Hi Wtphillips,

Welcome to Cancer Chat. I'm sorry to read of the difficulties you've been experiencing recently.

It's hard to advise on the possible reasons for the symptoms you've been having - really this is best done by your doctor or medical team. I'm not sure what the timeframe is for your referral but hopefully this comes soon and you can get some further answers.

If you'd like to talk anything through with our nurses, you can reach them on 0808 800 4040 - Monday-Friday, 9-5.

Wishing you all the best,

Ben
Cancer Chat Moderator

Hi. My MIL had carcionid syndrome diagnosed 2016 and she too had had swelling and discolouration of one leg. It took them months to diagnose her and no one linked her symptoms which included funny turns and flushing. She became quite poorly and lost a lot of weight and we really had to push the GP and hospital where she had been having tests as no-one was co-ordinating the results - all of a sudden they got into gear and they found a tumour on her ovary which was removed. Follow up ct scans were clear until over a year ago when a note was put on her file to have a further scan on something suspicious. This was not passed on and only picked up by her GP a few months ago. Meanwhile her leg became swollen and discoloured again and she has had a few funny turns. As a family we were concerned it had returned and a recent scan that should have been done a year ago now shows secondary cancer in her liver.

Unfortunately the carcinoid syndrome had caused damage to her heart valve which is stable but again - something she has to live with and manage so yes - leg swelling, flushing and bowel problems definitely can be carcinoid syndrome symptoms.

I hope you have found some answers. If not - you should really be complaining to the practice manager at your GP or the patient liaison team at the hospital because they have been negligent in misdiagnosing you and failing to follow up after surgery!