To Radiate Or Not To Radiate That Is The Question

buzz99 said:

Radiation
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?

Radiation
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

miccmill said:

Radiation
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

Positive/Negative Effects
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 said:

Thank You For Your Responses
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

answers
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

DJG1 said:

Radiation
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

According to the research
(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.

Jimbo55 said:

Terry
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

Terry
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.

don62 said:

Terry
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.

Terry
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

another party heard from
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

To radiate or not
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

Quality of Life
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 said:

This is my first time on this

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.

first time

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