Squamous Cell Carcinoma of the tonsil

nancytc

tonsillectomy before chemo radiation

Hi!

I had a Tors Robotic procedure (after a SCC diagnosis Stage 4a) which removed 2 sets of tonsils and resected the base of my tongue to find the unknown primary cancer. It was brutal. I remember it being excruciatingly painful and on day 7 post surgery I had a bleeder which was very scary (tonsilectomies are dangerous on adults). My oncologist delayed my treatment plan an extra week to 3 weeks(33 rounds of radiation and three megadoses of Cisplatin) to allow me some extra time to heal.

Oral Care is extremely important. Salt/Soda water rinses constantly. Flossing. Brushing (extra soft toothbrush). Flouride treatments on the teeth. Just checking that your team is on these things. Later you will most likely need some magic mouthwash to help you keep swallowing. Swallowing even tiny sips is VERY IMPORTANT as your swallowing muscles atrophy very quickly and you do not want to lose your ability to swallow.

Also, do you have someone around to give you support and care through your treatment?

Best,

Nancy

Radioactiveraz

Bigjnelson said:

New Diagnosed

9 lives, how are you doing? Did you do the surgery? I have the same thing going on now and would like to talk with you. My email is <Content Removed by CSN Support Team>. 

New diagnosis

hi I am 6 months post radiotherapy for tonsil cancer HPV 16+ in the U.K. 2 chemotherapy 35 rads 

I have a blog www.radioactiveraz.wordpress.com hope it helps

 

just remember we are all different and react differently 

hazel

MindOverMatter

Bigjnelson said:

Mind over matter

How you doing? Any advise you can give me.  I had a tonsillectomy both tonsil removed and one lymph node removed.  Cancer was in one lymph node and one tonsil only.  Pet scan showed no cancer at the time of starting radiation so chemo was Canceled.  The surgery was a barbaric surgery and it was a terrible recovery.  Today was my first day of radiation and I’m looking to see if anyone has any advice out there you can email me <Content Removed by CSN Support Team>.

 Thank you for your support 

Hi Bjnelson,

Hi Bjnelson,

 Sorry about the late response,  I haven't been on the site for a while. I have had a CAT scan after the 35 radiation treatments and that came back clear in September of last year.  I couldn't get the PET Scan since Aetna wouldn't pay for it. This site is full of information on what works.  Are you looking for something specific? 

Thanks,

Mind Over Matter

possumtrot

MoreThan9Lives said:

Newly diagnosed...............

I'm 56 yrs old. I VERY recently was diagnosed with squamous cell carcinoma of the tonsil. I had a CAT scan and a PET scan. Both scans were clear and showed no spreading. My HPV test came back positive this past Friday. I spoke to the radiation oncologist this morning (the day after the PET scan) and I'm waiting on a call-back from my ENT specialist/surgeon. I was presented with the choice of initially having surgery (in the hopes of avoiding radiation/chemo) while being warned that I may STILL have to have radiation and chemo after surgery. Of course the other choice is to begin treatment with radiation and chemo while being warned that I may STILL have to have surgery later. I'm in a TOTAL quandry as to what to do. My radiation Doc told me that in my shoes he's not sure as to what path he would start with. So..............I'm STILL waiting to speak to my ENT to get her perspective and insight. At the moment I feel like I'm gradually coming unhinged as I ponder all of this. What should/could I expect from sugery? From radiation? I've been told that the surgery is painful and the recovery is rather long. I was told that I wouldn't notice any affects from the radiation for the first 2 weeks but then it would begin to REALLY suck. Can anyone who has been through this PLEASE give me some insights! thank you.

 

MoreThan9Lives in Baltimore

I had left tonsil SSC like

I had left tonsil SSC like you and had radiation and chemo only. I was never really offered surgery, and a surgeon friend told me NOT to have surgery. I have a dry throat with a "wooden" feeling neuropathy, some altered taste and some attention deficit from the chemo.  But I'm 18 months without recurrence and believe I'm cured. And I'm used to the side effects...radiation always leaves a mark. I hope your treatment went well and good luck!

ERomanO

robh said:

Hey, you made it 15 years. Good job. Your rock. life is normal. Interesting. My kids are now all adults and my unborn is now 14. WOW am I lucky. I love life, I love my family. So glad this went well. Great job Bob.

I love that reply to yourself!

Congtratulations on a terrific run!  May you enjoy 15 more... and 15 more... and so on