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Dlynn1210's Message Board Messages

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He hasn’t posted since Oct 2018.

RE: tonsil cancer afraid..

by Dlynn1210 - June 29 at 9:21 PM

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 .
Hi Tracy Every type of cancer is different although head and neck cancers do have similarities. Radiation and chemo are an insurance policy that greatly lessens chances of a reoccurrence. I was diagnosed with tonsil cancer in 2007 but can remember when I was first diagnosed. I had to make tough decisions about how I moved forward when I felt like a deer in headlights. The first oncologist I spoke with was at the hosp where I was diagnosed which was 30 min from my home. They recommended both chemo and IMRT radiation. My husband suggested getting a second opinion at Cancer Treatment Center Of America (CTCA) which was 2 1/2 hrs from our home. I made an appointment hoping they would say only radiation was necessary rather than both but I found that both hosp recommended radiation and chemo. CTCA instructed my dentist to make ‘guards’ for my teeth to protect them during radiation and then recommended TOMO radiation. Both hosp claimed that ‘their’ type was equally good. CTCA recommended radiation twice a day which meant staying in a hotel Mon through Fri - an added expense. I found that a cancer hosp in St. Louis had both so called and asked to speak to the head of radiology. I asked if she or a loved one had tonsil cancer which would she choose. No hesitation - TOMO for tonsil cancer or of any non moving organ and IMRT for cancer of any moving organs. I went with TOMO and the best decision I ever made because I later learned that TOMO salvages our salivary glands while IMRT would not have. I have excellent saliva production today while those who had IMRT have diminished saliva production. I had a few teeth in the back pulled prior to treatment at my oncologist’s recommendation but still have the rest of my teeth 11 years later. I have some side effects from radiation but nothing I can’t live with. I’ve been on Cancer Compass for 11 years and only known 3 people that did not survive head and neck cancer - and it was a reoccurrence for all three. A few had only radiology and did fine - it is a decision that is not an easy one to make but one only the patient and the care giver can make. I’m sure someone who was diagnosed with tongue cancer will respond with more insight than I can offer. I wish you all the very best! Diana

RE: Tonsil Cancer?

by Dlynn1210 - March 14 at 10:44 PM

Now you can rest assured it is not tonsil cancer. I always like to point out one tonsil is much bigger than the other rather than just slightly swollen. My left tonsil took up half my throat whereas my right tonsil was so tiny it appeared I didn’t have one. I’m glad to hear you are working on a plan to quit smoking. I lost my husband to lung cancer when he was only 58 years old so I often encourage others to stop smoking. He used to respond to my frequent requests to stop smoking by saying “Everyone has to die one day some how”. Shortly before he passed away he said “I didn’t know it would be so painful.” And he was a tough Marine - once a Marine always a Marine! Diana
Correction - I saw the cardiologist on Mon, ENT on Wed, and in surgery the following Mon. Diana
I totally agree with David! I was diagnosed in 2007 with tonsil cancer and saw a total of 5 GPS - the last one even mentioned my having one tonsil much bigger than the other but didn’t sound concerned - only curious. I started having very mild chest pains and went to see a cardiologist. She ordered a stress test because of my family history of heart disease but it was normal. I ‘mentioned’ what the GP in Urgent Care had said so she referred me to an ENT (ear, nose, and ‘throat’ specialist). I saw the ENT on Mon, my ENT on Wed, and in surgery the following Mon - diagnosed with tonsil cancer before leaving the operating room. Tonsil cancer rarely has any symptoms other than one hugely enlarged tonsil while the other is normal in size and extreme fatigue but when anyone has a problem in one area, it is best to go to a doctor that specializes in that area. Diana

RE: Tonsil Cancer?

by Dlynn1210 - March 14 at 1:16 PM

On Mar 14, 2019 6:35 AM atoosagurl wrote:

So I am a 35 year old female. I have smoked on and off for about 10 years. The other day I noticed that one tonsil is larger than the other. I also noticed a small white bump on the enlarged tonil. I inspected with a q-tip and now the white bump is gone. I am going to be making an appointment with my GP this week. I don’t have a sore throat and otherwise no symptoms. I do suffer from anxiety and feel throat tightness often but now I’m not sure if that’s anxiety related or tonsil related. am freaking out. Thank you.
I am a tonsil cancer survivor and recommend you make an appointment with an ENT, who is an ear, nose, and ‘throat’ specialist, rather than your GP. Eleven years ago I began to experience extreme fatigue and just a feeling that something was not right. I went to my GP and then three others before a fifth at urgent care (all GPs) said “Has anyone told you that you have one extremely large tonsil?” That was all he said so I didn’t think a lot about it. Then I began to have very mild chest pains and made an appointment with a cardiologist. I mentioned the one enlarged tonsil to her almost as an after thought. She said “We need to make you an appt with an ENT and they may want to biopsy that”. She called before I left her office and made my appointment for Fri (it was Wed). My oncologist later remarked a few times how shocked he was that a cardiologist knew what she was looking at. I saw the ENT on Fri and she said “When one tonsil is much larger than the other it is generally cancer” (once pointed out I saw that mine took up half my throat). I was operated on the following Mon and diagnosed with cancer before leaving the operating room. What I would like to point out is tonsil cancer rarely has any symptoms other than one greatly enlarged tonsil and fatigue. Anxiety, throat tightness, and a white bump are not common symptoms but the expert who can tell you if there is any concern is an ENT. One suggestion is to stop smoking as many health issues are traced back to it - including tonsil cancer. I have never smoked or drank and am a female (which tonsil cancer is more prevalent in men, smokers, and/or drinkers). The one thing to keep in mind is that tonsil cancer is highly curable. Diana

On Nov 18, 2018 3:10 AM torehb wrote:

hi are u still available to help ?

I’m not sure who you are asking but felt compelled to,resold after I read a previous post. I was diagnosed in June 2007 with tonsil cancer (squamous cell carcinoma) Stage IV. I am/was not HPV positive. I underwent a tonsillectomy the following week, had dental work completed (teeth removed), and as soon as healed underwent chemo and radiation. I had my first clear scan in Dec 2007 and am still cancer free. So to answer an earlier question, head and neck cancers are treatable ‘and’ cureable! Diana
My insurance paid for treatment - the same as they do for every illness or accident and why I have insurance. Many of the doctors and nurses at CTCA are cancer survivors and why they chose to work for CTCA. I was diagnosed with a brain bleed two years ago - my insurance also paid for my 5 day stay in the hospital.
The first CTCA was in Zion IL where every street in town was named after books in the Bible. A doctor started the hospital and when he retired a corporation purchased it as a tax write off. Then it was once again for sale. The man who purchased it and started CTCA lost his mother to cancer and was disappointed in how little his mother was kept informed and how little the family was kept informed as to her condition. He bought the hospital with a sole purpose in mind - focus on cancer patients and their families. I was treated at CTCA and know in comparison to many people who find their way to Cancer Compass how blessed I was - alternatives like acupuncture to help patients through treatment, an area to exercise, healthy food provided (I could even order nourishing shakes made with Prosure when I didn’t feel like eating), and a chapel where services are held every Sunday morning with a pastor always available - not to mention the creation of Cancer Compass. Everything is centered on what is best for patients. Since CTCA created and sponsor this site, there are many of us on Cancer Compass who know and have first hand experience with CTCA. You don’t need to be a patient of CTCA to share on Cancer Compass - and in fact, you don’t even need to live in the U.S. Diana
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About Dlynn1210

Patient
Head and Neck Cancer, Tonsils Cancer

I am married and the mother of five grown children and 14 grandchildren. I was diagnosed in 2007 with SCC of the left tonsil and have been a member of CC since shortly after beginning treatment. I underwent Cisplatin chemo and TOMO radiation at CTCA in Zion, IL and received my last clean scan in Sept 2016. I found a wonderful support system on CC who really understood what I was going through and come back often to offer words of encouragement to those who are now traveling where I have been. I thank God daily for guiding me to CTCA and for guiding me to Cancer Compass. I had a tremendous support system with family and friends but there are not enough words to describe how I feel about my CC family other than to say I would not have made it through as well as I did without you.

UPDATE - I am now
9 years cancer free. No more scans just annual checkups with blood work completed!!!

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