Thankyou so much for your comments, this really helps me so much. I'm trying so hard to be positive. It is really hard for me. I'm used to my life going 100mph, which is probably the reason I'm in this place now. I need to figure out how to relax myself, something I'm not very good at to begin with. Thankyou for your support. I really need this, and I'm sure I will need it even more as I go thru this journey. Thankyou, Thankyou, Thankyou. You are so kind and thankyou for helping me.

Hope you feel better after the Tumour Board meeting. Once a plan of action is in place people generally feel more positive. Don't be put off by the tales of radiotherapy hell. It can be miserable but in the big scheme of things it goes by more quickly than you think and you can document here how you feel. Everyone will understand and will encourage you.

My teeth are a problem after RT but then again I'm 68, they were bad to begin with and RT has just accelerated that process. Yours might be fine.

I don't know about the lymph nodes, just that you need to see the treatment process as beneficial in spite of the side effects. I meet people here and in person who are living well after having this cancer! Your job sounds interesting but I think you will need to make huge allowances for treatment. My RO said she usually recommends four months off work. Maybe you can figure out some flexible working hours??

Angela - just a thought about your concern re work hours - Perhaps there's a way you could work from home? My son is a software developer and he works from home, has meetings online and only occasionally makes the two hour trip for the face-to-face meetings.

alittlescared,

Try to live in the moment for a while. No one can predict with accuracy anything in the future. You will find throughout this journey that no amount of planning will direct the course of treatment and recovery. That was the hardest part for me. You will adapt and learn to just take it as it happens.

I was commuting almost 500 miles each way every week and managed to conduct business via teleconference even during chemo. That lasted until my voice went away for a couple weeks during the end of radiation. I was back at it as soon as the voice cooperated and 7 weeks later I was driving to work. I had a few medical devices and lots of supplies so I couldn't fly. I drove there Sundays and drove back Fridays.

Best wishes with the tumor board tomorrow.

Four lymphnodes - I would be counting on chemo - and if not I'd be asking WHY in big bold letters. Compared to rads it's not too bad and it softens up any residual cancer so the rads can do more damage to it. Hugs!!!

You all are such a help, I don't know what I would do without you. Today the Dr called, and told me 7-71/2 weeks of rad, and Chemo. Not sure how much yet, he said either every week, or every other. did not sound good to me. The CCC we went to is 3-4 hours away from home, I really need some advice on where to the the Radiation and Chemo, they have a lodge there but because I have 4 children trying to work out care and school help is going to be difficult. But if I get organized I can probably make it happen with multiple friends and family members. Not sure about me though, away from home, will this make it harder because I will not have the day to day stuff to keep me busy? But I would be around other cancer patients, so maybe this would be good, maybe not. They do more than just head and neck there. Then I want to make sure I'm getting the best care I can, so I can be around later for my children. Not sure what to do. ???? There is a CCC here locally, we just did not go with them originally because had no referrals to the Drs, and didn't know enough about them. Both of my surgeries went well at the CCC I been going to, and I trust them. They seem ok with transferring me so I don't have to travel. I know is it different Drs getting involved for the Rad and Chemo, but should I be staying with the same team, or does it matter since they are switching me anyway...I'm stressing over trying to make the right/best decision.

The CCC I was going to only does Cancer. The one I'm switching to does Cancer, but the hospital does other things too. So it leaves me unsure. The company has a reputable name, but I don't know that I should be choosing based on that. We just found out, who the Drs will be here locally, so we are going to try to research the Drs tomorrow online. I don't know who the drs would be with my current CCC, but I know that is all they do. I live in Florida in the Jacksonville area. I'm not mentioning the names of the hospitals, because I was thinking I'm not supposed to on this forum. If I can, let me know.

Also, how soon after surgery, did you start getting radiation and Chemo, seems like they are wanting me to move fast. And ready for me to start right away, it has been 3 weeks since my surgery date. Have I healed enough to be starting radiation, will it interfere with my skin being able to heal? I'm doing well from the surgery, but my mind is so busy being concerned about the Rads and Chemo that I cannot think of anything else.

Thankyou so much for your help.

Others will know more but I had rads four weeks after surgery. In fact a little under 4 weeks because I had a second top-up surgery. It really wasn't a problem in that respect, even at my age. The wounds had healed sufficiently to take the rads and even though the scar on my chin and neck had extra radiation, it seemed to be fine.

alittlescared, I can see the anxiety and fear of the unknown ramping up and that's part of this journey as well. Maybe taking out the blank sheet of paper, writing down all the options, listing the +/- of each might help you organize your thoughts and make the best possible decision for you and your family. You seem to use that type of problem solving method and it would also allow you to calm the mind down some.

You have listed some great points in making perhaps one of the biggest decisions of your life. You are putting together your personal support team and it sounds like you have really out some thought into this aspect as well.

As far as facilities, my personal opinion is a teaching hospital is the best option, as more research is done and they tend to stay more current and aggressive in terms of treatment. However, I've seen people go many types of places with similar results.

I know a 72 year old lady with a terminal husband with many issues and she opted to go to the closest facility after her surgery because of her husband. Her surgery was done about 2 1/2 hours away and was selected for the reputation and skills of her surgeon. She is doing excellent. She had an ear removed, her ear drum and ear canal removed in one side, then the ear re-attached. Her radiation started 3 weeks after that.

You trust the medical team and that's also a plus, even though you will be passed off to a different group, there is some level of comfort in that, also.

I don't know the ages of your children but you would know what you want them to endure. That could weigh in to your decision. Either way will be tough on them just like it will be for you.

Be sure and step back from all this and breathe from time to time. There is nothing easy about any of this.

After a neck dissection, which I'm more familiar with, they usually like to start treatment within 4-6 weeks, depending on healing, so it doesn't give cancer a chance to repopulate. As far as healing, I had a neck incision from surgery that wasn't fully healed, but my ENT said radiation will heal it up faster, and did.

Good luck.

As I understand it the CCC tumour board does a similar group diagnosis to the panel I had here. You get ROs, MOs, ENTs, speech, diet, dentists, all looking at your scans and poking and prodding you and working out collectively what the best course of treatment is. Is that the case?

If so, after that my treatment was relatively straightforward. A tough time, but not something that required the top specialists. As long as the doctor I was seeing at the time had my file, things went ok.

At the risk of oversimplifying your situation, if I had the logistic challenges you do, I'd be looking at whatever facility is closest. Cisplatin is Cisplatin and if a hospital has a million dollar radiation machine they will have people who know how to use it. I wouldn't be unduly concerned about the handover.

You do seem to be asking the right questions, I hope you can put your mind at ease soon. Try not to stress, take it one step at a time. Radiation and chemo are tough but very doable, and you have plenty of friends here with lots of support and tips to help you through.

One more thing. Can people change their names after they register?

Alittlescared, Youngandworried and Dazedandconfused walk into a bar...