New and anxious

Hi Gilli

Sorry to hear and yes I know, the waiting is the worst part but it does get better.

Just one query though, u say he has already had some tests incl MRI , bone scan, do u have the results on these or will these be available on May 22 along with biopsy results etc.

Regards 

Steve 

Hi Steve

Thank you. 

Sorry for not being clearer it’s been a bit of a blur with 2 appointments being cancellations and for the biopsy the comment was made “wanted to get you in”.

So, if I can remember correctly, the bone scan was clear, the MRI showed suspicious mass in the prostate gland, unclear whether breached or not. US urinary tract clear.

We then saw an urology consultant privately as we’d been told by the MacMillan Uro Oncology CNS that the next step of biopsy could take 6 weeks and another 2 weeks for results. Me being anxious enough decided to use husband’s private work healthcare. 

The consultant was concerned about the MRI mass and wanted to get husband in for biopsy and PETscan so he could clarify staging as likely to be high grade disease. Only just re read this in his letter after the appointment so even more anxious. Husband keeps thinking they’ll say it’s all fine.

At the moment it’s a T3a N0 M0 depending on scan results.

So our appointment is 22nd May with NHS CNS. I have no idea what’s going to happen but wondering whether we should book another appointment with the private specialist as well.

Sorry it’s so long winded and thank you for taking the time to reply.

It seems a very helpful, responsive and knowledgeable place to be.

Ok Gilli, quite a lot of useful info there.

The MRI and bone scan results can tell u  a lot and firstly good news that bone scan clear.

T3 would indicate that cancer has broken thru the gland edge but hopefully the Pet scan will show that nowhere else like the nodes etc.

But still one of the best bits is that it isn't in the bones.

So potentially still curable and probably don't go back privately until u have had the NHS meeting on the 22nd.

Suppose u need to decide who  you would use for treatment.

The other important point is that if it has broken through the gland important that he is started on hormone therapy to hold the tumour back before Radiotherapy starts.

I know you're still waiting for biopsy giving a Gleeson score , hopefully will show not aggressive.

Any other questions please ask and let us know how it goes

Best wishes

Steve 

That’s so helpful Steve thank you. I’m so glad you could make sense of my rambling.

We all breathed a sigh of relief that the bone scan was clear!

The big question is whether it has broken through the gland itself or not and if so to what extent.

Not sure who to use for treatment yet.  NHS has been very good, although no contact with urology department since phone call to say bone scan clear on 24th April. I’m just desperate for more info so we know for certain what’s happening. But if there is a long delay then might as well use private cover to move things a long as we’re paying for it.

Very interesting and useful point re the hormone therapy and radiotherapy as I didn’t know that.

Thank you once more for responding. I feel I have more knowledge if that makes sense but the waiting is agonising.

I think the most important thing is confirmation wether on T3 or T2.

As I have said T3 still curable but T2 just makes it a bit easier.

Your meeting is obviously next week so make sure if T3 u do ask them about the starting of hormone therapy but then they obviously should know all about that.

Just for your info before I started treatment in 2017 my tumour , I had 3 tumours in the gland,

was near the gland edge and so far it hasn't returned.

Hope all goes well next week 

Steve 

A warm welcome GilliB .

Grundo has given you excellent information. To add to this I have attached a link to try and explain things a little more but don't get too far ahead of yourself until your husband has the biopsy and PET scan results. 

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/locally-advanced-prostate-cancer

Hello GilliB  Another warm welcome to the online Community from me - It's good that you have been "stalking" us for a while so you know what we are about.

To add to the great advice above here's another link to "How Prostate Cancer is Diagnosed"

https://shop.prostatecanceruk.org/our-publications/all-publications/how-prostate-cancer-is-diagnosed

I am a T3aNOMO and on a "Curative Pathway" - I have had "issues" but that's me - you can read my journey by clicking on my avatar.

Feel free to ask any questions - however trivial - we are all here for you.

Best wishes - Brian.

Hi GilliB,

you may want to read my bio Alpine Wanderer - I had brachytherapy boost as I had a cancer with aggressive features.  The brachytherapy dealt with the prostate internally.  However, It was close to the edge of the gland and had possibly broken through, so I wanted radiotherapy to the whole pelvic area to make sure that we dealt with any mini metastatic cancer (not visible on bone scans or CT scans).    AW

Thank you once again for really helpful information and advice.

Thank you. T2 or T3 is obviously important and I will try and get the information we need. I’m hoping they can then provide us with treatment options going forward.

Glad you’re doing well.