Decision time is closing in on me. I thought I had already made that decision but now am having second thoughts.

When talking with my radiation doc during the original meeting, he told us that he had not seen much, if any, difference in the after/side effects of the two, and said he would suggest traditional treatment.

As I understand it, I am Stage 2, borderline 3, T2N0,M0, base of tongue SCC. Doc has been on vacation since a couple days after my meeting with him so at this point I have no idea what the plan of attack is to be. He said he may consider treatment twice daily. Not knowing what questions to ask at that point I did not ask if that would mean lower doses. I suppose the effect would be the same on me though as far as side effects. The doctors at Moffett Cancer Center confirmed that radiaiton and chemo should be the treatment of choice, but no mention of which mode of radiation.

Today I had the necessary teeth removed, 3 of them. That essentially puts the start of radiation and chemo somewhere around the 22nd.

What difference, if any, have any of you encountered with IMRT vs traditional? Are the side effects, mucositis etc pretty much the same? Is this something I should be driving myself crazy over? Confusion is something I try to avoid as much as I can. I am a one man insurance agency and have visions of being able to service my clients, with the occasional day when that will not be possible. Is there too much rose coloring in the little bubble I am in?

Hi Bill,

I too had SCC at the base of my tongue. Didn't have any teeth removed becaasue of the ability of my rad onc to pinpoint the radiation. That and my dental trays and floride. I started treatmeant last OCtober and finished the first week in Dec. Do you have your peg tube? My email is [email protected]. I will be glad to discuss with you on the phone and help and advise any way I can. There are several here in Raleigh that have been through this and can help.

Steve

Another post from me.

I had IMRT plus chemo. I wasn't offered a choice of "traditional". According to my Med ONCologist, the IMRT is a no-brainer. The IMRT can pinpoint the radiation to the cancer location and spare a lot of surrounding tissue. All my saliva is not yet back, but it is coming. I wasn't able to talk for about three weeks becasue my voice was so weak, but that was a small price to pay for my successful treatment. Since I have had successful IMRT, I would vote for it. It is the latest and works. You will hate the mask, as we all did.

Steve

I think your doctor needs to see more radiation patients. Most of the value of IMRT is the ability to map out some or all the salivary glands. This means a better chance of recovering some salivia after treatments end. Sometimes this recovery takes many months which is why your doctor dosn't see the difference. There are several people here that had IMRT and now have most of their salivia back. This is a big deal (I think) and well worth insisting on IMRT if you can get it. If you want to know what it is like to have no salivia then take an entire sleeve of saltine crackers and stuff them into your mouth. Then try to imagine that feeling 24 hours a day.

In my opinion, saliva loss (Xerostomia) is the single worst long term side effect of radiation treatments. Besides affecting ease of eating, it also creates a problem for future dental care and general daily comfort.

Either treatment will probably cause the same bad effects during treatments. (no easy way out) However you do have a reasonable chance to be able to work at least light duty while being treated.

Hound them until you know the plan and hound them more if they want you to get XRT (non IMRT) radiation.

Hello Steve.

I guess I am still in that state of confusion such that I don't know what I don't know and thus don't know what questions to ask. My head is telling me that the IMRT, if a "rifle shot vs a shotgun" "should" result in fewer or less severe side effects, mucositis etc... If that is the case, why would I even be considering the other method?

I know there is not easy road to take here, I would just prefer to take the one with smaller or fewer speed bumps.

Thank you Mark. That is pretty much what I was looking for. IMRT is available and I think it makes more sense.

Speaking only after having IMRT (and we had to bring it up to the radiation oncologist, because I was originally slated to have XRT)I am amazed that since my treatment ended in March how much moisture I do have in my mouth. Although gaining weight is still an issue with me, I'm amazed at the stuff that I am able to eat(going to Indian food, Mexican food and many many buffet lines)

Although it wasn't easy, having had the dry mouth and horrible mucous problems, I find myself amazed that I feel as well as I do after treatment. I don't even feel the need to constantly have a water bottle around me anymore.

In hindsight, I'm glad my spouse brought up IMRT. Certainly at the time when I was in "shellshock" over the diagnosis, I wasn't thinking clearly enough to even ask. My doctor seems to think that at least one of my salivary glands is totally shot from rad, but it sure seems to me that things are slowly and surely improving. I'm very grateful that my tastebuds came back too, although hot spicy stuff is still an issue.

Jen

Thanks Jen. Having had the IMRT, and I know that all you have to compare with is what others described, would you say your mucositis was equal to or less severe as those who have described theirs with XRT?

Bill

Bill,

One thing you haven't mentioned (and I don't know whether your doctor has) is whether your medical team thinks either approach can be equally effective at destroying all of your cancer. In many cases, tumors that are poorly differentiated can't be sufficiently well targeted with IMRT and I believe XRT is still the preferred option in those instances. "Poorly differentiated" means the tumor contains abnormal cells that grow at a more aggressive rate.

Full disclosure: I had XRT at a time when IMRT wasn't even available (and probably would have needed XRT anyway because my tumor fit into the poorly differentiated category). I had pretty severe dry mouth for quite awhile after radiation, but have gotten quite a bit of salivary function back over time with regular use of Salagen, and more recently, regular use of Biotene mouthwash and gel as well.

If you're trying to figure out how much you'll be able to continue working during treatment, I'd advise a good contingency plan. We have a number of people on this site who found they couldn't work at all for awhile once the effects really kicked in, while others were able to keep up some level of work schedule. I went from a normal workweek (pre-cancer) of about 50-60 hours in a client service business to a schedule of about 30 hours a week during treatment and for a number of weeks thereafter.

Cathy

Bill, My husband was also treated at Moffit Cancer Center and I imagine you are also seeing Dr. T... (don't know if we are supposed to name names, but I'll give you the first initial). He didn't even mention IMRT to us and if we hadn't gone on the internet and learned about it between appointments (hadn't found this forum at that time), we wouldn't have known to ask for it. When we went back and asked him about it, we were told that Moffitt policy is to give IMRT to patients who don't have surgery but to give standard radiation to those who have gone through surgery. This made no sense to us, especially after reading the IMRT study results from MD Anderson, published in 2005. He finally relented, saying something about it being more costly and saying he didn't know if our insurance would cover it. It did. The whole thing made us very uncomfortable with Moffit and I later found out the St. Joseph's Cancer Center in Tampa does IMRT (and often amifistone) as pretty standard treatment. Moffit will only do amifistone if you are part of a trial (or so we were told). He also told us that amifistone isn't needed if you use IMRT. Even though Moffit is ranked #13 by US News, we really began to question the radiation department's treatment protocol (and still do). In the end, Jerry got IMRT. They felt he wasn't a candidate for chemo due to another health issue. However, he seemed to breeze through the treatment in many ways (never needed to use peg, never needed pain patch though he did take pain meds 4x daily, mucositis didn't seem that bad. In fact his biggest issue has been a soft tissue injury (non-healing spot) at the site of surgery and where radiation was boosted. He also went through acupunture through Moffitt's Integrative medicine unit and he felt that alleviated a lot of the side effects. After reading everyone elses posts on this board about IMRT being pretty standard at many places, we continue to question exactly why Moffit is sticking with standard radiation for post-surgery patients. Oh, also, for some reason the surgeon he saw there seemed to be really opposed to IMRT. I could just never figure it out. Good luck to you as you sort this out! Connie

Bill, the flem stuff is horrible for any of us. I couldn't say mine was worse or better than someone who had the other treatment. Boy it was terrible for me. My rapid weight loss even with the PEG was probably due to the ropey flem, as it made me throw up quite a bit.

Even now, four and a half months post treatment, I occasionally have to hack up some flem during the middle of the night, but it's still a great way down the road from what I use to put up with. I'm even grateful that I no longer have to sleep in a recliner and can sleep in my own bed.

All I can say, such a few short months after treatment is that I am amazed that I feel as well as I do. There were times my radiation onco would tell me about another patient going through the same stuff that never even had a dimished appetite. I couldn't believe another woman could still mow down cheeseburgers and fries, when I had to concentrate on just keeping my PEG feeding down. However, it did remind me that everybody responds different to treatment. After finding this forum, I realized that I, like most, had the problems usually associated with radiation and chemo.

Treatment is no picnic. Even when it's over it takes awhile to recoop and heal, but just a few months out from it, I really feel better than I thought I would, which is remarkable. I just hope there are continued improvements.

Jen

Bill,

One more thing I forgot to mention in case you end up looking for 2nd opinions. In addition to St. Joseph's Cancer Center in Tampa, Anderson MD Cancer Center(US News #1) just happens to have a branch in Orlando. I called over there at one point when we thought Jerry wasn't going to be able to get IMRT at Moffitt and set up an appointment. When Moffitt finally came through, I cancelled. Anderson MD - Orlando staff were extremely helpful over the phone. They actually let me speak to one of their doctors without an office visit.

Also, I find it interesting that the Moffitt R.O. told you that "he had not seen much, if any, difference in the after/side effects of the two". We were told they almost never use IMRT for patients who also had surgery, so my husband must have been one of the few they have observed. Throughout his treatment the RO and his nurse told my husband how he was doing so much better than the average patient. I can't say it was due to the IMRT. I just know that those were the comments made at the time.

Eventually I guess I'll remember to list everything to avoid confusion, though that seems to be my state these days.

I only went to Moffett for a second opinion on surgery as my ENT pretty much put the fear of God in me regarding having it done. I must say that he gave me the impression that he was scared to death to put a knife to me as he constantly was makeing reference to the nerve bundles in the area. Though I did not ask, my guess is that he likely has never removed one of these.

Also, I suppose it is okay to mention other reasons for my lack of trust as I will not mention his name. My GP referred me to him back in 2002 for neck, shoulder and ear pain. The diagnosis was something to do with my hyoid bone and in time the symptoms went away. They returned a couple more times and were also attributed to the same problem. Each and ever transcription report of my visits make mention of leukoplakia. The report from my August 2004 visit says, "The base of the tongue is swollen." Other than some xrays back in 2002 and scoping my throat on several visits nothing else was ever done. I have not seen him since the post biopsy visit, and have no intention of returning there.

At Moffett, I only met with an ENT doctor, who spent quite a bit of time with me, going over my MRI and the office visit dictation. Needless to say, she was quite appalled that no investigation had been done. Given the size of my tumor and the fact that it had not spread anywhere, according to the MRI report, she highly suggested only radiation and chemo, saving surgery "if" is should ever return.

It is the RO that I am seeing here that made the comments regarding IMRT, not anyone from Moffett. He did tell me that he would do whichever I chose though. If I have left anything else out please ask.

That sounds pretty typical Bill. I had a raspy voice and occasional ear aches and sore throat off and on for over a year. My doctor actually sent me to a Pulmonary doctor, when I was so short of breath I could barely get around,who scoped my lungs and "on the way out" saw that my throat was almost totally closed.

My Onco/Rad said he gives IMRT for some types of cancer but for mine it is XRT. They did explain to me however that the machine they use has "sleeves" in it that conforms to the shape of the area being radiated. Some may know what its called but I can't remember. I had surgery first and then 33 rads.

Hopefully the one you go for will be the winning one. That is all we can hope for.

Blessings,
Barb~

c clark-
My Mom lives in austin tx- 3 hours away from MD Anderson. I urged her to get a 2nd opinion before doing anything but she was anxious to "beat the cancer" so she proceeded with a local oncology group. Do you know if I would be able to talk with someone at MD to see if her course of action is similar to what they would do? I live in NY. How do you get a phone consult?
Tami
Mom has base on the tongue cancer stage 3.

Bill, I would definitely go to Moffitt or one of the other cancer centers mentioned in the area if you feel your ENT doesn't have experience. The surgeon we saw at Moffitt is very skilled and has done hundreds of these procedures. We both had a lot of confidence in her skills and she seems to have done a thorough job. She got all of Jerry's cancer and clean margins. He ended up with 4 cancerous lymph nodes and they had intertwined with a muscle and nerve so she did end up doing a modified neck dissection and did have to cut some nerve endings. This has been one of the things hardest for him to heal from and he will probably eventually go for massage therapy because we're assuming he has lymphedema (swelling, pain, etc.). We were very thankful that the Moffit surgeon was able to remove all the cancer in the oral cavity and the neck. Frankly, I hate to think what would have happened had Jerry had the surgery done from the original ENT he saw. He was treating it like an outpatient operation to be done in an afternoon. He wasn't going to remove the lymph nodes and he didn't warn him of some of the problems that could arise from the BOT surgery. At Moffitt, they took care of it all and he was in the hospital for 4 days. Definitely take care on your choice of surgeon.

Tami, I found the number for New Patients for the Anderson MD Orlando facility and called and explained the situation. When I called, I was inquiring about getting an appointment for a second opinion and actually scheduled an appointment. I told the person that I had some questions about the use of IMRT and asked whether they used it and under what conditions, etc. She arranged for a doctor to call me back and we chatted for several minutes about Anderson's use of IMRT. That was the only experience I've had.

Again, I am not having surgery. The wonderful folks over at Moffett did not feel it was necessary and were very confident that the rad and chemo would take care of the problem without any problems at all. Had they suggest surgery it most definitely would have been done there.

My local hospital, which has a cancer center as a part of it, is an affiliate of Moffett and both my RO and MO are affiliates also. The docs at Moffett, knowing my docs, told me that my docs would give me the same level or treatment that I would receive if I were to have it done there and had much confidence in them, as do I.

Bill, My apologies for that last post. I forgot that you had said there was no need for surgery. Good to hear also that your R.O. is saying he will treat you with IMRT if you prefer. It's good that you don't have the lymph node involvement because I think the majority of my husband's post treatment issues have to do with the modified neck dissection. You should be in good shape if they can do a good job sparing the salivary glands. Best of luck to you.

Dad is starting 4th week of IMRT-his mouth one uninterrupted sore-but, his tumor is "significantly" and "profoundly" (MD's words). The cumulative effects of the rad came over night. One day we were eating pizza, the next he was shaking with pain. This is our experience-there is no way to prepare. BUT even NOW, my dad says that this is path to killing the little mother F-er in his throat. Having sharing that, the IMRT is the way to GO!!!
Ensure you are stocked with your pain meds BEFORE it starts. He doesn't have the PEG tube yet but he is down to ONLY LIQUID nourishment.
Best of luck-we are all with you.

Hi Bill,
I did not have IMRT radiation but the salivary glands on my "good" side were spared so dry mouth is an issue, but a small one that get's better as time goes on. I asked my doc about IMRT one visit and he said that is used on certain types of tumors, ones that the docs KNOW is contained to one certain spot so they can focus the radiation on that spot only. He said the chances of undetected mets to the lymphnodes is somewhere around 20-25% and that IMRT can't be given to an area if a doc doesn't know there is cancer in that particular area.
If I were to have IMRT I suspect I would push for a neck disection to make sure there was no cancer in my lymphnodes, that is the only sure way to tell.
Good luck with it,
Minnie

Is IMRT the 3d rad? My Mom is on her 4 week of having it daily with one week of chemo behind her and she has really bad mouth dryness and unbearable mouth sores. How long will the mouth sores last? She can't open her mouth too wide with out it bleeding. After her 4th week of rad she is going to get the double rad treatments daily for 2 weeks. This worries me since she is already in so much pain. Any thoughts?
Tami

Tami --

The radiation team should have discussed and had a pain-management program in place for your mom beforehand. She has the right to be without pain, and they need to get on the stick to help her -- at least as much as is possible. What [ain meds is she getting? Does she take them regularly (if she waits until it hurts terribly it is really too late). She made need the Duragesic patch or even morphine mouthwash. GelClaire is supposed to relieve mouth pain in many patients. The mouth sores will only get worse without treatment and they also need to be sure she doesn't have an infection (thrush, herpes, bacteria) which requires appropriate and immediate medication.

I really think it's awful how little seems to be done for some of the people on this forum re management of side effects and pain -- so you need to be your own advocate and demand attention if you are not getting it. True there is no magic bullet for some of these things but there are available things that can help a lot of people.

Gail

Bill, This note is because of some confusing comments in some of the above posts. It is true that some cancer cases are not best handled by IMRT. If your RO says you can have IMRT then I would always trust that they know more than any of us. (Likewise if all of the professionals said you could not get IMRT then that would be for good reason.)

In your case it sounds like the best RO says IMRT will work for you and most of us non-professionals think you'll be better off with IMRT.

Hi Bill,
Have you asked your RO why he will do IMRT only if you want him to? Does he have any particular reasons for wanting to do XRT. Cathy makes good points when she says that some tumors, while they can be treated with IMRT, can be treated BETTER with XRT. Brian wrote a post awhile back concerning it that made great sense, maybe you can find it.
I hope you can end up with IMRT, it seems to cause less side effects in the long run.
Minnie

Bill, I just wanted to add my 1.5 cents worth ;P

This is such a popular topic, and sometimes, I think people who have had the XRT in the past might be hurt by our dissing it, so when I asked this question, it created a fire storm of posts.

I decided to forgo a drug I really wanted to try ("Erbitux") but can't take it with IMRT, so I decided to do the IMRT vs. XRT based on the opinions of dozens of well versed health professionals and fellow cancer survivors.

It works the same with XRT vs. IMRT but the trials are for some reason written for use with XRT! (I met with the VP of R&D and he has a reason for this, but I don't want to get off topic for you here)

Anyway, I would PUSH HARD for IMRT "IF" it is compatable with the treatment plan.

Don't let one Dr's personal hangup, ignorance, old school thinking, or propensity for novel therapies even; be the ultimate decision trigger for YOUR health care.

:-)

Gail-My Mom was hospitalized on Monday from the pain, mouth sores, low whites and fever. They did give her treatment for thrush. As far as pain meds go, they claim that this (all of the horrible side effects) happened alot sooner than they expected. Her Rad dr. said he doesn't generally see patients get this bad until the final two weeks of the double rad per day. So she certainly was not prepared for things to go this bad so soon. They think the chemo is the main culprit. I requested that she ask for the fentanyl patch since she can barely swallow anything. They did give it to her and she also has another pain med in a pump at the hospital. She is using it in conjuction with the patch. She is really out of it now. I live in NY and she is in TX so it is really challenging to advocate for her. I am trying to do my best but I still feel like I am missing alot. I plan to call her chemo dr. tomorrow and will ask him to send her home with the morphine mouth wash. Thanks for the idea! Will the mouth sores stay until all treatment is over? She also started to getting bloody noses. Is that normal? Tami

She will continue to have or develope more sores in her mouth for about a month post rad tx I am sorry to say. I am glad they did something for her discomfort, Mine too went downhill as soon as I had my first chemo. I never did get a bloody nose and that needs to be brought up with the Dr. ASAP. Good luck and continue to be there for her, she has a long hard road to go down

Hi Bill,

Each of us has different effects from the chemo and radiation. I had 5FU and it distroyed my mouth and then the radiation kept my tongue and mouth in constant pain. I had to use the peg tube from my first week of treatment and for the next 3 1/2 months. Mucusitis is a normal reaction to the treatment. they gave me morphine and oxycontin which I could take as I needed. I'm not sure if the side effects would be less.

When I finished, the ENT gave me Evoxac (sp). It really helped in the saliva area. I don't take it now and my saliva flow is SLOWLY coming back.

Steve

Bill
I live right down the road from you and was treated at Moffit. It is a confusing time understanding which treatment and the docs don't seen to know until they do all the set up diagnossis and scanns. So hang in there, Moffit is excellent and you will be in good hands which ever way the treatment goes. You do have to ask questions to pull out of them their logic so remember that when you see them.

Hi Michael,
I don't think any of us on here are so sensitive that it hurts our feelings to have questions asked concerning one treatment VS another type of treatment. I think that most XRT recipients are just making sure that the poster realizes that some cancers HAVE to be treated with XRT, they don't have the option for IMRT. I didn't have IMRT, I had XRT as I had lymphnode involvement and my doctors wanted to cover all areas.
I also think everyone should push for IMRT if possible, but if it comes down to the fact that XRT is the only option it would be a shame for them to have a negative opinion of it. Plenty posters on here had XRT and are doing great. Of course we would like to have less side effects, but we're also very happy that it's been a few years after treatment and we are still cancer free! That's the important part.
Just wanted to make sure that all understand that no one is trying to say XRT is "better" or being protective of it. Some are just making sure that the idea isn't given that everyone CAN have IMRT. It's just not that simple.
Take care,
Minnie

I don't understand why lymph node involvement per se should preclude IMRT -- in fact it shouldn't really matter, the IMRT treatment should cover all the cancerous areas if it were planned correctly. IMRT just allows better targeting and avoidance of non-target tissues. It is replacing conventional XRT at most centers and hospitals, in fact, all our larger local hospitals here in Montgomery Co. MD use IMRT for prostate cancer and I would expect, for other cancers where important non-target organs or tissues lie close to the cancerous area (like HNC).

Barry has stage IV SCC (right tonsil --removed w/ some residual at base of tongue and two lymph nodes) and he is not only getting IMRT, he is getting tomotherapy IMRT at Hopkins because they want to avoid radiating his inner ears (he has some hearing loss) and want to maximize parotid gland sparing, which is easier to do with the more precise targeting of the tomo machine.

As everyone knows, the bottom line of treatment is the final outcome, and of that, the major issue is being cancer-free, but quality of life is also a vital concern. Cancer treatments are moving both to improve the first and the second, although there is still along way to go...

Gail

I had the same recollection as Minnie about Brian's post from awhile back on this topic. I think I found it -- under a thread topic "Really Scared" (the post is dated February 15, 2004).

Cathy

This is the post I was trying to explain from Brian. He, of course, says it much better then I do. My only desire is to keep it in the open that IMRT is not for everyone.

Brian Hill
OCF Founder
Member # 4

posted February 15, 2004 03:26 PM
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February 15, 2004 11:26 AM
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I wanted to weigh in on this one because it is such a great technology, but it is not for everyone. If you do a search here on the boards for IMRT you will see similar comments in the past. As great as it is, and as much reduction in after affects that it yields, IMRT isn't for everyone, especially late stage threes ands fours. Even if I had had the opportunity for IMRT 5 years ago, (which I did not) I would not have chosen it because with extensive bilateral neck mets, who know for sure how many occult small cancers cells were in the surrounding tissues, (muscle, fatty, and others) that would have come back to bite me a year later. It works best in areas where the typical cancers are very confined, brain cancers for instance, and as Gary mentioned prostate cancer. These cancers require precious pinpoint accuracy and are usually well defined. They do not typically spread out into the surrounding tissues and become diffused in those tissues like most oral cancers do. So while I am the biggest proponent for this technology in early oral cancers, and in sweeping the areas of known mets even if nothing appears there on MRI's, or CT's, this cancer can end up in the osseous (boney) tissues of your mouth, your spine, and numerous other regional areas in it's early metastasis that are not always obvious to scanning and diagnostic technologies that we use. So primary

Brian-
Thanks for your post. That was very informative and easy to understand. I am fairly new at being in this forum since my Mom was just diagnosed at the end of June. I spend endless hours trying to research this horrible disease and learn anything that I can to possibly help her. I had a few questions for you:

Is the IMRT the 3-D version of the Rad? And what do you mean by Cervical mets?

My Mom's ENT diagnosed the SCC tumor on the base of her tounge (left side) and the size was 2cm. This was after a surgical scope and biopsy. The CT scan led them to believe that it was stage one. After a PET Scan they found it in one node on the left side and a very small 2nd tumor on the right side of tonge base. She is getting 3d rad (4 weeks 1x day, 2 weeks 2x a day + 6 treatments of chemo/ docetaxel, ciplatin, and flurocil 5) This was all done without a 2nd opinion. I just find myself wondering every waking minute if this is the right treatment for my Mom. Especially after the 1st chemo run obliterated her and they now have post poned the rest of the chemo treatments for now. Any insight would be greatly appreciated.
Tami

Tami I would be best for you to start a new topic by clicking on the button "new topic" at the bottom of the page. Your questions won't get mixed up and lost in someone elses' post.

Cervical Mets refer to cancer-containing lymph nodes of the neck. In latin cervix means neck (and in females the cervix is locted in a neck like part of the uterus.) mets is short for metastatic (or cancer spread)

more on the cervical nodes can be found here: http://www.emedicine.com/ent/topic306.htm and here: http://anatomy.uams.edu/anatomyhtml/lymph_head&neck.html

3d Conformal or 3D radiation is not quite the same as IMRT although IMRT is a 3D process. Both types are computer "guided" but IMRT is more complex. Which type your mother receives is partly what is available and partly what will do the best job for her.

thanks Mark
Tami

Well, a new day brings with it a new plan. One that I can live with and I am comfortable with, even if not what I had preferred.

I called my RO's office today and left word for him that my preference was to have IMRT. I also inquired as to whether or not he planned to do a PET scan.

About an hour later he called and we spent about 45 minutes on the phone. The PET scan is scheduled for Friday morning. That was the easy part. We then began discussing my preference for IMRT. He reiterated that he would do whichever treatment I wanted, however my choice was not his preference. In the end, I deferred to his expertise and will be having XRT.

My initial decision was made without taking a most important possability into consideration and was flawed. When asked why I preferred the IMRT I told him that from what I had read that I stood as good a chance of having the tumor eradicated with it and that it would also, in my mind, give me a better chance of not losing all of my salivary glands. In and by itself this was a basically correct impression. However, I left out one real important consideration.

My MRI did not show any spread anywhere. The PET scan has yet to be done, and in my uneducated mind I thought that it would only be looking for renegade cells elsewhere in my body. I also did not realize that even the PET scan will not pick up anything should there be a microscopic cell lurking somewhere.

He asked me what I wanted out of the treatment. I told him I wanted my best shot, with the tumor gone and with the IMRT treatment a better chance that at least some of the salivary glands intact. This would then give me a better chance at a better quality of life after treatment.

Dr. G told me that he wanted me cancer free, and to have a better chance to live, even if that meant a slightly lower quality of life due to the dry mouth problem. He told me that in many cases drugs can be used to help with that problem. He also told me that there could well be some microscopic cells in the vicinity, unseen by even the PET scan that would still be there after the IMRT treatment, but not there if XRT were done. With that additional piece of the puzzle put in place there was no more indecision. I'll send him a Christmas card in 2010 and thank him for explaining that to me.

Hi Bill,
I u know this was a difficult decision for you and I'm glad you're comfortable with the decision even though you were hoping for a different outcome.
Dry mouth is no fun, I won't even try to gloss it over. I am two years out and now it doesn't seem so bad, I feel like my saliva is better then it was 6 months ago. I was lucky that one salivary gland on my noncancerous side was spared. Be sure to ask your doctor if that is a possibility for you.
I can eat anything I want to, but choose not to eat some things as it requires to much work. The things I have given up that I used to LOVE is potatoe chips, just to much work BUT alot of that is due to the fact that I am still having many problems with my teeth and do not have a good chewing surface. I suspect that when I get my implants, I will be back to eating my chips. I eat bread alot, and I still make sandwhiches. I eat any type of meat but prefer steak with cheese on it. Pasta is great. As I said, I eat everything and with some of it just take an extra drink in the middle. I do not have huge issues swallowing, although I have noticed a tiny, tiny difference in my swallowing lately when compared to a year ago.
I wish you well with treatment and keep hold of the thought that it will pass and you will survive it and survive it WELL and cancer free.
Minnie

Bill,

I'm glad you were able to get a more complete explanation from your RO than what you apparently got in your previous discussion with him. Going into something as daunting as cancer treatment, it's really important to understand the "why" of what your doctors are recommending. There were times after my surgery when I was hearing from my medical team that I needed to go ahead with radiation, and at first I didn't see the reason for ANY radiation because the surgery came out with clean margins and no lymph node involvement. It was my doctors' concern about those microscopic, undetectable cancer cells that caused them to argue so strenuously for the aggressive approach they had mapped out.

I hope all goes well for you during your treatment and that it does the job getting rid of your cancer for good. Please keep us updated as you go along.

Cathy

Thanks Cathy. I am putting together the "up to now" part of my blog, "The Road to Remission", and hopefully can get it started this weekend. A very good friend, who is a photographer, took one of his pictures of a curve in a road, and photoshopped a road sign into it with the curve and Remission below it. I wish we had the ability to upload pictures, it is fantastic!

Congradulations Bill on making your decision...

So far, I think that is one of the hardest parts.

(Of course, I haven't had the Chemoradiation yet:)

Be strong. And keep you inquisitive nature, it just may be the thing that makes the difference.

- Michael

To hell with "remission" - I'll take "complete response" (CR) thank you. This isn't leukemia or Hodgkins disease.

Same thing basically my doc said Bill so I got the max with XRT. Good luck tomorrow. I wish you the best. It will start out slow but when it ends you will wonder how the time went by so fast.

Blessings,
Barb~

Hi Bill, to give you further encouragement and support, I am the one who received XRT together with chemo to treat my T2N3M0 tonsil cancer 4 years ago.No surgery, no feeding tube. In fact I was never given the option of IMRT or was I even aware of its existence. I have always been an ignorant and obedient patient who seldom argued with doctors ( good or bad? it depends!)Dry mouth problem is really frustrating but is not intolerable.With a bottle of water around, I can go anywhere and eat anything. In fact I usually still have half of the bottle full when I return home.
So far, I have no regret that I was not an IMRT patient and as Brian said, not everyone is a suitable candidate. I have been in remission for 4 years and everything is back to normal, almost 100%.
Sorry, Gary, 'remission' is the term my oncologist used to describe my status and he refused to declare me fully recovered at this stage and I obediently accept his words.

Karen

All I will add to the discussion at this time is this is not what the ROs at Johns Hopkins told us -- they said properly planned IMRT was the best approach even for Stage IV HNC, which my husband has. In fact they are putting him on the tomo IMRT to better facilitate the radiation targeting and improve results. They do give what they term "prophylactic doses" outside the primary target areas to catch undetected cancer cells.

I will ask the radiation physicist Monday when we meet again to address the issue -- I am not sure if they even do conventional XRT (by which I assume everyone is speaking of 3-D conformal) any more for HNC.

Will report what he says....

Gail

I would be interested to hear if John Hopkins is not doing XRT radiation any longer, or conventional as it is sometimes called. That would seem like a huge step for any hopital to take. Are there any studies done yet showing the success of IMRT, long term?? It sounds like the choice of treatment if it shares the success rate of conventional.
Possibly IMRT is being paired up with conventional?? A weaker, less damaging dose, is being given to surrounding areas??
There has to be a reason why any doctor would say that IMRT can be used on any HNC, at least a doc at a top 50 place.
Any thoughts?

As I understand the technology IMRT is delivering the same amount of energy to the target. The issue is whether the target is everything or something less than everything. I read here (by non profesionals) what amounts to guesswork. None of us know what the specific maping layout is for any patient here. For us to question specific treatments is out of line. We are not trained on the myriad details of radiation therapy. IMO, There is no reason to believe that properly planned IMRT is less effective than XRT. I would love to have a RO speak here to resolve any questions we have.

Also I do not believe XRT is the same as 3D conformal.

3D conformal is an earlier version of IMRT. It can definitely be used in a prophylatic sense as well. Most of us have had bilateral irradiation as well as lymph node targeting, etc. It's been said many times here that one must be a candidate for IMRT and meet certain diagnostic criteria. A lot of the treatment programming IS educated guesswork - that is why it is best to be treated at a comprehensive cancer center. IMRT is a standard of care now. In over 10 years of usage it have proven itself efficacious and almost all of the RO treatment centers have retrofitted or purchased new machines with it (the life span of the typical LINAC is about 5 years).


XRT is not going away - for certain types of tumors and conditions it will remain the treatment of choice. IMRT machines can be readily converted back to XRT by unsnapping the multi-leaf collimator (MLC). In fact when you get the weekly x-ray, they take off the MLC. There is virtually no difference in the ionizing radiation source between the two, only in the targeting methodology.

Interestingly, Proton Beam Therapy (PBT) is SO accurate that they use it in conjunction with IMRT for the marginal areas. I have never heard of a multimodality treatment with both XRT and IMRT.

As I said, I will ask our rad physicist (who is the person responsible for bringing the tomo therapy IMRT to Hopkins) about these issues and post what he says. At the least, it will be interesting to hear his perspective from the technical side.

Btw, I also had heard (as Gary said) that IMRT can be used to deliver more conventional radiotherapy by modifying the delivery system. Remember until a month ago my perspective has only been from the prostate cancer end (I am a SPORE advocate for Hopkins' PC program) and not fro m HNC side.

Gail

Gail, I hope he is willing to contribute. I also hope my comment was not taken as harsh. I worry about the many people that come here and read these posts daily. What I watch for is information that may either worry them (for no good reason) or lead to a misunderstanding. As I said in an earlier post, the RO is the one that needs to make these judgments. I am rather sure that an IMRT system could be programmed to deliver the same amount and coverage as a non-IMRT machine. In the real world they probably wouldn't do that because of the time and expense of programming. It is much more simple to use traditional XRT to cover a wide field. In addition, I would make an educated guess that the actual treatment time in the machine is faster with XRT. This means more patients per day and that means lower cost. (Or higher revenue). There are many of these older machines still installed that probably means they are going to be used.

The original post was to question if IMRT was preferred over XRT. The bottom line, I think, is that it IS preferred IF the RO running it believes so. Several of the subsequent posts seem to call into question the efficacy of one over the other. That is where the RO needs to be relied on not us. The only thing we should do is provide awareness of options.

I have a concern when a local Doc sends someone to a local RO to have XRT when IMRT might be available regionally. This kind of thing does happen and will probably result in worse, permanent side effects for the patient. That someone elects to have XRT in the end because of confidence, convenience or cost is certainly up to them. That is where multiple opinions and consultations are needed.

You might have guessed that this is my personal story. I was treated with XRT locally, IMRT was probably available regionally, and I was totally unaware of the option. As a result I do have serious long term side effects that I would not wish upon anyone. I do not know if I could have had IMRT and I do not want to sound like I feel my RO didn't do a good job. In fact I think he did an outstanding job. Just the same, I wish I knew then what I know now. That is the kind of advocacy I hope to provide others.

Minnie, See the M.D. Anderson study published in Int. J. Radiation oncology Biol. Phys., Vol. 59, No. 1, pp. 43-50, 2004, entitled "Intensity-Modulated Radiation Therapy for Orophayngeal Carcinoma: Impact of Tumor Volume" By Chao, et al.

It states that only a few reports benchmarking the treatment outcome of H&N cancers (using IMRT) have been published. I believe this is the largest study reporting IMRT outcomes using 75 people with cancer of the tonsil, BOT or Soft Palate. It compares the IMRT Disease Free Survival % with 7 older studies done with conventional radiation. The results are impressive in comparison especially when comparing the combination of surgery and IMRT (Stage IV DFS of 92%). (A mix of patients getting either surgery/IMRT or just IMRT gave a Stage IV DFS of 73% and Stage III DFS of 90%.) This study showed tumor volume to be of significance. It breaks down the results in numerous ways and provides information about the IMRT target volume determination guidelines.

I haven't been able to locate any other large studies specifically about IMRT treatment outcomes.

Mark, your last paragraph impresses me a lot since this is exactly my experience. My family have actually asked me to lodge a complaint to the Hospital Authority because I was not told that there was a better option available at my time of treatment to reduce the side effect. If I did that, my oncologist would be involved and I really don't want to bring him troubles since he has always been a very caring and supportive doctor. Moreover, I have learnt to cope with the side effects these years. Although I choose to retire early from my teaching job, it is the work stress rather than the side effect that causes my decision.

Karen

Mark and Gary, wonderful postings as usual, full of knowledge.

cclark, thank you for the link, it was good reading.

I am beginning to wonder now if I had 3D conformal radiation. What makes me believe this is that they spared salivary glands on my good side. Can that be done with XRT?? Also, I received less radiation on my "good side" then the cancerous side. Every day they would make lines on my neck, and there was a literal map drawn on my mask. The techs would change the machine alot. Guess I need to ask just what kind I had. I do know it was not IMRT.
Minnie

Minnie,
the difference between XRT and IMRT is similar to the difference between a shotgun and a sniper bullet, with XRT being the shotgun approach.

The techs will use beam blocking and shadow trays to protect sensitive areas such as the spinal chord. From your description it sounds like you had XRT.

We can talk about the merits and demerits of both but it must be emphasized that you must be a suitable candiate for IMRT according to your medical team.

Thanks Gary,
So there is no difference between 3D conformal and XRT?

Hi all --

Doing some research for meeting tomorrow with RO and (hopefully the rad physicist as well as I wanted to ask him some questions for this forum.)

I did come up with three interesting and pertinent papers presented at the last ASTRO meeting (2004) which compare IMRT to conventional RT, and also, IMRT to tomotherapy.

Jabbari, S. et al. Xerostomia and quality of life (QOL) after parotid-sparing IMRT for head and neck (HN) cancer: A matched case-control comparison with standard radiotherapy (RT). Authors concluded that xerostomia and QOL worsened shortly after sompletion of therapy in all patiants. Patients receiving standard RT did not report any improvement during the first year after therapy. In contrast patients matched in clinical factors (prior to treatment) reported significant improvement over time in both XQ and QOL.

Pacholke, H. et al. Xerostomia quality of life in head and neck cancer patients who are beyond the acute recovery phase following radiotherapy: IMRT versus conventional radiotherapy. The authors looked at 5 groups of patients who were more than 1 year out of therapy, grouped by the extent to which the radiotherapy impinged on the parotid glands. They concluded that IMRT improves quality of life compared to conventional RT in all groups.

Harari, P. et al. Refining target coverage and normal tissue avoidance with helical tomotherapy vs. Linac-based IMRT for oropharyngeal cancer. 20 patients had treatment plans drawn up for both IMRT and tomotherapy and the results (dosage to primary and subclinical targets and to normal tissues) compared. All treatment plans met prescribed doses. The helical tomotherapy delivered somewhat more dose to targets (4%) and significantly less to normal tissues of parotid gland, spinal cord and oral cavity (up to 50% less). Tomotherapy offered a significantly larger number of projections (up to 1000) over the 7 beams from conventional IMRT. The authors have another study underway evaluating functional outcome and QOL in patients receiving tomo vs. conventional IMRT.

Anyway, will try to get to our RP and ask him what he thinks about these issue...

Gail

Minnie that is not what I said at all.

There is very little difference between 3D conformal and IMRT.

I went back and re-read the second paragraph and see my mistake. I understand now.

As you all know I talk with doctors daily about treatments and what is coming down the pike. I will also be at the upcoming Astro Meeting in Colorado. There is little question that IMRT is a leap ahead. I have posted on it here twice in detail, and if you want the total answer you need to search for those postings, because I don't have time to do this in full again right now. RO's now need to know anatomy as well as a surgeon, they didn't in the past. Mapping the radiation isn't as simple as lead blocking was. There is going to be a period where they get up to speed on the technology. The machine doesn't do everything - the RO still has to tell it what to do. This reminds me of a friend who now thinks he's a graphic designer because he can use the stock tools in Photoshop to put in drop shadows in his images etc.... just because you have a powerful tool doesn't mean that you can use it properly. I call him a monkey with a shotgun. He's got a powerful design tool but with no basis for knowing how to use the tool properly he may be only partially effective in doing so. His advertisements still look like crap and he hasn't mastered the subtleties of the program.

I want to know that my RO has done a ton of cases with IMRT. He is the artist that is going to paint the area with radiation and determine what vital structures are going to be missed, what amount of radiation a particular pathway or areas is going to get and for how long, from what angle, etc. Given this tool he could just as easily UNDER paint areas that, even though near vital structures and things that effect QOL like the parotids, he may actually need to nuke them more to get rid of something that is hiding there in an occult fashion. (Eliminating some of the positive QOL issues in the process but getting all the disease.) It isn't black and white, and the way all of you talk about it, it would appear that you think so. This is a thousand shades of gray. The use of IMRT properly is a judgment call as much art as technology, and there are no absolutes or Cliff's Notes for this. Our OCF Board member Dr. Kian Ang, the head radiation doctor at MDACC used IMRT selectively on patients for over a year before he felt that he mastered all the nuances, and was actually SEEING the results he expected before he began to use it widely in the hospital. This is a guy that holds the Fletcher chair in radiation at the best of the best institution. That has to tell you something.

When I see that the 2, 5, and 7 year data in survival from IMRT is as good as we all hope that it is going to be, while sparing the QOL structures, I'll be the first to jump up and down. You can read all the studies that are out there. Is it for everyone right now? I hope after reading this you don't think so. Is it a better technology? You betcha. That doesn't mean the results of that study you are reading are going to apply to your doctor, your institution, or in particular -YOU. A doctor of lesser skills or judgment in an institution of lesser end results, using the same technology on a patient isn't going to get the same result as the best of the best using it. It isn't just about the technology...

Hi --

Fially caught up with the radiation physicist at Hopkins. The questions I asked him were:

1) What percent of head and neck cancer patients receiving radiation are getting the tomotherapy machine, how many conventional IMRT and how many the older external beam therapy?

a) Virtually all their patients are now on the tomotherapy machine -- a small proportion of nasopharyngeal patients and some in certain clinical trials for which it is the protocol are getting conventional IMRT. None are getting the older external beam therapy that he is aware of, although they might use it in a palliative rather than curative setting. He opined that the severe xerostomia resulting from this treatment is a serious issue.

2) What does he think the advantages of IMRT (and tomo-IMRT) are, besides QOL issues?

a) First, he said they are treating the cancer just as effectively with these technologies as with the older ones -- similar rates of response etc. if not better. He said they are getting data that shows excellent dose to target and less to non-target areas. However he did say that the results are not yet in from a large ECOG study which compares the technologies -- clinical results as well as QOL.

He got called away for a consult but is willing to talk about this so I will try to get more details on the ECOG study at a later date as this is central to everyone's concerns.

Gail

Thanks Gail. I would love to hear the details on the ECOG study.

What a huge difference between the treatment protocol at Moffitt and John Hopkins. Then when I read Brian's comments, it makes me hope that our R.O. was experienced enough to have the 'art' of IMRT down. As I noted in the thread above, we were told last March that Moffitt primarily uses IMRT for patients who did not undergo surgery. They just use conventional radiation for H&N patients who also had pre-radiation surgery. This never made any sense to me, but it is what we were told. It would also mean that they don't have a lot of experience using IMRT for patients who have already had the primary tumor and affected lymph nodes removed through surgery.

As a Moffitt patient who had surgery, Jerry only got IMRT because we learned about it ourselves and specifically requested it. Jerry ended up with a soft tissue injury at the surgery site where he got too much radiation. I wonder now if this is common or an example of not enough experience with the technology.

Thanks again for the information you provide. I find it really helpful.

Connie