Refusing Radiation

Ecarr

My husband just found out he has cancer a week ago. They are searching for the primary. In the meantime, he has a friend with head and neck cancer who told him the horrors of radiation and that he should just have surgery. While our cancer team has yet to give us his cancer plan my husband is already totally against radiatio. I am so scared. While I don't  want him to suffer, I also want him to live. Has everyone here gone through radiation, anyone refuse?  If so, how are you doing?

SuzJ

I think

from what I have read of everyone else, that Radiation is the #1 treatment with chemo #2?

I'm doing radiation and chemo, with surgery at the other side. Does it hurt? yes, but so does cancer. I'm sorry, doesn't sound like much of a friend that would scare him like that. Do what the team says to do. They know it best.

CivilMatt

welcome

Ecarr,

Welcome to the H&N forum, sorry that you are here.

It is almost with certainly without radiation most of us would not be here and what an unpleasant way to go it would be.  It is also true we would not have messed up taste buds and dry mouth, but I will take my current position over a no rad guarantee of a much shorter life.

I would have his team lay out the cards and select his best choice.  After all, a combination of rads, chemo & surgery (any one or all three) have a better track record over nothing.

Good luck,

Matt

corleone

Surgery alone - risky

Surgery alone would work ONLY if the tumor would be in one location, without any invasion (all the lymph nodes clear of tumor cells). So that would be stage I and perhaps stage II (when it would also need chemo). If it’s higher stages and the intention is to cure, then unfortunately radiation plus chemo is a must. I agree, the side effects from radiation are by far, the worst.

 

I also have to say that his friend – while having best of intentions – has not been the best adviser. And think about this: his friend most likely had radiation (as he attests for the bad side effects), and he can do that (give the advice), because he is still “here” to tell the story.

Ecarr

corleone said:

Surgery alone - risky

Surgery alone would work ONLY if the tumor would be in one location, without any invasion (all the lymph nodes clear of tumor cells). So that would be stage I and perhaps stage II (when it would also need chemo). If it’s higher stages and the intention is to cure, then unfortunately radiation plus chemo is a must. I agree, the side effects from radiation are by far, the worst.

 

I also have to say that his friend – while having best of intentions – has not been the best adviser. And think about this: his friend most likely had radiation (as he attests for the bad side effects), and he can do that (give the advice), because he is still “here” to tell the story.

Thank you for the responses.

Thank you for the responses. His friend refused radiation as well and said that since there is only a 5 percent chance of recurrence he is willing to take the chance. I'm so angry at this man. He just had his surgery so he can't say  "hey, look at me I've been cancer free for years." I'm pretty sure my husband is stage 4 since he found a lump on his neck that was biopsied. I'm trying to get him to read the forums so he will here what others have to say rather than just his friends.

swopoe

My husband was stage 1 and

My husband was stage 1 and had the option of just surgery. But he threw the book at the cancer and did the surgery, rads, and chemo. He is a dad to three and my husband and he wanted to be there for all of us for a long time. His surgeon is the same age and also a dad of 3 and would have done the same thing. 18 months later and we are glad we made th choices we did. You only get one chance to hit it hard the first time. That is my advice.

Chicklette

Ecarr said:

Thank you for the responses.

Thank you for the responses. His friend refused radiation as well and said that since there is only a 5 percent chance of recurrence he is willing to take the chance. I'm so angry at this man. He just had his surgery so he can't say  "hey, look at me I've been cancer free for years." I'm pretty sure my husband is stage 4 since he found a lump on his neck that was biopsied. I'm trying to get him to read the forums so he will here what others have to say rather than just his friends.

I dont blame you

I would be angry, too.  His friend is not giving the best advice.  And if he found a lump in his neck, he is at LEAST stage 3 but probably stage 4.  Chemo and rads suck and none of us want to go through it, but like many other have said ... they are here to complain about the side effects.

Tonita

swopoe said:

My husband was stage 1 and

My husband was stage 1 and had the option of just surgery. But he threw the book at the cancer and did the surgery, rads, and chemo. He is a dad to three and my husband and he wanted to be there for all of us for a long time. His surgeon is the same age and also a dad of 3 and would have done the same thing. 18 months later and we are glad we made th choices we did. You only get one chance to hit it hard the first time. That is my advice.

From what I understand, a

From what I understand, a slow, agonizing, lingering death from progressing cancer is a lot worse.

AnotherSurvivor

I was Stage III (but N-1

I was Stage III (but N-1 'maybe') with outside potential for surgery.  If there is no guarantee of clear margins from the surgery, the oncols will propose ~35 rad with certainly some chemo.  I made the call, and did rad/chemo.  It definitely sucked, it had major side-effects, but yesterday I was pronounced NED and they KNOW they totalled the primary, because my target area was pristine.  Your husband may have that choice, maybe not.  Ultimately the correct decision is 'to do what is medically optimal'.   All the other stuff, dry mouth, diminished taste, mucusites, pneumonia, pulmonary embolism, can be fixed post treatment.  

Besides being rid of cancer, my weight is now a very healthy 180 lbs (I was 6' 220 lbs).  I now hop, run, skip, and jump like I did in my 30s (I'm 65).  I will never be above 190 again.  Next year, skiing will be AWESOME.  That is also one of the side-effects.  Knowing I have a very good shot at being alive to do it is the main one tho.

MMDowns

You have every right to be

You have every right to be upset with this "friend."  Friends don't scare others unnecessarily.  When my husband was diagnosed in January one of his frist questions was can we just remove the lymph node and be done.  The dr's told us absolutely not.  seems to only be effective when it's in early stages but if your husband is stage III or IV then chemo and radiation is what we were told is the best option.  None of this is fun.  None of it.  Chemo is not fun and neither is the radiation but there are meds and hopefully wonderful dr's and nurses that will be with you every step of the way (especially the nurses).  My husband is in his 6th week of treatment.  We have one week and 3 days to go.  Yes he has side effects and right now is living off of Ensure BUT he's here and kickin' this cancer's butt.  Your husband can do this.  I am not sure what the dr.'s would even say if he refused radiation.  You both have to decide what you want the outcome to be.  Good luck to you

MarineE5

Echo their words

Ecarr, 

I agree with the others, your husband's friend may have given him some misleading information, depending on his staging and if they find the primary tumor. Radiation is pretty much the standard treatment as mentioned. I did not receive Chemo, Surgeon and Radiation Oncologist wanted to use that as a back-up plan in the event of recurrence which I can say did not happen.

I had Base of Tongue cancer, Surgery to remove part of my tongue, Radical Neck Disection, 30 Radiation treatments on the IMRT machine. Yes, I have side effects, no saliva, taste buds as mentioned that are out of whack. But, my cancer was in 2004. I wanted to see our 3 month old 1st grandson grow up, so I said hit me with everything you got.

Remember that when I had my Radiation, Proton Radiation was the newer thing and not all hospitals had that machine available. There is a difference in the delivery of the beams, so often times saliva glands are spared. The amount of Rad's/ Gy's depends on the side effects down the road. 

One thing that almost all of us that receive Radiation need to be aware of is our Thyroid levels. Fatigue will be a warning sign if our Thyroid is failing, many of us are on Generic Medication to balance it out and it works as I have been on it for about 7 yrs now. 

Ask questions when with your Doctors, ask questions here as we have plenty of Knowledgeable people to help you get thru this.

My Best to You, Your Husband and Everyone Here

Kapital

surgery only

     

     A work acquaintance’s husband was diagnosed with BOT cancer one month before my husband was diagnosed with tonsil cancer. He did not want the chemo and radiation recommended by his doctors and opted for robotic surgery only. My husband followed the standard treatment of radiation with concurrent chemo.

     Unfortunately my acquaintance’s husband had a recurrence, at three months post op, with positive lymph nodes found on the other side of his neck. He then wound up having radiation, yet still refused chemo. My husband is two years out and doing well, NED. Of course there are never any guarantees, but so far so good.

     Obviously, everyone makes his own decision, but an oncology surgeon once told me that you should hit SCC hard the first time, rather than chase it later. I think it was probably pretty sound advice, which we took to heart and followed.

 

     Radiation and chemo isn’t easy, but certainly doable, as the good folks on this site can attest to. I would encourage your husband to follow the line of treatment his oncology team offers with the best possible prognosis.  Best of luck.

Ecarr

Kapital said:

surgery only

     

     A work acquaintance’s husband was diagnosed with BOT cancer one month before my husband was diagnosed with tonsil cancer. He did not want the chemo and radiation recommended by his doctors and opted for robotic surgery only. My husband followed the standard treatment of radiation with concurrent chemo.

     Unfortunately my acquaintance’s husband had a recurrence, at three months post op, with positive lymph nodes found on the other side of his neck. He then wound up having radiation, yet still refused chemo. My husband is two years out and doing well, NED. Of course there are never any guarantees, but so far so good.

     Obviously, everyone makes his own decision, but an oncology surgeon once told me that you should hit SCC hard the first time, rather than chase it later. I think it was probably pretty sound advice, which we took to heart and followed.

 

     Radiation and chemo isn’t easy, but certainly doable, as the good folks on this site can attest to. I would encourage your husband to follow the line of treatment his oncology team offers with the best possible prognosis.  Best of luck.

Thank you to all who replied.

Thank you to all who replied. We will be meeting tomorrow with docs at Banderbilt. I think I need to let my husband know he can choose radiation, suffer greatly, and survive. Or he can opt out and then suffer greatly and die. Wish me luck. He had PET yesterday and we are meeting with our oncologist today. 

Laralyn

Does he need surgery for sure

Does he need surgery for sure either way? I had chemo+radiation and no surgery, and it eradicated the cancer from my head and neck. I have never had it recur there. (I did have lung cancer down the road but surgery on my head and neck cancer would not have affected that). If there is a chemo+radiation option available, ask about effectiveness vs surgery because in my case, the success rate was identical.

Surgery can be disfiguring in pretty brutal ways for head and neck cancer. With surgery, I would have had a huge hole in the roof of my mouth and required a prosthetic to swallow. I would have lost a chunk of my throat, too. I might have to use a feeding tube the rest of my life. I would have had severe speech problems too (you rely on your soft palate to form many words). And that's before you get into the side effect risks of infection, accidently severing nerves, etc. Ask about the consequences of surgery and compare them to the side effects of radiation--which are temporary and which are permanent?

Ask your husband to approach this logically. I know how hard that is but it's important. Get a second opinion, too. Ask for statistics for all of the options you have. If surgery is the best choice regardless of whether he does chemo+radiation, then ask for comparative recurrance rates. 

I'll be blunt: until you get to end of life decisions (and you are nowhere near that point), your husband needs to approach these decisions objectively and not based on fear or individual experiences of friends. If he can't do that--and again, I understand if that's the case because it's really hard to do--then he needs to listen to someone else who can be objective for him. 

phrannie51

I hope he changed his mind!!!

It would be nice if surgery did the trick, unfortunately SCC is a sneaky cancer, especially if he has a node popped out on his neck.  SCC can hang out in the muscle or another node....for quite some time, then rear it's ugly little head again and he'd be facing another go-round. 

This is the time to hit it hard....if radiation scares him more than dying....then he still as a bit of "nothing can hurt me" attitude that affects teenagers .  It's temporary, as SO MANY people here can attest to.

p

wmc

Without a known primary?

I never had radiation or chemo. However, My primary was very obvious and I also had bad lungs. Mine was 3cm and pressing on my vocal cords.  So I had only one choice, to remove my larynx and put a hole in my neck to breath through or do nothing, and not live very long. 
Radiation and chemo work better together, or radiation works better with chemo. Chemo alone will not kill or cure cancer, just give you more time.  He should fight like hell and also do the radiation and chemo. There is still no guarantee it will save him down the road. Now I am sorry for being kinda blunt, but this is his life and sugar coating it is something I just won't do, as it is like lying. 

It is very rough to do radiation and the road he will go down will be rough. So many here have been down the road, and beat it as well. You just take one day at a time, and today is the only one that matters.  Head and Neck is the second worst treatment for cancer there is. You must fight and fight as hard as you can. Everyone here will be there for you and him also.  Now for a friend to say just have surgery, and they don't know where the primary is, is not very smart. Where do they do this surgery, and what do they remove? I prefer surgery but only in certain conditions.  Like mine was. They had no choice as I would not survive radiation. Now if my lungs were good, I would have had radiation and most likely chemo and still had my vocal cords. I didn't have the choice. I was told I would not survive surgery either, unless they removed my larynx and I breathe through my neck the rest of my life. They say my odds are 53.3% to survive 5 years. Don't look at the odds either because they are all wrong. Before surgery, it was over 63% but the ACS redid it with new information. It was mine exactly. T3, contained and no spreading and even 3cm in size and on the top of the vocal cords. That was mine to the letter. Except the odds are all wrong. It is over 80% survival rate not 53% for 5 years. I have no cancer. It can't spread as it was contained and all removed and then some.  You go to a major hospital that has a tumor board and go with what they advise. If surgery is offered and a choice they will tell you and then you can have a choice if that is what they find. I saw the photos of mine and it was too risky to even do a biopsy as the doctor could not stop the bleeding so he did just a brushing of it.  I made the right choice, I chose life, and I hope he does as well.

Here is a video my doctors asked me to do so they can show other Laryngectomees
https://www.youtube.com/watch?v=sL-ZuyhSMEM&t=24s

Bill  Oct 2nd, 2013

Elenacuomo

Radiation Side Affects

Hello

Sorry to hear of your husbands diagnosis. Its killing me to respond to you bcuz I dont want to be the "Debbie Downer" in the group. Ive read all the comments. I do "understand" why your husabnds friend advised him like he did. I chose The Rads &Chemo route. And Even tho I am 5+ years C FREE and so very grateful to be alive. RADS has torn me apart. I had BOT C in 2009. Its now 2017 and bcuz of rads:

I cannot eat/swallow...I havent eaten food since Nov 2009* I live and eat on a Feeding Tube* I have a TRAKE* bcuz RADS shrunk up mu windpipe, breathing was difficult so I had no choice* aMong so much more the clincher is my latest* I havdent been able to speak in 2 years BCuuz RADS caused so much scarring around my VB...OK so what was the FIX a total LAryngectomy...OK so as soon as I decided to do it* MY  JAW bone lights up in my PET and RADS now is deteriorating my JAW BONE. My one side are falling out (teeth) My pearly whites and My vanity have always been my TRADEMARK so to speak. SO there you go my friend I am a 50 yr old Cancer survivor. AM I grateful to be alive ?? Oh yes BUT so many times I ask myself Was it worth it? MAybe if I had done the surgery first AND only docs COULD  have gotten the cancer OUT and I'd be OK.....OH did I mention the PAIN. Its brutal, I live on PAin Killers. AGAIN, forgive me I do not want to scare you or be so HARSH but I really need PEOPLE to RESEARCH and know what can happen. I was 42 y/o Healthy as can be and BAMMMMM So just like you we heard cancer and panicked. Who ever knew of RADS,....My dr advice was due to my young age I should be fine, I fell into every ODDs you can imagine SO PLEEZ PLEEZ do your Homework tell DOCS to be honest. My Dr was great I think he tried to protect me ALOT and he never ever told me about the dangers of RADS

 

SO your hubbys friend is not crazy!! 

GOOD LUCK

I will keep u in myprayers