Suspected Bone Mets - No Primary

Hi everybody, 
 

In early February I had an MRI relating to a numb patch on skin on my back. The neurologist called me with the shocking news that they had found “tumour deposits” on a large area of my spine. She referred me to the oncology department so that they could start looking for the primary tumour. My whole world fell apart. 

In the weeks that followed I had multiple blood samples taken, urine and a full body CT scan. When I met with my oncologist, for the first time, she gave me the results - The CT scan confirmed I had lesions on my spine and also my hip. Otherwise nothing else found. 

She examined me and referred me for scans on a small breast lump she felt. I had an ultrasound and full breast MRI and the lump was nothing to worry about.

I had a hip bone biopsy which didn’t yield any information - no abnormalities found.

In May, she sent me back for a full spine/hip MRI to see if the lesions had progressed. They hadn’t. No spread, no changes in that 3 month period.

At this stage I started feeling so confused. How could I have stage 4 cancer and all these tests come back ok? 

Much to my dismay, she asked me to go back for a second bone biopsy. This time the doctor took two sample from the area. 

Both came back “normal”, no malignancies found. Frustratingly, it didn’t show anything else that might help indicate what is causing the lesions. 

Last week I had another full body CT scan as I’ve been having some upper right abdominal discomfort that’s been present for a few months. That all came back clear again, as did all my recent bloods.

I’m 36 and had my first child 16 months ago. I must admit, I have been feeling off recently. I lost weight in the new year without trying. Had been feeling nauseous some days too. I have visual disturbances and light sensitivity but my optician says my eyes look healthy. I do suffer from lower back pain and sciatica but I'm sure it feels muscular and not bone pain.

Has anybody ever heard of someone going through a similar scenario please? 

  • Hello Jo5456, 

    A warm welcome to Cancer Chat! This is indeed rather puzzling and I hope that you do find out more soon. It must be rather frustrating for you not to really understand what the primary cancer is and I hope you get some clarity on all this soon. 

    Hopefully you will also hear from others here on the forum who has been through a similar scenario before and I hope that they will come and share their experience with you. 

    Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm so don't hesitate to give them a call and talk to them about your very specific situation. 

    Keeping everything crossed for you Jo5456 that you get the answers you need soon. 

    Best wishes, 

    Lucie, Cancer Chat Moderator 

  • Hi Jo,

     

    I have just read your post and wanted to check in to see how your doing?

     

    Sending hugs x