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