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To Radiate Or Not To Radiate That Is The Question

tjuhlin
Posts: 19
Joined: Feb 2011

I posted here about a month ago and a great many of you responded to my questions and offered some very good insight and now I'm back.

I had a "radical" neck dissection on March 9th and now I am in recovery. According to the ENT surgeon, he got 99% of the cancer in my neck and the doc's did locate and remove the source of the squamous cell neck tumor which they found on the top of my head.

My question to you all is if I should receive radiation or not?

The doctors at the Phoenix Mayo Clinic want me to undergo radiation and right now have developed a plan for me to go five days a week for about six weeks for treatment.

I have a sister in law who is a Anesthesiologist and she recommends that I don't get radiation because of the irreparable damage radiation does to your teeth, tongue and the jaw bone. She went on to explain that the "Quality of Life" is worth more than have to use a feeding tube, loosing teeth, swollen tongue and facial disfigurement.

She further explained to me that my doctors are dedicated to rid me of the cancer inside me but do not take in consideration the loss of "quality of life" in doing so.

Right now, I believe it is not imperative that I have radiation treatments and I am unsure of the why the rush for me to do so (I just started questioning myself after the conversation with my sister in law).

The ENT surgeon and his staff do want to see me once every three months for follow up exams.

My question to all of you that have had neck radiation what were your positive and negative side effects?

I welcome your thoughts on this regardless of viewpoints.

Thanks

Terry

Cherokeegirl's picture
Cherokeegirl
Posts: 11
Joined: Aug 2010

Sounds like your Sister in law don't like you very much. I would do what your Doc says. I think he would know more.
On the serious side.......Doctors DO care about the quality of life........what right does she have to say such a thing? My Husbands Doctors are still seeing him even though the cancer is gone. My husbands Doctors told him about sesame seed oil to help with the taste buds and you know what it was only a matter of a few days and he was tasting things again. No not 100% of the taste buds returned but he does enjoy most of what he eats.
This is YOUR life not her's,not mine,not the Doctors YOURS. Remember they are doing it to HELP you not HURT you.

MarineE5
Posts: 754
Joined: Dec 2005

Terry,

I am glad to see that you are here to ask questions. You had the neck disection first which is in my opinion a good thing as our skin and tissue heal at a faster rate then if we have the radiation first.

You mentioned that the Doctors got 99% of the cancer. My question to you is this, do you really want to take the gamble that the cancer won't return by not receiving the radiation? I had a radical neck disection and then the same 30 treatments that you spoke of. True, I have no saliva, but I was treated 6 years ago and since then, they have improved the medicines to help save the saliva glands along with better aim points during the radiation.

Yes, you will have sores in your mouth, on your tongue and in your throat. You can do this to make sure that you have put forth your best effort to beat this beast. Even though many of us have traveled this road and we took all the treatments available, we on occassion look over our shoulders wondering if it will return. If you decide to not take the advice of your Doctors, will you then wonder if that stray cancer cell is going to start all this over again?

I was taught that you make sure somethings don't come back to haunt you later. Cancer is our enemy.....give it the final KO punch.

My Best to You and Everyone Here

Cherokeegirl's picture
Cherokeegirl
Posts: 11
Joined: Aug 2010

About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.

Cherokeegirl's picture
Cherokeegirl
Posts: 11
Joined: Aug 2010

About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.

Cherokeegirl's picture
Cherokeegirl
Posts: 11
Joined: Aug 2010

About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.

Cherokeegirl's picture
Cherokeegirl
Posts: 11
Joined: Aug 2010

About the sesame seed oil you don't need to use alot at one time just a teaspoon once a day swish around the mouth and if you swallow it won't hurt anything. My Hubby used it for only a week or two.

mswijiknyc's picture
mswijiknyc
Posts: 421
Joined: Oct 2010

I'm going to get right to the point, if being blunt hurts, then I'm sorry.

My husband had a radical neck dissection with a complete laryngectomy October 2010. The doc then said almost the same thing - he got 99% of the cancer, but radiation (5 days a week for 6 weeks) at least with chemo to be sure. He was going for cure, too. And quality of life was a big issue for my husband's doc too.

My husband deferred until after New Year's. By then it was too late, the cancer had come back and then some. My beautiful man passed on February 17, 2011.

So if you would like to listen to your SIL, that is your option. I feel that short term pain (rads, PEG,) is far outweighed by the long term gain (LIFE). And the disfigurement she's talking about? And quality of life issues? Small changes in the long run, and I have yet to see a laryngectomy who would trade their stoma for a coffin, or their scars for the funeral home. Because those are the choices.

Best wishes.

tjuhlin
Posts: 19
Joined: Feb 2011

I am so very sorry for your loss. Thank you for sharing your story with me. I too wish you the best...

Terry

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D Lewis
Posts: 1533
Joined: Jan 2010

Terry,

To put it simply, surgery cannot get all the cancer cells. If you had a primary tumor, and metastatic tumors in your lymph nodes, then the cancer IS moving through your body, and it is still in there.

I had stage 4 SCC, base of tongue, with metastases to lymph nodes on both sides of my neck. I got cut twice, burned, and poisoned. I had eight weeks of radiation, the maximum dosage, concurrently with three rounds of Cisplatin chemo (AKA "the raging bull"). I had a feeding tube DURING treatment. It's gone now. I was done with that, some six weeks or so after end of treatment.

Hey, I still got my tongue, still got my teeth, jawbone is working fine so far. I can talk. I can taste. I can eat most things, in moderation, ten months out from end of treatment.

I am so fortunate to still be alive. I will say, the quality of my life right now is EXCELLENT, because I am here, among my dear family and friends, working, playing, loving, and living my life. Please don't take the risk of refusing radiation. Not worth it.

Deb

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I also had surgery first. Susposedly a relatively simple 40 minute procedure to remove a suspicious lymph became 2+ hours due to extra-capsular extentions.

Primary was not found after biopsies that were performed after I had healed up from surgery #1.

The node was hpv+ SCC. Radiation was "mandatory" if I can put it that way. My Doctor at MD Anderson explained that rads were standard protocol...for me, at my age etc...a 90% "cure" rate. I was given the option of adding chemo to enhance the radiation to "throw the kitchen sink" at the cancer. My odds, if you will, would then be 90+%...maybe up to 95%.

I'm young. I have four children and a great wife. Cancer was not in my plans. I opted for the chemo with the radiation. Radiation five days a week for seven weeks, chemo once a week for seven weeks. I lost 35 pounds and drank Ensure for a couple of months.
It sucked, but I feel I'm very fortunate.

I'm almost one year post treatment. I'm working full time. Working out again. Tons of energy. I have very limited saliva, but am able to eat and taste most foods and enjoy them. Not like before, but that's o.k. My ears ring...but they rang before. My jaw gets tight and I stretch and try to loosen it up every day. Some of my hair and beard are gone forever-no biggie. My lousy singing voice is even worse. All the new normal.

Bottom line: No chances for me. I went the aggressive route. I just didn't want any doubts. It's early...but so far so good.

All the best to you, and everyone here.
Chuck.

wifeforlife
Posts: 189
Joined: Feb 2010

It is your life. You can chose whatever you want and I will honor and respect your choice. However, I would like your SIL to have nerve enough to tell my husband he (we) dont' have a quality of life!. Surgery, rads, chemo, Hyperbaric, teeth extraction, infections, ...swear to God after the last radiation treatment I actually asked the nurse ... is it possible he can live through this.... he was soooo sick.
i yr post treatment. Working full time, hunting, fishing, WALKING IS DAUGHTER DOWN THE AISLE THIS YEAR!.. We have quality of life!~... Thank you God, Doctors, husband, support systems!... maybe your SIL should come stay with us for a week.
Wife

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Terry,

The rationale from your docs is most likely that the surgery most likely did not get all the cancer or that they can't be sure and that radiation will clean up whatever they might have missed. It is fairly standard to be suggesting this at this point and even chemo to accompany the radiation. They should have told you this was their intention from the start as most likely it has always been so. The docs do have a tendency to only tell you as much as you need to know so as not to scare you off. I originally was told that there was a chance that chemo would get everything and that no further treatment would be required. As soon as I finished chemo I was then told that chemo is never enough and that I would now need to do radiation. I then chose to do 7 weeks of radiation as well as more chemo as this gave me the best chance of being cured. For certain my "quality of life" has been impacted as radiation treatment was painful in many ways and I do have some lingering side effects. I do like to look at it like I now have a "quantity of life" that I can improve the quality of.
It would be great if all of the cancer has been removed from your head. It is hard to know for certain though and radiation can certainly increase the odds. Of course there are side effects that are quite unpleasant. It is a tough choice. As always I would recommend 2nd and 3rd opinions from major cancer treatment centers before doing anything. Probably not a big rush to begin radiation immediately as your docs would have you believe but a decision should be made soon.
I would be interested in knowing what you choose and how you are doing. I wish you the best whatever your choice.

Bob

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Hmmmmm.

I have to say - going through induction chemo followed by chemo rads followed by a modified radical neck dissection really degraded my quality of life - FOR A LIMITED PERIOD OF TIME. Am I back to "normal"? No. Do I suffer daily? Also, no. As far as disfigurement goes, I have two scars folks can readily see (if I'm exposing those body parts) - second belly button and larger, neck scar. I cannot eat a limited number of foods; but am able to taste, chew and swallow enough food that I now need to watch my weight. I truly feel that the bigger post treatment issues I have now can be attributed to the dissection (OK, except for the inability to eat chewy meat). I do understand some folks are living with much "bigger" aftereffects of chemo and radiation than I'm experiencing; I also understand that some have it easier. But, in general, I feel that the vast majority of us would not say that treatment has had a totally devastating effect on our bodies long term. Yes, some "irregularities" exist, but for me (and almost all here, I think), the "issues" we deal with do not make our life a tortured existence.

I wish you the best - I remember how stressful it was for me to make a decision on how my treatment would go. Do well.

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Jimbo55
Posts: 572
Joined: Jun 2010

Get a 2nd/3rd opinion if you are unsure of the need for undergoing the radiation treatment.

To say all doctors do not care about quality of life issues is certainly untrue. My doctors raised that very issue with me when discussing treatment options.

Kindly clarify: Did your ENT surgeon say he got 99% of the cancer or was it he was 99% sure he got all the cancer? Either way it is not 100%.

I beg to differ with your sis in law, but most of the side effects from radiation are not 'irreparable'. Yes there is the potential for longer term problems with your teeth/jaw bone. But the feeding tube - temporary, swollen tongue - temporary, mouth sores - temporary. Not sure where she got the facial dis-figuration from.

The negative side effects I experienced were mouth sores, tasteless food, difficulty swallowing, loss of energy, weight loss. I didn't need the feeding tube. The side effects are not the same for everyone, some are worse off, others have an easier time of it.

There are not many positive side effects from the radiation, except maybe you won't have cancer any longer. For some, the weight loss can be a positive. I can pretty much eat anything right now and not worry about putting on a few lbs too many.

I am 7 months out from rads/chemo. I feel fine, have been back working at a job I love for the past 6 months and can eat most things except spicy food.

If it was me, I would go ahead with the radiation treatment. Cancer is unforgivable, don't give it a 2nd chance.

If you do decide to go ahead with the radiation, why wait???

Terry, keep us posted on your decision and how you're progressing. Best of luck to you whatever path you choose. Cheers

Jimbo

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

It's a tough decision. The tooth problems are a huge PITA. But this is the real question. Ask your doctor this question? Then make your decision. I want to say, that knowing the answer to that question, I would still get the radiation but you at least have to throw it in the mix.

You state the cancer has a 1% chance of comming back? What is the chance of radiation exposure giving you a second cancer a few years down the road, higher than 1 percent? Just turn on the TV to the Japan scenario.

Again I personally think that 'peace of mind' that I've done everything possible is priceless and would get the radiation, but radiation has severe lifelong effects and your SIL is right in asking the question and your right too investigate. Let us know what you decide.

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

Terry,

I post on here occasionally but I do come here often to read other posts. I’m a caregiver/life partner for Mike. As many others, he presented with a swollen lymph node that did not go away after a treatment with antibiotics and a year ago (3/19) he underwent a radical neck dissection. Sure-they took out the primary tumor and 44 lymph nodes (2 were positive) but that was not enough for us.

Yes, the side effects are horrible and some can be permanent but in the big picture, we/he decided he wanted every “life jacket” thrown at him to survive/beat this Stage IVa Tonsil Cancer. The ENT/Med Onc/Rad Onc all said-the best chance you have to beat this is to have radiation/chemo to do the “mop up” and get any remaining cells.

No surgeon or doctor can put a % on how much they feel “they got”. We are dealing with mean little microscopic cells that like to migrate and hide places. The radiation will treat the local area of those nasty cells and the chemo treats systemically to kill any cells floating around.

Mike’s treatments finished 6/17 and he’s had two clean PET scans since. The PEG is gone, he’s back at work full time, has dry mouth and for the most part eats a normal diet. He does struggle w/some foods. It was a horrible experience but he’s here to tell about it and has a great Qualify of Life. Our ENT docs told us, write a year off your life and then you can move on and that just what we’re doing.

I think what you have to figure out is what “Quality of Life” means to you. Those irreparable damages that your sister in law mentioned don’t happen to everyone and this is your life. Most of the disfigurement (if you want to call it that) comes from the surgery, not the radiation- although Mike does have some discoloration (like a tan) on both sides of his neck-does he care? NO because he’s still here. Did he hate the PEG tube? Absolutely but he knew it was temporary. Again…he’s here.

The hard part for me as a caregiver is that I’m an oncology nurse and know the treatment for Head/Neck cancer is by far the hardest but you can get through it. All of these amazing members in this group are a testament to strength and perseverance to live. Allow their stories and experiences to give you the strength (along with God) to get through some rough months but in the end, you will be able to say to yourself, I GAVE IT EVERYTHING I COULD.

God Bless.

Chris

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

I too would agree on getting a second opinion, and if the doc says you should do the rad and chemo, then go for it my brother. This stuff you have can take you life very fast it is not something to fool around with.

Also remember there is very good life after cancer treatment, many of us are proof of that.

All the best to you my friend
Hondo

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Goalie
Posts: 184
Joined: Sep 2010

OK, I don't post that often but this is important. My opinion (I'm not a doctor nor do I play one on tv) is to do the treatment.

I was a primary in the tonsil (HPV+) and mets to one nearby lymph node. We did a tonsillectomy because it is very non-invasive and can be snipped out. My surgeon didn't want to do the neck dissection then because he could not be sure he would get it all. So we did the treament to kill everything that we knew was there and anything possibly floating free.

I am a couple of months out now from the end of my nine weeks of rads and chemos. The side effects from these immediately and now are nothing compared to dying. My neck looks fine. My saliva is down some and my taste buds not quite there. So, what?

After I was mostly healed from the treatments we did a neck dissection but it was fairly minimal. The PET and CT scans said everything was dead so he was confident that he wouldn't be disturbing anything. Of the 26 lymph nodes taken out 25 never had cancer and the one that had was dead dead dead. Now my jaw is sore and I have mouth sores that make eating a chore. But this is comparatively nothing. The inconvenience of this last operation is far outweighed by knowing that it is over. Scans and biopsies say it is over.

I have gained back about 20 of the 35+ pounds lost and last weekend I played in a hockey tournament. I am back to playing three days a week or more. This would not have been possible and my life would not be what is it today if I hadn't done the whole treatment. Again, my aidvice, if you want to be reading this board next year and the year after, is to do the treatment.

Doug

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Just my opinon, but having to be dependent on a feeding tube for 3-6 months is a lot better than possibly having a reocurrance. There are no guarantees even with the radiation, but it does increase your odds significantly. I was radiaited on both sides of my neck with the last treatment on 10-21-10 and I have had no problems with my jaw bone or teeth. That is not to say I wont at some time in the future.

I opted for the surgery, chemo and radiation and have no regrets.

Mike

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Its all about risk vs reward. You need to ask yourself to you want to take the risk and deal with the reward. Your choice and I will support either of your choices.

As far as quality of life. I did, radiation, chemo, disection. That was 15 years ago next week that I finished radiation and chemo. year one of recovery was the worst, year two recovery much easier than the first year. Starting approx. the 3rd year new normal starts and the grateful/thankful feelings begin day by day. I love my time just the way I am after going thru God's Workshop for adjustments.

Terry, prayers for Wisdom go out for you.

John

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I am the wife of buzz99 and I say "Do it." Nine years ago Buzz had a right radical neck dissection for right tonsil cancer. He then had radiation and it turned out to be a breeze (I can't guarantee that in your case). He developed a new base of tongue cancer and was diagnosed last summer. He underwent chemo and radiation with treatment ending January 10. Let me tell you, he is doing great! He is eating most foods, not using the peg, has some taste, and is returning to normal activity. Why take a chance with cancer?

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

Terry, I've worked in Nursing education for 26 years and have worked directly with MDs for as long as that and I can't say I've ever heard a doctor give a family member advise like that.

I can't vote strongly enough for Radiation treatment. Your doctors are going for the CURE, not just a few more months of life and they have a chance by using all the proven treatments available to them.

Make sure you are affiliated with a University cancer center or other BIG cancer center that may even have a head and neck cancer department. Take chemo if they offer it along with radiation.

We want to see you posting your 5year check up news.

Best of luck.
Lisa

theresam
Posts: 3
Joined: Mar 2011

Hi,

My husband and I had to make the same decision December last year. He had a neck dissection in October to remove what they thought would just be a cyst. It turned out to be cancer. The lymph nodes were clean. He had a PET scan 3 weeks later and it came back clean. Even though my husband was officially 'cancer-free', the doctors still wanted him to undergo 6 weeks of radiation. We went back and forth for a few weeks, researching, talking to other cancer survivors, etc.

99.9% of the people we talked to voted to go for the radiation. The only people who were against it were his father and step-mom. They thought if he just prayed a lot and ate super healthy, he would be just fine. And if he wasn't, then it was God's plan. Their only worry was that he was going to hell when he died since he's never been baptized. And it was going to be so sad that they wouldn't see him in heaven (all this straight from his stepmom's mouth). The point is, relatives can really be dumb. You think they'll be the most supportive, but so often they are the least. Maybe it's because they are close enough to be affected emotionally, I don't know. I still can't figure my in-laws out.

In the end, my husband decided on radiation. He's now 7 weeks post-radiation and we've discussed that decision often. We both agree that we wouldn't change a thing and it was the best decision he could have made. Yes, he's miserable right now. He is exhausted, dizzy, can't eat much, etc. Our quality of life isn't what we thought it would be right now. But, we'll make a new quality of life. I have my hubby and that's all that matters.

On the first day of radiation, the oncologist told my husband that he just had a patient that was 5 years post neck dissection and decided against radiation. At his 5 year check-up, the cancer had returned. I say, why take the risk?

Theresa

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

You are right on the in-law part of being brainless and giving bad advice, also sounds like they need a real Bible study on Heaven and Hell, so sorry you both had to go through that with all the problems you already had on you plate.

Right now I just want to welcome you both here to the Family on CSN; you will find a lot of help and answers to many questions.

All the best to you both my friends
Hondo

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Terry,

I had Stage 4 SCC of tonsil with mets to both sides of neck. I had tonsillectomy and rad neck dissection followed by concurrent chemo and rads. Just to let you know I've been on this site for about a year. I am 11 months post tx and after being on here for that amount of time and listening to how it has affected everyone else, I put myself right in the middle on negative effects.

Here are the negative: terrible mucuosis during and immediately after rads, sores on tongue for about 2 months during treatment resulted in major weight loss and getting a feeding tube for 7 months, missed about 8 weeks of work (3 after surgery, 5 at the end of treatments), bad burn on neck which lasted about 2 weeks, extreme fatigue for first 3 months after rads, L'Hermites syndrom (tingling feeling when you look down) which just ended for me, hearing loss and ringing in ears(caused by chemo not rads), some pain in the neck area on occasion, no teeth issues (as of now, but being proactive since this could become an issue) and the only bad effect left is dry mouth which makes it difficult for me to eat meat and bread.

Here is the positve: I'm alive and NED (No Evidence of Disease).

Just to let you know my ENT told me about the same thing that your's did, that the surgery got about 95% of the cancer. He said there were probably still cells in me after surgery and that is why I needed to do rads and chemo. He did say that even though the surgery got 95% of the cancer, the treatment for getting rid of this Crap for me was: 50%-surgery, 40%-rads and chemo was about 10%. So at least from my Docs, even though they thought they got most of the cells thru surgery there was a good chance of it coming back unless I did rads. Chemo was added since I was Stage 4 and I had mets to both sides of neck.

Hope this helps. Just to editorilize a bit, the treatment was rough but do-able. I hated the feeding tube but really it was not a big deal and saved my life when I couldn't eat. My tongue hurt like crazy for awhile but it is fine now. My taste has returned 100%, but as I stated previously I can't eat meats and bread easily due to lack of salliva. I am aware of the issues with teeth as most are here and am trying to be proacive in taking care of them. I may be way off here but I have not heard of anyone who had facial disfiguration due to rads. Neck dissection can leave some permanent scarring but it sounds like you have already had the surgery.

My post treatment life is awesome. There are some things I can't and I do miss some of those, but I'm here and I'm enjoying my life after surgery, after rads and after chemo.

If you have more questions, rely on a professional and get a second opionion and good luck in your decision.

Positive thoughts!

Greg

tjuhlin
Posts: 19
Joined: Feb 2011

Thank you all for you responses. I still not sure what to do. After doing research on the Internet this is one of the few sites that have cancer survivor's and family encouraging others to do radiation.

Please do not fault my sister in law, she was sharing her observations of what goes on in the operating room and in a hospital setting. She and my brother felt that I should know the negative effects of radiation that was never discussed in "depth" by my surgeon, staff and the radiologist.

I do have several questions about radiation treatments if someone could help out on that I would be grateful.

1. I have a hard time swallowing now does that mean I will loose my ability to swallow sooner?

2. Can I personally drive to each and everyone of my radiation treatment (30 mile RT)?

3. Do I or would I need a full time caregiver during treatments?

4. When should I begin physical therapy (several neck muscles were cut in the removal of my tumor) before, after or during radiation treatments?

I know these are generalized questions and that the answers depends on the individual who is receiving radiation but I do have to ask so I can get a general consus.

Thanks Again

Terry

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Terry,
Looks like you got a lot of information and that it was all fairly consistent. I'd have to reiterate what a few of us said about 2nd and maybe even 3rd opinions. Always a good idea that can bring clarity. In response to your new questions:

1. You will possibly lose your ability to swallow at some point during radiation. You won't know till it happens.

2. I drove myself to all my radiation sessions. Actually I drove myself and my support team on the days they came. What could effect that is the amount of meds you are on for the pain from radiation. My pain wasn't too bad so I wasn't impaired.

3. You probably will not need a full-time caregiver. A cleaning service once a week would be helpful though as you're going to be very fatigued. Help with making meals in advance would also be nice though at some point you will probably be completely dependent on tube feedings which is actually easier to manage.

4. Not sure about the physical therapy. Take your docs advice on that or check with the physical therapist and see what they recommend. You are going to be very fatigued during radiation and won't feel like doing much more than showing up to get zapped each day.

Again, keep us posted what you decide and how it's going. We're all here for you anytime.

Bob

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I did not have an easy time with treatment. I only had radiation. Chose not to do the Erbitux. I also had my peg tube for 18 months. My mouth is dryer than dirt, but I was also down one salivary gland going in. My mouth was a wreck and I was in severe pain. Let me say that I had never taken anything stronger than ibuprofen before this, not even when I had a biopsy and a bunch of stitches under my tongue. I was on 75 mcgs patch of fentanyl. I was still in serious pain.

1. I had problems swallowing prior to my diagnosis and actually had my esophagus stretched two years before my cancer. I was told that I developed a stricture because of the radiation. I have been stretched twice since. I still have a stricture and have learned how to cook and eat well despite that.

2. I could not personally drive myself to and from radiation. I took medication that made me drowsy, and then adding the benedryl i had to take before my amifostine shot, that made me about comatose for the ride home. After the second week I was too sick and way too sleepy. I had to bring a sick bucket in the car. My hospital is about 30 something miles away. About 45 min drive. I would go home and pass out for two or three hours after rads.

3. Well at one point I needed help and could have used full time help. My step mom did drive me every day, but by the end I was very bad. I could barely get out of my bed to feed myself or use the bathroom. I had to do everything on my own. There were times I was so bad that I didn't know what day it was or that I could just look at my phone to find out. I should have had help, but didn't.

I'm still not working, I still have side effects and mega issues with my teeth, but I'm not dead. I am grateful to be here. It just took me a little longer to get to my new normal. With children I cannot imagine not fighting tooth and nail and giving it everything, but that is just my opinion.

DJG1
Posts: 122
Joined: Jun 2010

Terry,
I am glad to know that the doctors were pleased with the "radical" neck dissection. I beleive this means they like the margins there were able to get. I am not going to be so hard on your SIL. I will say that I asked my self the same question, as I know some here also did, but not all. I think you SIL has good intention,and want you to be aware of the damage radiation can and will cause. As many have said, the radiation treatment is challenging, but doable, but the Cancer can be down right burtal and deadly. I had many reservations before I continued with treatment, including neck dissection and radiation, but I did get through it, with many of the predicted side effects. Depending on what type of person you are, some prefer to know exactly what to expect and the best and worse case searno. While others choose to know as little as possible, and take lead from their doctor and never ask questions. Neither way is better than the other way. Just depends on who you are. If you take the later way and rely totaly on what you doctor say, I would just suggest that you are comfortable with you doctor. If not, get some other professional opions. If you are the person that dont like surprises, then get as much information as you can, from both experienced patients and other doctors, such as ENT, or radiation oncologist. ONLY THE PATIENTS CAN TELL YOU HOW THE SIDE EFFECTS ARE. The Doctors can tell you WHAT the side effects could be. From that information you can then make the best decision for you. I think there is one person on this board that just had the neck dissection. JOEL. He may offer you some advice as well. In response to your recent questions, I was able to drive my self to each radiation appt. I did have to pospone the last 5 for a week, but was able to finish. I had my tonsils removed same time as my neck dissection and started radiation approximately 4 weeks after surgery. I did do neck Physical Thearpy for 8 sessions about 6 weeks after completion of radiation. My throat was the sorest after the tonsils were removed. So during treatment, I experienced some discomfort, but nothing like some others experienced. I did not have a feeding tube, and was able to eat enough during treatment, that It was nevered considered. My RO was old school and did not like the feeding tubes (said it was vital to keep swalling, and was not much on pain medication). Good Luck in what ever you decide. Everyone will be here to support you what ever journey you decide.
Deb

DrMary's picture
DrMary
Posts: 527
Joined: Nov 2010

(folks who know me know I mean "peer-reviewed journal articles") - radiation by itself if more effective for H&NC than surgery alone and about as effective as surgery plus radiation. I will try to find the article(s) I read back in August that had the data.

I went looking because I was all for surgery with no chemo and no radiation, if possible. I was surprised by what I found. It actually looks like the trend will be towards less surgery and more radiation (or radiation used more often). I was also worried about the side effects of radiation and chemo - they were hell but short-term. The most actively annoying side effect is from the surgery - bad shooting pains from the nerves affected by the dissection. I'm glad Doug chose to go with what his doctors recommended - they have a very good track record.

When cancer comes back, it can be tougher to treat - for one thing, it might pop up in a place that is less rugged than the H&N area (like your chest or colon). Much better to make sure every last one of those little buggers is dead.

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Jimbo55
Posts: 572
Joined: Jun 2010

Pretty much I believe many of us in your same present situation questioned the need for radiation and/or chemo treatments. As you can read from the responses to your query, the majority here have come to the conclusion the correct choice for them was to go ahead with the rads.

It is impossible to say how severe the side effects will be for you.

My guess is if you have some difficulty swallowing now, most likely the rads will exacerbate this and you will see problems sooner rather than later.

Transportation was never an issue for me, but looking back now I didn't feel up to driving those last few weeks of treatment.

My wife was my caregiver and that certainly made things so much easier. Some have made it through on their own.

Again much depends on how severe the side effects are for you and no one can tell you that right now.

Best to you Terry. Cheers

Jimbo

don62
Posts: 25
Joined: Sep 2010

I would trust your dr. Thats why they get paid the big bucks. The side effects that you were told about vary from person to person, I lost about 10 pounds and never lost the ability to swallow,(course my dr was old school and made me swallow all the time). Pain meds, she didnt belive in them. So I went through all my treatments eating on my own. I had no one to take care of me, in fact I took care of two teenage kids, so its all doable. I was like you and had no idea what I should do, but I was lucky enough to find this place and read what others had gone through and here they are still helping people. Its your choice and I will support it no matter what it is. But just so you know I heard the two most beautiful words in the english language thanks to everyone here. Your cured.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

You need to find out how many areas are going to get the radiation to be able to get a grasp on the side-effects. I was zapped in 20 places. Co-worker had a problem by his larynx, and he only got zapped in two places, and his side-effects were very minor.

Seems to me your decison comes down to whether or not the C is gone without the rads. If it is not, then rads are the way to go. Perhaps you could delay the surgery, and get a Pet Scan 6-9 months from now to see if there's any C. The only way to error in C treatment is to error on the side of the aggressive, but if the C is gone, then rads are only destroying good tissue, and the saliva needed to keep the mouth clean, the natural way.

Ratface made a good point, though one there's not a lot of stats on- the chance of a secondary C with the rads being the cause. This is a subject not talked a lot about, here, but we all know it's in the cards, and hope it's unlikely.

As for your in-laws advice: yes, the teeth and gums do take a hit, but my saliva has gradually returned, and taste, and I haven't had swallowing problems since the rad swelling went down. It amazed me on how fast my mouth healed, except for the teeth.

Please keep us updated.

kcass

Dazey
Posts: 86
Joined: Sep 2009

Hi

I am 18 months post treatment for squamous cell cancer, unknown primary, lymph node removed-- three clean cat scans post treatment - follow up every 6 weeks with ENT during the first year and now will be doing every 10-12 weeks. I had IMRT 30 treatments with no chemo. I worked every day during treatment- would leave work at 3 pm to drive the 1 hour to treatment. I drove myself. Remember the mantra of this board: Everyone is different. I did not have a peg tube; I did lose 40 lbs - look great and have maintained my weight for over a year. Dry mouth; some mucous; some foods do not go down well.... nothing I can't deal with. This is just a brief summary of where I was and where I am now. Feel free to pm if you want more information on my experience. Just know that you will get through this. Sometimes, people make comments through their personal lens of experience. Sometimes, they are wrong. Good Luck! Dazey

Hq18
Posts: 24
Joined: Mar 2011

Terry, I too had a total right-side dissection 4 weeks ago and being told could not find the primary of my throat cancer but they removed a fairly large tumor during this procedure. I found it difficult just dealing from this and then my wife left me 3 weeks ago so found myself questioning it further. I spoke to my radient care doctor and my E, N, & T specialist about not doing radiation and what my chances were. They both gave me the facts that this is not there recommendation but understood. They told me that if they do not do it now then the chances of curability decrease. Then my primary doctor got involved and encouraged me to go thru with radiation because she has seen people that were all against doing treatment and then a few months down the road found themselves in the hospital bed full of cancer. I decided that as hard it is going to be to do without my wife of 15yrs, I dont want to be that person. Don't get me wrong it is going to be difficult and it is going to suck but time will tell. I will be starting radiation next week 6 1/2 weeks M-F. I hope you make the correct decision for yourself because only you know what is right. Good luck!

OHNC survivor
Posts: 4
Joined: Mar 2011

Hi Terry, I'm a 12yr survivor of stage III tonsil cancer. I had two surgeries, a tonsillectomy/modified palatectomy then neck dissection followed by six weeks radiation. For years, I have facilitated a head & neck cancer support group.
The fact that your doctor says they got 99% of your cancer raises a BIG RED FLAG for me. Over the years, I have seen more recurrences than there should be. With all due respect to your SIL's dubious choice of words, I would definitely advise you to go thru radiation. It certainly is not a fun time, but living with some residual effects greatly outweighs dying from a recurrence that they can't eradicate.
Everybody tolerates radiation differently. There have been a lot of advances since I went thru it. IMRT does far less damage to surrounding tissues, new meds for dry mouth, and any other symptoms that arise. You have to be patient,and take it one day at a time. Do what you have to do to get thru it. Be sure to tell your docs and techs about any bad symptoms that might arise.
You can live an enjoyable "new normal" life that you might not experience if you do not have radiation.
I wish you the best outcome.
Valerie

tjuhlin
Posts: 19
Joined: Feb 2011

Thank you all so much for responding to my dilemma. Your concern,advice,experiences and your various "words of wisdom" gave me new strength and hope. You've answered more questions that I had than my Mayo Radiologist. I will be seeing my local radiologist this Thursday (04-07-2011) and I am now better prepared for that meeting and will not go blindly into this consultation like I did with the Mayo doctor.

My new mantra is "Everyone is Different".

Thanks again to you all!

Terry

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Terry,

I am in agreement with your sister about Quality of Life vs. Quanity of Life and I am afraid that puts me in the minority at least with other cancer patients.

I have had a 30 day set of radiation in 1996 and the side effects post-radiation were nothing compared to what is starting to show up the last 6 months. I have developed photo phobia (intolerance to some lighting), it almost destroyed my hypothalmus, pituitary and thyroid (all which started acting up in the last 90 days and left me in the hospital for 2 separate weeks this year while trying to figure it out).

My tumors are in many locations including the optic nerve, optic nerve chiasm, carotid artery, left eustacian tube, left jaw bone and left side of my face, not to mention 2 out of my 4 sinuses and my skull base. I was told that the tumors would not come back in my sinsues, carotid artery or skull base but they did.

However, I maxed out on radiation around my optic nerve and there is not much they can do now except keep an eye on the tumors. Luckily they have shown no new growth in 2 years but at some point I am told I will probably lose my vision. That is difficult when I am already losing my hearing.

My husband, doctors and I have decided to take a "watch and wait" attitude. We hope that the technology will advance enough before I lose my vision to give me other options which may help me better.

I would rather have a few years of something really good, than many years having to live out my life in an institution because I can't see, hear or function. My doctors understand this; and they are in complete agreement.

I am only 49 but if I can get another 5-10 years of good living instead of 20-30 of "so-so or sub-par" I'll take it. I have a wonderful husband who supports me unconditionally, 2 great kids and 5 beautiful granddaughters who support me as well.

This is a very personal decision. But please be advised that you need to really ask your radiation oncologist some serious pointed questions. Mine was honest with me in 1996 and told me that it could take upwards of 10-15 years for the side-effects; the serious side-effects, to show up. He was spot-on with his estimate. Please do as much research and asking questions as you can. Once you have the radiation, it is too late to undue the effects. That said however, not everyone will have issues to the same extent as others do. Just do your homework.

Good luck and keep us posted.

donna b
Posts: 13
Joined: Mar 2013

This is my first time on this sight. My case is a bit different from those I've read, although similar enough for someone out there to help, I'm sure. In january, I had surgery for stage 1 tongue cancer with perineural invasion. No lymph nodes involved. One-helf of my tongue was reconstructed and I had a neck resection. After surgery my surgeon said I was "cancer free"" and said no further treatment would be necessary. Yeah! Now, eight weeks later, he has changed his mind. He missed reading in the biopsy report about the perineural invasion, which means recommending radiation. (the nerve issue was in only the biopsy, not the after surgery report, which showed that everything was gone). Anyway, after two visits to a radiologist, I'm left with the decision whether to radiate or not. I'm "borderline" and it's my decision. "Studies" recommend the radiation just to be sure. After reading all the side effects of the rad/chemo, I'm scared and confused. Anyone out there have my type of cancer? Anyone NOT have the treatment? Thanks.

CivilMatt's picture
CivilMatt
Posts: 2957
Joined: May 2012

Donna b,

 

Welcome to the H&N forum and at the same time I am sorry you fin yourself here.  With what I guess are residual cells floating around the decision to not radiate sound wrong.  I am not a doctor so really do not know your case very well.  Most likely, after your team has studied your case they will develop a plan to give you the greatest chance of survival “caner  free”.

 

I on the other hand went to the school of “throw the book at it” i.e. surgery, radiation and Erbitux.

 

There have been some rough times but I am bouncing back and feeling pretty good.

 

On a side note, you have posted in an older thread and these generally do not get as much attention.  You should repost by starting a new thread (top of page) then simply tell your story again.  I guarantee it will work.

 

Matt

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Started a new post for you Donna B....

Welcome to the club...

John

KTeacher
Posts: 936
Joined: Jan 2011

nothing to play with.  I have had good care but cancer traveling on the nerves is unpredictable.  My cancer did not read the rules, my recurrances shouldn't be, but they did.  My first was on my lip.  1 inch of upper lip removed, 50 stitches, followed by radiation.  1 year later a lymph node on the opposite side on my neck, not supposed to happen.  Neck dissection followed by more radiation.  Perineural--'c' cells traveled up my cheek and into orbital nerve, eye removed followed by chemo and radiation.  I had clean margins the first time.  Do everything possible to rid your body of cancer.  Tough fight but I am here to see grandchildren grow up, nothing better.

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Hi Donna,

One idea I have, as you say your borderline between having radiotheraapy and not having having it, is that you may be a candidate for low dose Brachytherapy?

This is basically internal radiation where they put some radiation into a targeted area (in your case your tongue) and leave it there for a period of time.

It's not used all that much these days I don't think, because external beam radiation is so targeted and offers much better outcomes to internal radiation, but head and neck is one area it is still used for at times because external beam radiation can be so damaging to the oral cavity.

Another reason it may be used for oral cancer is because when you have external beam radiation once, you tend not to be able to have it again (because the first times does so much damage to your head and neck) so if you have the earliest stages on oral/tongue cancer (carinoma-in-situ) they will sometimes use Brachytherapy and save external beam radiation as a back-up option should more treatment be needed later on.

Now, it may not be advisable for you as you say the cancer had gone invasive (all-be-it the earliest stages) as far as I'm aware Brahytherapy tends to be used when the cancer is non invasive and basically is just sitting on the top of the tongue, waiting to start digging itself into the tissue. However, it could at least be worth asking about?

Bottom line though, you must be guided by your doctor.

Ask he/she what they recommend and then go with it.

Ultimately your well-being and care is their main priority and they deal with this rotten cancer every day, so they know whats what.

Good luck. Let us know how you go.

Deeocala's picture
Deeocala
Posts: 2
Joined: Jul 2013

2013-07-27 I was diagnosed with tongue carcinoma in May of this year, 2013. On July 3rd I had a partial Glossectomy and radical neck dissection. No lymp node involvement. Was told by doctor she  got clear margins and no lymph node involvment on the pathology report. Was told this woiuld be all that was needed. When I went for a follow up post surgery, doctor stated that everything was clear. Before I was ready to leave, she then told me those famous words "But" I need to confer with the board of physicians and I will call you regarding radiation treatments. I got the call a week later and doctor stated that the board decided I should have the radiation. Through my middle and later years I took care of several cancer patients, some with chemo/radiation and some without.

The question I have is are there any persons out there who survived 5 years or more, with or without treatments, and without re-occurances? If there is anyone who has survived more than 5 years, can you describe the side affects and your quality of life?

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

This is a pretty old thread, so could be missed by those who can answer YES YES YES to your question about survival after 5 years....I'm only a year out, so can't answer that one.

Please start a new subject title (to the left at the top of the page under HEAD AND NECK CANCER it says "Post New Forum Topic"....do that and tell your story so people will for sure answer.

p

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

dee, i don't know about ur type of cancer but i wanted to tell u good luck and i will b wishing u the very best.

p.s., what is a Glossectomy?

dj

GavinP's picture
GavinP
Posts: 80
Joined: Feb 2013

Is the partial or total removal of the tongue.

debbiejeanne's picture
debbiejeanne
Posts: 2428
Joined: Jan 2010

thanks, gavin.

dj

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Dee,

Welcome to the site no one really wants to join.  As P said...Your question will receive much more attention if you start a new thread. Older threads tend to get lost. 

As to your question... a 2nd opinion at a CCC is advisable. Radiation and chemo are common treatments in addition to surgery. remember, all it takes is one stray cancer cell to start it all over again. Better to get it now. 

Side effcts are varied and many. Check out the Superthreat at the top of the board. "Everyone's different" is a mantra you'll hear over and over.

Positive thoughts and prayers

"T"

TracyLynn72's picture
TracyLynn72
Posts: 704
Joined: May 2013

 

What Phrannie said :)

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