G'day everyone. I am an Aussie expat currently living in Canada. I found a lump in my tongue years ago but never thought much of it. Recently, after getting severe and sharp ear pains I consulted ENT doctors and finally looked at the lump. I was diagnosed with a rare salivary cancer - in my tongue (Stage 2/3). I have had 2 procedures done, the first was minor, the second was major. A hemiglossectomy, removal of all lymph nodes on the left side of my neck and some salivary glands. Grafted from my thigh, I now have a somewhat hairy half tongue. After the second operation, I was informed that there was absolutely no sign of cancer found in any of the tissues that were removed. I was floored. Did I have this procedure unnecessarily. I don't know. I am now contemplating whether to do radiation. I have little faith in doctors at the moment and am looking for input from some others.
I created a blog at the following site if anyone wants to take a look. I created a journal on this page which I updated along the way. http://jdcree.shutterfly.com/anewjourney
If anyone does want to read it, open a journal entry and click the back arrow to get to "35 of 35" for example to start at the beginning.
I don't expect people to read this but I did find it helpful to do this both for myself and others who wanted to know what was happening to me but didn't want to bother me or even to ask.

John

Sorry that you are having to deal with this. If you haven't already you should get more opinions before you go ahead and get radiotherapy.

I haven't read all of your blog but there are others who have had surgery and then been advised that because their cancer had not spread into the lymph nodes additional treatments of radiotherapy and/or chemo were not necessary.

Do your homework and get more opinions before you make any decisions.

Karen

John,

I read your blog. Looks like you are confronted with the same issue all here have faced at one time or another; how aggressive do you want to get with this disease?

Not an easy question and certainly not any easy answers.

Your blog say's you had the primary removed and it was cancer of the salivary gland in the tongue. A second surgery was then preformed where they removed half the tongue (splitting the jaw to do that) with a free flap from your thigh and had a neck dissection.

Pathology from that surgery was negative and you felt you were done.

Now doctor says margin in tongue was not as clear as he would have liked, and is recommending radiation just to be sure they got it all.

From your blog it looks like they found no cancer in the nodes and you felt that the neck dissection was unnecessary (this happens all the time) I think you also might feel that they did not need to remove as much tongue as they did, as no additional cancer showed up.

I think the fundamental question you are facing now is the issue of the margins they feel they have at the original site and how sure your doctor is about the radiation (sounds like he was unprepared for the meeting he had with you).

I would get a second opinion about the margins and the need for additional radiation. The fact that the neck dissection and free flap did not show cancer should not sway your decision here. It�s now all about the margin at the original site. If you feel the doctor is just throwing the �usual treatment� at you and not looking out for your best interests, find a doctor you can trust.

Hi John!

I read your blog and had the same rare type of cancer and surgery. I finished treatment in mid Sept 09. I had two biopsies (one was surgical, the other punch biopsy) and both came back low grade MEC, although with the path report post surgery, it ended up being high grade.

One thing I am thankful for is that during my surgery they had a pathologist present to take the tissue samples and test them until the dr got clear margins to prevent from taking extra unneccessary tissue.

Even with clear margins, I had radiation plus chemo post surgery. The doctors and myself wanted to make sure we gave it all we had, I would be crushed to find out that I had a reoccurence knowing their was more I could have done the first time around, KWIM? I wanted to make sure that even with clear margins, that radiation would zap away any lingering microscopic cancer cells that may have migrated.

That being said, it really is a choice you will have to be comfortable with. Something to think and talk about with your family then have a heart felt talk with your doctor and tell him your concerns. It's important you have trust and peace with your doctor, so if it means getting another opinion then I would do it. I saw numerous doctors before I was comfortable with a treatment plan.

Good luck with your decision!

Welcome to OCF!

Thanks for the welcome, good to see a vibrant community like this. I think I have decided that I will do the treatment. The bottom line is that if it should return down the line I would have to ask myself if I did what I could early on to prevent its return.
The treatment will not kill me and my family, friends and employer are all supportive. Although it may not be pleasant and there may be some consequences, I believe that I am strong enough to come out the other side in a good place.
I am having a MRI today and see the radiologist next week. I will tell him what my fears are as I did last time. Unfortunately I think that the doctors are just way too busy and overworked to take the extra few minutes that we seem to have plenty of.
Thanks again.

We know you can do it! The treatments are not fun, but if it gets it, it is well worth it. My surgeon said that we would "throw the book at it!" and they surely did! Last summer was a blur, but I DID get through it, and you will, too!

Hi zengalib;
Did you have to have the feeding tube due to the radiation?
Seems like you had it in for a long time or perhaps there are some things that are not obvious to me.

Don't read too much into the length of time a PEG remains in place because that may differ between many of us. Until you can get food down the 'normal' swallowing way without barfing, you have a need for it.

I would definitely go for a second opinion on this one; preferably at a CCC or its Canadian equivalent if that can be arranged.

Hi,
I had the PEG in about 6 months. Yes. Radiation treatments made it very difficult to eat for a while. So, my husband would help me by pouring the Ensure Plus in at least four times a day. Then, I started drinking and supplementing with the PEG. Finally, I had it taken out when I stopped using the PEG...was really glad to get rid of it.

JD

Everybody's experience is different but to give you some hope, the radiation (40 treatments) the first time affected my swallowing but not enough that I needed a PEG tube.
If you are swallowing and eating right now after the surgery you described, I'd be surprised if the subsequent radiation required you to get a PEG. I had the tongue surgery and the neck dissection and jaw split open etc when the cancer came back and then I also had even more radiation and chemo. The second round of radiation did not cause additional scarring on my tongue or limit it's mobility any more than it was.
I'm on a lifetime feeding tube now but I lost the ability to swallow and eat from the surgery. I was already on a G-tube (insider cancer technicality: my feeding tube is never inserted percutaneously so it can't be a PEG) right after the surgery due to how much of the base of the tongue they took out and even the forearm flap reconstruction only lets me talk not eat.
I agree with the posters who suggest radiation to mop it up. Trust me you do NOT want the cancer to come back. Heck, I even went for more radiation after having the "maximum" already.
Charm

John,

If it's any help I did radiation only. I did not get a PEG. I made it through OK. I did have to soldier through a few weeks at the end, but I made it.

We have a thing here that we call the PEG wars (debate to get the PEG or not) The end result of that war are some very polarized personal opinions. I got lucky and never realy needed one. There are a few here who would have ended up in the hospital without one. I recommend getting one just in case.

I did concurrent rad and chemo without the PEG. Even if you do get the PEG you MUST continue to swallow each and every day.

John

I would just like to point out that many who did not require a PEG tube during their radiotherapy and/or chemotherapy treatments DID NOT have any surgery before their treatments. Patients who have had surgery to remove a part of their tongue may have other issues that need to be taken into consideration that can cause difficulty in swallowing and swelling than those people who have not had surgery. Where the radiotherapy is being directed varies between each patients situation.

Karen

Well said Karen. Going PEG less is not medically suitable for everyone. Even those of us that did not require a ND or other potentially devastating oral surgery need to really discuss this PEG issue thoroughly with their docs and even seek the pros and cons from this site's users and non users. The PEG can certainly be an asset but it can also turn out to be a liability.