Telephone appointment to discuss LH's MRI results booked - worried!

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Hi all

LH had an MRI and bone marrow scan a week ago, following a PSA level of 57.  Today he had a phone call from the hospital to make an appointment for a telephone conversation with a uro-oncology specialist nurse for a week tomorrow.  He was told that this was the earliest that thy could fit him in.

When his MRI was booked he was told that he would need to attend the one stop clinic to receive his results, and attend for most of the day as a biopsy was likely to be performed on the same day, along with any other tests that might need doing.  He was also sent  a leaflet which also mentioned this as the usual way forward.  However in the letter that he was sent  summarising the conversation it says that 'You will have a results appointment with a urologist or nurse practitioner.  You may need to  attend the department for a face to face appointment if you need a prostate exam'.  So now I am really confused and more than a little worried.  Why have things changed?  When will they do a biopsy and why has that not been booked in?  Why is it a telephone appointment rather than a full day face to face.  I am reading all sorts into this and none of them good. 

Does anyone know what it might mean that the appointment has been changed to a telephone call?  My anxiety has gone into overdrive!

Many, many thanks

  • Sorry meant to say good luck for this morning Fingers crossed

  • Thank you for your reply Shar. The problem is that I am guessing they will not speak to me without my husband's consent and I really don't want him to know how much this is freaking me out. He seems calm atm (or he is putting on a good act too! ) so don't want to scare him with my pessimistic thoughts ......

  • Thank you David

    I will keep trying to tell myself that it is good news that there does not seem to be the same degree of urgency as there was at first. Thank you. 

    He does have access to his GP records on the app but think they only show if the hospital send them to the GP and they upload them, which from experience can take a while.

    thank you again for taking time to reply 

  • Hello  . Your husband has had a bone scan and MRI and the experts have had their MDT meeting so they will have a plan. It is extremely rare for no treatment to be offered and usually applies to the very elderly where things like HT might be counter indicated because of other health complaints. Even aggressive prostate cancer which has spread, as is the case with my husband, can be treated with a whole battery of different things so be positive. I know it is difficult and this is the worst time not knowing what you are facing but things will get better.

  • Thank you for your reply. I am sorry to hear about your husband but I am glad treatment was offered and is helping him. My problem is that my mind immediately leaps to the worse case scenario; it is as if I can process that then anything better is a bonus.

    i have just had a look at his NHS app and the only results on there relate to an ultrasound that the GP arranged before we got the PSA results. It says he has an enlarged prostate (59.5 ml) and some urine retention but that the kidneys and bladder look normal with no focal lesions. A small positive I suppose .....

  • That is human nature for a lot of us to think the worst but the reality with prostate cancer is that things are not usually as bad as we initially feared. Prostate cancer is a slow growing cancer which will give the experts time to sort out the plan. With a prostate that size you are borderline whether Brachytherapy is an option but other things will be available. Get your husband focused on doing pelvic floor exercises - there is the SQUEEZY APP which can help ensure he does them properly and this will put him in a good position for any future treatment. 

  • That's really helpful. Thank you Pray