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Is it possible to have almost no side effects of tongue radiation?

Sam999
Posts: 305
Joined: Mar 2012

Hi Everyone,

I am so glad to find this site. Everyone is so helpful and inspiring. I have been reading lot of things for past two days.

I am 45 years old and was diagnosed with Squamous Cell Cancer of the oral tongue (front bottom part of the tongue). I had surgery to remove it two weeks back. Also had a neck dissection to remove 27 lymph nodes. All lymph nodes were clear except one with a miniscule spread. Biopsy for the tumor shows the edges as all clear.

My doctor said he would prefer to have radiation for 6 weeks to prevent any re occurrence. It seems most people go thru radiation even after surgical removal of the tumor?

Also my doctor indicated that I don't need any tube and could continue to work during radiation. How can this be possible? I read that most people have lot of side effects mainly the mouth sores.

Is it possible to not have any side effects of radiation? I could not find a single case where someone said they were just fine during radiation.

I have my appointment with radiologist next week. Just trying to get more information. Everything I read is really scary but I rather be prepared for the worst than get surprised.

Thanks,
Sam999

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Welcome Sam....

A lot of great people here for sure...now another future survivor in you.

I was STGIII Tonsils an a Lymphnode..HPV+, Sixteen weeks of combinations of chemo and chemo/rads...tonsils removed up front, also no PEG....three years ago.

As for side effects...you're gonna have them with radiation. As for how bad, everyone is different.

I'm an IT computer guy, I worked from home and connected to my work computers all through treatment. Work wasn't a problem for me...but it wasn't physical.

Though it did interfere with my fishing...LOL, but I did manage to get out a few times even then (not to my wife's liking), but it was either with her or a few of my buddies would go to keep an eye on me....hmmmmm or my boat, not sure.

So a lot depends on what you do, and how bad your recovery/treatment becomes.

You can count on becoming weak just from lack of consistant nutrition and exercise. It'll become more of a play it by ear as for how well you can handle it.

I was lucky, minimal side effects, but still I lost weight, felt like crap some days. Survived for nearly 7 - 8 weeks on just water and Ensure Plus mostly.

Here's a link to the SuperThread which has tons of useful info also...

SUPERTHREAD

Again, welcome aboard and hang on for the ride...

John

Marty36
Posts: 84
Joined: Aug 2011

Or both?

I did eight weeks of radiation on my neck after a dissection and worked all but the last week. I never took any pain meds. I had side effects--fatigue,loss of taste, skin problems-- but felt relatively fine the whole time. Only lost 5-10 pounds.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

I have been through radiation twice, first for base of tongue cancer in 1998, then for a second cancer of the soft palate/left oropharynx just recently. I am the guy your doctor was likely talking about--- I pretty much breezed through my radiation therapy the first time. Breezed is an unfair word when i think about it. I worked full time throughout thetreatment. I ate solid food, and didn't have any real soreness or mouth ulcers. I didn't need pain pills, nothing. But I also didn't have surgery on the base of my tongue before the radiation. I only had a biopsy, and a radical neck dissection. My case is very unusual. There aren't many who come to the board and say, it was not a big deal. The chances are you will have some pretty good disability during the latter part of treatment and for awhile after.

This second cancer has been much harder for me. I'm two months past my radiation now, still have some mouth ulcers which are healing slowly. I didn't need a PEg tube this time either, but I've been on a liquid diet, since about 3 weeks into radiation. I'm just now getting back to some solid food. It makes sense this would be harder, as I've already had the radiation exposure from 1998, and the body remembers the previous insult. In all, I'm about as radiation resistant as anyone, i suppose. Don't bet on being as lucky as I have. And your doctor is nuts to promise you it will be this easy:)

pat

Sam999
Posts: 305
Joined: Mar 2012

thanks for all the replies.

John, super thread has lot of info, I will read thru it.

Marty, they are radiating only my tongue and it is supposed to be low dose. I have not yet had my appt with radiologist so do not know what low dose means.

Pat, it sure is comforting to know that there is a very small chance that someone may not have side effects.

Again, thanks for all the help. This site is very useful. I am sure I will ask for more help as I start my treatment.

longtermsurvivor's picture
longtermsurvivor
Posts: 1758
Joined: Mar 2010

expect problems and be pleasantly surprised if and when they don't surface. It's all good, after all, because you're kicking butt on the real problem.

phrannie51's picture
phrannie51
Posts: 3620
Joined: Mar 2012

from her 30+ treatments to her larnyx. Most were asthetic, like food lost it's taste, and she had dry mouth, and some fatigue...but she drove herself everyday for every treatment the entire time...she was 63 years old, too.

After reading other people's stories on here....plus meeting and talking to a few folks in my area who had radiation treatments....THEN meeting the radiologist and hearing what he had to say (which was "it's like a sunburn, you'll be just fine")...I'm keeping my expectations lower than the rad-onc's, yet hoping that I may be one of the blessed ones. I haven't started yet (not until Tues)...I do think the radiologists are bit generous with themselves and how their brand of treatment affects their patients.

p

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

I did not have the PEG like a few others but the effects of radiation really do vary from person to person. It can also depend on what type of equipment is being used. Just about everyone gets IMRT but there are newer machines that claim to deliver more precise beams to avoid damaging healthy tissue ie salvia glands. I had the latter but still had uncomfortable mouth sores and a very sore throat. The sore throat started early and lasted a month or more post treatment. They both really only hurt when eating so I learned how to deal with it, think bland creamy soups and nothing spicey. I am retired so work was not an issue but I could have easily worked during treatment. Good luck, you will be fine.
John

pamy
Posts: 2
Joined: Mar 2013

Hi John-

Just researching treatment options and wondered if you had Proton vs IMRT.  Although they have not confirmed it improves outcomes, I believe they have proven it reduces some of the awful 'after treatment is over' permanent side effects, namely dry mouth and damage to teeth.  Can you give me your opinion on this, please?  Since you are one year out, are you able to tell me if you are back to your 'old normal' or are you left with any problems?

Thank you so very much.

Pam

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

 

 

 

 

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I'm not sure what happened to the body of the text earlier??

You posted a question to John on an old thread ...you may want to create a new thread and ask your question so more folks can see it and respond to it.  I will try and post it for you.

 

Best,

Tim

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Welcone to the group Sam,

I finished 7.5 weeks of radiation and 1 concurrent chemo infusion on Dec 30, 2011. Prior to that I had an all day infusion of 3 chemo drugs every 21 days from Aug to Oct 2011. My cancer was in the rt tonsil. Throughout all treatments I worked every day, I took my rad treatments at 7pm in the evening , there were days I was tired, I lost my taste, no PEG tube, I ate regular food , with or without taste, and thru it all lost 30-40 lbs, weight I needed to lose anyway. My rad doc allowed 2 lb weight loss a week, if I lost too much weight I would have gotten a PEG. I started early on in treatments rinsing my mouth with a salt/baking soda/water mixture, then someone told me about caphosol and got a script from my rad doc, and used that 4 x's a day, thru it all , and maybe I was one of the lucky ones , I didn't experience the sore mouth or swallowing difficulties you have read about. Today my taste is coming back, my saliva is getting better, I still try to drink 2-3 qts of water daily, I use the biotene products toothpaste and mouth rinse..like they tell you each of us is different. Be proactive in your treatments , ask questions, never let anything a sore mouth or swalloing issues should you have then get ahead of you.

Good luck with your treatments.

Linda

Sam999
Posts: 305
Joined: Mar 2012

it is really nice to hear some good cases. This brings my hope up. I know everyone is different and I have to be ready for the worst, but there is some hope that I might be okay.

thanks

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

LOL, I doubt it....most of us are a bit Abi-Normal after all of the chemo, rads, poking, probing and walking around half naked in a gown with your azz hanging out for various scans......

But...if you're lucky, you'll be Abi-Normal too.

JG

RogerRN43
Posts: 185
Joined: Sep 2011

Some people with localized Stage 1 SCC (small tumor, no lymph involvement) can get away with just surgery, no chemo, no radiation. However, you mention one small node, so radiation is a must in case there are microscopic cells in the area missed by tumor removal and neck dissection. Radiation and maybe chemo added will give you the best shot at a longterm cure.

Your doctor may forgo a stomach tube because he wants you to maintain swallowing and perhaps sees you as overall physically healthy. And there are a few people here who have done that. The amount of difficulty is variable but it's doable and they'll attest to that. That said, you might not have any trouble swallowing. The key is to maintain hydration and nutrition to optimize healing.

I don't think it's possible to not have any side effects from radiation. As others have said, everyone reacts differently. Considering the area being radiated, you will likely lose taste but it will come back. For instance, I didn't get mouth sores. At 45, you should recover quite well from whatever comes your way. I'm 44 and 4 months out, I feel pretty good.

I suggest don't read into all the potential side effects of radiation. It will just create undo anxiety because you won't get all of them, and you might get very few. Handle them when they come.

In addition to the slew of meds your doctor can offer you, there are also measures you can take to help prevent or handle mouth sores such as aloe swish and swallow, flattened club soda rinses, pure honey tea, glutamine, Mugard, etc.
Refer to the Superthread for a lot of tips. Others will help you tons through your journey, this forum is a blessing for that.

All the best

Sam999
Posts: 305
Joined: Mar 2012

Roger, you just replied on a question I was about to post. I am big fan of Aloe and was wondering if we are allowed to use that during the treatment. Did you use fresh aloe? I buy fresh aloe from local farmers market and use it. How many times did you use aloe swishes and swallow? I will also ask my radiologist about Mugard and Caphosol (suggested earlier).

Glutamine is a protein powder you used for smoothies?

Did anyone try pro biotics? I read that it will help as it keeps the good bacteria flowing in mouth and in stomach.

Thanks,
Sam

RogerRN43
Posts: 185
Joined: Sep 2011

Double check with your doctor or primary nurse what is allowed:
-aloe drink, read the ingredients, some are a flavored drink found in supermarkets, the more pure stuff can be found in health food stores (I never got around to buying it)
-aloe plant, someone I know would break open a leaf every day and use it for his radiation burns on his neck, worked well
-pure honey, I recall a study out there that it helped, I bought it from a local farmer, and I would mix it in a little boiling water to kill any contaminants, makes a soothing warm drink
-454g of glutamine is 1/2 price at GNC right now, $20
-Caphasol is cheaper than MuGard, I have no experience with either

My doc gave me "Magic Mouthwash", codeine elixer, and morphine elixer... I was lucky, hardly used any of it.

To be honest, the only thing I consistently used was flattened club soda. I still use it now to rinse my mouth out after meals before brushing. Buying club soda basically saves me time making my own salt/baking soda solution.

I think there are a few other things I missed and others may chime in to tell you about them.
Roger

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Sam,

welcome to the forum. :)

My case is very similar to yours: I'm 31, Squamous Cell Cancer of the oral tongue. All my lymph nodes were clear but I had some perineural invasion. Hence radiation.

Choosing what to do after surgery has been the most demanding part of the journey for me ..mmh so far. ;)

One of my doctors suggested to irradiate only the tongue, but others advised to irradiate also the neck. I found that medical oncologists tend to be worried about the side effects of radiations and radiation oncologists worry about the side effects of chemotherapy, so don't be afraid to ask for more than one opinion. Eventually I decided to irradiate both tongue and neck and I'll start in a couple of days.

While waiting to begin treatment, I forgot about cancer for the last two weeks and enjoyed life as usual, which also meant not reading csn for a while. It's been great.

Still love you all, fellow survivors! :P

Sam999
Posts: 305
Joined: Mar 2012

Looks like we might be having treatment at the same time. My doctor said he is doing radiation just to prevent any re occurance. It seems most people who had surgery do go thru radiation at the minimum. I am still questioning if radiation is needed but relying on the doctor to make the right decision.

Mrs. Sarge
Posts: 198
Joined: Apr 2012

I had a similiar DX, spindel cell carcinoma on the vocal cords that was completely cut out. Went in for double check surgery and verified it was all out. Radiation was not recommended. 1 1/2 yrs later it came back, and in a worse spot surgically, so after biopsy, radiation this time. But like you, they're saying not severe side effects as it's so pinpointed and only for 2 mins. Sore throat, fatigue should be all I experience, with a long term side effect of possible thyroid and cartilige deterioration. Only 28 treatments which I will start May 7th. Been fitted for the mask, which was a trip, but feel like I can get through it and be done with it forever! If they want to do radiation, I say go ahead....be done with it!

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

> I am still questioning if radiation is needed but relying on the doctor to make the right decision

Sam, indeed in our cases radiation therapy is just to "manage the risk" of recurrence. In my case a reasonable estimate of that risk is around 30%, which means that most likely than not I would do just fine *without* radiation. I'm just fighting to reduce that risk to 10-15% and I'm willing to deal with the short and long term side effects that radiation therapy will bring (and those ones will come for sure ;).

I decided not to do chemotherapy because the side effects were not worth a 2-3% reduction in recurrence in my opinion. These are all tough calls, which the doctors can't make for us. It took me some time to think things through but now I'm really happy with my choices and I think that's what's really needed when the side effects will kick in in a few weeks. If your doctors didn't mention chemo, probably you're in better shape than me. Whenever I though that making decisions was stressful I was quick to remind myself that the fact that I could make a choice instead of just getting the full treatment meant that I was dealt a better hand than most people here.

I'm not sure if you were around already, but the csn fellows here did help me a lot in deciding what to do: http://csn.cancer.org/node/237686

Best of luck!

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Like I have mentioned before...

I guess it all boils down to how lucky you feel....

I had no problem taking the more aggressive approach. Hit me hard and give me the best shot up front of ridding it.

Chemo (for me) left me with no long term side effects and very little short term (that I'm aware). Rads did have more lasting effects, but actually at the moment other than just a little dry mouth late night, that's about it.

I'm not sure where you got those percentages, but I'm a little skeptical...they seem a little light. You are saying that you have a 70% chance of not having a recurrence with no radiation and 97 - 98% of no recurrence without having chemo....unless I read that wrong.

At those percentages, why would anyone go through treatment...it would tend to show that treatment is not really very effective or worth while?

I just tend to think (in my unprofessional opinion), that only having surgery and that resulting long term successfully would be an outcome in very few cases. Reserved mainly for Dx where the cancer is very specifically located in a really small area, and that a high percentage of success to remove it entirely would exist.

JG

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Skiffin,

What you said I said is not what I said. :)

Let me explain myself better. The rule of thumb is that radiation multiplies the risk of recurrence by 0.5 and chemo by 0.8. So, using my case as an example:

no treatment: risk of recurrence 30%
radiation only: risk of recurrence 30% * 0.5 = 15%
rads + chemo: risk of recurrence 30% * 0.5 * 0.8 = 12%

so that the difference in between doing and not doing chemo is, for me, about 15% - 12% = 3%.

Things are very different if someone cannot use surgery as the primary strategy or if there are grossly positive margins. In that case let's say the recurrence probability is 100% without further treatment. Then we have:

no treatment: risk of recurrence 100%
radiation only: risk of recurrence 100% * 0.5 = 50%
rads + chemo: risk of recurrence 100% * 0.5 * 0.8 = 40%

In this case chemo offers a 10% reduction in recurrence and clearly it becomes a more palatable alternative. In some papers I found reduction in recurrence up to 15% by adding chemo to radiation.

Together with other medical considerations, these are the numbers that doctors use to decide on which therapy is appropriate. I looked at the data in a few dozen papers and these rules of thumb seem decently accurate.

Three disclaimers:

1. All these numbers are about squamous cell carcinoma. Ohter head and neck cancers might respond differently.
2. These are pretty crude approximations, so a factor of 0.5 actually means "anything between 0.4 and 0.6"..
3. As we all know, one either has a recurrence or not and good or bad things sometimes happen despite the odds.

This being said, it's not that I feel particularly lucky. I will not do chemo but I'll get an extra dose of radiation (brachytherapy boost at the end of my ordinary IMRT treatment).

End of the post. Sorry for all the numbers.. to me this is a comforting way to think about cancer, but for some people it might not be the case.

Best of luck to everyone out there!

Dre.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Are you 100% sure about that....LOL

OK, I'll consider your explaination...have no clue how accurate it is, LOL.

But at least it sounds good.

Even in college I had some professors that would give you credit even for the wrong answer if you had a good arguement...

Best,
John

Sam999
Posts: 305
Joined: Mar 2012

I had my appointment with radiologist and she explained that theres is 90% chance that i am completely cured and do not require radiation. But the problem is that if i do fall in the 10% side than things can go bad in 6 months to a year to a point it might get too late for treatment or have far more complications. She said it really hurts her to put me thru this for the 10% chance but she has no choice as things can go really bad really fast. She said tongue cancer is the most aggresive form of cancer.

Based on this, we have finalised to go for radiation. It is going to be in my entire tongue plus the neck lymph nodes so it is going to be pretty brutal, she has not suggested putting a feeding tube yet.

I am so scared but i keep reading inspiring things written by everyone who has gone thru this. This site is life saver for me.

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

OK, my take on percentages.....

Don't buy into them.

Everyone is different, you have no idea whom fell into those groups of percentages, their general health or background, genetics, family history, or the motivation behind the scenes on who was doing the research, etc...

You are you, not a number, and have your own set of specifics going in.

Concentrate on you, staying as healthy as you can, taking in calories, staying super hydrated, and remaining positive of mind, body and spirit.

Based solely on the survivors that I have seen on this site during the last 3+ years. You have an excellent chance of beating this depending on your treatment.

My thoughts and prayers go out to you and Dre, along with all of the others and their family on here.

Best,
John

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

To error in C treatment- best way to do that is to error on the side of the aggressive. I would go with your Dr's advice. They'll get you the meds, and you'll be okay. Lot depends on the amount of rads applied, and maybe it won't be so bad. Only time will tell. You do want to make sure the C gets gone, Sam. Everyone is different, but my mouth healed pretty danged good. I was NPC unknown Primary, and my mouth took the biggest hit. I like to think it was my Nutrition intake that allowed the healing to happen as it did. I had a PEG, and had no negative experience with it for 15+ months. Your Drs know best the specifics of your C and what they got planned, so they likely do know best. Just keep them in the Loop as to how your are truly handling their treatment, so they can help all they can. And please keep us updated on how you're doing.

kcass

Sam999
Posts: 305
Joined: Mar 2012

Thanks everyone, yes i will definately keep updating once my treatment starts in 3 weeks. It really helps to have support we get from this site.

mls351w
Posts: 88
Joined: Jul 2011

Sam999, I was diagnosed with scc bot in 2006(53 years old). Given three choices. 1. Surgery and "mild" radiation. 2. No surgery with chemo and "heavier" radiation. 3. Do nothing. We chose chemo and rad. 2 weeks of 24-hr chemo and 8 weeks radiation to tonge and neck(had some lymph node issues). I worked until my second round of chemo.
Rad onc insisted on a peg before treatment started(thank God). During treatment my throat got so sore I could not swallow anything. I was living on Ensure and water through peg only.
I had 2nd degree burns on my neck and needed morphine patches(really nasty, slimy affairs. The burns were so bad that I got a 1 week break on rads around 6th week. Sailed through last 2 weeks. Had surgery to remove 5 lymph nodes in neck. Middle node was cancerous others clean.
Now the good news. I never had any sores or any other issues other than 2 cases of thrush.
Did loose taste, but it came back really fast with a vengence. Wierd but it seems like food tastes better than before, but some foods taste too salty. Saliva was back to normal within 2 weeks. Gums and teeth are in better shape than before because of the dental hygiene program that I follow faithfully. Lost about 10 lbs. Some nerve loss due to the neck surgery. 5+ years out and no side effects.
So long story short, don't stress over the possible side effects. They scared me senseless. You may not be as fortunate as I was, but you may not be as unfortunate as others. It effects everyone differently. I tried to remain positive and took one day at a time. I am probably one of the few people who made the journey with only minor difficulties. But, I know others did and you could also be one. Keep positive.
My best to you and will keep you in my thoughts.

Mark S.

Mrs. Sarge
Posts: 198
Joined: Apr 2012

for the encouragement. My radiation starts the 7th and as Sam, I am scared about the side effects. I talked to my rad/onc about all the different tips I read on these boards and he said it wasn't needed in my case, such as the PEG. You truly give me courage and since I HAVE to do it, I'm trying to go into it with a positive attitude, hoping for the best outcome (which of course is NO reoccurence). I don't have to do chemo, for which I'm thankful!

RayTodd's picture
RayTodd
Posts: 187
Joined: Aug 2011

All I know is what is said the most here we are all individuals our bodies all react individually.
I am 5 months out with just Rads and am scaring them with how well I am doing,but I have a totally dry mouth and not full taste pallet.
I lost a ton of weight but they could not put a peg in as from previous ops some of my intestines are attached to my stomach by scar lesions. So they put a naso gastric tube in it was one of the worst procedures I have ever had.It is temporary so as soon as I could I had to drink those tins of vitamised baby nappies. My throat and mouth was to sore even with anesthetic wash to swallow, and my tabs were nearly hell to take. Heres the weird part they gave me soluable panadol and meds wherever possible which was grate but all of a sudden just to keep it interesting panadol and other thing felt like acid in my mouth and throat anything to keep it interesting.
But I kept cracking jokes making others feel better which made me feel better,even when they put me in hospital for 2 weeks in a ward where almost everyone else was dying, even my wife and daughter both Reg. Nurses said as ill as I was I was he healthiest one on the floor, I suppose the staff did it to boost my moral LOL.
Wow this is the most I have ever explained hehehe but again we are all different its great to hear others who have had it tough but come through with varying after effects as for me I have what I consider tiny probs compared to some of my friends in real life who are terminal and on a very short time schedule.
We have a saying " every day above ground is a bonus" but I had an old bloke crack me up with his, he said every day before he get out of bed he does a little exercise he has hi arms bent and fists clenched and pushes his elbows out expanding his chest and if his elbows do not touch wood its going to be a good day.LOL

Sam999
Posts: 305
Joined: Mar 2012

It seems like radiation side affects truely differ from person to person but at the end we will all get thru. It seems percentage of lucky folks who have less side affects is low but it is a possibility and that small possibility gives me a hope.

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