Hi. 5 weeks ago i underwent major surgery to remove a tumor on my tongue and removed my lymph nodes on my left side. im discharged now but im awaiting radiotherapy which is precautionary. I would like to know what the radiotherapy is like as im rather worried. They say the cancer has gone but scared it will come back.

Russ, there is no guarentee with this. Some people it never returns, others, like me it has returned for the 3rd time. But it has been over a 15 year period. Radiation was hard on me. Not as bad as some on here tho. It affects everyone differently. I hated it to be honest. I will not lie to you about that. But I survived it and I had it twice already. I never had chemo tho. I don't think at this point I would either. There are a lot of people on this site that will and can help you ..Best of Luck to you. God Bless you, Vicki Lynn

Hi there Russ

It seems that we have much in commom...same age, same surgery and same precautionary radiation treatment. I was first diagnosed with cancer in Dec 01...Xmas Eve had a 1/4 of my tongue removed along with a neck disection removing all lymph nodes from my left side. As all margins in the pathology were clear and there was no evidence of lymph involvement, the decision was made not to have any further treatment. Bless my Doc's, for now I know why they did all they could to avoid radiation! Much to my horror I was rediagnosed last May but this time it was more aggressive and more invasive, so I had all the radical surgery and radiation too. I am going to be honest with you Russ, for me as my Doc had warned me the Radiation was worse than the operation I reakon. No matter how well informed you are, the experience is something that cannot be explained, whatever they tell you times it by 50. Well at least this was my own personal experience anyway, but in saying so it is just another tool we have to use in our fight for suvival. The first couple of weeks are ok but after that it's hard to comprehend that you have to return for more sessions even though you are burnt and in pain. Also after the first two weeks I couldn't speak for over 2 months and you can forget about food... Ensure & Sustagen became my life long buddies!!!!! Also it's the side affects that you have to adjust to like the dry mouth and lethargy, but you know what....you do. Self preservation has a way of kickin in & it is truly amazing the strength that we humans have inside of us, but thats not to say that throwing a pity party now & then isn't justified!!! :geek:

I hope that sharing my experience has not been too harsh, but the truth is I wish that I had known about this site when there were so many answers that I just couldn't seem to get answers to. The way I see it is there is no point in not being upfront, after all it is our lives & the quality thereafter treatment that we are talking about....& it is a decision that will affect our future one way or another. Do remember though if I had made the decision to have had radiation the first time around, maybe that could have saved me from 'C' & it's consequences the second time round? Just something for you to think about....

The answer is different for each one of us but hopefully sharing our stories with each other can help bring some level of truth & comfort that we all seek in our hearts

'Happiness is not a destination it is a choice, so enjoy the whole journey.. the good and the bad'

Warmest Regards, Kelley

Hi Russ, I've only just caught your posting.

My experience was no where nearly as bad as Vikki and Kelley.

I was diagnosed back in Sept. 2001 and had the whole of my tongue removed, accompanied with the apparently compulsory neck dissection.

This was followed by radiotherapy and unlike most people I had absolutely no problems. Virtually no inflammation, zero blistering, zero discomfort.
Indeed at the time I wondered if was actually receiving any radiation.

Bottom line seems to be that like everything else associated with cancer each individual's reaction is unique.

So, expect the worst and then anything else must be an improvement.

Best of luck.

Hi Kelly, I must agree with Vicki
The Radiotherapy is worse than the operation(except for giraffee syndrome ), well for me anyway.
The after effects on people seem to vary so much.
The worst thing for me left with stutter and unable to say alot of words that I would normally use.
The Teeth well I will not go there it is horedndous if you have not had them out before surgery as in my case.
Sorry but thats the way it is :footinmouth:

Paul

Hello Russ, Well I am in the middle really, probably more in Pikeman's experience. I think I told you already under another section that the worst part for me was having the mask made a I suffer from bad claustrophobia. I took a favourite Schubert tape with me for the first radiation treatment and I just closed my eyes and lost myself in it. It only lasts about 3 minutes--the RT that is--so I lft the tape there and the radiographers had it waiting every time I came. So I didn't dread the treatment at all. I felt very very tired and a bit [painful but the pain just lasted a couple of weeks after the treatment finished.
As we all agree everyone is different and good luck with yours. Remember to swap notes! Ishbel

Hello Russ, I really feel for you, all the different experiences about Radiotherapy must now have your head in a spin.

My experience with Radiotherapy was, I would say, not nearly so severe as some. I was a bit like Ishbel, I found the making of the mask, and subsequently the wearing of it very claustrophobic. Just think nice thoughts during treatment, and its amazing how quickly it goes by, its only minutes really.

I had no blistering to my neck, just kept ladling on the cream. The pain was dealt with by taking Morphine on the rocks. (Morphine on crushed ice). Regained my weight and more, by eating loads of ice cream, and smothering everything with oils and butter. Fatigue was a bit of a downer as I am a very active person, but you do get through it all. Maybe you won�t think so, but you do, just think positive thoughts Russ and you�ll be fine. Just keep saying to yourself �Its only for a short time, this will pass�.

I think the fear factor will always be lurking somewhere in our minds. For me.. although I have inward reminders of my encounter with cancer. I am cured now. I try not to think �What if� more �I am�.

Kind Thoughts

Rosemary

Hi Russ - couldn't reply before as I've been having broadband put in and we have been offline for over a week.

Radiotherapy is as most here suggest unpleasant. But most importantly even with the gradual build up of burning, the mouth ulcers, the feeling that your tissues are contantly dehydrating you do get through it and so it is tolerable. Unpleasant yes, makes you feel just rotten, lethargic and ghastly - but just think what its doing to those little, but sinister sods of cancer cells if you feel so lousy.

It's tolerable because it does not go on forever and somewhere in your psyche something tells you it will finish and you know that unlike other unpredicatble things they can only give you so much of the radiotherapy.

I was pretty badly burnt being fair, but I have had letters from all over the world and it seems people do truly react differently to radiotherapy. All have more or less said that seeing the pictures gave them a standard of what to expect of how bad it could be. Almost 99% have said they were not anything like so burnt so maybe you will be one of those.

Knowing how the burn may look and the possible symptoms can be reassuring when going through the treatment as there is a tendency to think the symptoms are only happening to you. Most of the symptoms will be quite normal for the type of therapy. You just need to be aware they are normal. Don't feel frightened just be clued up on the likely symptoms and procedures and medications. You will need nystatin for preventing thrush and get in bottles of water before you feel too weak to collect it. Dot them about the house. Expect to be tired and give in to it. Try to walk a few hubdred yards every day to keep muscle strength, but don't expect days to be as normal.

One man told me he got in the bath one day and the burnt fine layer of skin came away in one go and he had virtually instant skin healing. Mine took longer coming off over several weeks gradually, but I was given more treatment on one side so one side was always aweek behind healing.

Even though it was painful you sort of grow with the pain. Medication as mentioned above like morphine and solpadol help control it. The trick is to keep a careful note of the medication you take and space it out carefully. Sometimes force yoursef to go that extra half hour before taking medication and try to control the medication rather than it control you. Obviously people have different views on this, but in the main take the maximum docs allow you whilst having pain, but in your heart when you know that pain is less start lowering the dosage to help yourself get in control.

You can see my radiotherapy burn pictures on this webpage at my website http://www.fashion-era.com/Radiotherapy_3.htm

I'd be dead by now if I had not had radiotherapy. You will think they are trying to kill you when you have it and certainly in the immediate weeks after, but give it a few months and you will feel renewed.

Hi, Russ. Actually my Dad experienced internal radiotherapy but without the operation. He saw a lot of people in the hospital with cut faces and refused to be made surgery. We had treatment in Russia. The place is called Head and Neck Oncology. It is located near Moscow, but they say that the doctors are very qualified. So, they placed radioactive sort of needles or pins into the tongue. He was laying still with them for 3 days. First day he was able to write messages to us. He wrote that it was easier than he expected. The second day was worse, as he was getting weak. The third day was awful. He was supposed to stay with these pins several days more but he had fever. They removed the radioactive material. But the problem was that he got pneumonia. We don't understand how. But the pneumonia affected him much. He had fever long. I believe, if it had been pneumonia, he would take treatment easier. Then he lost taste and didn't want to eat anything. He terribly lost his weight. The rehabilitaion lasted roughly speaking about two months. But the problem is he has now burning on that very place.

Russ, I can wish you patience. You know, when Dad wrote me messages, I would tell him: "You see, one day has past, you have only two left", a little bit later "one day and a half has passed..." and so on. I know that it is easy to say but not easy to do. But the days are really flying. I would my Dad to share his experience with you, but unfortunately he doesn't know English. And maybe there are things I have in my mind to tell you, but I can't express them clearly.

Wish you luck

Hi Kim

Your dad had brachytherapy� which is a procedure in which radioactive material sealed in needles, seeds, wires, or catheters is placed directly into or near a tumor. It is also called internal radiation, implant radiation, or interstitial radiation therapy. Ulceration and pain develops in reaction to the local intense radiation; this could have caused swallowing difficulties with aspiration into the lung leading to pneumonia ( I am guessing :thinking: , Kim). The taste buds would also be affected causing the loss of taste.

You will find more information at: Radiation Therapy for Cancer: Questions and Answers

Best wishes
Vinod :coffee:

Dr Vinod,
I am very happy, that you remember Baku. Thank you for the site. I have not been aware of its existing indeed.

As to Dad, he has visited the specialist today. He said, that most propaply his teeth hurt the sore place. I wish it to be true.

GREAT THANKS FOR YOUR REPLY

Hi everyone its Russ again. Just to say thank you to all who have replied. I started my radiotherapy today and have been told about the affects and it is scary. Thank you for your kind words. Hope you are all ok and you are all in my thoughts. Best Wishes RUSS

Hello Russ

I came across this article on the use of honey to reduce the side effects of radiotherapy. You might want to try swishing your mouth with honey as described- I can't see any harm if you aren't a diabetic and brushing your teeth well with interdental brushes and use fluoride mouthwashes and gel in between times.

quote:

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Topical application of honey in the management of radiation mucositis. A Preliminary study
Biswa Mohan Biswal, Ahmad Zakaria, Nik Min Ahmad
A1�Division of Radiotherapy and Oncology, Department of Nuclear Medicine, Radiotherapy and Oncology, School of Medical Sciences, Universiti Sains Malaysia, 16150, Kubang Kerian, Kelantan, Malaysia

Background. The aim of this study was to evaluate the effect of pure natural honey on radiation-induced mucositis.


Patients and methods. Forty patients diagnosed with head and neck cancer requiring radiation to the oropharyngeal mucosal area were divided in to two groups to receive either radiation alone or radiation plus topical application of pure natural honey. Patients were treated using a 6-MV linear accelerator at a dose rate of 2 Gy per day five times a week up to a dose of 60-70 Gy. In the study arm, patients were advised to take 20 ml of pure honey 15 min before, 15 min after and 6 h post-radiation therapy. Patients were evaluated every week for the development of radiation mucositis using the Radiation Therapy Oncology Group (RTOG) grading system.


Main results. There was significant reduction in the symptomatic grade 3/4 mucositis among honey-treated patients compared to controls; i.e. 20% versus 75% (p 0.00058). The compliance of honey-treated group of patients was better than controls. Fifty-five percent of patients treated with topical honey showed no change or a positive gain in body weight compared to 25% in the control arm (p 0.053), the majority of whom lost weight.


Conclusions. Topical application of natural honey is a simple and cost-effective treatment in radiation mucositis, which warrants further multi-centre randomised trials to validate our finding.

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You will be fine tomorrow.

Best wishes
Vinod :coffee:

Hi everyone. i have now had 7 courses and have 13 left. So far im feeling no effects apart from slight redness to my neck and slightly more stiffness to my neck. I hate the stiffness in my neck. Is there anything that could help it??? I would just like to say how helpful im finding this site and wish i found it before surgery when i found out i had tongue cancer. Hope everyone are feeling ok and iam proud to be part of this site. Everyone of you are in my thoughts and hope to hear from you soon

Best wishes
RUSS

Hi Russ

Nice to know you are doing OK.

Occasionally people who have radiotherapy to areas over joints or muscles may experience some stiffness. This can occur at any time up to two years after treatment has finished. If the radiotherapy is to the back of your throat (nasopharynx), the muscles used to open and close your mouth can also become stiff. Sometimes the soft tissues such as muscles will develop fibrosis which creates stiffness or tightness. Due to tightening of the muscles you may find it difficult to open your mouth wide after radiotherapy to the jaw, tongue or tonsils.�Do some mouth-opening exercises at least twice a day. Avoid clenching your jaw - this makes the muscles tighter. Regular exercise to these joints and muscles can prevent stiffness. Your doctor may refer you to a physiotherapist or speech and language therapist who can advise you about breathing and gentle neck exercises to prevent stiffness. If not, please ask for advice.

Best wishes
Vinod :coffee: