Waiting game

I cannot say as have no experience of this but I am pleased they asked him to have a 3D scan obviously they are getting as much information as possible.  With his family history (If his father had Prostate Cancer then he is 3 times more likely to get it too), PSA results and what was found on DRE by the registrar it is likely he has PCa so the more information they can get  at this stage the better . You will find that this journey involves a lot of waiting for tests, appointments and results and it is quite hard all this waiting. At least your urologist is doing things the right way around with scans first and biopsy last and really they will not tell you much until they have  all the  information about all the scans and biopsies.  Once all the tests are done you will be given a gleason score which will be a number made up of 2 other numbers - mine was 7 (3+4) it is important to know how the number is made up as 7 (4+3) means  a difference in the agressiveness.  You will also be given a T score mine was T2 but after the MRI was upped to T3.  Unfortunatley, my biopsy was done before the MRI which showed that the tumour was at the edge of the capsule pushing on the back of the prostate so may be close or already have broken out so I was given a lower score than I actually had.  A really good resource for you is the Prostate Cancer UK website where you can download pamohlets which give a lot of good information.  At this stage you should have a look at the "Prostate Cancer Toolkit" which is a collection of leaflets for recently diagnosed Prostate Cancer Patients look at www.prostatecanceruk.org - I think that is right.  You can also call the Prostate Cancer UK specialist nurses and ask them questions.  They have been invaluable for me and my wife during my journey.  Also find out if you have a Maggies Cancer Centre or other Cancer Self help charity group near you.  My local Maggies have a Prostate Cancer Club called the Walnut Club which meets every wednesday with the wives, partners  and carers meeting on the last Wednesday of the month and we have a good time whilst also supporting each other through our journeys with this disease. 

Take care of yourselves and each other and let us know how you get on.

Des

Thank you so much for your advice Des, the waiting just seems agonising but I can see it’s normal sadly for everyone on here. I have private medical insurance through work which my partner is a member of but as it’s holiday time (more than appreciate consultants need a break too) it will really make no difference time wise and we appreciated the candid approach of the registrar we saw through the nhs so will continue on.

I will definitely look up the sites you mentioned and see if there are any local groups (doubt I’ll get him along till he knows his full prognosis though).

Thanks again and I hope you are doing well.

I'm sorry tlo hear your partner has apparently joined us Prostate Cancer sufferers.  This must be a very worrying time.

It IS a time of Waiting, waiting, waiting and NOT knowing.  These are the worst parts of going through ths time.

Personally, I have never  had a CT scan, never mind a 3D one.  I do know however, that like most "imaging" scans, a specialist needs to look at it thoroughly before coming to any consclusion about what's seen on it.  The people doing the scan are probably only techncians. So calling him back may mean very little.

All these investigations do take time and it's terrible, I know waiitng for the results and wondering what they mean.  It's good that if cancer is suspected then this can be confirmed and "staged".  The TNM staging system is commonly used to judge how advance the cancer is and along with the Gleason Score , will allow a judgment to be made about what treatment options are available for your partner.

To find out more about diagnosis and tests you can visit this web page

https://www.macmillan.org.uk/information-and-support/prostate-cancer/diagnosis

For further information, and support you can call in at a Macmillan Information and Support Centre if there is one near you.  There are many dotted about the country.    The Macmillan Centre will have a list of local cancer support charities and prostate cancer support groups where your partner can meet other men going through, or having gone through, the same things.  Or you can just have an inflormal chat with the people in the centre,

To find out if there;s a Macmillan Information and Support Cengre near you, go to this web page

https://www.macmillan.org.uk/in-your-area/choose-location.html

To be honest the NHS is brilliant at this but sometimes it is quicker and easier to get some scans and tests done privately - not always of course. 

You can go along yourself to most of the groups or call them whether you are the cancer sufferer, carer or family member.  It really is just so good to have people to talk to that have been through what you are going through and no end of tips and help can be gained from talking to either the professionals, the volunteers or the other people going there.  So, don't wait for your hubby to go - some don't like talking at all about their illnesses but it is good for you to have a place to go and speak candidly about your experience and somewhere where you can ask for help and assistance on pretty much all aspects of cancer and it's many implications on daily life.

Thanks I am doing really well now - slowly getting a new body - new hip 9 years ago, new knee at the end of next month and maybe a pacemaker in the future!  Shame they can't make me 21 again with hair and vitaility!

Take care.

Des

Thank you so much for this info, I’ll definitely be reading up on TNM and Gleason scores to try and understand more ahead of his appointments.

We do know his images were referred to the radiologist consultant who asked for the 3D scans but I’ll try not to read anything in to it and stay positive.

i do appreciate people taking the time to read my questions and respond as I know everyone is dealing with their own Journey.

With kindest regards 

Thanks again Des, I will look in to local groups as I do believe I can only best support him if I am doing ok (I lost my father very suddenly at only 62, 6 weeks ago and his father only passed away 10 months previously with cancer so all of this made me “force” my partner to the doctor as whilst he had little symptoms- only changed toilet habits after alcohol and mild side and back pain, his family history of cancer concerned me, so for peace of mind we both had an “mot”). Now here we are but hopefully caught early and treatable with less invasive methods.

You sound like a tower of strength and with humour through all of these medical woes, you’ll be bionic, whizzing about no doubt! 

Good luck for the knee op and all the best

My feeling would be that scanning is non intrusive.

It can only be positive to be sure and have all the scans you can. I'm currently waiting for a scan as prostatectomy not fully successful.  The waiting is torture. But better to have scans so biopsy can be more accurately targeted.

This is a long journey that we're on. I find it hard but we need to stay in today. I get assurance that pc is slow growing and I don't know how long it was therr before being found

We're on similar journeys but it's our journey. Do what is right for you and your husband 

Just wondering was it a 3D or 3T scan as have been doing a bit of reading about scans and this could very well be what he had and it is just a more powerful scan which can see more in more detail so is just an valuable tool at this stage - not sure how it fits in with what I would call "normal" MRI and multiparametric Mri at the moment but it seems to be closer to the fantastic multiparametric mri scans that are invaluable in diagnosing prostate cancer.  In the Promis trial it seems that a Multi parametric MRI could diagnose better than a TRUS biopsy apparently.  Very likely that the consultant had written him up for this scan  maybe if enough detail could not be seen on the first scan or for some other reason such as to define margins.  They really do seem to be doing a good job with you.

Take care

Des.

Thanks Des- it could well have been 3T and he heard it wrong, they didn’t say any terms to me only that they were keeping him another half an hour and not to worry.

His concern sprung from being asked to come back to another room for more images and the fact that he felt they concentrated on his head and shoulders- he could of course be adding 2 and 2 and coming to 6 as naturally it’s a nerve wracking time and as we were sat with other prostate cancer patients in the waiting room (2 that seemed to have the biopsy first which all the info on here points against) and neither of them were called for more images it did make us have cause for concern.

i appreciate you looking this up and coming back to me-  CT scan on 23rd, biopsy on 30th and we will go from there. You have really helped ease my mind and given me a wealth to look into so I can best support him and if an mri is needed but the nhs are slow I already have authorisation from bupa through my medical scheme.

Thanks again, you are very kind and it’s great to see a the support on here for everyone, it makes you appreciate how much is available.

No problem we are all here to help.

Des