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?
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
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!
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
Hi. It’s ACC Support UK.
Hi. Have you had surgery now?
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.
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?
I’m in Essex and have been referred to st. Bartholomew hospital in London. What do you think?
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.
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?
Thank you so much for your quick reply.
Pleased to hear you've had it out and the team are looking after you.
I'm based in Peterborough. It's been discussed to potentially go to adambrooks in cambridge but ive requested that my gp refer me to st barts and he agreed to write to the relevant people.
The specialists in Peterborough did seem very unsure and told me its a complicated diagnosis which is why they mentioned a biopsy.
I had already read that a biopsy can spread the cancer and my insticts were to get a 2nd opinion so i appreciate you telling me that as i know now to keep pushing to be seen by adrenal experts first.
Feel free to to tell me more about your experience and thanks again for the advice.
It’s good they’ve agreed to a referral. Make sure they do this ASAP. Once my referral was made I received a phone call with a few days from Barts to book in a stay of about 5 days to assess the mass, lots of blood tests, urine samples etc and to see the specialists. Once all results were collected my surgery was booked in about 6 weeks after. I was very lucky that my tumour hadn’t spread and was completely removed. I still have to have regular scans to make sure this is still the case and I have been reassured that it’s unlikely to do so.
The surgery itself wasn’t too bad, the surgeon Parvanta, was very good and made sure pain was minimal after surgery. You’ll have to have a short stay either in intensive care or high dependency ward which is standard (I was in high dependency but had no complications).
if there’s any specific questions do let me know.
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