Can I risk not having radiation?
I am new to this website, and I am glad to have come across it as it has been a hard adjustment, to say the least.
I was diagnosed with a tumour in my tongue at 26 (I just turned 27)in October 2010. It was not alcohol or tobacco related as I have never smoked and do not drink. It also came back negative for HPV.
I had it removed November 1, 2010, and flap created from my arm. Unfortunately it spread to my lymph nodes, but only to two of them and the surgeon is confident it did not spread to anywhere else. The margins around my tongue were also negative. So I had Stage IV, T2 tumour.
I know that stage four is serious, but is there anyone in the same sitation who ONLY had the tumour surgically removed with removal of some lymph nodes, without radiation or chemo??
The doctors have decided that I need radiation and have told me that I am taking a huge chance if I don't do radiation. They look at me as completely irrational for not wanting this treatment because of a few side effects. I know the doctors are trying to help me and give me the best treatment possible, but I am absoluately terrified of radiation and it's long-term side effects. I have just reluctantly started week 3.
Am I fighting this way too much? Do I need to just accept this even though everytime I go in I feel so defeated? I know others have it worse, but emotionally and mentally I am having a hard time and just can't get past the idea that maybe I don't need radiation.
Any advice would be greatly appreciated.
Comments
-
Hello Agatha
Welcome to CSN I am sorry to hear about your cancer but glad you found this place where you can get support and help through your treatment. Your question on do you need radiation treatment and being afraid of the side affects is the same questions we all ask. I was 42 when I first found out I had NPC, it came back 3 times I am now 54 and still here to see my grandchildren and to be part of there live.
You are right the treatment is hard but life after cancer treatment is still good and going on everyday as many here will testify.
All the best to you and hope you plan to stay with us.
Hondo0 -
NOHondo said:Hello Agatha
Welcome to CSN I am sorry to hear about your cancer but glad you found this place where you can get support and help through your treatment. Your question on do you need radiation treatment and being afraid of the side affects is the same questions we all ask. I was 42 when I first found out I had NPC, it came back 3 times I am now 54 and still here to see my grandchildren and to be part of there live.
You are right the treatment is hard but life after cancer treatment is still good and going on everyday as many here will testify.
All the best to you and hope you plan to stay with us.
Hondo
and NO!0 -
how I felt
agatha-
1st...welcome to CSN. the people here have been a wonderful source of support for me through my treatments. I was diagnosed with Mucoepidermoid Carcinoma (a salivary gland tumor) in June. It was on my hard palate. I too am a non-smoker, rare drinker, and I am fairly young (31). I had a stage 4 clinically, stage 2 pathologically tumor that was the size of a golfball. it grew from my hard palate into my sinus cavity and began to press on bone. I had no spread and there was no evidence of it in any of my lymph nodes.
what type of tumor were you diagnosed with? that can be as important as the stage of a tumor.
with my type it is important to know stage and grade. the grade is more likely to indicate recurrence and lifespan...thus it determines the types of treatment to be used. I thought that the day when I found out I had cancer would have been the worst day ever, but I was more emotionally destroyed when I found out I was no longer low grade...which meant I wouldn't need radiation. when I found out I was intermediate grade I stayed strong at the doctor's office, but broke down in the hall and then many times at home. i knew that intermediate grade for my type of tumor gave me much better odds of the tumor never coming back. if my type comes back, it usually comes back high grade which is much much harder to treat...it spreads too quickly.
Since you are already undergoing radiation treatments it is probably best to continue with the treatments. and I saw on your profile that you were afraid you would be infertile if you had chemotherapy...not everyone who has chemo ends up infertile...it depends on the dose and the type used. talk to your doctors, get second and third opinions, then you just have to trust that there is a reason why they think you need the treatments...it all depends on the type of tumor you have.
wishing you the best.
hugs...we all need a hug sometimes!0 -
UMMM HELLO.....
Hi Agatha, and welcome to the forum...without coming across too bold on your first post. I was just looking at your post below;
I know the doctors are trying to help me and give me the best treatment possible, but I am absoluately terrified of radiation and it's long-term side effects.
I just have to ask you....if the possible alternative to not having the radiation as your doctor's strongly suggest is, well ummm, to be blunt, not being a survivor. Would you consider those few side affects as being acceptable, how lucky do you feel? Unfortunately, there are no guarantees with this, and everyone is different. You could opt out, and everything workout for you.
As for me, I completely trust my doctors decisions. If that's the real issue address that. After all, they are the professionals, that's why you are going to them.
Sorry and please don't take too much offense to what I say. But life with a few side effects is much better than the alternative.
Best,
John0 -
I gotta agree with 'Skiffin16'Skiffin16 said:UMMM HELLO.....
Hi Agatha, and welcome to the forum...without coming across too bold on your first post. I was just looking at your post below;
I know the doctors are trying to help me and give me the best treatment possible, but I am absoluately terrified of radiation and it's long-term side effects.
I just have to ask you....if the possible alternative to not having the radiation as your doctor's strongly suggest is, well ummm, to be blunt, not being a survivor. Would you consider those few side affects as being acceptable, how lucky do you feel? Unfortunately, there are no guarantees with this, and everyone is different. You could opt out, and everything workout for you.
As for me, I completely trust my doctors decisions. If that's the real issue address that. After all, they are the professionals, that's why you are going to them.
Sorry and please don't take too much offense to what I say. But life with a few side effects is much better than the alternative.
Best,
John
Your doctor may be confident that "it hasn't spread to anywhere else" but as I've stated so many times, a doctor can only base a decision on the data in front of them. In my case the original pathology report indicated lymph node infiltration. I could have gone to 10 doctors and they all would have had me on radiation AND chemo. But I had the path work redone and reviewed again 2 more times and as it turns out the first report was WRONG.
The other thing to consider is that testing is not a 100% certain guarantee. PET and CT will only detect masses larger than about 5mm. That's bigger than a pencil lead. Even though a path report says full encapsulation with clean margins, that's only for that individual mass/tumor. My post-surgical PET/CT showed me clean and every doctor told me that was not enough. I needed radiation to make sure they got anything remaining. Could it have been overkill? Maybe. But when your gambling with your life...
I would think that stage-IV would INSTANTLY put you into the chemo/radiation camp. Radiation at least. Please consider getting additional opinions. I went to a local doc, Johns Hopkins and Wake Forest/Baptist. Your potentially playing with your life here. I'm a little surprised an Oncologist is hinting that surgery is all that's needed for a malignancy in a neck node. Please reconsider.
BEST OF LUCK!!!0 -
agree yes to radiationBigfuzzydoug said:I gotta agree with 'Skiffin16'
Your doctor may be confident that "it hasn't spread to anywhere else" but as I've stated so many times, a doctor can only base a decision on the data in front of them. In my case the original pathology report indicated lymph node infiltration. I could have gone to 10 doctors and they all would have had me on radiation AND chemo. But I had the path work redone and reviewed again 2 more times and as it turns out the first report was WRONG.
The other thing to consider is that testing is not a 100% certain guarantee. PET and CT will only detect masses larger than about 5mm. That's bigger than a pencil lead. Even though a path report says full encapsulation with clean margins, that's only for that individual mass/tumor. My post-surgical PET/CT showed me clean and every doctor told me that was not enough. I needed radiation to make sure they got anything remaining. Could it have been overkill? Maybe. But when your gambling with your life...
I would think that stage-IV would INSTANTLY put you into the chemo/radiation camp. Radiation at least. Please consider getting additional opinions. I went to a local doc, Johns Hopkins and Wake Forest/Baptist. Your potentially playing with your life here. I'm a little surprised an Oncologist is hinting that surgery is all that's needed for a malignancy in a neck node. Please reconsider.
BEST OF LUCK!!!
Hi Agatha. Sorry to hear you are on this board.
In my opinion, I would go with the radiation. The fact that there was just a mets to lymph nodes, and they were able to remove a lot with surgery, then radiation you may have may be lower rads and to less of an area, thereby minimizing the side affects for you. My husband got through with the 33 rounds of radiation in November. I think he is doing pretty well considering and the side affects from the radiation (mostly loss of saliva for him at this point) seems very managable. The long term side affect from what i understand may be thyroid, which also is very manageable with synthroid pills.
hope this helps you make a decision. good luck.
suzanne0 -
ADDITIONAL TREATMENT AFTER SURGERY
Hi Agatha, sorry you find yourself here, but it already looks like you are receiving some good info here.
My opinion is to have all of the treatment. Chemo and Radiation. I am almost 9 weeks post and so far have a clean Neck CT and Chest CT. I have my first PET in February. I never once wanted to risk not getting this all the first time. Yes, some of the side effects are miserable, but I am here living in the now.
Thanks and good luck.
Mike0 -
I’m no expert, but I’ll
I’m no expert, but I’ll tell you of my experience.
In 2007, I was diagnosed with SCC on the side of my tongue. Started with a 2 spots of leukoplakia, but then a sore developed that wouldn’t go away. Laser surgery removed the leukoplakia, and the sore. Path result showed “abnormal cells”, but no cancer. The sore came back. A more radical surgery was performed where the side of my tongue was removed, going deeper into the tissue. This time, the biopsy was positive for cancer. The surgeon was not comfortable with the margins. He consulted with a colleague, and it was decided that instead of radiation therapy, it would be best to remove more tissue just to be sure. So, a third surgery to remove more tissue was performed.
Two and a half years of follow-ups, and the sore re-appeared. A biopsy showed cancer again, same side of the tongue where it appeared before. I was then sent to Yale New Haven for a consult. I was advised that the best course of action, since this was a re-occurrence was surgery (again!) chemo, and radiation. Final result was Stage IVa SCC, two lymph nodes involved, no mets. Chemo and rads were no picnic, but in my case it’s the course of action that gives me the best chance for survival
I am now four months post-treatment. I can eat most anything, taste is almost where it should be, and my strength has returned. I’m still a bit skinny, but I could afford to lose some weight anyway!
I guess the point to my rambling is this: Maybe if I had the radiation treatment back in 2007, I wouldn’t have had to go through what I went through this past summer. “Maybe” is a big word in this context. Hindsight being 20/20, I would have opted for the radiation three years ago.
I feel confident that the cancer was removed, and the chemo and radiation mopped up any stray beasties that may have been left behind. Please don’t take my story as gospel. Do research, get information, hang out in this forum, and absorb everything you can. Then make a decision.
Good luck, and God bless.
Mark0 -
Risk Reward
It's all about taking a risk and getting the reward.
I did the treatments both radiation and chemo almost 15 years ago, the treatments and the small things to help with pain and reduce the side effects are much better today than in Jan. of 1996.
I have enjoyed having the new normal for the last 14 years, 11 months, 18 days post diagnosed.
Welcome to CSN, the posts for all are from people who care about all others that are troubled with cancer.0 -
ThanksHondo said:Hello Agatha
Welcome to CSN I am sorry to hear about your cancer but glad you found this place where you can get support and help through your treatment. Your question on do you need radiation treatment and being afraid of the side affects is the same questions we all ask. I was 42 when I first found out I had NPC, it came back 3 times I am now 54 and still here to see my grandchildren and to be part of there live.
You are right the treatment is hard but life after cancer treatment is still good and going on everyday as many here will testify.
All the best to you and hope you plan to stay with us.
Hondo
Hi Hondo,
Thank you, I am glad to have found this site as well and I appreciate your words of encouragement. I guess acceptance of cancer is one of the hardest parts. After having half my tongue removed, huge difference to my arm, my speech, and not being sure if I can ever be a teacher again because of my speech, I just thought I could get away with not having radiation.0 -
p.s. I am glad to hear youHondo said:Hello Agatha
Welcome to CSN I am sorry to hear about your cancer but glad you found this place where you can get support and help through your treatment. Your question on do you need radiation treatment and being afraid of the side affects is the same questions we all ask. I was 42 when I first found out I had NPC, it came back 3 times I am now 54 and still here to see my grandchildren and to be part of there live.
You are right the treatment is hard but life after cancer treatment is still good and going on everyday as many here will testify.
All the best to you and hope you plan to stay with us.
Hondo
p.s. I am glad to hear you are still here and well.0 -
Hi ekdennie,ekdennie said:how I felt
agatha-
1st...welcome to CSN. the people here have been a wonderful source of support for me through my treatments. I was diagnosed with Mucoepidermoid Carcinoma (a salivary gland tumor) in June. It was on my hard palate. I too am a non-smoker, rare drinker, and I am fairly young (31). I had a stage 4 clinically, stage 2 pathologically tumor that was the size of a golfball. it grew from my hard palate into my sinus cavity and began to press on bone. I had no spread and there was no evidence of it in any of my lymph nodes.
what type of tumor were you diagnosed with? that can be as important as the stage of a tumor.
with my type it is important to know stage and grade. the grade is more likely to indicate recurrence and lifespan...thus it determines the types of treatment to be used. I thought that the day when I found out I had cancer would have been the worst day ever, but I was more emotionally destroyed when I found out I was no longer low grade...which meant I wouldn't need radiation. when I found out I was intermediate grade I stayed strong at the doctor's office, but broke down in the hall and then many times at home. i knew that intermediate grade for my type of tumor gave me much better odds of the tumor never coming back. if my type comes back, it usually comes back high grade which is much much harder to treat...it spreads too quickly.
Since you are already undergoing radiation treatments it is probably best to continue with the treatments. and I saw on your profile that you were afraid you would be infertile if you had chemotherapy...not everyone who has chemo ends up infertile...it depends on the dose and the type used. talk to your doctors, get second and third opinions, then you just have to trust that there is a reason why they think you need the treatments...it all depends on the type of tumor you have.
wishing you the best.
hugs...we all need a hug sometimes!
Thank you and I
Hi ekdennie,
Thank you and I am sorry to hear about your diagnosis.
I am not sure what type of tumour it is. I was just told that it was T2 and stage IV because it was in 2 of 37 lymph nodes, but it did not spread beyond that. At the time of my biopsy I was told it was "moderately differentiated". I am not sure if that tells me what type of tumour it was? I know it was rather large, but he took out more tongue than he needed in order to be sure he got it all out. I am convinced a tooth caused this, as I had my wisdom teeth, which kept interfering with my tongue on the side the tumour developed.
I am worried of the long term effects on my teeth, dry mouth, and if I ever need an extraction there is a possibility I may develop a condition called osteoradionecrosis, which is what worries me the most. My thyroid will also most likely be affected. I went to a fertility doctor after I found out about the infertility side effect of chemo and was told that it was very likely I would not be able to conceive on my own. The only option was to freeze eggs before chemo, or receive donor eggs after chemo. So, unfortunately with the type of chemo they were thinking of giving me, I would have most likely gone into very early menopause and not be able to have children.
Thanks for the hugs, it's true we do need them sometimes. Take care.0 -
John,I realize they seemSkiffin16 said:UMMM HELLO.....
Hi Agatha, and welcome to the forum...without coming across too bold on your first post. I was just looking at your post below;
I know the doctors are trying to help me and give me the best treatment possible, but I am absoluately terrified of radiation and it's long-term side effects.
I just have to ask you....if the possible alternative to not having the radiation as your doctor's strongly suggest is, well ummm, to be blunt, not being a survivor. Would you consider those few side affects as being acceptable, how lucky do you feel? Unfortunately, there are no guarantees with this, and everyone is different. You could opt out, and everything workout for you.
As for me, I completely trust my doctors decisions. If that's the real issue address that. After all, they are the professionals, that's why you are going to them.
Sorry and please don't take too much offense to what I say. But life with a few side effects is much better than the alternative.
Best,
John
John,
I realize they seem like a few side effects, but I just feel after the surgery and everything that has happened I have more to worry about after radiation then just my speech. I understand that I should feel grateful if radiation kills off anything bad that is left and I get to be alive. The real issue isn't my doctor, it's about my quality of life after all this is said and done.
I don't take offense, I see where you are coming from. I just have this hope in me that radiation isn't needed. It is quite likely I am in denial.0 -
Thanks, Mike. I hope I canluv4lacrosse said:ADDITIONAL TREATMENT AFTER SURGERY
Hi Agatha, sorry you find yourself here, but it already looks like you are receiving some good info here.
My opinion is to have all of the treatment. Chemo and Radiation. I am almost 9 weeks post and so far have a clean Neck CT and Chest CT. I have my first PET in February. I never once wanted to risk not getting this all the first time. Yes, some of the side effects are miserable, but I am here living in the now.
Thanks and good luck.
Mike
Thanks, Mike. I hope I can have some of your positivity one day.0 -
Thanks, Mike. I hope I canluv4lacrosse said:ADDITIONAL TREATMENT AFTER SURGERY
Hi Agatha, sorry you find yourself here, but it already looks like you are receiving some good info here.
My opinion is to have all of the treatment. Chemo and Radiation. I am almost 9 weeks post and so far have a clean Neck CT and Chest CT. I have my first PET in February. I never once wanted to risk not getting this all the first time. Yes, some of the side effects are miserable, but I am here living in the now.
Thanks and good luck.
Mike
Thanks, Mike. I hope I can have some of your positivity one day.
And I am glad to hear things are looking good for you.0 -
Thanks for your input,Bigfuzzydoug said:I gotta agree with 'Skiffin16'
Your doctor may be confident that "it hasn't spread to anywhere else" but as I've stated so many times, a doctor can only base a decision on the data in front of them. In my case the original pathology report indicated lymph node infiltration. I could have gone to 10 doctors and they all would have had me on radiation AND chemo. But I had the path work redone and reviewed again 2 more times and as it turns out the first report was WRONG.
The other thing to consider is that testing is not a 100% certain guarantee. PET and CT will only detect masses larger than about 5mm. That's bigger than a pencil lead. Even though a path report says full encapsulation with clean margins, that's only for that individual mass/tumor. My post-surgical PET/CT showed me clean and every doctor told me that was not enough. I needed radiation to make sure they got anything remaining. Could it have been overkill? Maybe. But when your gambling with your life...
I would think that stage-IV would INSTANTLY put you into the chemo/radiation camp. Radiation at least. Please consider getting additional opinions. I went to a local doc, Johns Hopkins and Wake Forest/Baptist. Your potentially playing with your life here. I'm a little surprised an Oncologist is hinting that surgery is all that's needed for a malignancy in a neck node. Please reconsider.
BEST OF LUCK!!!
Thanks for your input, bigfuzzydoug.
I realize it is playing with my life. No, both my surgeon and oncologist are against me not continuing with radiation. They even said they would make me sign a paper stating that they have advised against this. They are very confident for a cure with radiation, based on my path report after surgery. I was just wondering if anyone here had a similar situation and did not have to go through radiation.
Best of luck to you as well.0 -
Hi MarkMarkN_CT said:I’m no expert, but I’ll
I’m no expert, but I’ll tell you of my experience.
In 2007, I was diagnosed with SCC on the side of my tongue. Started with a 2 spots of leukoplakia, but then a sore developed that wouldn’t go away. Laser surgery removed the leukoplakia, and the sore. Path result showed “abnormal cells”, but no cancer. The sore came back. A more radical surgery was performed where the side of my tongue was removed, going deeper into the tissue. This time, the biopsy was positive for cancer. The surgeon was not comfortable with the margins. He consulted with a colleague, and it was decided that instead of radiation therapy, it would be best to remove more tissue just to be sure. So, a third surgery to remove more tissue was performed.
Two and a half years of follow-ups, and the sore re-appeared. A biopsy showed cancer again, same side of the tongue where it appeared before. I was then sent to Yale New Haven for a consult. I was advised that the best course of action, since this was a re-occurrence was surgery (again!) chemo, and radiation. Final result was Stage IVa SCC, two lymph nodes involved, no mets. Chemo and rads were no picnic, but in my case it’s the course of action that gives me the best chance for survival
I am now four months post-treatment. I can eat most anything, taste is almost where it should be, and my strength has returned. I’m still a bit skinny, but I could afford to lose some weight anyway!
I guess the point to my rambling is this: Maybe if I had the radiation treatment back in 2007, I wouldn’t have had to go through what I went through this past summer. “Maybe” is a big word in this context. Hindsight being 20/20, I would have opted for the radiation three years ago.
I feel confident that the cancer was removed, and the chemo and radiation mopped up any stray beasties that may have been left behind. Please don’t take my story as gospel. Do research, get information, hang out in this forum, and absorb everything you can. Then make a decision.
Good luck, and God bless.
Mark
So glad to have you here with us with us on CSN, thanks for the input, like you said hindsight being 20/20 would sure help in knowing what to do for the future. At some point we need to just trust what our doctors tell us and if we don’t like it get a second opinion.
Happy Holidays to you my friend.0 -
No Radiation
Hi, Agatha. I went through this same decision process this year. I had surgery to remove my right parotid gland and 9 lymph nodes. The gland was malignant, but the lymph nodes were clean. My surgeon said the margins were clean on the salivary gland excision. However, the margin was very, very thin and he told me I needed to have radiation in case some of the cells had been missed. I agonized over this decision. I remember asking myself why I should subject myself to the unknown of radiation if all of the cancer had been removed? I remember being very afraid of the side effects of radiation and I nearly said 'no'. However, after careful consideration (and some coaching by my beloved wife), I conceded that it was best to not take a chance with a decision that could be so important to my life. If I was wrong and the cancer started growing someplace else, it could be much, much worse than the original cancer. So, I decided in favor of the radiation and I endured it this past summer. I was very much afraid as I went through the treatments that something terrible was going to hit me, but I managed to get through with only moderate side effects. Today, I am NED and doing just fine. Yes, this is indeed a tough decision, but I trusted in my doctors.
Roger0 -
type of cancer
Agatha, it is very important that you ask one of your doctors what cancer you have beyond tongue cancer. could it be squamous cell carcinoma? mine was mucoepidermoid carcinoma (rare salivary gland tumor).
since you have a moderately differentiated tumor, it would be recommended that you have radiation. that usually means that the cells within your tumor do not look normal nor are they at the stage where they would be spreading rapidly. your cells would be somewhere in between.
I understand that you won't like to hear this, but most side effects are temporary. if you quit the radiation, then you are letting the cancer win, if there are any cells left...which is often the case. yes you had a devastating surgery and you are still coming to terms with it, but if you quit now and the cancer comes back and you have to have an even more dramatic surgery or if they can not offer you a cure, how would you feel then? Your doctors would not suggest radiation just because, and since they have talked about chemo as well, that means that they really want to get rid of it. it means they don't feel the surgery alone was enough based on the type of tumor it was, not just the stage of the tumor.
a lot of people who have head and neck cancers need to seek counseling to help get through this time. you are not alone in feeling defeated, but if you try to look at it in a different way...the way I looked at it was the surgery was the eviction notice for my tumor, but the radiation was the deep cleaning that needed to be done to make sure the "tenant" (the tumor) didn't leave something behind. it helped me not get too down during treatment.
try to stay strong and think about a future where you not only have kids, but you have grandkids. you never know, this radiation treatment could mean that you will be able to watch your future children have children. without the treatment the likelihood that you could watch that same scene goes dramatically down...regardless of the type of tumor you have.
another hug coming your way!0 -
POSITIVITYAgatha said:Thanks, Mike. I hope I can
Thanks, Mike. I hope I can have some of your positivity one day.
Hi Agatha, you already do have the positive attitude, it is just buried beneath the fear of having cancer. Believe me when I say this, not every day for me looks to be as upbeat as I may appear. I have had my "woe is me" or my "i am scared shitless" and do not know what to do.
Let us help, it will get better.Please believe in your ability to want to get better, you may not know exactly how this will happen yet, but it will happen. Personally I think you should elect to let the Doc's do the radiation and chemo if needed. It will be hard, but you will come out the other end OK.
Please PM me if you ever want to just dump on someone, it is ok.
BEST!!
Mike0
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