I was diagnosed with stage 1 oral cancer back in June. Cancer was on back left side of tongue. Got pet scan, nodes looked ok. Did surgery, dr able to get clean margin, did modified lymph node disection.

Started radiation beginning of Oct. They are doing sall dos of radiation because there was evidence of perinural invasion.

Couple of questions:

I am scheduled for 5 dys a week, 7 weeks of treatment. Anyone gone with less than that, and what the outcome.

My toungue still feels like pins and needles, normal? If yes, how long after surgery did it take to go away (or does it remain?)

Same question regarding neck scar, real tough shaving. Any advice and does this get beeter over
time.

Anyone gone through radiation without experiencing side affects?


Thanks and God Bless

Tom

The usual treatment schedule for radiation is 33-35 days, for a total of 66-70 Gy (gray), so it sounds as if you are getting about the usual amount. Is it IMRT radiation?

It is almost impossible to get through radiation treatment for oral cancer without side-effects; if fortunate, most will eventually resolve. The Oral Cancer Foundation website has a *wealth* of information on side-effects, from mucositis, thrush, trismus, skin burns, dry mouth etc. and advice on ameliorating or treating these problems. Go to the side-bar and click on "treatment." Also, folks on the forum have lots of good advice based on their own experience.

Gail

not imrt radiation, dr said given the dose of radiation I would be getting no difference between IMRT and radiation treatment I'd be getting

Regards

tom

Whoa! You might question him/her again on that one! Are you being treated at a major cancer center? As far as I can see, IMRT seems to be becoming the standard for head & neck cancers to help salvage spit glands. Get another opinion. I had 37 IMRT treatments & as far as side effects, there is no avoiding them. The good news is they are mostly temporary. That being said however, XRT radiation will permanently affect your spit glands as anyone here that had that type of rad can tell you. As far as all your other symptoms, they seem pretty normal. Shaving? After a while you won't have to shave because the whiskers will stop growing & start falling out. A nice clean shave! The beard does come back mostly. Not trying to scare you but, I have recovered almost all of my saliva production to date & most here who wer'e treated with IMRT have had the same experience. Keep us posted, Erik

Hello Tom.

Welcome to the Oral Cancer Foundation! You won't find a more informative site on the web for this diaease.
I received 33 treatments of IMRT radiation eight weeks after surgery for a stage 4, poorly differentated SSC tumor on my right tonsil. (stage 4) I had a pech flap.
I was one of the lucky ones that had almost no side efects others have experienced from IMRT. I was tired more than normal but I think I would have been anyway. Going thru a 17 hour operation will do that.
At times I wondered if the maxhine was on? No burns, thrush, mouth sores, nothing at all!!
Hoping you can sail through like I did. There is plenty of info if you use the search engine at the top of the page. You want to have all needed
meds and supplies ahead of time if you suffer alot of side effects.

All My Best, Danny Boy

Hi Tom, I'm a stage II tongue cancer survivor who also had perineural invasion and thus radiation (and in my case I chose to have chemo as well to be sure the rad. was as effective as possible). I had IMRT and my understanding is it should help to save most of one big salivary gland--though right now, 4 months out, I'm having pretty severe drymouth (but it can take up to a year for salivation to return). I had 33 days of rad--66 Gy. I think this is pretty standard these days.

This is a great place to get support as you go through rad--everyone's experience of it is different but no one will tell you it's a walk in the park. Nonetheless, it's do-able with the support you'll find here.

Nelie

Thanks for the feedback. I am being treated at Moffit in Tampa.

Regards

Tom

Hi Tom, Yes, there are side effects. I'm 15 years
out from my radiation and chemo. Still having
side effects and Neck pain.
Cathy

Tom --

Our Hopkins radiation oncologist and our radiation physicist both said that there is no advantage to using conventional radiation as they are actually getting better results from IMRT (re cancer control) -- more radiation delivered to target and less to non-target -- and that the dry mouth from conventional radiation is pretty bad. Thus at Hopkins all HNC patients are now on tomo-IMRT or regular IMRT. Having said that, you should ask about using amiphostine to protect parotid (large salivary) glands -- not an easy drug to take but it does work. However I would also ask seriously "why not IMRT" -- assume they have it, Moffit is a large center, and even our local hospitals have it now. My husband had to have his last 3 treatments on conventional radiation (3-D conformal) when tomo-IMRT went down for a week and those three treatments caused more inflammation in front of mouth and tongue than 30 days of tomo-therapy. The radiation tech said a lot of their IMRT patients made the same observation. Fortunately that soreness went away rather quickly (gone now 2 weeks' out) and he is left dealing with the results of 33 days' on the base of tongue and tonsil bed -- primary target area -- but even that is starting to clear up.

One thing we were advised -- by a breast cancer oncology nurse -- is to pre-condition the skin with Biafine and Radicare Gel (obtain these from your hospital) as soon as you know you are having radiation. Both of these product's directions say the same thing, start using before treatment starts. Barry did it for about 2 weeks before and I think it really helped as his skin never got really broken, just slightly reddened like a mild sunburn. Keep using these materials throughout treatment and until skin heals.

You will also need to consult a dentist (who has experience with radiation effects on teeth and jaw) to see if any dental work needs to be done, and to get fluoride trays made which you will use for years if not forever. Ask him about exercises to reduce the risk of trismus.

Again, all of this is on the OCF web site...

Gail

Tom, My husband was also treated at Moffitt and they also tried to give him conventional radiation. We did a lot of research in a very short period of time (about a week was all we had) and discovered that IMRT produced far fewer side effects and we were particularly concerned about the risk of permanent dry mouth. My husband almost jumped ship over to MD Anderson center in Orlando or St. Josephs in Tampa, but the R.O. decided to give him the IMRT treatment so he was treated at Moffitt. At the time, the R.O. told us they only used IMRT for patients who do not have surgery as well. Getting amiphistone at Moffitt is problematic also unless you're signed up in a clinical trial (or at least that is what my husband was told).

Connie

Ok I give up what is "sall dos"? I am not sure about "perinural" either? Did this discovery change your staging?

I don't think anyone has gone through radiation without some side effects (except Danny Boy of course). I had IMRT and the maximum amount possible and have minimal side effects today. Taste, swallowing, and muscle tone are about normal 2 1/2 years post Tx.

Erik, Moffit is a CCC.

Just want to add a "mundane" suggestion. To help with shaving his neck area after the bilateral neck dissection, we bought the best electric razor we could find. It has several small attatchments. After the scar was pretty well healed, John started useing this to get those little prickly hairs that grow close to the scar. He finished 30 IMRT txs July 8th and is still haveing issues with phlem, mucous, thrush etc., but is eating a variety of foods with lots of sauces and gravies. Good luck to you. Amy

I think he means "small dose". And Gail is speaking in absolutes, (which we have agreed not to do here) when she says that Amifostine does work. It does not have beneficial effects in everyone that uses it, and it is poorly tolerated in about 50% of the people who try to use it through their course of treatments. Since OCF is working with the company who manufacturers it on an awareness campaign, I have had a good look a the actual numbers from them. They acknowledge that there are two issues that preclude doctors from even mentioning it to patients (something they would like to over come by having patients ask their physicians about it to begin the dialog) and that is about a 50% effective rate, and a poor tolerance to the side effects. Having said all that, I think that the POTENTIAL benefits are worth trying it to see how well you can tolerate the side effects, since you MAY indeed benefit from it.

I just want to put my vote in that you explore IMRT versus conventional XRT.

IF your condition is compatable with IMRT, everything I've read supports it for pin-pointed accuracy and reduced side-effects.

Just something else to consider while you're making treatment decisions.

Also, I had my surgery first (June/July) and the scars were fine. (Before radiation;) I think if you have a talented surgeon, it will go fine. I was VERY apprehensive about having my surgery (people on here can tell you about my ordeal:), but in retrospect I am glad I had the surgery, and think it's long term negative impact will be minimal.

Tom,

Keep in mind, we are not doctors and DO NOT know the entire siyuation. As you are already a few weeks into your radiation treatments , just run the IMRT thing past your radiation guy to make sure you are on the same page. Not everyone is a candidate for IMRT and, since your doctor went to medical school, he may have good reason for using conventional radiation.

Glenn

The entire discussion about IMRT and XRT at this point is probably academic since I seriously doubt that they would change your treatment plan at this late date since you are well into it, not to mention Glenn's point. Not all H&N cancers are treatable by IMRT. Like Glenn says also, I would run this by your RO so you can feel confident about your treatment plan.

"Small dose" doesn't make sense since they either give you the full standard dose (typically 72 Gy which is hardly small) or they add a several more Gy as a "boost" (81 Gy).

Glenn and Gary --

What HNCs are not treatable by IMRT? I ran this question by two ROs and our radiation physicist and they said -- essentially none -- although RP added that since the planning is a major factor, IMRT poorly planned can be less effective than XRT well-planned. But that the side-effects from the latter can be "severe" (their words, not mine) and at Hopkins they are getting better results with IMRT (this is with concurrent chemo) re cancer control in any case. More dose to the target is what RP said. Our MO confirmed that since they have started using IMRT/concurrent chemo they are getting improved results even with Stage IV cancers, with fewer long-term side effects.

This is not to say that XRT will not be effective or that it does not have a place. But it does indicate that one should explore all (and ask hard questions) this before starting treatment.

Gail

Gary, I'm not by anymeans an expert on this but-- perineural invasion doesn't affect your stage at all--which is one reason why just looking at things by stage alone is misleading. It comes from looking at the pathology of the tumor itself--were there any nerves involved--if so, you have perineural invasion.

Since I have it, and it's the main reason why rad. and chemo were recommended to me, I did some reading up on perineural invasion and it is a significant predictor of cancer recurrence. In one study, it was the most significant predictor, stage being distinctly secondary. BUT this too is somewhat misleading (and I'm glad I had enough statistical knwoeldge to know this) because stage and perineural invasion are correlated--its rare to find it at stage I and more common at more advanced stages. So if it's entered as a predictor into a regression equation first, it can look like it's the big predictor but really that's because stage is really in there too.

Anyway, I know that's kind of a technical answer and I know we have to be careful with statisitcs here but I felt they were soemwhat necessary to answer this. I hope I amde it clear they have to be trated with caution as well.

But it's the one reason why I had aggressive treatment even though my nodes were clean.

I was initially, and continue being treated at MSKCC in NYC. They are one of the top CCC's in the world. I had a very unusual cancer, adenosquamous cell. It was, and I guess continues to be very aggressive. To bring it down to basic terms, they felt my best chances were a complete blast of the entire area. I was treated over 3 years ago and chemo/radiation was not the gold standard for tonsil cancer. MSKCC, I'm sure, can map out a proper IMRT plan but they felt I was better off with 3D conformal. I would add, I ate by mouth during my entire treatment, which included a mandible resection and 7 weeks of radiation and was completely back to a full diet within 3 weeks. The problem here is that you, as a scientist, speak in absolutes based on your research. I speak on direct personal knowledge. I have learned that there are no absolutes in cancer treatment and for the people at Hopkins to suggest that there are is ridiculous. You suggest to a member, well into his treatment, that he is not getting the proper treatment. I suggested that he just make sure he and his doctor are on the same page. In your brief period on this board you have caused countless people to question their treatment choices and I for one am tired of it. Including Danny and myself there are only a handful of us that know, firsthand, how unforgiving this cancer can be. Personally, I think you would be of better service talking from the position of a caregiver and leave the scientific discussions for breakfast with Barry. As I have stated before, and I'm sure you'll agree, I am not the brightest bulb here so I guess you should take this post with a grain of salt.

Glenn

Hi Gail,
Just curious. How do they treat an unknown primary at Hopkins which is what I had the first go round. I had 36 conventional XRT treatments. but that was 1997. If they have nothing particular to aim at, do they still use the IMRT?

Take care,
Eileen

I think that any of you who are suggesting that once a person and his doctor are off on a course of treatment, in this case conventional radiation, that you are not helping here and doing a disservice to the original poster by suggesting that MIDSTREAM he approach his doctor with the opinions of a bunch of lay people who do not know his individual situation or his doctors thought process, to change his course of treatment. When did you guys get your MD's? I must have missed that part. This creates doubts that are not necessary at this point in the patients mind. What are you people thinking?????

You want to suggest BEFORE someone enters treatment that he ask his doctors about IMRT and the benefits in HIS case, do so. But what is going on here is off base, and if any of you thought about what you are creating in this person's emotional state with new potential doubts, you would realize that it is potentially damaging.

As was mentioned he is at a CCC. Maybe some of you might consider that given the little information you have to work with about this patient, his doctors, his condition, and any reasoning behind the decision making, that he is at a qualified CCC, that you don't have enough information to work with. Our purpose here is to offer help. That help is based on our own UNIQUE experiences, and those damn sure do not apply universally to every other cancer patient out there. Suggesting , by inference to your own high end experiences, that he may not be getting the BEST treatment out there is just BS.

Gail if you have be assigned a radiation physicist, I would like you to email me his name. I would like to have a discussion with him/ her.

Gail (and Tom) ,

I believe Tom is like me. His cancer was not base of tongue, it was on the oral tongue, and he had surgery of the tumor, with clean margins, BEFORE radiation and he has no cancer in his nodes. What this means is that *there IS NO TARGET* in the same sense that there is for stage III or IV BOT cancer that has not been operated on. So the fact the IMRT and Tomo can deliver more radition to a target is not of such clear significance here as you seem to think.

Although I had IMRT (it was the only game in town basically), I can easily see why general field radiation, such as Tom is being given, might be thought to be more effective under the circumstances. Especially since my impression is there's still not a lot known about the pathways by which cancer might spread along nerves--which is the issue of particular concern if, like Tom and me, the tumor showed signs of perineural invasion.

I agree with Brian that this sort of difference is why it's important not to speak in absolutes here and get someone worried about what sort of treatment they are receiving midstream.

I hope I'm not adding to the fray here too much by posting this.

Nelie

Tom said his SCC was "back of tongue" so not sure whether that was at base, or on oral tongue. In any case, Hopkins still uses IMRT or tomo-IMRT for oral tongue cancers, although these will often have had surgery first. The people there currently being treated for this condition are on IMRT (also getting concurrent chemo). There are a number of "unknown primaries with nodal involvement" all getting tomo-IMRT or IMRT -- the target field simply includes all the potential affected areas, according to discussions with these individuals.

I want to add I was not being flippant when I asked for the data which finds XRT superior to IMRT for certain types of HNC. These sorts of comparisons are the way doctors make a decision to move away from an older treatment protocol to a newer one, or stay with the older method because it is superior under certain conditions. This is happening all the time in cancer treatment as advances are made, or -- found not to be so "advanced" as once hoped...so if there is data showing superior results for XRT over IMRT in specific circumstances, preferably a study done at same institution with matched cohorts, this would be very important to know.

I agree with Brian that these sorts of issues must be discussed before treatment decisions are made -- so that everyone is comfortable with their decison and don't feel they've been rushed into something. Midway through is not the time or place to bring up any doubts and I apologize for this, and will cease to post on this subject.

Gail

I feel I need to jump in to re-emphasize that having XRT does not always mean permanent quality-of-life issues. When I had radiation 16 years ago, conventional radiation was my only option (and given my diagnosis, I still think it was probably a good idea). I did have major dry mouth issues for many months afterward, but with a combination of medication and Biotene products, they have lessened substantially over time, to the point where they have relatively little impact on my eating or speaking.

Case in point: Last weekend I was out at dinner with a bunch of my in-laws at a Mexican restaurant where I've been before. I recommended that they all try the stuffed jalapeno peppers that I've come to enjoy. Everyone else at the table said they were much too hot, so I was left to eat all of them by myself!

Cathy

Gail,
I am not a doctor but what I have seen here is that often tumors that are poorly differentiated and invasive are treated more often with XRT.

And I think that you have it backwards, new data would suggest that IMRT may be superior for certain H&N types rather than the other way around. It is unlikely that they would do ongoing efficacy studies for well established treatment methodologies.

IMRT has only been around for 10 years and in relatively common use for about 5. When I got mine in 2003, only the CCC's had it. Now most regional treatment centers have upgraded their LINACs with an MLC (Multileaf Collimator) as well. So the long term data on efficacy of IMRT is still coming in. The same LINAC that produces XRT is also used for 3D conformal and IMRT - it's a matter of the collimation techniques and apparatus.

I questioned my treatment plan pre Tx and got it switched from XRT to IMRT. I am satisified that it was a good choice (for me). Every patient and every tumor is different so what works for me may not be the best thing for you. They did target ptotential areas as well.


Treatment options need to be addressed pre-Tx. It doesn't serve any useful purpose to go into it during Tx other than to ratchet up additional fears and doubts.

Glenn,
3D conformal is very similar to IMRT, in fact, an earlier incarnation of it. Just as tomotherapy is the latest incarnattion of IMRT.

Nelie,
I have heard 18 months mimimun for salivary gland recovery (and my personal experience as well).

Hey Gary,

It is also the same machine used for SRS, I had my SRS in June on the same machine I was treated on in 2003 and 2005.

Glenn

Gary, thanks for that info. It helps me be patient (not my natural strength I'm afraid)!

tom,
i am not an expert but will just pass along my experiences.
i had 30 imrt treatments to a oropharyngeal primary and a fleshy lymphnode that popped up.i had my tonsils out first though as doctors thought this would be my primary. petscan smelled out the oropharynx.
side effects for my part were somewhat minimal. thick mucus hard swallowing and lack of taste during treatments. mucus went away first then taste started to come back as swallowing got better. salty came back quicker and sweets still have a bitter taste that hasn't gone away.
after radiation we agreed i needed a neck dissection. all lymphnodes on left side are gone and all were clear. trees twist easier than my neck did for two weeks. physical therapy is hepling as it has been 34 days since surgery. shaving is a real bear. i don't even try a straight razor right now. and if i don't feel like it,i'll skip a day or two. the electric razor i have is good. if you use a straight razor get your wife or someone else to shave you. good luck with everything and my family will add you to our prayer list. mo