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Goes from one thing to another - lesions found on chest bone and pelvis. Notes now show a referral for Cancer of Unknown Primary (CUP) MDT. I'm so worried

Bettyboo62
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I started with atypical facial pain over 20 years ago, but stopped taking most the meds.  At the moment I take 1 duloxetine.

So, I have had chronic pain for all this time and recently the taste in my mouth changed.  (around 2 years ago).

I was sent to A&E by my doctor (for a brain scan) and because she didn't refer me the correct way, I was sent home.

I have asked to be seen to have a head scan but it's been refused.

Anyway, one doctor sent me to have an endoscopy to see if the taste issue was due to reflux.  (another doctor suggested it was linked to my nerve facial pain, changing the taste buds).

After the scan they found I had lesions on my chest bone and pelvis .  I was told it was usually nothing serious but she would discuss it with the other doctors. 

I was then sent for a MRI on my spine and pelvis this week and it does say in my notes that a PETCT scan will be next, then a referral to CUP MDT.

I was extremely shocked and worried as there had been no mention of cancer.  I have tried to call the department but not had any word back from them.

all my blood tests were normal and I have no CRAB? issues and am fairly healthy.   I really wish I hadn't read that on my notes on the GP app.

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    Hi Bettyboo62, 

    It can't have been easy to live with chronic pain all this time and I am sorry you have had to endure all this and that you were not referred in the correct way and were sent home. It must have been frustrating too to be refused a head scan. It's good that you were finally given an endoscopy and an MRI - its sounds like they are being thorough which is a good thing so that you can finally get some answers. What a shock it must have been to see in your notes that a referral has been made for Cancer of Unknown Primary especially given that no mention was made of cancer. It was a good idea to call the department and it might be worth trying to get hold of them again on Monday and trying to find out more about what it means. 

    It's reassuring news that all blood tests were normal. It's normal to be worried about the notes you read on the GP app but try if you can not to read anything into it as you still have not had the results of your tests or a proper diagnosis so there are many other things it could be and I am keeping everything crossed for you that it all turns out to be nothing of concern. 

    While you are waiting, as I know what an anxious time this period of uncertainty can be, I thought I would share with you these helpful tips to help you cope while waiting for important news.  

    Other members of our community may well have been through something similar before and I will let them come and say hello and share their stories with you. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

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