Hi Paul,
A few observations from the information you've posted so far, and some questions:
First and above all: I could not advise you more strongly to AVOID GOOGLE LIKE THE PLAGUE. Others on this site will say the same, almost without exception.
Your information MUST come from YOUR specialist doctor/s. Even my GP at the time gave me wrong information - told me I was stage 3 of 4. WRONG! No, sub-standard information is not just the way things work in the public system. Communication can break down in any system, any time. You just need to advocate for yourself.
You would be a CAT A patient (maybe a different name in states other than VIC), and resources will be made available to you. You are entitled to seek explanations, and they must be provided. You are entitled to question stuff that doesn't make sense, and again, explanations will be provided. If you cannot get an explanation, my advice is to calmly and politely escalate until somebody in authority is found to provide the information. Sometimes they don't have the answers, but when that happens, they should tell you.
If you are calm, polite and explain yourself clearly, the clinicians will treat you with a great deal more respect, and will actually warm to your desire for knowledge.
All of my advice comes from my own experience. I won't bore you with the details of those experiences unless you ask me to. I'm happy to explain if you ask me.
1. Is your tumour a SCC (squamous cell carcinoma?
2. Do you know if there has been any spread into the lymph nodes? My cancer had spread, but I still beat it.
3. Do you know what your official staging is? For example, mine was T2N1M0. The T N M will be the same, with different numeric values in between.
4. I too was a non-smoker, a very light drinker, and HPV negative. You're right, the pool of people from this demographic is getting larger, and they don't really know why at this point.
5. You need to make sure that all your treating professionals are aware of your pre-existing anxiety, and any other mental health issues (depression, etc).
6. This phase you are in now, between diagnosis and a detailed plan, is BY FAR the worst period psychologically of the whole process. See your GP and obtain some medication to get you through this phase. I was given valium - worked like a charm. Discuss with your doctor.
7. I too, wrote myself off. I didn't tell anyone at the time. I thought that the treatment might work initially, but that the cancer would eventually come back and I would die. Then, out of the blue one day, about 2 weeks post-diagnosis and about a week before surgery, it hit me: what if they take it out, and it doesn't come back?
8. My major operation was Feb 5, 2012. I am now officially CURED.
9. I have few minor side-effects, a far better outcome than predicted.
I'm nothing special, Paul. I engaged with my clinicians, took their advice, asked questions, challenged them to explain, reported all information to them, and carried out my end of the plan. They did the rest.
You can do it, too.
Regards,
Mark.
