Don’t know whether we are coming or going with the hospital !

Hi , this must be a worrying time for you, you asked is it normal to get things wrong like this, I have read a few of your posts and I think this is still early days so they have t necessarily got things wrong they are still in the diagnostic phase where they have to rule things out or in. When I was ill 6 years ago I initially thought I was just suffering from anxiety or depression as my Mum had just died, when a huge lump came up I went to the drs as when I googled on the NHS site it pointed to a hernia. I was referred to A&E straight away who diagnosed me with stage 2 diabetes and that explained some of my symptoms but not the lump. I had a scan which identified many enlarged lymph nodes and the lump was a few of those clumped together not a hernia. One thing they had to rule out (or in) was Lymphoma so a biopsy had to be done. The results of my biopsy came back as melanoma that had spread to my lymph nodes. I laughed at the diagnosis as I thought that couldn’t be right, I was quickly sent to a dermatologist to find the primary source which couldn’t be located (it could have resolved itself years ago) then as melanoma is not just on the skin but can be mucosal or ocular I had an eye examination, the endoscopy the dermatologist suggested was not done as the oncology department when they saw me explained that looking for the primary any further was not necessary for starting treatment and would just be academic as the treatment they were putting me on would target my cancer where ever it was in the body based on the mutation they had found. Nine months later my cancer spread to my ovary, not ovarian cancer but melanoma, the change in treatment was specific to melanoma again.

I am not giving my experience as I think my cancer is the same as your Mum’s but to show that not all cancers are straightforward. A symptom can be many things but as cancer is most serious they have to be careful not to overlook that, then they have to determine the location(s) and identify what cancer type they are dealing with (as it might not be the same as the location. As my primary was never found I was told told a person from Cancer of Unknown Primary (CUP) would be part of any initial Multidisciplinary Team meetings to help decide what the best treatment going forward would be. I had never heard of CUP and I thought diagnosis would be more straightforward. In fact I took to watching the whole series of ‘House’ staring Hugh Laurie as a dr who specialises in rare illnesses. It helped me come to terms with how difficult a hospital doctors job must be for some patients. Based on that and how well my treatment has gone I’m feeling kinder towards your hospital and thinking they haven’t got things wrong they just haven’t finished investigations yet.

I don’t think I’ve got to grips from your posts where your Mum is in diagnosis so forgive me if I’m off base. It helps any of us who reply to complete a few things in your profile, and it helped me sort things out in my mind when I write and rewrite mine. I hope your mum’s team to get the bottom of what’s wrong with her and start the best treatment as soon as possible. I hope that when treatment starts you will feel more comfortable and less anxious going forward. These first weeks are really tough.