tonsil cancer afraid..

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RE: tonsil cancer afraid..

by Dave320 on Sat Jun 29, 2019 05:44 PM

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Kevin

You have reached a site where you will get valuable information.  As many have said, this type of cancer is very curable, but depending on the treatment, can have many side effects. My suggestion is, if time permits, check out all of the options as far as treatments.  

I had tonsil cancer over 2 years ago. removed several lymph nodes, tonsillectomy, radiation and chemo. 7 weeks of radiation and 3 chemo, although I only had 2 because I got too sick. My cancer is gone and the prognosis is good and I thank God for that.  I live in Minneapolis and have met 4 people at a local support group that had very similar cancer. They all got into a clinical trial at the Mayo Clinic. Instead of the 7 weeks of treatment, they did 2 weeks of of chemo and radiation. 2 radiation per day for 10 days and 2 chemo total. Also, the strength of the radiation was half of what I received.  That being said, it is a lottery to get into, and the success is not yet known, but the side effects seem to be a lot less severe. So just know all of the options. Radiation has also improved the last few years. Mayo has a proton machine that is much more precise. There are quite a few places across the US that have this available.

Good luck on your jouney. Take a deep breath, find a support system with friends, family and a group like this, and everything will be ok. I joined a local group called SPOHNC (Support for People with Oral, Head, and Neck Cancer). Many local chapters accross US. Ours meets once per month and has been awesome during my journey.

Dave

RE: tonsil cancer afraid..

by Dlynn1210 on Sat Jun 29, 2019 09:21 PM

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I had walked the walk with Kevin from the beginning as someone did me. We communicated a lot throughout the years mostly via private replies. He fought a hard battle after it returned but he suddenly stopped responding to my messages some time around Dec 2017. I msg a few times with no replies and in my heart I knew why. For others who visit this blog - tonsil cancer is somewhat different from other head and neck cancers (esophageal, tongue, etc). It is generally smokers and/or drinkers and more often men that are diagnosed with it. Dr. Citrin at CTCA always said I beat all the odds - I had never smoked or drank and I’m definitely a female. I also am not HPV positive. I was treated in mid 2007 and had my tonsils removed soon after. A scan in Nov 2007 (after treatment ended) showed I was cancer free and I am still cancer free 10 1/2 years later. There are two types of radiation - IMRT and TOMO - a third is recently surfacing. I had TOMO fragmented radiation which is more precise. As the head of radiology told me for a moving organ she would recommend IMRT but for tonsil cancer she would recommend TOMO which also salvaged my salivary glands. Fragmented meant the treatments were divided up into two doses a day splitting up the hit we take in half into two doses. I was not in a trial but treated at CTCA in Wisconsin via their regular treatment for tonsil cancer. They have both types of radiation machines unlike many facilities that only have one type. The hospital where I was diagnosed only had IMRT. After a great deal of research I chose CTCA because of TOMO - and I will forever be grateful to the head of radiation who told me to go with TOMO. She didn’t work at CTCA but Siteman Cancer Hospital in St. Louis - totally independent of my local cancer center and CTCA. I checked into Proton Therapy vs TOMO and found this very informative - from the American Cancer Society’s site - https://csn.cancer.org/node/309607 .
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