Hi Everyone

I was diagnosed with an early stage SCC left cheek at the end of May. I was immediately referred to 'The' head and neck surgeon who could perform my surgery with the best outcome. My surgery was June 30th. Cancer was removed, left neck dissesction removed 21 nodes without complication. It took 4 weeks to get the final pathology back. All lymph nodes were negative for cancer. All margins were clear. One margin was close but my surgeon was still on the fence about radiation and whether the benefits would outweigh the risk in my case. He presented to the tumor board and they also were torn about radiation for me. He then sent me to a radiation oncologist. That Dr wanted to speak to my surgeon before giving me his opinion. Meanwhile time is going by between these phone calls. I finally track Dr #2 down (he was sorry he did not call me but he got busy) and he says after speaking to my surgeon he would not recommend radiation. So, I had 'The' head and neck surgeon, the tumor board, and radiation oncologist unconvinced about radiation. I figured they were experts, see cases like mine all the time so best to follow their advice. Fast forward to the 3 month PET where a lymph node lights up. Probably nothing to worry about per 'The' head and neck guy but we will biopsy anyway. Go for a FNA and of course that node, along with others, is positive. Surgeon also biopsies inside my mouth where I had 'granulation tissue' from surgery. That comes back positive too. End of Oct I have another surgery, fibula free flap, two hours longer than expected and needed 2 transfusions. I insisted on treatment at the cancer center with the best reputation near me. Trying to get insurance to pay for proton but in the meantime starting IMRT tonight, chemo tomorrow. Chemo wasn't even an issue to be concerned with in June. I know it is cancer which is totally unpredictable. I get that part of it. But these doctors need to not take chances with people's lives either. Even if it looks like a 'well behaved tumor' (that is how they described mine) they need to be cautious and recommend treatment!!!! Patients go to them for help. Anyway, I know rads will be tough. Any advice there would be appreciated. I am trying my best to be hopeful but it is so hard. My mom was just diagnosed with ovarian cancer too.
Thanks for listening. Venting helps.

Hi Sue

I am so sorry to hear all this but glad you reached out. Cancer is such a fickle beast. I went thru radiation of neck and tongue in June-July this year. It was rough but manageable. Surgery was more intense in my opinion. Radiation was more like a long slow burn with completely jacked up taste buds. I am about 5 months recovered from radiation and I can eat almost anything now that is not spicy. But, i am still recovering and they say all that will come back. I have some minor dental issues (cavity and root canal) that were likely there before and got accelerated from radiation.

The key to radiation is eating and keeping your weight. I also exercised every day, some light and some heavy, but everyday. I think that helps but you have to offset it against weight loss and pound more calories to support it. In the end, i was always within ten pounds of my start weight. Thrush was one of my bigger issues. Stay on top of that as it is hard enough to eat without thrush.

There is lots of advise on what to eat as the list of what you can stomach gets really short. Let me know if you want some ideas with that. Also, lots of different treatments for exposed skin and inside your mouth that can help. Buy or borrow a vitamix (or similar) if you don't already have one. Makes hiding calories in liquid meals much easier.

Just a start but we are here for you. Please keep us up to date. Stay safe and keep the faith.

Nels

Hi Sue,
I'm sorry to hear you've had terrible experience with your medical professionals. Radiotherapy is tough, you ache, your mouth is sore, you get ulcers, you produce a ton of mucus, your hair falls out at the back of your head, you have a weird taste in your mouth for ages (mine was salt), yet you can get through it. It feels like the side effects are forever, but they are not. A couple of weeks after you have finished treatment, you start to notice small improvements, then you get dry mouth, but that doesn't stay for too long. Each day gets a little bit easier, the ulcers dry up, the weird taste goes and you can start to taste things again.

We're here to help you through this.

ah well, in retrospect, should insist on rad, if not chemo. unfortunately no one knew at the time