Tonsil cancer

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Tonsil cancer

by Danny43 on Fri Feb 01, 2019 11:48 PM

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by survivor of tonsil cancer? If, yes. Can you share your experience with me.  Like symptoms, treatments ? Please thank you 

RE: Tonsil cancer

by Sdurnell on Sat Feb 02, 2019 10:33 AM

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Danny,

There are a lot of folks here who have survived tonsil cancer.  Treatment is generally radiation, sometimes along with surgery and/or chemo.  It is brutal, but it is effective and there is a pretty high cure rate, especially if the tumor is HPV related.

Do you have a diagnosis?  If not, get thee to an ENT.

Best of luck to you.

Susan

RE: Tonsil cancer

by Diamond_David on Sat Feb 02, 2019 01:30 PM

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You've come to the right place. Diana started the site and she's one of the few women who had this. I had Tonsil cancer in 2007 so I'll tell you stuff and some stuff you won't be told.

1. With chemo & radiation it's 90% curable.

2. it's one of the WORST treatments for cancer you can get, but he'll make it

3. Feeding tube is a must. Easily 5 months with one. You'll still need to drink water, keep your throat open/working. Do so. See if NOW he can drink milk shakes. They have 700 calories. I was told after treatment to do so by my doctor, helped a lot, soothes the throat.

4. If he has disability policy, apply for benefits now. I have it, they paid 4 months of income for me. Your brain just doesn't work well.

5. The Radiation will burn his neck. Aquafore works well on it.

6. The tongue will get sores on it, they will recommend "Magic Mouthwash" (concoction the pharmacist makes), gargle with it, swish it and swallow it. Does work, for a while. There's not much you can do to eliminate tongue discomfort. Sorry.

7. Feeding tube. Go to a sports store buy 2 whistles with string. (If you can buy only the string around the neck only, buy 2). Tape a large safety pin on the tube end out of his chest. Attach it to the lariette so it doesn't pull on his chest. Wear it in the shower (I know they said to pin it to their short, you're shirtless in the shower.) After teh shower swap the wet one for teh dry one. Life is good.

8. Best to get tube removed within 90 days after treatment is over, don't be dependant on it. After removal drink milkshakes and smaller bites. Don't worry about calories.

9. It's a terrible treatment. It will be WORSE 2 weeks after its over. 

10. 4th week he'll start to feel better. 6 months later almost a new man. 1 year after treatment started he'll be as agood as new.

11. I had one lymph node cancerous; they took it out and did treatment. Other people I knew took ALL of them out on one side. I see no reason for that, some doctors have said "We're going to radiate that area any way, why go thru surgery""  I'm no doctor but other opions are a good thing. I have a sore neck at times because of that removal.

12. There are two types of Radiation:
   IMRT
   TOMO

Difference? IMRT is like spray a weed with a wide angle water hose. Water goes everywhere

TOMO radiation is like a flask light, or water hose with stream going just to ONE individual weed,

I had IMRT, sprayed radiation all over my neck . My neck is stiff, killed half of my saliva glands (I have to carry a bottle of water with me everywhere-drymouth and have it at night)
   It also ruined somewhat my thyroid gland, I take a pill nightly.
  I ad IMRT because thats the only machine the hospital had. My cousin had TOMO, directly pointed to the tonsil, throat area and he has no neck pains, rarely used his feeding tube and doesn't carry water bottle. I wish I knew.

13. For 3-4 years you'll see the dentist every 3 months rather than 6 months. Your jaw has less blood flow, hygiene is important.

14. Treatment is once a week for chemo, daily for radiation for 7 weeks. I drove myself for firt 4-5 weeks, couldn't after that.

15. He'll have scans every 4-6 months for 5 years. 

Others here will post things to help, I forget most of it.

Google "Chemo Brain". Its real. You get foggy at times. It's been 8 years for me, I don't remmeber well. I work with numbers and it's a struggle to do some math in my head (not 20% on a restaurant bill) but I gravitate to a calculator more now.

5 Months after treatment my eyesight decreased a bit. I wear glasses, in 8 years had to get new prescriptions 3 times. Radiation affected my low hearing a tad, not much.

before radiation I had my arteries in my neck (caraotic?) and were 100% open, now they are 40% blocked from radiation. Not a problem I'm told until 80% blocked. (difference in IMRT and TOMO)

I'm 67 years old, this January will be 11 years and have been pretty damn good 12-18 months after it was all over. But I did ask a nurse once about "if it comes back". She said half of people if it comes back opt to not go thru treatment because it's so rough. But again 90% cure rate. 

He will need lost of your support. YOU WILL need time off as well. Let him know from time to time you'll have other do things for "ya'll". I didn't know until after it was over how hard it was for my wife and she's just terrific. She's go to a friends house to cry. Make sure you have some YOU time and don't feel bashful about.

Oh, the most important topic

SEX

For me, not for 3-4 months and that was the only time for another 2. Got this at 59 years old and have always enjoyed a sexual relationship. After treatment its' just not happening without Viagra. At almost $40 a pill!

Lastly (Oh no, there's more???)

After tube was out I couldn't gain weight, didn't have an appetite (milk shakes help a lot!)

The doctor gave me a prescription to increase my appetite. At age 59 I almost ALWAYS slept thru the night, never got up to go to the bathroom. I didn't find out until later that this appetite helper pill makes you go urinate more. Now I wasn't getting a good night sleep. So I stopped it but the go to the bathroom problem never went away (and it didn't help my appetite)

To this day I have to take a pill nightly to reduce bathroom trips and I don't sleep well. 

But I am still above ground!

Hopefully others here will share where I missed. Good Luck
David 

 

RE: Tonsil cancer

by Sdurnell on Sun Feb 03, 2019 05:57 AM

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David did a pretty thorough job, but I must find fault with one of his comments--the one about not worrying about calories.  So many of us lose so much weight that we do have to worry about them in the sense of making sure we get enough.  You can add them with full-fat dairy products, including milkshakes and ice cream, sour cream in soups, cheese in everything, etc.  Nuts are also good if you can eat them.  I had no teeth, so I ground them up in the blender and had them in smoothies or on ice cream.

Best of luck to you.

Susan

RE: Tonsil cancer

by Danny43 on Sun Feb 03, 2019 06:05 AM

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Thank you for your reply.  I don't have a diagnosis yet but I'm worried I have so many symptoms. 

I have one enlarged tonsil and food get stuck in my throat. 

RE: Tonsil cancer

by Creek on Sun Feb 03, 2019 01:55 PM

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Sorry to hear you may have tonsil cancer. I just finished treatment 4 weeks ago. Here is my advice. Go to ENT ASAP get diagnosis/biopsy. If it is cancer and you need surgery get TORS transoral robotic surgery. Settle for nothing less. Many times this will be the only treatment you need. No chemo no radiation. If you need radiation look into Proton Therapy. Less side effects and usually no feeding tube. Go high tech as possible. You will be glad you did. I don’t know where you are located but I can recommend treatment centers I went to if desired. Let me know. If it is hpv caused it is 90% curable. Good luck

RE: Tonsil cancer

by Danny43 on Tue May 07, 2019 06:18 PM

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Hey Creek,

Where did you recieved your treatment?

RE: Tonsil cancer

by Sdurnell on Wed May 08, 2019 01:29 AM

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Danny,

It's been more than three months since you first posted.  Do you have a yes or no as far as a cancer diagnosis yet?

Susan

RE: Tonsil cancer

by Danny43 on Wed May 08, 2019 01:33 AM

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No, I'm stuck without a diagnosis.  It's so frustrating. 

RE: Tonsil cancer

by Creek on Wed May 08, 2019 06:04 AM

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Wake Forest Baptist Health. Highly recommended. Don’t wait too long. Creek
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