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Adrenal Cancer: Anyone else have this?

Cancer | Last Active: Dec 18, 2022 | Replies (61)

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@caradivs

Hi @1kjewels I have just been diagnosed with this rare cancer I am only 32 and in complete shock. I had an 8cm tumour removed 6 weeks ago and I am starting mitotane next Wednesday. I feel so alone aswell as it’s so rare and all literature looks so bad. I guess we have to make our own and try to stay as positive as possible - I must admit I am struggling thinking about what’s to come

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Replies to "Hi @1kjewels I have just been diagnosed with this rare cancer I am only 32 and..."

Hi @caradivs !
I’m so glad to talk with someone in the same
position (more or less)! I agree, it’s almost impossible to find anything positive on this type of cancer and it’s really frustrating to find that there isn’t all that much research being done and the drug of choice is from the 1960’s! It seems just crazy to me
Have your doctors suggested any alternatives yet such as clinical trials , etc.? Let me know how you do on the Mitotane. I have been tolerating it quite well and have had my dosage increased once so far. Waiting to hear back on a blood test to find out of they will be increasing it again. Fingers crossed that it works!
Good luck to you!

Hello. I am having my adrenal gland out in a few weeks. I am very nervous and have one told 3 people. I am not sure what to explain at all.