Amazing! I went to my dentist with a swelling in my gum. She assumed an infection and so did I. 2 weeks later and no response bothered me. Went back to my dentist, and she prescribed another 2 weeks ABs.
Anyway I went to a periodontist who told be within minutes that what I had was a tumor!! A what??!!!! I said -I'm pretty sure it's a tumor - he said. It's a nightmare in the making for me!! I got referred to the top oromax surgeon in Canberra and he recommended a mandiblectomy and full next dissection after the PET scan said there was activity in my neck. It wasn't true, I had no cancer in my neck but it was too late by then. I woke up from the survey with my jaw dissected and my neck totally cut. I thought I would choke on my own saliva and the first nurse who spoke to me gave a lunch tray with sandwiches - I couldn't swallow, spit let alone eat and they gave me sandwiches. There was a nurse who wanted to wash the blood out of my hair and I was just focused on staying alive in the next 10 seconds and she sat me up in my ICU bed and poured warm water and shampoo over me while I'm scared I could die at any
Minute. I'm sitting on a bed with tubes down my throat, in every vein, catherised and this mad woman is washing my hair and I'm sitting in a large puddle of bloody water that she had filled my bed with. Is it just me or is this crazy. I was exhausted by this process after major surgery! It was ghastly. Anyway I recovered and my surgeon assured me I was okay. 9 months later
I told my surgeon that I had a lump in my jaw. He sent me for a test and that said i had fat necrosis but my surgeon was not confident about it and asked for a biopsy. It was a tumor- so a reccurrence!! Since then I've had chemo. Radiation ( horrible ) and every awful thing since, I'm sorry but it is hard and no one will tell you how awful it is. Feel free to ask me and I will tell you. It is doable but U need a strong mindset.
I am feeling strong and well and I know u can do it just like me, you have my respect and love as a fellow traveller, feel free to contact me and ask me whatever u want to know

My dentist didn't recognize my tumor either, but then it was a tonsil that was cancerous, an area I think most dentists could miss.

Dentist didn't recognise Kris's either. I specifically sent him to the dentist a I was concerned. His tongue was pasty white and deviated markedly to the right. A sign of Hypoglossal nerve palsy. The dentist didn't comment on a thing.
Needless to say we do not see him anymore.
Many dentists are ignorant of oral cancer signs .
Tammy

I went to 5 doctors and if I had listened to the first 3, including a well respected MO who SHOKE MY HAND AND TOLD ME AND MY WIFE "CONGRATULATIONS, YOU DON'T HAVE CANCER.", I would be dead today. It was only after doc #4, an ENT took a FNA did someone proclaim "you have Stage IV SCC."

My mom's doctor said, "I don't know what that is but it doesn't look like a tumor don't worry".

Wow - I'm not surprised at your dentists lack on knowledge that seems to be the standard. Though I must say during my journey I'd had two on the ball dentists, and one not so with it ENT. I think it's all about the individual person. Whenever dealing with medical professionals I respect what I hear about a dr. But also accept that one - they are human and yes it's possible that even the best make mistakes, and two - I am my best advocate, so in order to do take care of myself I needed to educate myself. So that's what I'm suggesting you do. This is a life threatening disease just the word cancer is terrifying - so knowledge is power and will allow you to make educated decisions from here on in. Plus this forum is an amazing resource for support and information,

That said, based on what you've described it sounds like a poorly differentiated cancer, and it's also likely non HPV related (this assumption is based on location) so despite what you may think the surgery was the proper option (first time out of the gate) however with that invasive a surgery I would think they would have - followed through with radiation and chemo right away. I suspect they didn't because they thought they got it all and there was no nodal involvement, This is a hit or miss presumption with this type of cancer. I often tell people who've been treated with only surgery that they should keep a close eye on their mouth and neck post op if they are not going for follow up treatment, because this cancer can be so pervasive and insidious. Thankfully some do escape at an only surgical option but more often than not they end up with a recurrence such as yourself.

So unfortunately yours is a familiar story. The decision to not do radiation is a judgement call by the dr., to me the potential for a recurrence is based on a few things, skill of the surgeon, differentiation of the cancer, lifestyle and overall health.

The nurse during your first post op experience was an idiot and negligent, most people post op with this type of surgery are not allowed to eat for several days depending on the extent of the surgery at least two or three. So sandwiches were likely a seriously bad option. (I know the menu is often determined by the hospital/dietician, etc.. But someone messed up, she should have caught it.

(Frankly it sounds like she went to the same university my nurses did - they were brutal)

Anyway, kudos to you for getting through this. Now try to heal.

My tumor was so large it was literally crawling out of my throat and pushing my (now melted by radiation) uvula to the side. It could have smacked the dentist in the face and he still didn't know what is was!

Hi Tony, I guess I expect a dentist to be familiar with oral tumours in the gum, mucosa, tongue and lips- I'm not confident that areas beyond there will be in their focus. My dentist is from Vietnam and I know she spends at least 2 months every year donating her services to the poor in her country and statistically Asian men have a high rate of oral cancer so I was surprised that she didn't recognise a large tumour in my gum. When u googled it after the peridontalist said what he thought it was, the pictures were glaringly obvious!! Classic oral tumour.
Anyway after a second round of surgery with chemo and 35 radiations I'm recovering well but as I said you need to be fairly tough minded about your experience and keep focused on moving forward. Oh and not be too knocked back when your employer calls you in off sick leave to make you redundant :)) amazing?!!
How are you going?? What is happening for you and how are you travelling at the moment??

Hi Tammy, I'm an Ex-pat Kiwi living in Canberra and have learned you have to be assertive about your health to get any action. I'm grateful for the care I've had but a conservative treatment line has allowed a second tumour to get to a large size before anything was done and I'm now at the pointy end where they have t
done the second surgery, NOT had clear margins and had to go thru 6 rounds of cisplatin with 35 radiations in the hope it will stop the disease. PET is scheduled for end of May so - Who Knows??
Sounds like Kris is doing well- long may that be so
Best regards
Penny

Hi David,
You are living proof that not every health professional has any idea what they are saying. Great result for you and no question that exercise is a key factor in recovery - awesome effort! I'm a regular bike rider and am slowly increasing my time- radiation was exhausting as was the chemo and I still have a peg tube in- very uncomfortable. We are travelling to Europe in August this year and I look forward to being fit and well for it
Kind regards
Penny