Feeling a bit lost

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I’ve had a biopsy & been advised it’s a CUP as my symptom is a swollen shoulder. Nothing else is showing anywhere on the various scans but now I’m really worried where or what the primary could be. What tests did you have? How long have you waited for appointments? Like most I’ve done some research on the internet and now I’m even more worried. Finding it hard to keep going normally 

  • Hi this is where my secondary is on shoulder area and also had scans the primary is not showing anywhere’ else and they cannot find it , I have had radiotherapy, it is very concerning I know how you feel , are you getting treatment ? I have had a pet scan to look for more but nothing is found , are you in the uk ? 
    it’s difficult to deal with mentally but try and be strong X

  • Hi this is where my secondary is on shoulder area and also had scans the primary is not showing anywhere’ else and they cannot find it , I have had radiotherapy, it is very concerning I know how you feel , are you getting treatment ? I have had a pet scan to look for more but nothing is found , are you in the uk ? 
    it’s difficult to deal with mentally but try and be strong X

  • Hi - I am in the uk. Had the biopsy at one hospital but it’s not the kind of cancer they deal with so now been referred to another one. Waiting for an appt with them. It’s the uncertainty that’s really getting to me - the biopsy shows it’s cancer but they don’t know where it started as the scans are clear. The shoulder is very painful but I take painkillers to help. Trying very hard to keep strong as I don’t want to worry my family x

  • Very similar situation to myself , I had shoulder pain for nearly two years and was seeing an orthopaedic they never found the cancer they said it was wear and tear ! 
    mall my scans are clear too and my oncologist said it’s likely it started in the lung but is not there now , when I asked why wouldn’t it be there she said our bodies can sometimes kill it so that’s what Iam hoping for I hope that’s the same for you. 
    the shoulder pain was excruciating isn’t it ? The radiotherapy has sorted that now 

    please spk to your family you cannot go through this alone Iam sure they will want to help you and support you , did you get a PET scan ? Not sure if I asked that already Xx

  • It does sound like a similar situation- I’m really hoping they can do something soon with my shoulder as it’s difficult to do simple things because it’s so painful. I’ve had MRI & CT scans and they’re not showing anything but not had a PET scan yet. My husband is very supportive but my daughter is a single mum with a young child so I’m trying not to offload on her. Thanks for the replies - it’s helping to know there’s someone else out there with the same situation x

  • Hi,

    Like you I try not to overload on my family who are all incredibly busy but my husband died suddenly in his sleep 18 mths ago so at times I need their support. I am no further forward as to where the primary is. I am so worried about starting chemo on Friday. The nurse phoned today and hopefully I won’t get all the symptoms as they sound horrendous. I have to have a pic line inserted and chemo every 3 weeks with a week off and I have to take tablets at home twice a day for 2 weeks with a week off. It sounds a bit like a double whammy!  Just want it all to go away! Do hope they find something to help your shoulder pain. 
    I live in Berkshire in U.K. 

  • Hi , I think you might need a PET scan I was pleased in a sence when mine came back clear it’s just  wet strange , my oncologist said she think it came from the lung but who knows ! My shoulder pain was also really bad I couldn’t even lay down on it , it was so bad no pain killer was helping at all , I got put on oxypro eventually and it took the edge off 

    definitely Iam here message me anytime I can give you my email address if you would like that 

  • Hi

    I’m up in Lancashire and have been referred to Christies so hopefully they’ll be in touch soon. I think it’s fear of the unknown that’s really getting to me - I’m not brilliant at all the hospital procedures. 
    Like you, my shoulder pain is horrendous at night & sleeping is so difficult when you can’t lie down properly. 
    The chemo schedule sounds really gruelling but if it works it will be worth it. Glad your family is supporting especially as it sounds like you’ve had a really tough time. 
    Keep in touch - I’m really appreciating hearing your advice. I can do email if you’d like x

  • Hi - I had a PIC line - much better than having to have iv needles every time and after a week or so you don't even know it is there - it will be 2 years in March since a liver lesion was found on a routine scan for pain in ribs but after lots of tests and appointments (groin lymph node cancer also found} i didn't actually start treatment until September 2022 which finished at the end of February 2023.  I had 600 hours of chemo - its a long worrying process and chemo can be brutal but I got there ! I really do try to stay positive and my latest scans were negative - obviously with CUP it is the unkown that is so frustrating.  I also take natural supplements which I feel help to keep  my immune system going and it makes me feel like I am contributing to my recovery.  Wishing you strength and positivity xx

  • Thank you for reassuring me a little on the pic line. 
    Im dreading the chemo which starts tomorrow. Did the pic line need to be flushed out and if so did you have to go to the hospital to get that done? You sound so brave and positive I wish I was! Sounds very promising  that your scan was clear. Yes it’s the unknown of CUP that is worrying. Why can’t they find it? Can I also ask what natural supplements you take x