Fiance been diagnosed presumed lung cancer with spinal invasion

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Hi, my fiance(40) has been diagnosed two weeks ago. Shoulder, back and arm pain for 6 months but misdiagnosed with muscle injuries. Finally finding out through a mri we was sent to the specialists who's done a pet scan, sent for a biopsy however the sedative didn't work and he pulled out the tube doctors refused to continue and said he'd be sent to be put to sleep and have the biopsy, 2WW referral!  So could be longer. They presume T4n1m0 with spinal invasion. Been given painkillers and left to wait it out basically. He's in severe pain and csnt function for daily living, spending more time in bed as the days go on. Surly this isn't right! How do you know when a person has to be checked? How do I know if he needs Medical attention or anything? I I feel so lost as no nurses have given us advice just left to wait and I don't know where to turn or what to do. We've two children 1 & 7 and I need advice thank you 

  • Hi. I'm so sorry to hear what you're going through and can totally sympathise. My partner was told 6 weeks ago that he had spinal cancer. Was sent home from a week's stay in hospital the day after his diagnosis and we had no word from anyone for 4 weeks - nothing,.no treatment plan, no follow up, no prognosis. He is on morphine for the pain, but the morphine makes him itch, so now he's also using steroids cream for the itch. Finally, 10 days ago, a nurse practitioner phoned to say the radiologist needs more time to study the images...we are still waiting. No further forward. I got the local MP involved but it doesn't seem to have helped speed things up. It's like noone cares.

  • Thank yiu, I'm sorry to hear that about yours too! It's awful isn't it the service is terrible... Have you had scans etc? You can ring them everyday to find out. We do and it works kos they get sick of you ringing it is so wrong. We're now left waiting again and have no way of pushing it until it's picked up, do you have children too? Xx

  • Hi   I am sorry to hear about your fiancé, it must be awful to see him in so much pain. It is frustrating that he now has to wait for the biopsy, they really need this before any treatment can start. The biopsy will tell them which type of cancer it is, and which treatment is best for that type of cancer. 

    What pain killers has he been given? If he is in that much pain I would speak to the GP to see if there is anything more he can have. I would also suggest you phone the macmillan support line. They are available 7 days a week from 8am until 8pm on 0808 808 00 00. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

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  • Hi , sorry to hear this .

    It is shocking to say the least,  I've been in the same situation,  waiting and waiting. Finally got a start date for treatment 12 weeks later so hopefully nothing has spread . My mental health has hit rock bottom. I hope you soon get some answers . Have you tried speaking to PALS ? When i finally got my appointment with oncologist he said another month before treatment, as waiting list , and basically tuff. Luckily I had a phone call 3 days later to book in . Also told to stay positive,  sick of hearing that , how can we . I so pray you get some answers very soon. Xxx

  • It really is he's becoming really unwell with the sickness too now, he's already waited a week for them to have to send him over to get asleep, It's a nightmare! 

    He's on oramorph & slow relese morphine tablets, he's still struggling tho and feels if he tells the hospital they will just basically give up with him because he's getting worse 

    I'm gojng to call these as I definitely need some support ort with this 

  • Aw that is crazy!  I'm really struggling to be fair as it is tough. Not upto now but I'm definitely looking into pals, everyone says it's a process but if it spreads in the meantime.... Would they rescan if they thought it had spread again before treatment? My partner feels they will to prolong it more

  • Definitely  give them a call . I'm still struggling, worried it has spread as scans were 12 wks ago xx

  • Hi. Waiting for MDT ( multi disciplinary team) meeting results. Had lots of scans, CT, MRI.  Think he needs a PET scan, but they seem reluctant. No, we're retired so no dependents. X

  • Our problem is, we are just a little tooth in a big cog wheel, waiting for the wheel to come to our turn. For some of us it just doesn't turn fast enough. 

    I had my lung op' last April. Since then a pal of mine got Prostate and we lost him on Boxing day. I've just had my programmed scan and will be getting a consultation in three weeks. I'm feeling fine and more or less my normal self. But i haven't had the problems your boyfriend has had. good luck

  • This is true,  we try and deal with it best we can . Sorry to hear you lost a friend .