Hi new to this forum and sorry for my rant

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My husband has a PSI of 14 and our GP asked for  a fast track cancer  appt  due to his other symptoms. Received a letter following week with a date but in bold writing do not attend this appoint and ignore any text messages .

phoned the hospital as he didn’t get one text but two . Was told by the on call  specialist nurse that he should not attend . Asked how long he would have to wait but informed it’s very busy and it will be at least 6 weeks . Got into a debate about the delays in cancer and was told if it’s slow growing he’s plenty time , I then said what if it’s fast growing   She replied its already too late.  She did say it with be radium as a treatment   Appt 6 weeks after for MRI scan told two weeks for results . Phone call two weeks later  and he was told over the phone that he had cancer  in his prostrate , seminal visal and a sus lymph node and he needed a biopsy . Again same old we are busy . Said we would travel for such, however she did have a cancellation and he had it yesterday and told it’s going to be 5 weeks for the results . He is now waiting on a bone scan but no appt .
Up till now we don’t have a named consultant nor specialist nurse.  We have lots of questions unanswered and don’t know who to ask I just feel these delays are life threatening and nobody seems to give a jot .  Is it me or are other people experiencing the same. 

  • Hello  

    A warm welcome to the online Prostate Cancer Community  -  It's a place for help support and a rant if you need one.

    It's an issue with the NHS and it depends where you are as to how your treatment progresses. In this day and age you have to be gently assertive and fend for yourself - it's common on this forum I am sad to say.

    My next course of action would be to contact PALS (Patient Advisory and Liaison Service) at his hospital - advise them of the shoddy service - let them know what's gone on so far and ask for a named consultant and the e-mail address for his secretary.  As they know he has Prostate Cancer and you don't yet know the full diagnosis - the very least I would expect is them to start him on Hormone Therapy - to slow down any growth.

    I hope this works and you can move forward - you need a face to face appointment to start treatment.

    If you don't get any satisfaction with your hospital PALS come back to me - I have other ideas but try PALS first.

    Best wishes - Brian.

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  • Hi Brian , thank you for your prompt reply . As a woman I hadn’t ever heard of a seminal  visal and the nurse didn’t explain further it was so matter if fact . It’s going to be a huge learning curve for both of us  I will contact the above . 

  • Hello  

    Here's a link to Prostate Cancer UK's "How Prostate Cancer is Diagnosed"

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

    That's a good start to your "Learning Curve" and tells you what the diagnosis means and where the cancer can get too.

    Best wishes - Brian

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

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Hello  .

    A warm welcome from a wife whose husband has advanced metastatic prostate cancer. Brian has given you an excellent start on how prostate cancer is diagnosed but if there is anything you don't understand, need clarification on, or you want some answers to questions then as a group we will try to help. You are part way through the diagnostic stage and just trying to get a bone scan - it is advisable to try and get this done before any hormone therapy is started in order to get the most accurate results. Waiting for results is stressful but did you know that you can have access to your records on line by speaking to your doctor and asking for FULL ACCESS. This is available in most, but not all parts of the country. Make sure you keep a note of when you have spoken to people, along with name and content as this helps if you go down the PALS/ PILS route. 

    I will pick up on your comment about your husband probably needing 'radium' treatment. I think it is more likely that he will need radiotherapy as radium treatment is normally reserved for later treatment in patients with metastatic bone mets and from what you have said, there is no evidence of this. Don't read anything into the fact that your husband is having a bone scan - this is normal procedure for most men and is given more times to rule bone mets out rather than in.

    The seminal vesicles produce and store a lot of the fluid which makes up the semen and is in the same area as the prostate gland.

    Please come back with any questions, we don't get embarrassed and are here if you want to vent or just need support. I have also attached a link to treatments.

    https://prostatecanceruk.org/prostate-information-and-support/treatments/choosing-a-treatment#:~:text=The%20main%20treatments%20for%20localised,brachytherapy.

  • Hi Johnam,

    Just an add on to the excellent advice you've already had. Your situation sounds very stressful. Sometimes it feels like you have no choice but to be politely pushy.- I phoned up every department that my partner had a scan in and asked if there were any short notice appointments, could they please phone as he can be with you in 10-15 minutes. All his scans and biopsy were done within a few weeks because of this. They phoned , he dropped everything and got in the car. After this we had to wait for quite a while for the consultation, so once we had the biopsy results we paid and went private. This way you can pick any consultant from any hospital to analyse the scans. We had the Royal Marsden in London. We asked our GP to send through our scans and results or usually your chosen consultant/hospital will request them for you. You can then get advice on what treatment they would suggest and an un-rushed conversation about options. For a few hundred pounds it takes a lot of stress out of the situation. Then you have some serious knowledge of where you are. Then when you then see your NHS consultant you can not only ask very informed questions, but ask about treatments that you have already discussed. You will feel more in control of the situation and not at the mercy of an overloaded and frustrating system. The NHS is good and most of the treatment options are the same if not similar as private, but this initial hold up of appointments and feed back in some areas can be very slow.

    If ever we feel we want a second opinion we will seek it as a back up. It's a choice you can make. Here is a link if you are near this hospital for a private consult. It will give you an idea of what options could be there for you.

    Best wishes L

    https://https://www.royalmarsden.nhs.uk/private-care/private-care

  • Excellent advice, as always

  • Many thanks for your knowledge it’s much appreciated . We live in Scotland so I will check out regarding this 

  • Many thanks . We are just overwhelmed right now and felt it really harsh being told over the phone . Absolutely no empathy 

  • Hello Johnam, welcome! I’m sorry to hear of your situation but fully understand where you are coming from as our own experience ( in England) was very similar! We did all the things suggested in previous posts but we also made a formal complaint to  the hospital trust. Had  things not improved and had my husband not eventually  got the care for which he had paid for all his working life in taxes, I would have written to our MP. 

    The journey through the diagnostics was, for us, terribly stressful. Once we got passed over to oncology, things improved and we got fantastic care. You are allowed to rant! I also shed enough tears to fill a reservoir! But the emotions do settle in time as you settle into treatment. Suddenly you realise that life can go on and can be enjoyed again!

    I hope things improve for you soon but do let us know how things go for you, if you have any questions and to rant if it all gets too much:) We’re may all be at different stages on this journey but we all know how hard it can get at times :)

  • Hi Worriedwife, many thanks. I thought it was just us . I did contact my MSP when we were told it would.be 6 weeks to start on the diagnosis journey . She just got a reply yesterday from the NHS board that he got his scan 28th April but nothing about the length of wait