A blog about my journey and experiences with Adenoid Cystic Carcinoma

DIAGNOSIS / WAIT, WHAT?


I am having trouble writing this section. I don't think I have fully come to terms with the fact that I really do have cancer. It feels incredibly surreal and even though some days it is all I can think about, my brain can't truly marry the idea I have of myself and this horrible life threatening illness. In my mind I am still healthier than most of my friends, not to mention way too young for this to be really serious.

I know it sounds like a bad joke but I received my cancer diagnoses over the phone. It was a few days after my biopsy that I phoned the doctor (who performed the procedure) to ask if it was normal for one of my stitches to come loose. The receptionist told me he was busy with a patient and would phone me back.

When the phone rang I was outside helping my mother with some gardening. I ran in to answer the phone. Half out of breath I told the doctor about my stitch. He quickly dismissed it as normal, but then proceeded to tell me that he had some bad news. The biopsy confirmed that it was indeed cancer.

By this point I was already in tears. Everything he said after that went over my head. I know he tried to explain what would happen next but all I remember was asking if he was sure that I really did have to get more surgery done (how unprepared I was for everything that came next).

I walked out and screamed/cried to my mother that I had cancer. We then just cried and held each other for a really long time. I then phoned my significant other and asked if it was possible to come home early from work. When I eventually had that conversation I felt much calmer and assured that everything would go well. I felt better even though I suspected the worse.

My first major concern was not about health, but rather about money. How would we be able to afford it all? I think I didn't know how to process the true implications of the news. Instead I started worrying about something smaller, more manageable.

The days following that horrible phone call I experienced a roller coaster of emotions. One minute I would be completely confident that all would go well and the next I was imagining myself on my death bed. It was only after I spoke to my new surgeon and he explained exactly what would happen next, that I felt more at ease. I have never met anybody with the ability to make having part of your tongue, cheek, mouth floor and jaw removed sound like a minor procedure. Now all I wanted was for this horrible tumor that could be growing and spreading by the minute to be remove. The hard part was having to wait for more than a month for this to happen.

List of possible questions for your doctor:
  • What is the operation (procedure) that is recommended?
  • What is the surgeon's experience with this procedure?
  • What is the reason that this procedure is necessary at this time?
  • What are the options if this procedure is not done?
  • When do I need to make a treatment decision?
  • Who will be part of my health care team, and what does each member do?
  • Who will be coordinating my overall treatment and follow-up care?
  • What can I do to get ready for surgery?
  • What is the anticipated outcome of the procedure?
  • What are the specific risks that this procedure involves?
  • What about a second opinion?
  • What is the recovery process after this procedure?
These questions were obtained from the following sources:
medicinenet.com
cancer.net