary non-specialist health services, but not primary care (GPs) or specialist services   (Specialist does not mean consuiltants).

Since the implementation of Sustainability and Transformation Plans in about 2016-17 some CCGs have amalgamated so that one CCG, rather than several commission services for an area known as an STP footprint.    This  may change further due to the NHS Ten Year Plan 2019 and the implementatiion of Integrated Care Systems.

Of course, in Eire none of this may apply,  I have no knowledge of the Irish health care system.