Can You Get a Second Radiation? Really Scared Now!
There is a chance my neck cancer is back. It is not at all clear. I was told by the doctor at Cleveland Clinic over 7 years ago that a second round of radiation is possible. I had a nonspecific site neck cancer so they radiated my entire neck, but concentrated on left side, mostly left side. The cancer now appears on back of voice box, not where it was before. Anyone have any experience with second round or radiation?
Also my ENT says the only way to get rid of the cancer to totally remove my voice box. A partial removal never works. Anyway ever heard this, that a partial removal never works.
To say I am scared is the understatement of the year.
Comments
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HobbsDoggy
I am sorry to read that you have to deal with this again. I may be able to at least answer one of your questions, the 2nd Radiation part. According to my Radiation Oncologist, many of us can have Radiation again but there are some guidelines the RO's look at. One of them is the number of Radiation treatments we receive as well as the number of Gy's. I was told that I would be a good candidate for Radiation again if I needed it which I am grateful that I haven't.
I seem to remember reading here that several different members have gone thru 2nd Radiation treatments; I just don't remember who they are at the present time.
Can you get a 2nd opinion maybe even a 3rd before making a final decision? I wish I could be more helpful. Hopefully others will be a long soon with more suggestions, knowledge.
My Best to You and Everyone Here
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HobbsDoggy I Had Second Radiation
Although from what I have read on here and heard from elsewhere they do not like to do it if possible. As every time you get radiation it makes things like your skin and throat, etc. a little stiffer and less flexible. I always compare it to new leather. It is soft and pliable but an older piece is less flexible and somewhat stiff. I think that is why a lot of us can still swallow but not as we once did because of the radiation.
I had throat cancer in 2013 with 35 radiation treatments. Just last year in September I was operated on for lymph node cancer on my left side. I had cancer in one node but it had grown out of the node and had started invading tissue. It had started to wrap around my carotid artery and during the operation, they had to remove some muscle also. So I had my surgery was done at a larger teaching hospital (Hershey Med) but had my follow up rads near where I live at Ann Barshinger Cancer Center. I talked to my previous radiation doctor and he said this type of cancer tends to come back if you don't do follow up rads. So since I had previous rads he used my recent CAT and PET scans and the operation information and my previous rad plan to come up with a careful follow-up plan of 30 rad treatments and trying their best to give me effective follow-up treatment but not cover previous areas any more than necessary and protect my swallowing and other functions.
So I would say it is a case by case thing where each person will be different and require a different plan. But you can have rads a second time but as I said previously I think the after-effects can stack up if an area is reradiated too much.
I can't answer your question about partial or full removal of the voice box.
The question is what makes you think you have cancer of the voice box? Did your ENT do a scope and see something? Have you had a CAT scan with dye or a PET scan? According to your description it looks like you are dealing with your ENT. How big is your cancer and are they sure it is cancer. We always say on here it is not cancer till they say it's cancer which is usually verified with a biopsy. I am certainly pulling for you that this is not advanced or for that matter cancer at all-Take Care-God Bless
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HD
Did a Google thing to see C in the larynx- is white, as I've been aware of as a typical C color, Russ. My ENT said it can also just be a red bump.
I worked with a man who had C on one side of his larynx, and it was obvious something was going on by his voice. He was treated w/Rads only, and also only got zapped in 3 places/session. Couple years later the C showed up on his tongue!!! Went to the U of Iowa and had a small part of his tongue removed, and now gets checked-out every 6 months. He had only gone to an ENT Dr. before the Rads. I asked him about a Pet Scan, and he didn't seem to know what that was! Obviously, if you have C you should get a Pet/CT to find-out where any C is.
Cleveland Clinic is supposed to be one of the top C Centers, HD. Removal of the larynx/voice box does sound extreme. If you are gonna get Rads there, too, I would not think it is a problem if your previous Rads were higher to the throat. Hondo/Tim was one who had Rads in the same place, and the result was not Patient-friendly. Like Russ alluded to- Rads in the same place can compound the damage/side-effects: tissue and scar tissue, or possibly nerve or muscular.
Please keep us informed. Thoughts and Prayers are with you.
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Is ir Cancer
You are right. At this point not 100% sure its cancer. My ENT is a great ENT, but not a cancer specialist. He is doing the best possible job, but his work on this has been going on for about 6 weeks now. I had a very bad infection but he did see "something" he did not like besides the infection. His descriptions have all been vague, I am sure because he has to be vague. He decided to do a PET scan. A the was a light up spot on the back of my vocal cord (at first he said my entire vocal cords lite up) and it is a small spot. You are also right could be something else but since it lite up i am while hopeful not really confident. It has been a yo yo, at first he was confident it was very unlikely cancer and most likely just a bad infection and scaring he saw now with the PET scan seems leaning much more the other way and saying no chance of another round of radiation the only treatment is total removal of vocal cords. He doe however say with that procedure prognosis for survival for 10 years is good.
I have contacted Cleveland Clinic where I got part of my treatment for my neck cancer the first time. I am thinking that if it is cancer I need a team of specialist on my side. I know i am being partially hysterical but I am really scared and not sure what to do. My hope is that I am completely wrong and I will sheepishly admit it to the group here and have a good lesson for others on how not to handle things
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HobbsDoggy I Certainly
Hope you are completely wrong and you will have to sheepishly admit it to the group. That would be fantastic. In the meantime get 2nd and 3rd opinions or whatever makes you comfortable to be sure of what is going on and your treatment plans if any. One more thing anytime I had cancer and it was 3 times now after any scans and anything lit up they always, I repeat always, took a biopsy to absolutely verify it was or was not cancer and what kind of cancer such as squamous cell. You do not mention getting a biopsy. I would recommend asking your doc to get one for you just to be sure. That is the usual course. ENT sees something or feels something not quite right. Then they would order a CT scan with dye. If it shows anything such as a hot spot or a tumor they then take a tissue biopsy to verify cancer or not. If it is cancer they then order a PET whole-body scan, they call it "eyes to thighs" to see if you have cancer anywhere else in your body. Take Care-God Bless
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I Will Get Biopsy Tomorrow
Soirry if I misled, my ENT is not sure its cancer as he thinks it is possible that the light up is (was) an infection,. but not looking good for that where it is, back of vocal cords. He is doing a biopsy tomorrow morning. I am hoping (praying) that it is just a left over piece of the really nasty infection I had, but it is not looking good for that.
When they did the PET scan they did a almost full body one and the only place that showed up was the vocal cord spot. It was as you say eyes to thights.
If it's OK to ask you said you had cancer three times, were they all three head and neck? Did they do the same type of treatment each time? You are and NED now? You are a fighter and give me hope, thank you so much.
My general plan is if its cancer and unless its a very easy fix, like a small we can get this now and quickly I think I am headed to Cleveland Clinic, I live in Northern Michigan and while they have some great doctors here who really care they are not head and neck cancer specalists.
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Russ is right
We used to say, years ago, only a Biopsy can prove it is C. A Pet/CT can let you know there's a probable chance it is, but not definite. And if it is a small spot, one would think the Drs. at the Cleveland Clinic would be able to cut out the C and maybe fill-in any gap area. I had a silicone stint grafted into my windpipe back in 1970...that's a long time ago, HD. I would definitely go to the CC, if I were you.
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Three Times is a Charm
As they say, so I hope it is.
Throat cancer first time treated with chemo and rads.
Tongue cancer the second time-Surgery only with clear margins no chemo or rads.
Lymph node cancer the third time-surgery and 30 well planned follow up rads.
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Biopsy and Surgery Today
Guys you are the best. I really like me ENT here. He said the PET lit up the wrong area, it was close but missed it. There was nothing in the voice box that was all normal. It was the infection, but an area close which had a nasty spot and was at the back so somehow reflected up or something like that, being no doctor I did not quite get it but I do really trust this doc. There is a small cancer spot. He is not 100% sure until the biopsy comes back, but wants to get the ball rolling as it is very contained and small.
He says go to either University of Michigan, which is closer to me or Cleveland, get their best plan of treatment and double check everything. He thinks since the spot is at the very lower edge of where I would have gotten radiation before and at the back, not the front of the esophagus that radiation is very possible and combined with chemo is has a very good chance of a "cure" with a very good 10 year cure. Worst case is an almost cure and do a bit of clean up surgery anyway. Russ your windpipe patch is most encouraging and that is I think sort of what my doc says might be step 2 if step one does not totally get the beast.
I am still struggling a little about Cleveland Clinic. I love that place, but also love my current doc and if the University of Michigan gives my ya he is right on and we can set it all up and you can do it up there (far northern Michigan - we are very lucky as it is a rich tourist area so great medical facilities for rural area) and they monitor doing the treatment close to home might be way to go. Will still get second opinion from Cleveland, they will do remotely.
wbc - I am also very impressed with your fight and winning. It is a fight worth the cost for sure as life is most wonderful most of the time. You both help others and that counts for much. You offer hope.
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HD,HobbsDoggy said:Biopsy and Surgery Today
Guys you are the best. I really like me ENT here. He said the PET lit up the wrong area, it was close but missed it. There was nothing in the voice box that was all normal. It was the infection, but an area close which had a nasty spot and was at the back so somehow reflected up or something like that, being no doctor I did not quite get it but I do really trust this doc. There is a small cancer spot. He is not 100% sure until the biopsy comes back, but wants to get the ball rolling as it is very contained and small.
He says go to either University of Michigan, which is closer to me or Cleveland, get their best plan of treatment and double check everything. He thinks since the spot is at the very lower edge of where I would have gotten radiation before and at the back, not the front of the esophagus that radiation is very possible and combined with chemo is has a very good chance of a "cure" with a very good 10 year cure. Worst case is an almost cure and do a bit of clean up surgery anyway. Russ your windpipe patch is most encouraging and that is I think sort of what my doc says might be step 2 if step one does not totally get the beast.
I am still struggling a little about Cleveland Clinic. I love that place, but also love my current doc and if the University of Michigan gives my ya he is right on and we can set it all up and you can do it up there (far northern Michigan - we are very lucky as it is a rich tourist area so great medical facilities for rural area) and they monitor doing the treatment close to home might be way to go. Will still get second opinion from Cleveland, they will do remotely.
wbc - I am also very impressed with your fight and winning. It is a fight worth the cost for sure as life is most wonderful most of the time. You both help others and that counts for much. You offer hope.
That sounds like relatively positive news. I'm glad it wasn't as serious as you may have thought.
I wish you the best possible outcome!
mg
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Thanks HD
I will try to keep the form updated. Part for me as therapy and part to be of help to anyone who is going though the same or similar. Reading other's stories helps and helped me.
mg - you be safe on that motorcycle - I worry about you on that - I know they are a ton of fun, its the other drivers I worry about, be safe.
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HobbsDoggy That is Fantastic NewsHobbsDoggy said:Biopsy and Surgery Today
Guys you are the best. I really like me ENT here. He said the PET lit up the wrong area, it was close but missed it. There was nothing in the voice box that was all normal. It was the infection, but an area close which had a nasty spot and was at the back so somehow reflected up or something like that, being no doctor I did not quite get it but I do really trust this doc. There is a small cancer spot. He is not 100% sure until the biopsy comes back, but wants to get the ball rolling as it is very contained and small.
He says go to either University of Michigan, which is closer to me or Cleveland, get their best plan of treatment and double check everything. He thinks since the spot is at the very lower edge of where I would have gotten radiation before and at the back, not the front of the esophagus that radiation is very possible and combined with chemo is has a very good chance of a "cure" with a very good 10 year cure. Worst case is an almost cure and do a bit of clean up surgery anyway. Russ your windpipe patch is most encouraging and that is I think sort of what my doc says might be step 2 if step one does not totally get the beast.
I am still struggling a little about Cleveland Clinic. I love that place, but also love my current doc and if the University of Michigan gives my ya he is right on and we can set it all up and you can do it up there (far northern Michigan - we are very lucky as it is a rich tourist area so great medical facilities for rural area) and they monitor doing the treatment close to home might be way to go. Will still get second opinion from Cleveland, they will do remotely.
wbc - I am also very impressed with your fight and winning. It is a fight worth the cost for sure as life is most wonderful most of the time. You both help others and that counts for much. You offer hope.
A much-downgraded situation from which was presented in the first place. And thanks for the compliments although that is not what I am here for but it is appreciated. I am here to help others if possible and get support myself. After all who understands the H & N world except other H & N folks. I certainly hope things fall right in place for you and you have the best docs and outcome with this current situation-Take Care-God Bless
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A Bit of a Change and a Question.
I am going with the wise advice on here and getting an opinion from both the University of Michigan, the preliminary opinion and a second one from Cleveland Clinic. Cleveland has the depth and expertise for a case where there seems a situation like this where the doctor is not sure. I appreciate that my doctor seems unsure and is not tying to bluff his way through, but of course that make me very nervous.
He said if radiation and chemo cannot happen or if only limited then they would remove the "spot" and replace with a skin flap from my arm. That has a good chance of getting rid of the cancer, not quite as good as full radiation. Anyone have experience with that? Dave K, that is similar to what you had done and it worked for you, correct? You are a long way out on that?
I know I am being a very nervous one, but it is the uncertainty. You all put me on the right track to push to get the second onion from Cleveland and I am looking for your thoughts about the surgery option as a just in case back up. I am still thinking I will get at least some radiation and chemo and I think I am right that the radiation and chemo is still the best way to beat the beast for neck.
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HD
No, that is not what happened to me. The silicone stint I mentioned was to help support a crushed windpipe @ the larynx from an auto accident when I was 13, and involved 23 Ops. over 26 months. I do know a co-worker who has had spots of C removed from his tongue twice at the U of Iowa hospital, and is doing okay. Still working, and said he feels great.
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Hang in there!
It must be discouraging to feel like you’re facing this challenge again, but sounds like you have a plan to evaluate different options. It’s hard being faced with different options...... I think it’s human nature to guess and second guess ourselves, so getting that other opinion will hopefully help. I wish you the best, and will be following to see what is decided. Thank you for all the advice you’ve given me for my husband! Sure helps to hear from those who have walked the path!
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Will Keep Everyone UP to Date
Will let everyone know how the journey goes. I remain quite hopeful. My doc did catch it early, it has not spread, it is still small and there appear several opitions. To say I am not scared, really scared would be lying, but also feel good that my prospects are really good. Cancer shows no mercy and can drag us down to the depths very easily. One thing is that people on here and local support groups do is show that the vast majority of people are decent and careing and will help all they can.
Just sharing what we go though really helps, both us and others.
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So true...HobbsDoggy said:Will Keep Everyone UP to Date
Will let everyone know how the journey goes. I remain quite hopeful. My doc did catch it early, it has not spread, it is still small and there appear several opitions. To say I am not scared, really scared would be lying, but also feel good that my prospects are really good. Cancer shows no mercy and can drag us down to the depths very easily. One thing is that people on here and local support groups do is show that the vast majority of people are decent and careing and will help all they can.
Just sharing what we go though really helps, both us and others.
So true about being drug down to the depths! Mind racing is a horrible thing. I have felt so positive from information from the doctors and all here on the forum. But last night I spent three hours researching rate of recurrence, and other such things . Bad idea! As much as I tell myself to stay off Google, I run down that rabbit trail sometimes. Only human to be scared.
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Recrence, yes it happens, but often not really and often many years out. One thing about neck cancer is that it can be beaten. Even if it happens to pop up later they (we) can beat it again. I very much remember what a wonder doctor at the Cleveland Clinic told me 8 years ago when I ask about my "odds". He said I have no idea what your odds are. I cannot tell what any one persons odds are. I am here to fix this and I am here to make you well not to beat any odds. We are going to make medicine work.
Yes we will have tons of fear and it will get worse, but as long as we have a plan and are in the battle it will give us strength and that is our hope and we will win.
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