First Update - Friday 8th June

Hello... so I've told quite a few people now about my diagnosis and it goes without saying how much I appreciate the support and love I've had from everyone, but always worth repeating anyway. It really means a lot to me :)  I'm receiving a lot of messages from people asking about what's happening and when my next appointments are so I decided its easier to just update one page than to send out messages to a lot of different people. (The lessons I've learnt from books about effective work/time management are finally being put to good use.) I will use this page to update on results and pending appointments. 

The current situation is - 
  • The tumour is likely to be on my adrenal gland, and is also impacting my kidney and liver (and metasised to the lungs) . Because of this, they have decided to rule out surgery (for now) as the recovery could be too long after such a major surgery and they think that they need to start chemotherapy. 
  • Before they decide on the best course of chemo, they need to determine the exact type of cancer it is by doing a biopsy. They are pretty sure it's Adrenal Cortical Carcinoma (ACC) but the biopsy will confirm. 
  • I have now had blood test results to confirm I havn't got dangerous high levels of adrenaline so they are able to do the biopsy. The endocrinologist is arranging this ASAP and will hopefully be next week. He said results are normally within 5-7 working days.  
  • Once the biopsy results come through the oncologist will decide on the best course of chemo and that can hopefully begin pretty promptly! Then the fun really begins. 
Although it's always frustrating that things aren't moving faster, appointments have been quickly arranged and test results do take time. My sister said NHS targets for cancer are 14 days for initial appointment and 60 days starting treatment... I had an initial appointment within a few days and about 10 appointments and scans last week. Treatment likely to start in June so I can't complain.

 The tumour is causing what is called Cushing's Syndrome, which is elevated cortisol. This is likely the cause of symptoms which I realise I've actually had for quite a while but have been definitely more noticeable in the last few months/weeks. Primarily for me it's been 

 - bloated, red face (thanks to everyone who has informed me of this/told me I am looking terrible recently) 
 - sleep issues
 - fatigue
 - muscle weakness 
 - inability to concentrate

These symptoms are very likely being exasperated by the fact of mentally adjusting to the fact I've got cancer as well, which is a slow adjustment.

The great news is that I am able to take a pretty benign medication that will lower my cortisol and should help these symptoms, which he's prescribed and and I should start next week and hopefully have an impact pretty quickly.

Hopefully this update is pretty comprehensive. In summary - making progress, and feeling happy that I've got something that should help current symptoms a bit.

I hope you're all good! 

ED


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