I was diagnosed with tongue cancer last April and had tongue surgery and right neck disection last May (2016). No cancer in the 39 lymph nodes from neck. Then 6 weeks of radiation treatments after teeth extraction. I have gained almost all my weight back, eating and feeling better than ever. Just waiting for dentures hopefully in March. Had soft tissue scan on 1/9/17 Radiation Doctor says it looks good, but then I get a call from ENT doctor and wants a visit. Go in and he says that my epiglottis looks irregular and wants to do a biopsy, that will be on 2/8/17. I am not happy with it, before tongue surgery, neck disection and radiation I was mister tough guy, now I am scared and don't want to go through this Sh#t again !!!!

Murf -

I get it. Been there myself, (Read the details below)

Take your anger and frustration and try to develop some patience. If your epiglottis is cancerous, you'll need to focus on the surgeries and treatments again.

Until you're certain about the diagnosis, try not to get too upset by the possibilities. (Easier to type than actually do.)

Update the board when you know more.

Good Luck!

Dear Board,
I had epiglottis biopsy done early this morning by ENT, the doctors did biopsy test while I was asleep, It is cancerous but do not know how bad, ENT said surgery probably not option and had talked to radiologist. Wow, rads again within 8 months? Just how sore will my throat get? Will hydrocodone be able to control the pain like the inside of my mouth? How hard will it be to swallow? I guess according to the doctors if I lose more than 20 pounds that qualifies for a PEG tube? I'm 6 foot and 180 pounds now.

I am so sorry you are dealing with a recurrence! I had been hoping it was scar tissue or something related to the treatments you just finished.

I would suggest seeking a second opinion at a CCC. The CCCs are used to dealing with complicated cases and may have options smaller local facilities do not.

Unfortunately, I do know a thing or 2 about recurrences. Ive been thru it myself. I dont know if rads will be an option or not (another reason for a CCC is so important). Most patients can only have one round of rads. I do know of several here who have had rads twice and even fewer who have done rads 3 times. This is on a case by case basis. If having rads again, it is to a different area. Since you just finished rads if getting rads again its likely to be a lower dose. Surgery is usually the treatment for recurrences after a patient already had rads.

The PEG tube is a tool to help you get thru treatments easier. If its an option to get the feeding tube prior to any treatment it would be easier than getting it after rapidly losing weight. I know having a feeding tube is uncomfortable and hard to deal with mentally but it really is a very good option.

Feel free to ask questions and we will do our best to help you get thru this.


PS... Im sorry I do not remember your history. I'll send you info on how to add your signature so its easier to help you. Look for a tiny flashing envelope next to the My Stuff tab.

Hi, Murphy,

I want to encourage you to forge ahead. Tough news that you have a recurrence. Find out ALL you options. Ask lots of questions. Also, regarding the PEG tube, my husband had one for 2 years. It definitely helped him survive the effects of rads. Do what you have to to beat this. keep us informed so that we can help you through this next phase. My best to you!

Murf-

I think you may be surprised at the limited treatment options you have available.

Like Christine noted, not many people have two courses of radiation. (Mine were 17 years apart and it was only an option because of the time between.)

Whatever course your doctors decide on, follow up with a second opinion at the best available CC.

Meanwhile, you should probably take some time and allow yourself to become emotionally and mentally prepared for the next stage in your fight. Oral Cancers are tough and there are no easy solutions in becoming cancer free.

BTW - PEG Tubes and pump feeds are not as bad as they sound, if you end up requiring them. (I'm 6'-2", 245 lbs, and maintain a consistent weight with only pump feeds)

Murphy,

I'm sorry to hear of your biopsy results as we were all hopeing in was something other than cancer.

Just to let you know, I had radiation 5x, over 200Gy, both external and internal radiation to the same areas in 3 years, some which was for many recurrences (7). I had IMRT 2x, High Dose IORT 2x during neck dissection surgeries, which a newer form of Brachytherapy, and Proton Radiation 1x, which is high precision radiation that spares adjacent structures, and has no exit wound, but is only done in about two dozen centers in the U.S.

In order to do this successfully and safely, with even more radiation than my original primary cancer, I had combination of treatments, including three types of radiation, a pec flap during a neck dissection to bring fresh tissue to the area radiated, and another time, I had my carotid arteries removed, so I have no blood flow to one side of the neck.

So it's possible to do reiiridation by experienced radiation oncologists and in experienced comprehensive cancer centers, in select patients, and such depends on many factors including the areas to be radiated, consideration for minimal side effects/morbidities, age, co-conditions, type of radiation, total prior grays to area, time between last treatment, which is mentioned no less than 6 months, etc.

It's difficult to say what or may not occur, but radiation toxicities are usually based on the type of radiation, the areas to be radiated, the dosage amount (Grays), daily fractions, frequency (weeks), if radiated before, if with chemo, age, physical condition, and other co-morbidities.

Have they also suggested any chemo?

Thank you all for your support, it helps so much!!! I will have a consultation with 3 doctors hopefully tomorrow at Brown Cancer Center in Louisville, Kentucky. I believe that is one of the best cancer centers in the area. I will get all my paper work, scans, etc. in case I want a 2nd opinion. I was able to talk to my wife this evening and she told me that my ENT talked to her after the biopsy and said that this is a early stage of cancer but will know more about it at the consultation. I will try to let you know soon how it goes.

Murphy, I'm sorry I am coming to this late. I am sorry you've got bad news but I'm glad you seem to be prepared to get a second opinion if necessary. That's a very good start. Keeping you in my thoughts.

Dear Murphy-
just a note to say... with all hope and possibilities- I do hope there are options that you will be able to undertake and do okay by.

positive thoughts to you.