CUPS- feel ignored

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i was referred to the hospital after seeing my gp on7th febuary, with a lump on my breast, a biopsy was taken and a ultrasound, when i reported i also had lumps that were growing on top of my scalp they were also scanned, i returned to the hospital on the 15 to be told i had cancer, since then ive had a ct scan which confirmed i have tumours in my brain and my lung, as well as the previously mentioned, to be told this 3 wks ago and nothing has happened since apart from a 5 minute phone consultaion to inform me they cant find the primary, my question is this, Should they still be testing me to attempt to find primary? should they be treating obvious growing tumours? should they just wait for top man to decide which is my primary, all the while ignoring my fears ect, my daughter died just 6 months ago from leukeamia so im bloody scared

  • Hi  

    Having a CUP diagnosis must be very hard as you don't know where the cancer started. 

    I can't help with your questions, as I'm not a member of this forum, but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    Have you been allocated a cancer nurse specialist (CNS), sometimes referred to as a key worker or Macmillan nurse, yet as they are great at answering questions and finding out when treatment is likely to start? If not you could give your consultant's secretary a call and she should be able to either put you in touch with your CNS or let you know what is happening.

    ((hugs))

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  • thank you for replying, i dont even have a consultant yet, im due to go see someone monday, but i dont know which consultant i will be under as all tests seem to have stopped, ive called the hospital countless times, ive even called PALS, but still i know nothing

    angie 

  • It sounds like a very frustrating time for you Angie but hopefully you'll know a lot more after Monday.

    x

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  • So sorry you have recently lost your daughter and you are understandibly frightened - i was found to have a liver lesion in March 2022 and had loads of different scans and tests, they then found another in my groin in the July but I didn't start chemo until the end of September 2022.  Its really hard to stay positive when you don't know what is happening.  I was told that although nothing seemed to be happening there was a lot going on the background.  I had 600 hours of chemotherapy (my cancer was identified as squamous cell carcinoma) which i finished at the end of February 2023 - so far so good - I have regular oncology appointments and scans - wishing you all the best and hope you get answers soon x

  • Thank you for sharing  Freddie. Whilst waiting I had a new tumour start yesterday. Another on my scalp. Roll on Monday and hopefully I will finally get some answers. It's really encouraging to read your case. X

    angie 

  • Hi Angie, in a similar boat here. Been back and forth to drs since December with chest pain. Had CT on 20 Feb and on 22 they called to say I had metastases on my ribs. Been in for bone marrow biospsy (it's not that) got a breast clinic appt next week, though I have no signs of breast cancer. I also feel totally ignored - have not had an appt in clinic, nobody has asked my history just told to go from one appt to the next with no discussion. Had one dr call me last week to tell me I should come in if any problem with tingling in hands and feet etc as it's in my spine - what a way to tell someone such awful news, in a random 2 minute phone call! So sorry to hear about your daughter, that must make this so much harder xxx

  • I'm so sorry for you. I had appointment yesterday and was told I only have a few months left as its in my lungs, thorax,hip,head and the one in my head has eaten away at my skull. They can give me radiation to the head one, bit the others are untreatable. Now my youngest daughter nor only lost her sister in August but within the same year she's about to lose her mum too. I hope you can get treatment xx

    angie 

  • This is so heartbreaking Angie, your poor baby. It's overwhelming how quickly things can go from nothing in particular to terrible. I hope you have some good extended family to help you and your daughter through this. Thanks for your good wishes - I'm hoping they might find the primary at the breast clinic next week, though I've poked and prodded and can't see anything that looks odd. So so sorry to hear your news xx

  • My husband is in a similar although different situation.  CUPs is now being discussed as The Lung cancer and an adenocarcinoma in his chest sitting outside his oesphagus makes him an “Anomaly”  (consultants words) bounced first from GI to Lung and 9 weeks down the line bouncing back to GI who I’ve no doubt will bounce him on to The Malignancy of unknown origin team.  I Feel that it’s about not wanting to use their budget. In the meantime we live in Limbo.. cancelled trips/events and holidays waiting for a phone call.  Always apologetic but 1 step forward half a dozen backward.  He has had tests a CT PET, CT head and The Lead Pathologist input.  So we keep waiting and I’m watching my husband in pain and lost. 
    I hope you get answers soon.  We used to say we wouldn’t let our animals suffer but it seems they have a better service now than we do.  All the very best x

  • Sorry to hear that Cathe - it is torture bouncing around from one clinic to the next with nobody taking responsibility for you. I'm now in the relatively lucky position of knowing I have breast cancer (although it's not actually in my breast tissue) and it does feel so much better when you have a consultant and they know what's actually going on. I hope you and your husband get some clarity soon x