Has anybody here undergone radiation treatment for tonsil/neck/throat cancer? How bad were the side

[sinkingfeeling]

affects? The radiologist scared the heck out of me, telling me I will have blisters in my mouth and throat, won't be able to eat or maybe even swallow, and will never be able to have a tooth pulled afterward and should have them all done prior to treatment. Also he wants me to have a feeding tube!

[lldu]

1. I found this site....

http://www.surviving-oral-cancer.com/

Hope it helps. I will think of you.

[babylonsister]

2. I haven't but

did find this. Maybe they're just preparing you for the absolute worst-doesn't mean it will happen. This says a sore throat and accompanying discomfort are the main side effects. I hope that's the case.

Hang in there, sinkingfeeling, and I'm sorry you're going through this.

http://www.radiologyinfo.org/en/info.cfm?pg=hdneck


What are possible side effects of radiation therapy?

The side effects depend on the site and extent of the head and neck cancer. In general, irradiation of the head and neck does not cause nausea, but a few patients do experience nausea during treatment. Many effective antiemetics (drugs that alleviate nausea) can relieve this symptom if it should occur.

Generally, the side effects of radiation therapy become apparent about two weeks into the treatment course, when a sore throat, loss of taste sensation, dryness of the mouth and dry skin reactions may occur. Sore throat is the main side effect that makes the course of radiation therapy difficult.

If your sore throat is severe, you may be unable to take in enough food and liquids by mouth to maintain your weight or avoid dehydration. Your doctors will then insert a feeding tube temporarily into your stomach (a gastrostomy tube), which will allow you to maintain adequate nutrition without having to swallow all of the food that you need. Gastrostomy placement is an outpatient procedure. It is important, though, to continue swallowing even with a gastrostomy tube in place. Otherwise, your swallowing muscles may atrophy; this would cause permanent swallowing problems and make it difficult to stop using the gastrostomy tube even after the radiation treatment course is completed.

A dietitian should be involved in your care during the course of radiation treatments to help you maintain adequate caloric intake and hydration. When side effects occur, it may be tempting to take a break from treatments. This is not a good idea. The "acutely responding" normal tissues—such as the skin and the lining of the throat—that are responsible for the side effects during radiation therapy tend to respond to radiation as do cancer cells. If the treatment produces few acute side effects, it is also not likely to be very effective against the cancer. Therefore, the treatment of most head and neck cancers represents a classic "no pain, no gain" situation. Breaks in the treatment course to lessen the side effects give the cancer a chance to regrow and will significantly reduce the likelihood of cure. Medications that are almost always needed during a course of radiation therapy include narcotic pain medicines, both a long-acting pain medicine and a short-acting pain medicine for breakthrough pain and stool softeners, because a common side effect of narcotics is constipation. Additional medications that may be necessary are topical anesthetics—such as "magic mouthwash"—to lessen the sore throat and possibly antiemetics if nausea is a problem.

[xiamiam]

3. i had radiation in a joint..knee...i think the disease was gone before the radiation..so its 50/50

for me whether i would do radiation knowing what i now know...the doctors told me that i would need to be on an exercise program for the rest of my life...it did not sink in that if i didnt do that my knee would freeze up and any gained mobility would be gone..which is also what happened during and after the radiation...i thought the doctors downplayed the after effects..so in some ways im sorry i did it...if i didnt believe that the disease was gone before the radiation, that would be a different story...good luck...radiation doesnt hurt..it just makes you very very tired...in my case, there was a wound that reopened after the radiation as well...so be sure you are well healed before you start...good luck..blessings and a prayer for a speedy recovery

[Joanne98]

4. My father had throat cancer. Have you had surgery yet?

You might want to get the feeding tube because it's important to keep up calories when you have cancer. The feeding tube is a minor operation btw. Radiation makes it hard to eat for a lot of people even ones with cancer somewhere else. If he's suggesting it, he probably knows you're going to need it.

[sinkingfeeling]

6. Yes, the primary cancer was small and on my right tonsil. It had spread to a lymph node that was

fairly large. They removed numerous lymph nodes during the neck di-section. The PET scan shows some 'residual' stuff and that's why they want to do the radiation.

[roguevalley]

13. my dad had lymphoma and it was in his mouth. the chemo wasn't

so hard, it was the radiation that got him down. He was frail as a reed when this happened, unlike you being young and upbeat. He couldn't eat. It made his throat raw and he was reduced to ensure and whatever we could guilt him to eat. Keep eating no matter what. That is the downside to this with it in your mouth. Keep eating, honey. My father couldn't. When it was clear that a feeding tube would be the way to go it was too late and he was too frail.

Don't assume this will be what happens to you. You will have a sore mouth and throat most likely. Eating and drinking is key. Don't give it up. I hug you tight.

[Joanne98]

16. This is why you should get the tube. It will be to hard without it.

[Joanne98]

15. They probably want to make sure that they get it all so they will

give you high doses. My aunt had breast cancer. She got radication. It's now came back and they can't give her anymore. You can only get so much. They are probably going to blast you good to make sure they get it. I hope I'm not scaring you. We were in shock when it happened to us. We got rushed through everything and didn't have time to think. The doctors know people are in shock but don't really help that. The way he told you about the peg sounds to me like he thinks you're going to need it. If you can't swallow for a while you will have to get one anyway.

[Warpy]

5. I know people who have undergone the treatment

for all sorts of head and neck cancers and while the treatment is unpleasant, think of the alternative.

What you will see are irritation in your mouth and throat at the very least. You will be given medication to numb the area long enough to get something down and for comfort. Most people report a difference in the way food tastes and most people end up living on liquid nourishment for a while, either Ensure or Slim Fast or whatever is on sale. If the radiation is going to be extensive and/or long lasting, feeding tubes can be placed temporarily to bypass the sore throat and help you keep up your strength.

If they do a PEG tube, you'll be able to put a stopper in it between meals and wear your own clothing over it. It's only temporary, until you heal. You can let tube feeding go in by gravity during the day or use a pump at night. There's a lot of latitude depending on how well you tolerate it and what sort of schedule you have.

It is really important to get all dental work completed before you undergo treatment since radiation will suppress your immune system and any infected teeth can cause you real trouble.

I'm sorry you're facing this, but the treatment can give you more good time once it's done. Just the fact that you're being prepared for all the worst complications doesn't mean they're all going to happen. It's better to prepare for the worst and not have it happen than to expect the best and get handed the worst.

[roguevalley]

14. also, use mouth washes for this that keeps things like thrush down.

I remember that reading the post above this. Keep your mouth as clean as you can.

[peace13]

7. I'm sorry I don't have any medical advice to give but..

I will think good thoughts for you. Love and energy to you in hopes that your treatment goes by quickly and that you will soon be on the mend. Peace, Kim

[Imalittleteapot]

8. 25 years ago, my mother had radiation for cancer of the jaw.

Radiation was after jaw replacement surgery. She had been wearing dentures for years, so the teeth pulling thing wasn't an issue - and because of the surgery she couldn't eat anyway and had a feeding tube for a year.

As I recall, she was extremely tired, has suffered from dry mouth, and since has been unable to eat spicy foods. When she was able to eat, it was a real chore. It would take
forever for her to get through a meal. But the geography of her mouth had changed dramatically because of the surgery and it never worked very well again.
What I'm trying to say is that her big issue was the surgery and deformity, not radiation, although it was debilitating.

Fast forward 25 years. Things must have improved! I think your doc is preparing you for the worse case scenario, something my mother never got from her surgeons. She and the entire family were shocked at what she went through and that the surgery took 18 hours!!!

I wish you the best. Keep us informed. You should post in the Cancer forum. You can always find helpful advise and a lot of shoulders to cry on.

xoxoxo

[sinkingfeeling]

9. I didn't know we had a Cancer forum. Thanks.

[northernsoul]

10. Best wishes

I wish you courage on your path to healing.

[WillYourVoteBCounted]

11. friend's dad did, here's what happened

Friend had radiation treatment for throat cancer.

Turns out that sometimes this treatment damages the salivary glands,
and your mouth will have dry-ness.

Friend had to get his teeth pulled, and has trouble with dry mouth.

I am sorry that you are going through this.

It would be helpful if you could find some groups or blogs on the net
about people who have gone through this, and so you can know everything
before you get the treatment.

This is a serious cancer, but our friend seems to be making it.

But a Cancer Center or place like that might give you more information.

You need to know what your options are and what to expect.

My thoughts are with you.

[A Brand New World]

12. My Mom had tonsil cancer a year and a half ago. She underwent bilateral

tonsilectomy with lymph nodes removed just on her right side. She then had radiation everyday for two months after her throat had healed up from the surgery. She has had dentures for many years so the tooth removal wasn't an issue for her so I'm not sure about all of those ramifications. But her mouth & throat were extremely sore. She had mouthwash that she had to use that numbed her mouth just to be able to get food & drink down. Another problem is that your taste buds are destroyed for at least the time you are doing radiation so you can't even taste whatever you do get down. She lost about 40 lbs. which was OK for her because she needed to lose weight anyway. For someone already thin, that would be a problem. Her taste buds are still not completely back even now. My Mom is a pretty tough old bird with a very high pain tolerance and this just about brought her down. So it depends on your own toughness and pain tolerence. Best Wishes! I'm sorry to hear that you are going through this. Let me know if you have any other questions.

[JMDEM]

17. What type of cancer do you have?

Is it throat/neck/tonsil cancer or is there a more official designation?

What stage?

What is the current prognosis?

[sinkingfeeling]

19. I have squamous cell carcinoma of the tonsil. Right tonsil was removed. It had spread to a couple

of lymph nodes on the right side of my neck. One was completely replaced by the cancer and was 4.5 cm, making it a stage IV. The other lymph node was 1/3 involved with the cancer. 8 other lymph nodes on that side had no evidence of malignancy. PET scan showed 'residual' squamous cells in same area. No other evidence of cancer in anywhere else.

That's why they want to do the radiation to clean up the residual stuff. Said it would raise the odds to 90-95% for complete elimination of the cancer.

[Joanne98]

20. It sounds like you got a good chance. Get the feeding tube.

You don't want to get run down by weight loss. Good luck

:hug:

[uppityperson]

18. Good luck to you, and if you need a feeding tube, just get one.

They are a "bit" weird, but keeping yourself healthy and well nourished if your throat/etc is too sore to eat is a really good thing. I've known people with tubes into their stomachs and they aren't as bad as colostomies.

Good luck to you, and hoping all goes well, please check back and let us know how you're doing.

[eppur_se_muova]

21. A friend of mine had radiation for thyroid cancer -- now he doesn't need to shave at all.

I can't remember if he had to have any teeth pulled; it's been a few years.

[DMCarter]

22. coping with head and neck cancers

I hope I can offer up some encouragement for you. My husband is 6 months out of radiation for cancer on his left vocal chord. He was a very lucky man..they found it at stage 1. He had 37 radiation treatments(5 treatments per week for 7 weeks and 2 days) and was told pretty much the same as you. He was determined not to have a feeding tube so though swallowing was very hard and his throat was extremely sore he managed to only lose 6 lbs during the whole ordeal. He was on several different pain medications and even worked for the first two weeks of radiation. By the time the third week rolled around however, he was begining to feel extreemly tired. Radiation wears you down and you may find it difficult to sleep. On those bad nights, I fixed up what I called a comfort pack for him. Chilled water,his meds,a warm cozy blanket, chapstick,pudding cups. He also found it easier to sleep in his recliner than the bed as laying flat seemed to choke him up more. You'll find your own ways of coping but don't give up. The dr. told him that during his treatment he couldnt have dental services so if something needs fixed go ahead and have that proceeduce done before radiation. Although its true that you might not be able to swallow, or eat leave worrying about that when and if the time comes. There are many who do just fine. I sinceley hope that when all this is over you can be a help to someone else who has head and neck cancer. If you are open to online support I can suggest a great one...Many survivors with tips on how to get through this. Its Throat cancer support.. yahoo groups

I wish you the best
May Angels Keep
Deborah

[sinkingfeeling]

26. Thanks for your detailed post. Reading this, I may have to talk to HR about taking a medical leave.

I had intended to continue to work the entire time.

Thanks again.

[HysteryDiagnosis]

23. Perhaps something of interest......

http://www.ncbi.nlm.nih.gov/pubmed/18633254?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum



1: Gan To Kagaku Ryoho. 2008 Jul;35(7):1157-61.

Yasuda T, Chiba H, Satomi T, Matsuo A, Kaneko T, Miyamatsu H.

Dept. of Oral and Maxillofacial Surgery, Tokyo Medical University.

BACKGROUND: Mucositis induced by chemoradiotherapy is one of the serious side effects of cancer therapy for oral cancer. It is caused by toxic free radicals(activated oxygen)produced by these therapeutic modalities. Rebamipide is a novel anti-ulcer drug which possesses various cytoprotective activities such as free radical scavenging, induction of prostaglandin-E and acceleration of ulcer healing. We report the results of a pilot study on rebamipidegargle for inhibition of mucositis induced by chemo-radiotherapy. METHOD: The present study was conducted on 13 patients(7 men and 6 women; age range 53-88)with oral cancer.

They received radiotherapy(30-60 Gy)for the oro-facial area and chemotherapy(docetaxel: 11 cases; UFT: 1 case; radiotherapy alone: 1 case)with simultaneous addition of 1% rebamipidegargle treatment(10-15 times/day)to prevent the onset of mucositis. Informed consent was obtained prior to entry. RESULTS: Nine cases had grade 1-2 according to the WHO criteria, and 4 patients were classified as grade 3-4.

No adverse reactions that could be caused by the rebamipide gargle were observed. CONCLUSIONS: These results suggested that rebamipide gargle could inhibit the occurrence of stomatitis induced by chemoradiotherapy.

[Hannah Bell]

24. dietitian here. this is what he probably means: PEG tube.

http://en.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

The procedure is simple, very low-risk & quick.

Removal is simple once you don't need the tube anymore: "PEG tubes with a deflatable bumper can be removed simply by pulling the PEG tube out through the abdominal wall once the bumper has been deflated (traction removable PEG tubes or "button" PEG tubes)."

http://www.oralcancerfoundation.org/dental/tube_feeding.htm.

"PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. The surgery is simple and involves little risk or discomfort. The procedure takes about 20 minutes.

The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by one of several methods. Some brands have a small wire within the tube, which after insertion is pulled from the exterior end of the tubing causing the portion within the stomach to curl up or “pigtail,” preventing it from being pulled out.

Other systems employ a very small balloon at the end of the tube which is inflated within the stomach after insertion, serving the same purpose.

Removal of the tube simple involves cutting the wire which created the pigtail, or deflating the balloon section of the tube allowing it to slip easily from the stomach."


Read up on the procedure & ask your doc (or nurse or dietitian) questions. There are some good reasons for placing a tube before you do radiation.

[stumblnrose]

25. g Tube expert here!

I suffered a very rare disease due to an allergy to medication that was administered too quickly by inept MD. My throat totally burned out and my mucous sloughed off. Scar tissue caused blockage in esophagus and had to be removed but my swallow didn't return Otolaryngo had me on swallow therapy that went nowhere. I was eating 3000 calories of fructose based crap through my stomach every day. I went to a naturopath who put me on a liquid diet called The Ultimate Meal. It contains quinoa and flash frozen veggies. I can't prove that this caused me to eat again but I did indeed start to eat swallow after a full year on g Tube. I also used a therapy called Vital Stim which is not viewed favorably by mainstream docs. It is a machine with electrodes placed on esophagus and electrical stimulation forces you to swallow. I had g Tube removed in January, 2 minute procedure and take all foods orally. I too am sensitive to spicy foods now, goodbye kim chee, and drink a lot of liquid with all meals. I have gone from 145 lbs coming out of hospital to 190 lbs in four months of eating. At first I was eating like a pig but have had to cool down my feeding act. I wish you the best on your procedure but have no fear about feeding tubes, they are a nuisance that will save your life.

Edited for spelling, my eyes were affected too.