Hi, my husband was just diagnosed last week with Tongue cancer. His lymph node came up in late October and after a course of antibiotics, he was referred to an ENT who started looking for cancer. Several biopsies later, he was finially diagnosed last week with a "low-grade" base of tongue cancer (left side) and a secondary in the left lymph node. He tested negative on the right side of tongue. From my own research, I understand the metastatis to lymph node defines it as at least Stage 3.

We are currently waiting to see an oncologist at a local Cancer Clinic (we are in Canada) to get the cancer officially staged and to determine what the treatment will be.

I do have some questions if anyone can help:
1) Assuming he receives radiation treatment, is a PEG tube going to be inevitable in his case?
2) Will he lose his voice during radiation treatment? If not how impaired will his voice be?
3) He is a realtor and self-employed. He seems to think he will still be able to work a bit during the treatment. Is this in any way realistic or is he in denial?

Hi Marina,

Welcome to OCF. I am reliving the first week we found out about my hubbie's cancer thru you...I know you are reeling from the news and have so many questions.

The decision to have or not have a PEG is a hard one. In our case, since hubby chose twice a day (hyperfractionated) rads, the decision was made for us (it was the only way the doctor would do it.) The surgery to have his PEG placed (as well as a mediport) was done on an outpatient basis before treatment started and Bill was fine after just a couple of days...muscle soreness in his belly was his only complaint. Bill considered it a Godsend...a real lifesaver when his throat was so sore he could not eat. In our case, it allowed me to keep his nutrition and hydration at optimal levels plus administer meds. I believe it made a major difference in his healing ...he was back to almost normal activities and eating at three weeks post treatment. We had a good experience with the PEG...our insurance covered all the supplies and supplements and the PEG site stayed healthy and clean...no problems with infection or pain.

Bill's voice did get raspy, but he was always able to talk. Today, he still has a change in his tone...maybe always will.

Bill was able to work up until about the end of week three. He felt pretty lousy after that and only worked sporatically until two weeks post treatment. I had to start driving him to treatments about that time as well...he just was not up to it.

Hope this helps...you have come to the right place for both technical answers and moral support.

My best to you in the coming days...things will get better once you get a treatment plan in place and get going...these first few days are the hardest as far as your mental state is concerned. The waiting and decision making is the pits.

Hang in there, Deb

Marina,
No doubt about it, you're in the right place for information. This is a wonderfully helpful site that is full of wonderfully helpful people who are sincere and who truly care about what is going on with you and your husband. Godspeed.

Thanks Deb and John. Yes it is still a shock, made worse by having to wait to see an oncologist to ask questions after the intial diagnosis by the ENT/lab.

I want to add that we have a 2 year old and an almost 4 year old and I'm also 16 weeks pregnant (for those trying to do the math, the lump was noticed 2 weeks after conception). The timing on this couldn't really have been any worse.

Marina,

Lets see what treatments are proposed before I comment on the likely side effects both during and post treatment.

As far as the Peg, you will hear both from people that had the Peg and from those of us that didn't. I didn't and I'm glad I didn't and if I had it to do all over again I still wouldn't want the Peg. If he has the "standard" treatment of concurrent chemo and IMRT it won't be easy either way. The most important thing to do is to make sure he gets the recommended daily portions of food and water and keeps swallowing the whole way through.

Let us know more about your husband, i.e. age, smoker vs non smoker, drinker vs non drinker, and definitely tell us what treatment they suggest. Read the tremendous body of information available on this site to better arm you when those difficult decisions need to be made.

I am sorry for your need to be here, but welcome you to an incredible community of people who are here to help.

First of all, as David said, a lot depends upon the specific treatment regimen prescribed. However, his diagnosis sounds a lot like mine. Keep in mind that everyone responds to treatment differently, so for every horror story you hear, there is someone who got through pretty well.

In mmy case, as my signature indicates, I had very aggressive treatment -- bilateral neck dissection, 39 rads and 8 weeks of chemo. I did not have a PEG tube, as our CCC does not use them as standard treatment. They believe that it is better to recovery to keep eating, if at all possible. They do, of course, insert a PEG where necessary.

By Week 4 or 5 of radiation, I was down to extremely soft foods and fluids. However I ate all the way through. I also continued to work all the way through, and drove myself to all treatments. Again, this is not to say this will happen with your husband, but it does happen.

Stay close to the boards as things progress. Ask lots of questions, here and at the treatment center. We are all here to help.

Marina,
Just my 5 cents....
As you already heard a lot depends on what the treatment is going to be, surgery/chemo/rad.

1) Assuming he receives radiation treatment, is a PEG tube going to be inevitable in his case?
I had one and I hated it! But I still recommend getting one. Some RO's absolutely require this. It does make things easier (hydration and nutrition) when you need it. Clearly, if you can eat normally do so as long as possible! On the other hand, if it turns out that you need a PEG, it would be very bad to insert this after a month of radiation when everything in inflamed!! (they go through your mouth)

2) Will he lose his voice during radiation treatment? If not how impaired will his voice be?
Expect changes... and this depends on the the radiation field and as always on the individual. There was a time when I used note pads (and hand signals) to communicate.

3) He is a realtor and self-employed. He seems to think he will still be able to work a bit during the treatment. Is this in any way realistic or is he in denial?
Again there are big variations... but do not count on it. Initially he should be able to do some work if all goes well. Later on he probably would not have the stamina to drive a lot and show houses (Assuming problem 2 is not an issue). Also if he is on Morphine/Oxycodone or other stuff not much work might get done.

M

Thanks everyone. Here is a bit more about him.

My husband is 52 and was a long time smoker (28 years) and fairly heavy drinker (6 pack beer a night) but quit both cold turkey 9 years ago, a few years after we met/married.

He is a healthy person, not overweight and works out at the gym regularly as well as playing golf all Spring/Summer. He is rarely sick and has never been hospitalized.

He does not work in a hazardous environment being a realtor now and an onsite computer technician previously, although has been a very heavy cell phone user for approximately 10 years (on the same side as the cancer - I have read some articles indicating a possible connection).

There seems also to be many articles suggesting a link between HPV and oral cancer. Neither of us have been tested for this, but I plan to ask my own doctor to test me as I'm interested to know if this could be a possibility in his case.

Marina,

The only way to test for the presence of HPV in oral cancer is to test the slides from his biopsy. Since he smoked for so long and was a heavy drinker, HPV may not have caused or contributed to his cancer but his age and cancer location seem to point to an HPV connection so if I were you two, I would tell my clinic that I wanted my slides tested for HPV. Forget the cell phone because as of right now these are the only identified causes of oral cancer: Tobacco, alcohol, HPV, Betel seeds and some have also linked marijuana.

Have they mentioned a neck dissection?

Most likely he will receive a combination of chemo and IMRT (Intensity Modulated Radiation Therapy) for 6 to 7 weeks. The chemo may be anything from weekly to every 3 weeks and his radiation will most likely be daily unless they double up a day each week. The whole Tx plan is designed to maximize the killing effect of the radiation and they usually give him the maximum dose which is around 72 Gy or greys.

Once you know more please let us know and we will be able to tell you more specifics.

Hi Marina,

I am 2 1/2 weeks past my radiation treatments. I did not have a PEG-my choice-but my Dr. certainly would have insisted on one if I wasn't eating/drinking enough. It got really tough after week 3 to maintain this, but I did the best I could. I eneded up losing 10 lbs and am now trying to regain them. I also had surgery so that was a different story as well. I'm guessing your husband won't be having surgery. Is that correct? I didn't lose my voice, nor did it change, but it did hurt to talk at times, so I limited speaking for a while. My tongue became very sore as well. As far as work, I've been out of work since the surgery in October, and probably have a little longer to recover. But, since I also have MS, that has added another wrinkle to this. I wish you all the best.