Hi, I'm Nelie.

A month ago I was diagnosed with tongue cancer on the left side of my tongue. I had excision of the tumor and a neck dissection and all the nodes were clean. So my cancer is T2,N0,M0. Wednesday I found out that the ENT surgeon didn't get good margins all around so he needs to do a little more surgery on the tongue. I am already having some difficulty speaking (mainly making a clear "s") and chewing/swallowing and I'm hoping this additional surgery won't make that worse.

Two days after the biopsy results that showed I had tongue cancer, I went in for a regularly scheduled mammogram and was told there was a small mass that needed a biopsy. To make a long story short, I had the biopsy right before my excision/neck dissection surgery last week and found out Monday it turns out I also have breast cancer. The breast cancer is totally unrelated to the tongue cancer but is kind of like being hit twice by lightning and is making me wonder if we have carcinogens in our home. I don't smoke, (I quit nine years ago), and rarely drink and eat a pretty healthy diet.

The good news is the breast cancer is most likely stage 1 (judging by size, they won't know for sure until the node(s) are removed)and is at the low end of the scale for aggressiveness so I'm electing to have a lumpectomy and sentinal node removal followed by radiation. The tongue surgeon and the breast surgeon agreed to coordinate so this can be the same operation as the additional tongue excision. I am having all that a week from today. Then more healing and then radiation, at least for the breast.

But there seems to be disagreement between my surgeon and the radiation oncologist about whether I need radiation for my oral cancer. Apparently at the tumor board meeting, the radiation oncologist at the hospital here said he didn't think I needed radiation since the neck nodes were all clean. But my ENT surgeon thinks I should get another opinion. He said there was some neural involvement with the tumor and he is especially concerned about that being an indicator of a higher likelihood of reoccurence. So I am just starting to look into getting a second opinion and reading posts here about this.

I am young, 46, and would like to live to a much older age but I also teach for a living and I fear permanent drymouth would derail my career in a major way. I'm willing to risk it, though, if it seems that the radiation would really up my chances of survival. Am I right in thinking, from what I read in the FAQ here, that there is no clear research on this? Especially for stage II?

And then there's the issue of getting radiation for two parts of my body at once --breast and mouth--although apparently everyone at our hosptial is agreed they can do this. The hosptial just got IMRt tradiation and I am curious about whether that helps with any of the side effects of radiation, especially drymouth.

Nelie,

I'm so sorry to hear about your diagnosis -- one form of cancer is plenty, but two at the same time is more than any of us would want to contemplate. I also had Stage II tongue cancer on the left side (at age 39) with no lymph node involvement. While my surgical team got clean margins, the tumor was poorly differentiated, so the head and neck oncologists who were consulted felt radiation was necessary. Unfortunately, oral cancer can become aggressive and in many cases needs to be attacked forcefully from the start to increase the prospects for long-term survival.

You didn't mention whether you're being treated at a major cancer center (the NCI-approved ones are listed on this site under Other Resources -- it looks like the closest one to you may be in Buffalo). I would strongly urge that you get a second opinion from one of these centers, especially in light of the two types of cancer you're confronted with.

When I was treated, IMRT wasn't available, and even if it had been, I probably wouldn't have been a candidate for it because of the poor differentiation of my tumor. I had general field radiation and have had some chronic dry mouth problems over the years that I've coped with through a combination of bottled water, non-alcoholic mouthwashes like Biotene, and medication. I also work in a business that requires quite a bit of speaking (although probably not as much as teaching), and I sing practically every week in a choir, so I have a lot of motivation to minimize the dry mouth effects. Many others here have had IMRT and have had fewer long-term problems with dry mouth.

Please feel free to check back here often and ask as many questions as you want. You will generally find plenty of others who have gone through something similar to what you're facing and want to help.

Cathy

Hi Cathy,

Thank you so much for your reply! In answer to some of your questions, My local hospital (Cayuga Medical) has a brand new (opened about 5 days before I was diagnosed) cancer treatment center, with IMRT, that is affiliated with Roswell Park in Buffalo, NY ( a cencer center on the NCI list). But its a brand new affiliation and I'm not sure how much the folks at Roswell Park are actively involved in decisions about cases locally, I suspect they may be still working some of that out.

So I am thinking of requesting a second opinion from Dana Farber in Boston. I have family and friends in Boston so I can travel and stay there if necessary. Actually, I am probably going to fill out their request for a second opinion form this weekend. I'm also going to try to get some clarity on whether the people at Roswell Park have given any input to my radiation oncologist's decision or whether I can ask that they be consulted as well.

I'm a little concerned since I started reading here that radiation would be on both sides of the head and neck, how that might overlap the radiation for my breast. I know the breast surgeon was assuming if I had radiation for the mouth it would be the opposite side (cancer is in right breast) and I know after that, when the tumor board at the hosptial met, the consensus was they could do both at the same time. But I know that through my ENT, I haven't talked to the radiation oncologist directly. I think I need to talk with him directly about why he thinks radiation isn't necessary and also clarify how it would work if the head and neck radiation was on both sides. Another appoitnemnt to make in between the speech therapist and the dentist and the cancer counselor and the second opinion information....

I am overjoyed to read you sing in a choir. That brought tears to my eyes. I joined a wonderful community chorus a year ago that brought such joy to my life up until January, when I was diagnosed (the first rehearsal of the year was scheduled for the next week) and I have been quietly grieving the loss of that, thinking I would never be able to sing again. You've given me some real hope.

Have you posted more information about your experience with radiation therapy and drymouth elsewhere? I have so many quesitons about it. Did you have to lose any teeth before the radiation? Has the drymouth caused dental problems since? If you've already answered these questions elsehwere, maybe you could just point me there...

I feel so glad to have found this place. I am going to a breast cancer support group that's local but truly the big issues for me right now are the ones connected to the oral cancer, which is much more scary and aggressive.

Oh--my cancer, at the time of the initial biopsy (over a month ago), was moderately differentiated. I guess I need to ask the ENT surgeon whether that has changed from when they did the last surgery.
Nelie

Hi Nelie; You are certainly dealing with a lot for one person at one time, The strange thing is though, somehow we get on with it..we fight and fight some more, and as you may have found out from this forum, there are a lot of people who fight and WIN.
It has been wonderful for me to hear about those winners, it just sends the bravery meter soaring.
I do know a young man in Western Canada who had oral cancer, surgery/rads and the inevitable dry-mouth..but he's back to work teaching, sipping and talking to beat the band. Apparently if he leaves his bottle behind the kids are quite pleased to help out by running it over to him wherever he is at the moment. They have bought into his successful recovery as well. Help seems to just come from all over the place.
All the best on your treatment journey. I will watch for your news on the boards.
Cheers, Fran

Nelie, welcome to the site. Sorry you had to find us, but we'll try to help as much as possible. Having to deal with two cancers at the same time will be difficult, but you seem to have a very good attitude and that is a very big plus. Attitude will definitely affect the outcome of your treatment. So stay positive.

I had IMRT rad to both sides of my neck as well as to the center, the bed of the ex-tonsils I used to have which is where the primary site was. My dry mouth issues are well taken care of with a bottle of water and some of the folks on this site don't even need that. The effects are different on each of us. You may be one of the lucky ones that have little post rad difficulties with dry mouth. There are many products available to help with it.

As far as singing goes, I can testify to the fact that rad does not help with singing. I couldn't carry a tune with a bucket before rad and nothing got better, I still can't sing, darn.

I had problems before treatment with dental and periodontal issues, two teeth were removed prior to treatment, and am now working on repairing the damage as well as some other things. So far, no issues have come up relating to post treatment problems, but its early and I'll have to see what happens. No matter, the alternative is not good, so dental problems or not, the rad treatment is very important and side effects will just have to be dealt with.

My original site had metastasized to the lymph node on my right side. So I had a tonsilectomy that found the original tumor, 35 rad/3 chemo, and a modified radical right neck dissection. So far, all of the cancer is gone and no recurrance. So hang in there. IMRT, by the way, is much easier on the salivary glands than full field rad. The med team can aim the rad to the right places without bombarding the local area. Good luck and please keep us posted.

Nelie,

My treatment was coordinated through Dana Farber -- before I had any surgery or radiation, I had several consultations with the head and neck cancer team there, and they also set up my radiation plan. Since you have family/friends in this area, I'd encourage you to go ahead and try D-F for a second opinion.

My teeth were in good condition before I started radiation, and the consensus of my cancer team was that they could all stay in (and I still have them all). For some time now, I've been on a teeth-cleaning schedule of every 2-3 months, checkups with a periodontist at least twice a year, and extra careful brushing and flossing all the time. I've been fortunate that, aside from an occasional crown or filling, I haven't ended up with any major dental problems since then.

As most of us here can tell you, radiation to the head and neck area is no picnic, to say the least. If you do need it, we can give you many suggestions for coping with the effects and we're here to offer support. Also, feel free to send me a private e-mail if you have specific questions you want to discuss.

Cathy

It's amazing how much more confident and less fearful I feel about facing radiation after reading all of your posts. Thank God this forum exists. I am sending my husband the url and hoping he will be able to get some support here as a caregiver as well.

Cathy, Thanks for the encouragement about Dana-Farber. They now have a form on the web you can fill out to request a second opinion which I am going to fill out this weekend.

I now wish I had requested an opinion immediately except I was still reeling from the news and dealing with the possibility (then) of breast cancer and trying to hand over all my classes and other responsibilites at work to other people without dropping any balls and it seemed so urgent to get the initial surgery done and get the cancer out of there.

I teach at a community college, by the way, so I don't need my voice each day to the same degree an elementary shcool or high school teacher might. But most days I am in the calssroom for 2 and 1/2 to 3 hours each day. I also can teach classes online, if need be, but I really would hate it if those were the only classes I taught.

I have managed to keep a toehold in normal life because I was already teaching one online class this semester when I got the cancer diagnosis (two days after the semester started) and I'm hoping I can keep doing that for the rest of the semester from home or whereever I am for treatment. But I have a colleague who will take over if the treatment gets too nasty for even that to be possible.

Kirk, Your joke about radiation not helping you sing gave me a good laugh! Thanks for that. Good laughs are definitely appreciated these days.

By the way. although I am a community college teacher, I'm a terrible typist and a dyslexic reader so I hope you'll forgive my typos....

Nelie: I just wanted to share a bit of history with you, about breast cancer. My grandmother had breast cancer in the 1940s, before I was born. She had a full mastectomy (the tx then). One of her sisters also had breast cancer. My mother always told us to be on our best behavior when she visited because this might be our last visit with our grandmother (she lived in Oregon, we lived in California). My grandmother outlived my mother and half of her(my grandmother's) children. She died of old age in her mid 90s. Breast cancer is beatable. Oral cancer is too, but it is more of a challenge. Good luck!! - Candace

Nelie, I may give you further encouragement because I am a school teacher too! When I lost my voice after treatment, I also had the greatest fear that I wouldn't be able to teach again but I was wrong! I resumed teaching 7 months post treatment and despite some changes to my voice, strangers would never notice that I had cancer treatment. I have taught for about 3 years after my illness already and I manage to speak clearly with a few sips of water in every lesson. I depend a lot on sugar free candies and chewing gums which help to give me some moisture in the mouth. Without them, my voice would go very raspy. Of course I have to use a mic in the classroom but all my colleagues need one too because the class size is very big compared to yours. It can be as large as 40 students in one class.As about singing, if I want to sing in a group, I can but the best time singing is while I am in a bath! I didn't have healthy teeth before treatment but I managed to keep them all and I still have all my teeth now and my dental health is even better than before.
I didn't have IMRT and so mouth dryness is the most frustrating side effect I have so far. Since my tonsil cancer was at a stage 4B (T2N3M0), I had radiation to both sides of my neck. I just had chemo and radiation but no surgery. I understand all your fear and worry because I had been there before. Be positive and I am sure you will enjoy your "new normal" when the nightmare is over. Ask any questions on this forum and I am sure you will get them answered by knowledgeable and supportive members.

Karen.

Thanks for that further encouragement Karen.

Ok, here's my first question. Cathy, you emntioned you might not have been a candidate for IMRT because your cacner was poorly differentiated. I thought I had some idea of how IMRT worked and differed from general field radiation but I don't have any clue how that relates to the differentiation of the cancer. And although I have some clue about how differentiation relates to how aggressive the cancer is, I guess I'm not really all that clear about what it means in general.

I've been doing a lot of other reading here about people's experience of radiation therapy. It sounds hellish but I'm convinced I can get through it if the opinion is that it will help my chances of survival.

Nelie,

There's a fairly useful dictionary on the National Cancer Institute site (www.cancer.gov) that covers many of the standard terms related to cancer diagnosis and treatment. I've copied its language about differentiation here:

"In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably."

IMRT is designed to target the most powerful radiation on specific locations and is particularly suitable for tumors that are well-differentiated. By targeting in this way, it can spare the surrounding areas better than field radiation and in many cases lessen the long-term dry mouth effects. My understanding is that, because of the more unpredictable nature (and potential aggressiveness) of tumors that are poorly differentiated, IMRT can be less effective with them, as there is a greater likelihood that it will miss some cancerous cells.

Cathy

Cethy, Thank you for that. So are there four levels of differentiation then (undifferentiated, poorly differentiated, moderately differentiated and well differentiated)? My breast biopsy, for example, indicated well differentiated cells but my tongue biopsy indicates moderate differentiation).

Are all the cells in a tumor going to have the same level?

Nelie,
"Moderately well differentiated" means that the cancer is pretty much contained in one area. That should make you should be a candidate for IMRT. Another clue on your chart is whether the cancer is "focally invasive", that is also an indicator that the cancer is contained. Like Kirk I had a right tonsil cancer and they radiated both sides as a precaution. I have made a pretty decent recovery from the treatment and other than not being able to sing as high as I used too, still sing lead vocals in a band. I even forget a water bottle from time to time but I always had one around before the cancer. It did take a little while to make a full recovery - over a year. But we are all different and you may not have as bad a side effects as I did.

Thanks Gary. The pathology report for my tongue biopsy diesn't say "moderately well differentiated", it just says "moderately differentiated". Is that the same thing? It also doesn't say "focally invasive". Actually, it says "invasive (see comment)" and then there is no comment (I guess I'm going to have to ask about that when I get this info. sent to whereever I'm getting a second opinion).

I just wanted to update everyone who was so helpful here. I filled out the form to request a second opinion from Dana Farber and heard from them yesterday that they would at least be able to get me in for a consultation with a radiation oncologist there, hopefully a dentist, and possibly their entire head and neck team about whether I need radiation and issues regarding radiation of two different sites (breast and oral) at once.

The new patient coordinator from Farber was very helpful in explaining what I needed to get sent and I was able to get most of it sent yesterday after I spoke to him, although I did have to drive to the two surgeons offices to sign forms releasing the information. The only thing I think i have left to get are the images, which he said I could carry with me when I come.

It's amazing the charge that gave me--finding out I would get the second opinion from there and getting everything sent off. I guess it's that thing abut having so much be incontrollable right now but here is an important thing I *can* control.

I still have my moments of being terrified of the radiation, if I have to have it. And then I have moments, thanks to this site, and all of you who answered my initla post here, of thinking that it will be hell but a hell I know I can get through.

Radiation sucks and it will be burdensome and tedious but it is not worthy of being terrified over. It is the thing that will save your life.

I would ask them to explain the reading a little bit better - or wait until you go to Dana Farber.

Congrats on getting into Dana Farber.

"I would ask them to explain the reading a little bit better "

Yes, I have a call in to my ENT because I have a bunch of questions for him. One of them is about that pathology report; mainly, does he understand specifically what it means or dies he think it's related to whether or not I should have radiation? When he first examined me and gave me a tentative stage II the only thing I remember him saying about the pathology report is "most squamous cell carcinomas are moderately differentiated" as though it wasn't very informative. He had the same comment for the "invasive" part.

"Focal": means limited to a specific area.

"differentiation": In cancer, refers to how mature (developed) the cancer cells are in a tumor. Differentiated tumor cells resemble normal cells and tend to grow and spread at a slower rate than undifferentiated or poorly differentiated tumor cells, which lack the structure and function of normal cells and grow uncontrollably.

Here is a resource for cancer terms: http://www.cancer.gov/dictionary/

Tongue cancers can be pretty aggressive, I would be suspicious if they didn't recommend radiation -even in a stage II.

I found it essential to have a good note taker throughout all of this.

I had a conversation on the phone with my ENT after my last post here yesterday and it's clear I need to talk to the rad. oncologist here who said he didn't think I needed radiation. It turns out he did get opinions from the oral cancer team at Roswell Park in Buffalo (one of the NCI cancer centers). I think I mentioned that our hospital's cancer treatment center is affiliated with them.

Anyway, it turns out the opinions on my case at Roswell Park were 50% in favor of radiation and 50% against, which kind of confirms the sense I've gotten reading here about people with Stage II Tongue cancer that some have had radiation and some haven't. If I'm wrong on that take, or if more of those folks who didn't get it later had reoccurences, I'd be interested in hearing from people here about that.

My ENT said I should ask about pros and cons when I get to Farber no matter what the rad.oncologist recommends. I should ask about whether they have collected data showing less likelihood of reoccurence in Stage II. I should also ask, regardless of what is recommended, if that is based on a protocol they have that they use with everyone and if there is research supporting that protocol.

I don't intend to make my decision based on my fear of the treatment. Thanks to reading here,I can see people survive the treatment and eventually can even sing again. But I am concerned that radiation is this big gun you get to use once and if I use it now and then have a recooccurence in some inoperable place, I'm really SOL, right?

I understand a recoourence is bad news and so the argument can be made that one should do absolutely everything to get it the first time. But I guess I have enough of the empiricist in me (a Ph.D. in experimental psychology) that I want to know that radiation by itself improves the odds of not having a reoccurence. Because otherwise, it seems like it would be better to keep it as a possible treatment for IF a reoccurence should happen.

Am I asking about this in the right place here? Perhaps I should take this discussion to the area for discussing treatment?

Nelie

Nelie,
You raise very good questions and only you can ulitmately decide on your plan. My oncologist basically told me it was up to me what tools I wanted them to use in the arsenal. Now my cancer was more advanced than yours but it was well contained and there was no lymph node involvement. It was also a polyp type of tumor which further made it easier to treat. Stage II you are on the fence as you already know (and have been informed from your medical team). It's all about the risk/benefit and what statistical odds will additional treatment obtain for you.

Many here would suggest hitting now with all you've got. Waiting until a recurrence happens (if it does happen) can have disastrous results.

The problem that must considered is that chemo doesn't have a great impact on head & neck cancers by itself. So in the case of a multi-modality treatment such as surgery and chemo, most of the benefit would be from the surgery. In the case of radiation and chemo there is a adjunctive and synergistic effect in which the chemo can actually add as much as 13-16% to your 5 year survival odds which is a considerable number.

Then there are the risks from radiation. Aren't you glad you asked?!?!? The advantage of going to the CCC is that they have seen many cases like yours and have a good feeling about what works from experience. Your doctors seem to be right in line with giving you sound advice.

Gary, Yes, my doctors here are giving me good advice--they just differ (the surgeon and the radiation oncologist)in what they think I should probably do--and they both respect that it is my final decision.

I just talked to the radiation oncologist (who is the one who thinks I should hold off on radiation for my mouth)here and he gave me a good overview of the pros and cons of having radiation for the mouth at this stage. He was really helpful (including in telling me there is no good information on how much radiation with stage 2 SCC lowers the risk of reoccurence). He did give me an example of a case he has seen where surgery was used with no radiation and there were multiple recoocurences (but the first was many years after the primary tumor had been excised) which he thinks would have happened even had radiation been given (he called this a "field effect"). Becuase radiation was not given at first though, the radiation could be used more effectively with chemo to treat the reoccurences. So this is an example of when keeping the radiation as ammunition in reserve, he thought, led to a better outcome.

Is this the RO at Dana Farber?

Here is a link to the NCCN oncology practice guidelines for head & neck cancer. Page OR-2 defines the recommended treatment protocols. This should give you some more questions to ask.

http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

Thanks for that link, Gary. Very helpful.

heh. Actually it looks like "adjuvant radiation *optional*" is the treatment protocol in my case, and even for when there is one lymph node involved (I had none). Except that my pathology report from the first excision did mention some possible indication of perineural involvement (but not "invasion". I'm glad DF got sent the pathology slides.)

Gary, does "RO" mean the protocol? If so, I don't know what it is at Dana Farber. Obviously there isn't one protocol for what to do in a case like this at Roswell Park. What I really want to know, if Dana Farber recommends it, is *why*. Beyond whether it is their protocol.

"RO" is an abbreviation for Radiation Oncologist.

If it were me, I would place most of my faith in the CCC. Once again they have the most experience. At stage 1-2 a "door number 1" - "door number 2" choice. Once again, not trying to scare you but, tongue cancers can be more aggressive. Hopefully you'll be armed with all of the good questions by the time you go to Dana Farber.

I had to choose between a 14 hour surgery and radiation or Chemo and radiation. Statistically, the outcome was actually a little higher with the latter protocol. With my late staging, radiation wasn't an option.

Oh! Sorry I didn't get "RO" (feeling silly)

The radiation oncologist I've talked to already is at my local hospital but he actually was hired by, is on the staff at, and works in consultation with, Roswell Park in Buffalo, which our local hospitals cancer/radiation facility is now affiliated with. Roswell Park is one of the comprehensive Cancer Centers on the NCI list. It was other people on the oral cancer team at Roswell Park that he consulted with who were split 50/50 about whether I needed radiation.

So actually after going to Dana Farber I really will have some kind of feedback from two CCCs.