Can't believe this has happened to me

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After one minute being told I don't have ACC metastases to the lungs to being told I have , my head is all over the place. My hospital should have referred me to H&N clinic but sent me to another lung specialist who was not given my biopsy results only my pet scan told me I have various lung cancers he was not worried about in size and wanted to 3 monthly watch and see.

It was only when I looked on my NHS health notes I clearly saw the results saying ACC gone to the lungs. I obviously questioned with my nurse who admitted the cock up and got straight on to H&N . I am told that there is no standardised treatment for me at Aintreeso am being referred to Mr Metcalf at Christies in Manchester to see if I can't take part in any clinical trials.

Has anyone else had a similar experience?

Regards

Amanda 

  • Hello Amanda

    I have just noticed your post and that it's gone unanswered. I am so sorry I can't answer your questions as I have a different cancer, however by me replying it will be "bumped" back to the top of the forum and I hope seen by other Community members and you receive some replies.

    I  am so sorry to read about your issues at your local hospital - I think I would be chasing up the team there to see if they can progress your case. I confess to living in Oldham and had my radiotherapy at Christies and the treatment and staff there was all "Top Drawer".

    I wish you well on your ongoing journey.

    Best wishes - Brian.

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  • HI Amanda, 

                     my daughter has ACC which has spread to her lungs and liver. She was refered to Rob, he is extremely knowlegable and an expert in this field. She was initally started on Lenvatanib by Rob Metcalfe, unfortunately that had little impact. However, she has since had 6 rounds of Cistplatin and Vinorelbine , which had a significant effect on the number and size of her mets. ACCRF website is very helpful and informative. I hope this helps in some way 

  • Hello Amanda

    lm having the same journey only 4 months ahead, it’s a long journey with both painful and relaxing days, unfortunately it doesn’t get any easier for a long time for us.

    Be brave

    Gary

  • Hi Amanda

    just seen your post and wanted to reply as I’m in pretty much the same position, Im 44, I hope you are doing well?

    I had primary salivary tumour removed in jul 22, had proton radiotherapy, at the time I had one lung nodule that they said was nothing, only to be told in sept 23 I have multiple nodules across all lobes of both lungs, so now metastic. I’m also under Rob and agreed to watch and wait. However I didn’t feel comfortable with this, ano struggled a lot with doing nothing, and I looked into options and have had surgery and ablation done privately to remove all nodules, they removed 15 from one lung, though all small and grouped. Have you considered ablation? It is available in certain locations on the NHS, but isn’t routinely recommended. This wasn’t a popular decision with the oncologists as who knows what will happen and if/ when I’ll get more. It’s been major surgery but I believe worth it, but it is still a wait and see. I’ve also seen an integrated oncology consultant and am doing a lot to improve my immune system with diet. Supplements and other complementary therapies to try to prevent future tumour growth.

    I would take part in clinical trials, I believe there is a promising one coming up this year that Rob can advise on.

    happy to keep in touch, there’s not many of us out there!

    lorna