prognosis stage IV

Noellesmom said:

agreed

Statistics are just statistics. 

 

Had a personal friend end up being our Oto Onc Nurse. She spit it right out to us. 

Data on the internet is Bullcrap. Outdated and anyone can put it there.

Rob is Stage IV tonsil, lymph node involvement (several). No dissection. We are in the best Hospital in our state with a Comprehensive Cancer Center. University of Michigan. Our OTO Onc has been sited in many journals of medicine and stated back in 2008 that Oral Cancer casued by HPV is an epidemic. But being HPV+ does not change the treatment plan just the survival rates are better.

Survival rates are higher than ever. cancer patients are improving everyday. Protocols are based on individuals and we know that not one person on earth will have the exact same cancer in the exact same place. 

Not one of of docs bs'd us. They laid it out there and did thier jobs. We never questioned, except dissection, which in all the trails they have done over 20 years they found no significant difference in do it or don't as everything is getting fried with the radiation. 

I believe in my heart that Rob is going to be cancer free for a very long time and I have our team to thank for it. We will be forever greatful to them for life.

I think you are on the right path and have some great docs working for you. Just remember doctors do not like to lose and virtually will stop at nothing to help you. They want people t win this war or they wouldn't be there.

Sandy

jackflash22 said:

staging.

I guess the nearer I get to the radiation dates the more nervous I get and search the web for info. I started with a swelling in my neck between my ear and chin. I hadn't noticed it before the 6th April. My niece urged me to go to the docs to get it checked but I didn't go for 2 weeks hoping it would go down. I had my granddaughters wedding on the 4 May so didn't tell anyone I was going to the docs to get a lump checked out. The result of the fine needle biopsy came back as signs of malignancy. I hid my lump from my 3 kids and grandkids with my hair. Then I had to have a proper biopsy with an overnight stay in hospitlal because they were going to take out my tonsils. I woke up still with tonsils, what they had found was a small primary on the base of my tongue ..right side, and secondary cancer in the nodes. My family by then knew and were very supportive, my daughter or grandaughter was with me every app't. I had a neck dissection... 9/10 hour op....and they took out the tumour with a margin and repaired my tongue with my cheek lining. On my 6 week assessment they said they took out three cancerous nodes and more clear nodes down to my jaw line. I have no swellings on the left side of my neck. The tongue had a clear margin but was very close to the edge. I was then told I was to have 6 weeks of rad 5 times a week and a PEG fitted . Teeth weren't mentioned (I picked that that info up on searching the web by putting in field names). I found on the web they dont update info as much as they should as some I was reading was years ago.  When I had my assessment I was also getting my mask fitted and made and ct scan with markings so I took 3 diazapan to calm me having the mask fitted and also my great grandaught was with my granddaughter in the room with me and she was playing boo with the doc behind a chair (shes15 months old) so I didn't take a great deal in. I have an appt to fill in the blanks on the 11th. I have been bombarded with letters for appt all through Oct to Nov... 7 in all and then some. I'm not an organised person so I just stuff them in a file and write the dates in my little book. I do get reassurance from you all when you say the right things. I feel I want to bury my head in sand till this is all over but a morbid part of me makes me search for everything I can on tongue and node cancer. A lot of it I dont understand. In America it seems your more informed on your stage cancer and are given names for it like stage IV or IIIV none of this I understand. I read whole lists of the treatment you have had with code and stages and such, all gobbly **** to me. I just want to know from my surgeon is what chances I have to get a cure. I haven't been told I will have to have chemo that will probably be my next shock after the rad.. I'm very grateful for your reassurance and take some comfort from it. I'm probably reading things in your treatments that I dont understand and take it that you have had more than one cancer. I think once I have been having rad for a week or so I will accept that theres no gain without pain and accept everyone is doing everything they can to make me better. I will stay with the survivers and report in how I'm doing....

Did you have any symptoms at all?  Well wishes for you!