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

Sam999
Sam999 Member Posts: 319 Member
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
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Comments

  • Marty36
    Marty36 Member Posts: 84
    Are they radiating tongue or neck?
    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
    longtermsurvivor Member Posts: 1,842 Member
    Hi Sam
    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Slow Down You Move To Fast...
    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
  • Sam999
    Sam999 Member Posts: 319 Member

    Hi Sam
    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

    thanks for all the replies.
    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
    longtermsurvivor Member Posts: 1,842 Member
    Sam999 said:

    thanks for all the replies.
    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.

    you have a good plan
    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
    phrannie51 Member Posts: 4,716
    My mom had very little in the way of side effects....
    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
    jtl Member Posts: 456
    I did not have the PEG like
    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
  • osmotar
    osmotar Member Posts: 1,006
    Radiation
    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
    Sam999 Member Posts: 319 Member
    osmotar said:

    Radiation
    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

    it is really nice to hear

    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
    Skiffin16 Member Posts: 8,305 Member
    Sam999 said:

    it is really nice to hear

    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

    Might Be Okay....Doubtful
    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
    RogerRN43 Member Posts: 185
    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
  • ooo
    ooo Member Posts: 105
    Hi Sam,
    welcome to the

    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
    Sam999 Member Posts: 319 Member
    RogerRN43 said:

    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

    aloe

    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
    RogerRN43 Member Posts: 185
    Sam999 said:

    aloe

    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

    Hi Sam
    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
  • Sam999
    Sam999 Member Posts: 319 Member
    ooo said:

    Hi Sam,
    welcome to the

    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

    Looks like we might be

    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
    Mrs. Sarge Member Posts: 206 Member
    Sam999 said:

    Looks like we might be

    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.

    Sam
    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
    ooo Member Posts: 105
    Sam999 said:

    Looks like we might be

    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.

    > I am still questioning if

    > 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
    Skiffin16 Member Posts: 8,305 Member
    ooo said:

    > I am still questioning if

    > 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!

    Depends....
    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
    ooo Member Posts: 105
    Skiffin16 said:

    Depends....
    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

    Hi Skiffin,
    What you said I

    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
    Skiffin16 Member Posts: 8,305 Member
    ooo said:

    Hi Skiffin,
    What you said I

    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.

    That's ODD...., now we're EVEN
    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