Adrenal Cancer

FormerMember
FormerMember
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Adrenal Cancer

Isn't nice that I have an option. Either suffer a heart attack because my potassium levels are so out of control that eventually my heart's rhythm gives out or let my adrenal gland grow out of control.

My body has gone crazy since I started on steroids and I have had 2 stays in hospital on a drip having pure potassium pumped into me. As soon as this happens, I am taken off the Mitotane for safety reasons, even if the dose is tiny. Bloods taken twice a week and I fear that Monday's will dip below 2.5 and back in I go!

Why is my body being so awkward and rejecting anything that should make me better?

  • FormerMember
    FormerMember

    Hi so what is your story? Have they removed your tumour and confirmed it as adrenal cancer? Where is your hospital? We have a Facebook group for adrenal cancer here where you can get good advice 

  • FormerMember
    FormerMember in reply to FormerMember

    Have had gastric problems for years. In July, my doctor sent me up to the surgical ward at Stoke Mandeville 'just in case' on a Friday afternoon. "Nothing drastic, but we'll schedule an ultrasound on Monday"

    Feeling much better, I thought I'd sail through it, but they told me instead that I had a large growth on my left kidney and shadows on my liver. A follow up CT scan revealed my adrenal gland was bigger than a fist and had spread to the liver. Transferred to the Churchill Hospital in Oxford, where I was diagnosed with an Adrenal Cortical Carcinoma a month later - take Mitotane (Chemotherapy to reduce the size then hopefully cut it out.

    Started Mitotane, together with Hydrocortisone (Steroid) in August. After 5 days, I was admitted back into Stoke Mandeville with a potassium count of 2.2. Held in for 4 days with 2lt of potassium through a catheter per day. Taken off the Mitotane but left on the Hydrocortisone plus loads of Sando-K (Potassium pills). In the next 3 weeks, I had 2 urinary infections and mouth thrush, but still no Chemo.

    First monthly meeting back at the Churchill, I am prescribed Fludrocortisone and told to start again at a much lower dose. Exactly the same result as the previous paragraph (Ithink Stoke Mandeville are getting rather fed up with me!) After 3 days, I was told I had malignancy induced Conn's disease and put onto Spironolactone to fix.

    That Sunday, potassium reading was 4.0, so all believed 'problem solved'. However, my level has not got above 3.0 since. I am hovering just above being sent back into Stoke Mandeville, taking 2 Mitotane, 30mg of Hydrocortisone, 100mg of Spironolactone and as much Sando-K as I can stomach (currently 8 a day!) Current reading 2.7 with bloods on Monday. If this keeps up, I will be off the Chemo again Monday night and sitting in a ward with another drip in me!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi, I was wondering if you could tell me the name of the Facebook group? There seems to be a few with a similar name. Thank you

  • FormerMember
    FormerMember in reply to FormerMember

    Hi. It’s ACC Support UK. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi. Have you had surgery now? 

  • FormerMember
    FormerMember in reply to FormerMember

    Not yet. Im going in Monday for 3 days for tests and then will have it out in the near future. I’m worried bout the experience of the surgeon considering it’s rare.

  • FormerMember
    FormerMember in reply to FormerMember

    Yes. You definitely need to be at a specialist centre for this thing. There are several in the country and of the surgeon does not have experience he should refer you to one. Where do you live?

  • FormerMember
    FormerMember in reply to FormerMember

    I’m in Essex and have been referred to st. Bartholomew hospital in London. What do you think?

  • FormerMember
    FormerMember in reply to FormerMember

    Hi all,

    Wondering how things have gone for you yenoom since your referral?

    I've recently been diagnosed with a large malignant mass suspected to be from the adrenal gland and am awaiting a biopsy to confirm this, however I've asked to be referred to st. Bartholomew for surgery as its meant to be the best for this rare type of cancer.

    Hoping your referal and recovery is going well, be great to hear your experience and learn anything i can from you before i go down a similar path.

    Stephen 

  • FormerMember
    FormerMember in reply to FormerMember

    Hi,

    I had it out end of September. It was a low grade ACC so glad I’ve had it out. The team there looking after me were and still are fantastic. Definitely in safe hands. 

    Please do not biopsy the lump until you have been seen by adrenal experts. The tumour can spread if so. 

    Where are you based?