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.