New and anxious

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Hello

Apologies if this sounds like a meandering mess.

First post, although I have been following for a few weeks after husband (60 next month) was sent for tests due to no symptoms but microscopic blood traces in urine and eventually a blood test with PSA of 23. After many tests, last one being a PETscan now waiting for an appointment on 22nd May for biopsy and PETscan results with Cancer Specialist Nurses. Already had cystoscopy, MRI, bone scan, US urinary tract.

The waiting is awful. I’m finding it hard not to worry but husband is carrying on with work etc so has distractions. Everything else is on hold.

I suppose I’m wanting things to move quickly. There doesn’t seem to be anyone to support us and we’re just in limbo awaiting the appointment. What will happen at the appointment with the Cancer Nurse Specialists? Will they start treatment or will we have another few weeks waiting to see the specialist? 

I’ve not wanted to post as I know that there are others in far worse situations. I’m just struggling with the waiting and lack of communication.

Many thanks.


UPDATE

Thank you so much for all your responses. So helpful and informative.

Have received a letter today dated 13th May confirming US Urinary Tract identified no pathologies and that they are waiting for TP Biopsy ( took place 4th May). No mention of PETscan which was done privately and consultant was very keen for this to be done as he says very likely high grade disease. Letter was from Clinical Nurse Specialist - Faster Diagnosis Nurse.

Who will we actually see at this appointment? A consultant, Clinical Nurse Specialist or Uro-Oncology Clinical Nurse Specialist?!

Feel like we’ve been left hanging with no real information and no real point of contact.

Sorry for the rant and questions. Just not liking this being in limbo and waiting.

  • 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  .

    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   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.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi GilliB,

    you may want to read my bio  - 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.