Could you briefly describe your cancer and its treatment?

I had squamous cell carcinoma of the upper tongue on the left side. It was stage 2. Just as a (sort of) side note about why my treatment and recovery was not “normal” is that I actually was diagnosed almost simultaneously with two different cancers. Two days after I got the oral cancer diagnosis I went for a routine and previously scheduled mammogram and ended up being diagnosed with Stage 1 breast cancer. The cancers were unrelated (that is, not a single cancer that had spread) and in both cases had not spread to my lymph nodes. I had surgery first for the oral cancer–a partial glossectomy and neck dissection(removal of lymph nodes in the neck on the left side). Then a lumpectomy and sentinal node removal for the breast cancer just a few weeks after that, then 6 weeks of radiation with concurrent chemo (cisplatin) for the oral cancer then a couple of months to recover then radiation for the breast cancer. The breast cancer was early stage and not aggressive and so I didn’t need chemo for it just a lumpectomy and radiation.

From oral cancer diagnosis to the end of breast cancer radiation was a period of about 10 months altogether. I was diagnosed in January 2005 so the combined treatments pretty much took the rest of that year..but the oral cancer treatment alone was done by the end of May, so surgery followed by radiation/chemo took 4 months and lots of people do it in less time than that. Because of getting a second opinion on whether I needed radiation and the breast cancer, there was a couple of months almost between the tongue surgery and the start of radiation. The radiation itself was six weeks. During the oral cancer treatment, I was almost completely off work. For a while I kept the one online class I was teaching but the treatment, especially the chemo and the antinausea and pain drugs made me so woozy I had to turn that over to someone else too. I was able to work part time in the fall during the breast cancer radiation treatment.

Even if I had not had that treatment, just the aftereffects of the oral cancer radiation and chemo had left me very weak and tired still and I don’t know if I could have worked full time even though several months had passed since the end of treatment. This is apparently not uncommon. On the oral cancer internet support groups I have found, most people say it takes at least a year to feel they get their energy back and the treatment of chemo concurrent with radiation leaves you weak for months after.

2. The key question is how does having an oral cancer differ from having other types of cancer? My sense is that the treatment for oral cancers often affect those things that most of us take for granted (swallowing, taste, talking, eating, etc.) One guy told me that eating no longer gave him any pleasure. It was just work.

I think oral cancer, and really any kind of head and neck cancer, differs from other cancers because more critical functions, such as swallowing, speaking and breathing can be affected, certainly are affected during treatment and sometimes permanently. I have to say that my entire experience of the stage 1 breast cancer treatment felt like a piece of cake compared to the oral cancer treatment (although this was no doubt partly because I didn’t have to have a mastectomy or chemo for the breast cancer).

That’s another thing that is different about oral cancer treatment, though, is that chemo is often used concurrently with radiation to help kill off the residual cancer cells (which were actually theoretical in my case after the glossectomy. I’m not sure now whether my cancer would be recommended for chemo/radiation, at the time it was in a gray area but the second opinion I got from Dana Farber was that I should treat it aggressively because although there was no lymph node involvement, there had been a blood vessel and lymph pathway connected to the tumor.).

And the most commonly used chemo, at least at the time I was treated and I think its still in use today, is cisplatin which I was told is one of the most nausea-inducing chemos there is. My chemo nurse, who had been an oncology nurse for decades, told me that cisplatin was one of the few kinds of chemo where she saw patients start to retch practically as soon as it got in their veins (though thankfully by the time I got it, they gave me an arsenal of antinausea meds that kept me, most of the time, from being violently ill–but also the antinuasea meds themselves made me very fuzzy headed.) Also cisplatin, like other forms of chemo, is good at killing off healthy cells too and both my white and red blood cell count dropped badly after the second treatment (I was supposed to have three treatments, one every two weeks, low red and white blood cells meant I had the second one delayed and never got the third at all, again apparently not that uncommon).

On top of the nausea from the cisplatin, radiation at first damages and then kills the salivary glands in your mouth. When I was having treatment, they had a medicine that was supposed to somewhat protect your salivary glands called amifostine (I’m not sure if they still use this). It had to be injected into my port exactly a half hour before radation treatment and no more or the protective effects would wear off but it was EXTREMELY nausea inducing while it was in my system and probably half the time in between the amifostine injection and the radiation treatment I would end up with the dry heaves. I do think it may have somewhat protected some of my salivary glands, though. I stopped taking it the last week of treatment because I was feeling so sick at that point from the chemo and the radiation burn (more on that below) I just couldn’t handle the amifostine too.

Radiation effects when mouth and neck are radiated. Before killing your salivary glands, the radiation damages them and you end up with salivary glands that are constantly producing thick, ropey saliva. In addition, radiation damages everything else in your mouth leaving you with an inner muth burn and throat burn which can include blistering. This effect is much more pronounced if you have concurrent chemo with the radiation, as I did. As a result, many patients during treatment, myself included find it too painful to swallow food. Fortunately I was warned about this at Dana Farber and told I should get a stomach feeding tube so I could get enough nutrition during treatment. Even having that, because of all the nausea from the amifostine and the cisplatin, I lost close to forty pounds in six weeks of treatment. And this kind of weight loss is not uncommon. I was overweight to start with and I consider it lucky that I was. Now my weight is barely within the normal range, bordering on underweight.

Then there is the effect of radiation on your vocal cords. About three weeks into treatment I became unable to speak above a hoarse whisper and for the last two weeks and about a week and 1/2 after treatment I couldn’t make any kind of sound at all. My voice came back gradually and by the fall I was sounding slightly hoarse and had a slight lisp from the tongue surgery but was speaking pretty clearly and normally. This continued up to about 5 years after treatment when “late radiation effects” made their appearance and, due to scarring, gradually altered the flexibility of my tongue and my upper palate (my vocal cords are apparently not so badly off but because I can’t move the rest of my mouth around to create sounds correctly my speech has become very difficult to understand, to the point where I haven’t been able to teach in the classroom for the last three years).–I will get back to this later, I’m getting ahead of myself.

So, this is not exactly “brief” but it gives you the idea of the treatment and the challenges of treatment, which most people run into. Except for one. The radiation mask. To me, this was not that horrible. I’m not claustrophobic (thankfully) and when I was diagnosed I had been a meditator for several years. For some people it’s almost an insurmountable obstacle though because it really does pin you to the radiation table so you can’t move a fraction of an inch and you really feel pinned down–there is pressure from it across your entire head. On top of that, I was always feeling like I was on the edge of throwing up because of the amifostine–though I only had to ask to stop the radiation in its midst once to actually vomit, or try to. But its scary lying flat on your back unable to move your head because the mask has you pinned down wondering if you will throw up. So scary that I recall them prescribing some kind of mild sedative for me before I had even asked. I started out taking the sedative before radiation each day but it made me sleepy on the radiation table, I would drift off then wake up disoriented, sick and pinned down and that was even worse. So I just meditated after that and I got through the mask thing fine.

3. What was your recovery process like?

Here is where I don’t think my experience generalizes all that well because I followed up this treatment with additional radiation treatment for the breast cancer in the fall and it took me probably a year after that second treatment was over to feel like I had anywhere close to my pre-cancer energy back. I say “close to” because I really don’t feel like I ever got my old level of energy back. I get tired much more easily and I seem to be lacking the sort of “reserve energy” I used to have where I could push myself to stay up or work a little longer. I get to a certain point of tiredness now and there is no pushing that will work, I will fall asleep sitting up….

Also, I had bad swallowing problems and the cause of them (a stricture of scar tissue across my esophagus) was not detected in all that timely a manner. I ended up, a year later, going to Dana Farber to have a surgery for that where one surgeon went in through the stomach and the other through the mouth and they cut away the stricture. Unfortunately, in that surgery, which they had done successfully hundreds of times, I had the unlucky claim to fame of being the ONLY one who had my esophagus perforated during the procedure, had a lung collapse and ended up in the hospital on heavy IV antibiotics and pain meds until they inserted an esophageal stent until my esophagus could heal. The stent itself made swallowing hard in the six months it was in and by the time it was out it had been almost two years of not swallowing normally.

It turned out I also had other problems interfering with swallowing including that the radiation appeared to have “worn away” part of my epiglottis and it was also not moving normally to cover my airway when I swallowed. Long story short I could swallow small mouthfuls of liquids because I could do a double swallow that pushed the liquid back so it didn’t end up going down my trachea but I never was able to get back to swallowing solid foods. I spent about 6 weeks of the next summer (summer of 07) basically for hours and hours of the day trying to swallow all the nutrition I needed by mouth, even if I could only do liquids. But because it was still a slow process, needing a double or triple swallow for each mouthful, I never got to where I could do it. There is now better treatment for this, called Vitalstim, but either it wasn’t available then or no one knew to tell me about it. Very belatedly, last year, I tried for several months to get my swallowing ability back working with a speech pathologist at Roberts S. Packer in Sayre using the vitalstim treatment but it was really too late. And actually things have gotten worse, more scar tissue and muscle atrophy has occurred and I can’t even swallow sips of liquid anymore. I need everything through the gtube.

Another thing about my recovery is I gradually developed a bad case of trismus (meaning I can’t open my mouth very wide) because of scarring in my jaw muscles due to radiation. I was given a jaw opening therapy thingue called a therabite which I used religiously for the first year and 1/2 after treatment but this seemed to happen anyway.

In addition I’ve been dealing with several other “late radiation effects” which didn’t come about until 4-5 years out and have been pretty distressing. Namely, the speech problems, scar tissue beginning to grow across my trachea requiring me to need a trachestomy about 2 years ago and ongoing laser surgery to remove the scar tissue, which keeps coming back. Also, chronic facial, mouth and neck pain, also related to scar tissue.

I also became extremely hypothyroid about a year after my treatment ended. I’ve since learned that a high proportion of oral cancer patients who undergo radiation have their thyroids fail within 4 or 5 years after radiation. Anyone undergoing radiation to the neck should get thyroid function tests BEFORE radiation so they know what normal is for them so that they can be restored to that level with medication.

4. What’s been your biggest challenge?

There have been so many. The first one was getting used to not being able to eat normally, which at this point I am used to but it is still extremely socially isolating to not be able to sit down to a meal with people and have to feed myself through a tube, sometimes in public places if I am traveling.

Probably the biggest challenges though were the “late radiation effects” that didn’t show up until almost 5 years after radiation when I really thought I’d seen the worst of everything. Then all of a sudden my speech started deteriorating (scar tissue in mouth), I started having breathing issues (growing scar tissue around epiglottis and trachea) and chronic face and neck pain (due to yes, scar tissue in all the muscles that had been radiated). When all of these started I didn’t understand what was happening and it seemed so unfair to have a whole new set of difficult things to deal with. In the ten years since radiation I’ve had 20-something surgeries related to it but mostly about removing scar tissue in either my esophagus or trachea and currently I don’t know if there is an end in sight for these. Many of them have been outpatient so they mostly aren’t major surgeries but still the recovery from each one takes at least a few days.

Also, losing my ability to speak clearly (which has only happened in the last 4-5 years) presents constant daily challenges. I have an iPad app that I can use to speak for me in situations where I need that, such as advising students and TC3 has been wonderful about accommodating the needs of a teacher who suddenly can’t speak anymore, including allowing me to teach all my classes online (though normally full time faculty can’t do this). But I still have a hard time negotiating things which require a phone conversation, even with the ipad app.

Again, these late radiation effects are not something that happens to everyone. But they are something people should be aware can happen. Thanks to the internet I know of a couple of other oral cancer survivors of a decade or over who also have had some issues like these including one guy who got back to eating normally after treatment but now is back using a gtube because he was constantly aspirating food when he ate “normally” and kept getting aspiration pneumonia as a result.

5. What would you want people to know about having an oral cancer?

What I would like EVERYONE to know is to be sure your dentist checks you for oral cancer at each dentist visit. Also if you have a sore in your mouth that remains there for more than two weeks, something is wrong and you should get it checked immediately. Unfortunately my cancer was visible for months before it was diagnosed but and apparently my dentist at the time thought it was just the result of the edge of my tongue rubbing against a jagged tooth edge. It wasn’t until it suddenly got much bigger that it got diagnosed. If it had been diagnosed when it was smaller, all I would have needed was surgery and I’d be leading a normal life now most likely.

I’d also like anyone who has oral cancer or who has a relative with it to know about the Oral Cancer Foundation on the web which has a wonderful patient/survivor/caretaker support board that is where I found a lot of information and support during and after treatment. They are very good about being sure what is posted on the board is accurate and factual and the website also has lots of information about cutting edge research and treatments, etc.

I’d also like people to know that the treatment is really tough but lots of people are long term survivors these days and most of them DO get back to eating and speaking normally. However, because there is the possibility of serious complications of these basic functions, I highly recommend getting treated or at least getting a second opinion from a major cancer center.

I also have dental issues, which i haven’t even gotten into but suffice it to say I had only one tooth missing in the back of my mouth when I was diagnosed but I have lost a few teeth since. Two were pulled before treatment because every time you lose a tooth after treatment you are vulnerable to osteoradionecrosis (jawbone rot), another long term risk/effect of radiation. I lost two more teeth in the upper front of my mouth which were basically knocked loose in a surgery to remove scar tissue in my throat (5 years ago) and the additional scar tissue in my mouth has caused a very expensive partial to become unwearable so right now I look like a gap-toothed granny. The thing is, having the gap in the front of my mouth is helpful because I can’t open my mouth very wide but need to swab it out regularly because I can’t swallow.

Anyway, This is not exactly a short description of my journey (and there were a few side trips I haven’t even mentioned) but it’s been a journey with a lot of obstacles. I’m honestly glad that I didn’t know all of them when I started out so I am FINE with you editing what I say way down to what would be informative and encouraging for your readers, but I thought I’d go into the whole strange trip since you asked.

I never forget my bottom line which is despite all the pain and disability I have survived 10 years, so far cancer free (knock on wood), something I was not at all sure would happen when I got my diagnosis!

Cornelia Rea is a Professor of Psychology at Tompkins Cortland Community College