Bewildered

This could be a little long so here goes. My husband had prostate cancer and in November 2018 was given all clear, however he mentioned about his throat that had been sore for over month so was referred to ENT. He has lost so much weight as well, over 2 stone and is now just under 8stone. He went for scans for throat and we had a letter to say that no cancer shown in throat however does have enlarged lymph nodes on one side of neck, also an abnormality in his brain. Last Monday he had ultrasound of neck and 4 nodes biopsies, on Thursday he had MRI of brain. On Friday we saw our GP as he now also has a persistent cough and also extreme fatigue, so today he has had lung xrays. He also had a phone call to say he has to have another scan of his brain but with dye this time. As you can imagine we are extremely concerned, getting frustrated not knowing and on my part worrying myself silly watching my husband, who is 64, feeling worse. This is a man that in 42 years before he was diagnosed at 58 with prostate had never been off sick or been in hospital. I guess I am looking for someone to say it will be ok, but also know something wrong. It seems to have been taking ages to get answers. Is this normal? I do understand we had Xmas in middle of this but we saw ENT on Xmas eve. Has anyone got any experiences they would like to share?

  • Hi there ...

    So sorry your hubby is going through so much right now ... but as you probly know, waiting for those scans with dye will tell far more .. then they will get all the relevant info .. then they usually get the whole oncology team together to discuss the way forward and treatment if needed ..

    Unfortunately there's no easy way through the wait .. everything is about waiting ... appointment  / diagnosis / results/ and treatment .. it feels never ending .. but at least when the scan is done you will know more what your all dealing with .. l know how scary it all is .. but hang on in there till it's all done .

    Sending you a big vertual hug ... Chrissie xx

  • Thank you, the latest is he has been called back for another brain scan with dye this tuesday, then Wednesday they have asked him to have a Pet Ct scan with radioactive type dye. He also has to have another biopsy of neck as they want more tissue taken. A week Wednesday he actually has an appointment to see a consultant so am hoping we will get some answers as he really isn’t well. All this waiting is making me very anxious. I am guessing they have some suspicions as otherwise wouldn’t be having all these tests. Hopefully next week we will know for sure. 

  • Hi there ...

    I've had the radio active scans too .. it sounds worse then it is ... though still not nice ... but they sound like they want the whole picture ... l know it must feel overwhelming right now ... but let out any feelings you both have ... it's harder if you keep them in ... it's all about balancing getting emotions out ... then getting your boxing gloves ready to take these things and just think of one thing .. do that then move on to the next ... 

    That's how I coped ... it's not easy ... but hold on in there ... and let us know how you go ... you can vent on here... I did a few times ... and always got a reply and support ... we all know how scary it all is ...

    Sending you a vertual hug ... Will be thinking of you ...  Chrissie x

  • Tomorrow is results day, last week Jim had pet ct, brain scan with dye and he was also called back in for core biopsies of neck again, so am hoping they will have all the information tomorrow.

  • Hi there ...

    Big hug to you all ... it's a scary time I remember well sitting in the waiting room waiting for results .. got everything crossed for you ...

    Chrissie xx

  • Results are back, has started in lungs has spread through lymph nodes and is

    in his brain. Will be under lung team as they believe that is where it started, they have multi disciplinary meeting tomorrow and will call us back in. Am numb but broken hearted as well.