Should I do radiation?
Hello and thank you all for sharing your experiences. 20 years ago I had chemo & radiation for Hodgkins lymphoma. Had limited mantle radiation up to and including my neck. Last year I was diagnosed with SCC of tonsils and had bilateral modified neck dissection levels 1-5 ( cut ear to ear). Permanent side effects include shoulder pain and minor limitations, neck spasms and mildly sore jaw with slightly less ability to open. Also have mild dry mouth due to saliva glands removed during surgery. I refused radiation due to previously being radiated in region. Bad news...just informed cancer is back and surgery not an option. I am incredibly scared of radiation and all the side effects. I feel since I have been previously radiated in area, had surgery and would be chemoradiated ( all these variables increase chances of side effects) I will get every side effect in the most severe form. I am seriously considering living large for the next few months and moving on to the next phase of spirit life. I am a 53 year old married man with 3 children ages 30, 18 and 16.My question: would anyone reconsider their decision to radiate now that you gone through the process and are living with all the side effects? One of my main concerns is quality of life. Thank you very much for your insight...it is greatly appreciated!!
Comments
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yes seek treatment, kill the crud and live on
louhou13,
Welcome to the H&N forum, so sorry you find yourself here.
35 times I put on my mask for radiation due to stage IVa,scc,bot,1 lymph node, hpv+ (surgery, rads &Erbitux). If I had decided to live large it might be just about over for me now.
You never know for sure how bad the side effects will be. I was never in much pain until I experienced neck burn, some people are the opposite.
My taste buds got pretty wacked, but I had a heck of a good hotdog tonight, had two of them. Many things taste mediocre, but others are a delight, like a good steak.
I sleep very well and still have to get up to pee as I drink many glasses of water a day (it is a habit I picked up here). My dry mouth is improving every day. I haven’t gotten brave enough to go to bed without a Xylimelt or two, but I am getting close.
There are many people here with similar stories to yours and they are still living life to the max with multiple trips through treatments. It sounds like you have a lot to live for, why not hang around for another 30 years.
Matt
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Radiation
My husband had 2 rounds of radiation -- one starting in August 2010 and the other in May 2012. 35 rounds the first time and 37 the second time. Side effects were worse from the first round. 2nd round we were told it could rupture his cartoid artery since the radiation would be almost in the same spot. Radiation and chemo, then surgery for laryngectomy first round. NED one year before tumor was found at the cervical of his esophagus. Second radiation and chemo, then NED for 4 months. Surgery was ruled out the second time due to the radiation and the savage surgery that would be needed. Third time only chemo offerred due to spread to his right lung and return of the cancer at the cervical of his esophagus. He declined and today it has been almost one year and he is doing so-so but still is here.
This decision is yours and yours alone. I didn't try to talk my husband into more chemo and more radiation was ruled out. Can't say it has been hard but then again it hasn't been easy either. You are young compared to my husband. My husband was 73 when our journey started 3 years ago and he did well with all the radiation, chemo and surgery. But we knew that this time the chemo would be much harder on him than the other two times and he just felt enough was enough.
Wishing you the best. I have told our grown sons and families that after watching what he has been thru, I don't think I could or would go thru it but then again until I would be in that position, I don't know what I would do.
Sharon
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Hey Lou
Although most will have opinions on this, and the opinions will be variable, ultimately you are the one on the journey, and you are the one that will be making the decision. I've been radiated twice, and I have side effects that I have to live with, but that doesn't qualify me as an expert at anything except my own unique circumstances.
There are a few elements of your story that weren't stated, which would make some difference to me if I were in your predicament. Where is the cancer, precisely? What is its size, and has your workup indicated either regional or distant spread? Have you had HPV testing on this tumor?
One of the things that mitigates for radiation right now is the simple fact that, with mantle radiation, your actual prior dose to the neck was relatively low compared to what is typically given in throat cancer. this gives you an advantage over the ordinary guy like me that's actually been through a full dose twice. If you are HPV positive, they might be able to get away with a lower than maximal dose ow, say 56g instead of 70g.
I've been radiated twice, first with 70g in 1998, then with 68g two years ago. I admit the second treatment course has been life changing. I cannot eat solid food, have significant trismus, and perhaps am looking forward to some real jaw/dental issues. Too early to know on some of it. I am currently NED, not quite long enough past treatment to say I'm cured without qualification. My quality of life is actually very good. I have certain limitations, but am able to function very much as i would have without the treatment.
So for me the decision to retreat was a good one. I admit things might not have worked out this well, it was a calculated gamble on my part when I decided to pursue this second course. The other option was as you said.
Wishing you the best with whatever decision you make.
Pat
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Definitely ~ Yes
Like my other buds on here....
I to was STGIII SCC Tonsils HPV+..., including the chemo and 35 daily rads...
It was tough, took all of two years to completely get all taste back and most saliva. As for residual damage and quality of life. I don't have anything going on, other than being a tad abi-normal..., but in reality, I was already abi-normal before, so I'm the same, LOL.
Best,
John
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Hi Louhou
I know how you are feeling because when I was told that my NPC was back again I did not want to take radiation again. It was too hard on me, but then I had a talk with God about it and asked Him to give me the strength I needed and to help me through it. So I did the Radiation & Chemo treatment again. Was it hard yes, do I live with a lot of side effects yes I do. But I am still here and ever with all my problems I still work every day, I am still serving as an Elder in my Church. But most of all I am still here for my Wife & Children and I am a part of my Grandchildren’s life.
Look at the picture and ask yourself what you should do.
Is it worth, You bet it is.PS: Welcome to the family my friend
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For me.....I would definately
consider radiation again....especially nowdays where there has been advances in the machines.....two members here just went through treatment again with cutting edge radiation. One had cyberknife.....and the other had SBRT (in which treatment lasted only one week, was tageted....and the side effects were minimal). Definately these are things to look into before making a huge decision to do nothing....That's just me.....I'm not leaving my loved ones without a fight.....
p
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I would do it again.....
Lou
When I got diagnosed 3 years ago at age 55, I said I would do whatever it took to beat this beast.
So my 2 cents -- YES, go through the treatment again.
Side effects are still with me....but I am here to complain about them.
Every day I wake up is a good day.
I wish you well whatever you decide.
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Should I radiate? Thank you for the responses
Hello all, thank you very much for sharing your stories and experiences with me. My SCC is HPV-16+ and originated in left palatine tonsil and spread to a few nodes on the left and 1 on the right. Current cancer is in both sides of pharynx. I have read your comments several times and am still on the fence. On my way to get 2nd opinion. THANK YOU VERY MUCH for helping me!
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Thanks Matt, you are anCivilMatt said:yes seek treatment, kill the crud and live on
louhou13,
Welcome to the H&N forum, so sorry you find yourself here.
35 times I put on my mask for radiation due to stage IVa,scc,bot,1 lymph node, hpv+ (surgery, rads &Erbitux). If I had decided to live large it might be just about over for me now.
You never know for sure how bad the side effects will be. I was never in much pain until I experienced neck burn, some people are the opposite.
My taste buds got pretty wacked, but I had a heck of a good hotdog tonight, had two of them. Many things taste mediocre, but others are a delight, like a good steak.
I sleep very well and still have to get up to pee as I drink many glasses of water a day (it is a habit I picked up here). My dry mouth is improving every day. I haven’t gotten brave enough to go to bed without a Xylimelt or two, but I am getting close.
There are many people here with similar stories to yours and they are still living life to the max with multiple trips through treatments. It sounds like you have a lot to live for, why not hang around for another 30 years.
Matt
Thanks Matt, you are an inspiration!
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Hi Pat, what a great story.longtermsurvivor said:Hey Lou
Although most will have opinions on this, and the opinions will be variable, ultimately you are the one on the journey, and you are the one that will be making the decision. I've been radiated twice, and I have side effects that I have to live with, but that doesn't qualify me as an expert at anything except my own unique circumstances.
There are a few elements of your story that weren't stated, which would make some difference to me if I were in your predicament. Where is the cancer, precisely? What is its size, and has your workup indicated either regional or distant spread? Have you had HPV testing on this tumor?
One of the things that mitigates for radiation right now is the simple fact that, with mantle radiation, your actual prior dose to the neck was relatively low compared to what is typically given in throat cancer. this gives you an advantage over the ordinary guy like me that's actually been through a full dose twice. If you are HPV positive, they might be able to get away with a lower than maximal dose ow, say 56g instead of 70g.
I've been radiated twice, first with 70g in 1998, then with 68g two years ago. I admit the second treatment course has been life changing. I cannot eat solid food, have significant trismus, and perhaps am looking forward to some real jaw/dental issues. Too early to know on some of it. I am currently NED, not quite long enough past treatment to say I'm cured without qualification. My quality of life is actually very good. I have certain limitations, but am able to function very much as i would have without the treatment.
So for me the decision to retreat was a good one. I admit things might not have worked out this well, it was a calculated gamble on my part when I decided to pursue this second course. The other option was as you said.
Wishing you the best with whatever decision you make.
Pat
Hi Pat, what a great story. You are very brave and fortunate. I love your great attitude! More info on my diagnosis below. Thank you
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Hi Sharon, thank you for yourLadylacy said:Radiation
My husband had 2 rounds of radiation -- one starting in August 2010 and the other in May 2012. 35 rounds the first time and 37 the second time. Side effects were worse from the first round. 2nd round we were told it could rupture his cartoid artery since the radiation would be almost in the same spot. Radiation and chemo, then surgery for laryngectomy first round. NED one year before tumor was found at the cervical of his esophagus. Second radiation and chemo, then NED for 4 months. Surgery was ruled out the second time due to the radiation and the savage surgery that would be needed. Third time only chemo offerred due to spread to his right lung and return of the cancer at the cervical of his esophagus. He declined and today it has been almost one year and he is doing so-so but still is here.
This decision is yours and yours alone. I didn't try to talk my husband into more chemo and more radiation was ruled out. Can't say it has been hard but then again it hasn't been easy either. You are young compared to my husband. My husband was 73 when our journey started 3 years ago and he did well with all the radiation, chemo and surgery. But we knew that this time the chemo would be much harder on him than the other two times and he just felt enough was enough.
Wishing you the best. I have told our grown sons and families that after watching what he has been thru, I don't think I could or would go thru it but then again until I would be in that position, I don't know what I would do.
Sharon
Hi Sharon, thank you for your reply and candor; it was very helpful. I pray you and your husband have peaceful days ahead.
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Hey Jeff, wear size 12 and IDuggie88 said:Lou
I'm with my buddy Matt. If I were in your shoes (they have to be at least a size 13) there would be no hesitation, get the radiation. Go see the radiologist today and ask where do I sign.
Jeff
Hey Jeff, wear size 12 and I am glad you are not in my shoes. Still can't jump in but am dangling my toes. Thanks for your reply
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Hi John, love hearing yourSkiffin16 said:Definitely ~ Yes
Like my other buds on here....
I to was STGIII SCC Tonsils HPV+..., including the chemo and 35 daily rads...
It was tough, took all of two years to completely get all taste back and most saliva. As for residual damage and quality of life. I don't have anything going on, other than being a tad abi-normal..., but in reality, I was already abi-normal before, so I'm the same, LOL.
Best,
John
Hi John, love hearing your story. 2 years out and doing so well - congratulations! Thanks for sharing...gives me hope
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Hi Hondo, very persuasiveHondo said:Hi Louhou
I know how you are feeling because when I was told that my NPC was back again I did not want to take radiation again. It was too hard on me, but then I had a talk with God about it and asked Him to give me the strength I needed and to help me through it. So I did the Radiation & Chemo treatment again. Was it hard yes, do I live with a lot of side effects yes I do. But I am still here and ever with all my problems I still work every day, I am still serving as an Elder in my Church. But most of all I am still here for my Wife & Children and I am a part of my Grandchildren’s life.
Look at the picture and ask yourself what you should do.
Is it worth, You bet it is.PS: Welcome to the family my friend
Hi Hondo, very persuasive argument! Great picture!! I am still "waiting for the sign" but am very inspired by you. Thank you for sharing
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Hi P, great picture. Thanksphrannie51 said:For me.....I would definately
consider radiation again....especially nowdays where there has been advances in the machines.....two members here just went through treatment again with cutting edge radiation. One had cyberknife.....and the other had SBRT (in which treatment lasted only one week, was tageted....and the side effects were minimal). Definately these are things to look into before making a huge decision to do nothing....That's just me.....I'm not leaving my loved ones without a fight.....
p
Hi P, great picture. Thanks for the info on cyberknife and SBRT. I am getting 2nd opinion today and will ask about those options. I greatly appreciate your reply
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Hi Ingrid, still here toIngrid K said:I would do it again.....
Lou
When I got diagnosed 3 years ago at age 55, I said I would do whatever it took to beat this beast.
So my 2 cents -- YES, go through the treatment again.
Side effects are still with me....but I am here to complain about them.
Every day I wake up is a good day.
I wish you well whatever you decide.
Hi Ingrid, still here to complain put a smile on my face, thank you. I'm glad you are still here! Thanks for replying
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given this situationlouhou13 said:Should I radiate? Thank you for the responses
Hello all, thank you very much for sharing your stories and experiences with me. My SCC is HPV-16+ and originated in left palatine tonsil and spread to a few nodes on the left and 1 on the right. Current cancer is in both sides of pharynx. I have read your comments several times and am still on the fence. On my way to get 2nd opinion. THANK YOU VERY MUCH for helping me!
I am ready to vote: personally I' would elect to treat. You had mantle radiation, which generally is done in the shape of a "T", above the diaphragm but below "for the most part" where you would be radiated this time. In other words, there wouldn't be much field overlap, and you would be more like a first time treatment than a second time treatment. Your HPV confers a significant survival advantage as well. If you are really freaking out, ask them about reduced dose treatment for hpv positives. Not approved yet, but there is literature evidence to support it.
Pat
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Do itlongtermsurvivor said:given this situation
I am ready to vote: personally I' would elect to treat. You had mantle radiation, which generally is done in the shape of a "T", above the diaphragm but below "for the most part" where you would be radiated this time. In other words, there wouldn't be much field overlap, and you would be more like a first time treatment than a second time treatment. Your HPV confers a significant survival advantage as well. If you are really freaking out, ask them about reduced dose treatment for hpv positives. Not approved yet, but there is literature evidence to support it.
Pat
You have the same diagnosis as my husband.
7 weekly chemos and 35 rads. Was it easy Hell no, but would he do it again? He said, until doctors tell him he is terminal he would do what it takes to saty here with me and the kids.
It will be the toughest thing you have done to date, but my hubby is up, working, living life and enjoying everyday.
He is only 4.5 months out and still has dry mouth and taste is really lacking, he eats to sustain right now knowing most of it all will come back with time.
He was miserable but he slept a lot and does say it really did go by quickly. He is NED now and lviing like cancer never disrupted out lives.
Please think hard about radiation. It has been a lifesaver for everyone here.
Sandy
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Actually...louhou13 said:Hi John, love hearing your
Hi John, love hearing your story. 2 years out and doing so well - congratulations! Thanks for sharing...gives me hope
I'm going on five years out...
Dx January 2009, finished Tx June 2009....
Many here much further out than myself..., you will be also...
John
0
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