Posted By: Murphy I am upset !!! - 02-06-2017 11:16 PM
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 !!!!
Posted By: bjmpittsburgh Re: I am upset !!! - 02-07-2017 04:51 PM
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!
Posted By: Murphy Re: I am upset !!! - 02-09-2017 12:59 AM
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.
Posted By: ChristineB Re: I am upset !!! - 02-09-2017 03:49 AM
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.
Posted By: AnitaFrances Re: I am upset !!! - 02-09-2017 02:31 PM
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!
Posted By: bjmpittsburgh Re: I am upset !!! - 02-09-2017 02:38 PM
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)

Posted By: PaulB Re: I am upset !!! - 02-09-2017 04:10 PM
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?

Posted By: Murphy Re: I am upset !!! - 02-10-2017 01:37 AM
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.
Posted By: gmcraft Re: I am upset !!! - 02-10-2017 02:33 PM
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.
Posted By: MrsW Re: I am upset !!! - 02-15-2017 12:50 AM
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.
Posted By: David2 Re: I am upset !!! - 02-16-2017 01:29 AM
Murphy, adding my good thoughts and vibes. I'm glad to hear you're getting checked out at a CCC. And you sound like a real fighter. Please keep us informed - we're all in your corner.
Posted By: tamvonk Re: I am upset !!! - 02-19-2017 05:34 AM
Hello Murphy, I am so sorry to read that you have a recurrence.
I just want to reach out to you and wish you well.
Please let us know your treatment decision.
Take care , Tammy
Posted By: Murphy Re: I am upset !!! - 02-28-2017 02:38 AM
Dear Oral Cancer Support Members,
I went to my ENT last week and he said that I have small cell cancer of the epiglottis and the left false vocal chords. He will not operate because it will be a a very big life changing experience as to having a stoma, removing most of my voice box and probably never eating regular again. He had long talk with my radiologist and they have concluded that 35 rad treatments and no chemo to this area will take care of it. I will start treatments March 6th! Funny, I have appointment with the denture Doctor that morning before the first treatment (I don't have dentures yet) I wonder what he will say about it. I also had a lung scan with dye done 5 days ago and have not received the results yet, I will go and get a copy of the disc and the report day after tomorrow morning. 8 months ago I had lung scan and they said I had a small spot on 1 of my lungs and I should keep a eye on it. I don't want to start throat radiation before I know the results of lung scan. Am I not correct in my thinking.
By the way, the ENT and Radiologist both said that this cancer has not mastecized from my tongue to my throat but that I am just unfortunate that have been diagnosed with cancer 2 times within 1 year. 40 years of smoking and 27 years of heavy drinking have finally taken their toll !
Thank you all for your support!
Murphy...
Posted By: ChristineB Re: I am upset !!! - 02-28-2017 03:48 AM
Im very sorry you are going thru this so soon after completing rads only 6 months ago. We will help you get thru this! You can lean on us as much as you need to.

Were you able to go for a second opinion at the other facility? If not, please consider getting a second opinion and treatment plan before starting treatments. If you can get to a CCC where they deal with complicated cases more frequently it would be a very good choice.

Wishing you all the very best with everything.
Posted By: Jo in NC Re: I am upset !!! - 03-05-2017 09:35 PM
Hi Murphy, thinking of you as you begin your treatment on March 6th. Please check in with us and let us know how you are doing !
Posted By: Murphy Re: I am upset !!! - 03-08-2017 02:36 AM
Dear Support Members,
Today (Tuesday) I had my 2nd rad treatment on my throat area, no horsness, difficulty swallowing or pain as of yet. What I have noticed is that what little saliva that I had after the last rad treatments is already being compromised. Now I have to constantly sip water to keep my mouth slightly moist even during the day when before it wasn't so bad. I am asking if anybody has had experience with the drugs Pilocarpine (Salagen) or Cevimeline (Evovac) that stimulate the nerves that control the saliva glands. I have asked my Doctor before and he said he really didn't like it because it just helped in increasing the thick saliva in which the rad treatments really effects the thin saliva glands. The side effects didn't look to promising either! Sucking on hard candy is not so bad but makes my lips sticky from the sugar or other ingredients. Sort of picky aren't I!
Posted By: EMTK3 Re: I am upset !!! - 03-08-2017 05:06 AM
There's nothing picky about needing saliva. It can be very frustrating after a while to always be so dang dry!! I keep a tube of Oral 7 gel in the car, office and home. When I get bad I just squirt a dab in my mouth. This is the only Oral7 product I can tolerate. The tooth paste and mouth wash light me up like a firecracker. They are not supposed to burn but my mouth is still super sensitive. The gel is very soothing and gives some temporary relief.

I read about some of the prescriptions available for dry mouth but they had some draw backs and side effects that outweighed their benefit for me. If you are getting real bad, that may not be the case. You may want to bring it up to your doctor again based on your current symptoms.

Good luck!

Ed
Posted By: gmcraft Re: I am upset !!! - 03-08-2017 02:25 PM
My husband used to carry a bottle of water around with him and a "spit cup" in his pocket. I know it's a real drag but it worked better for him than any lozenge or cream. Because his mouth was so dry, he used to choke on Xylitol lozenges.
Posted By: Murphy Re: I am upset !!! - 03-10-2017 11:59 PM
Dear Support Members,
Thank you for the suggestions about dry mouth, I ordered Oral 7 as soon as EMTK3 said something about it and got it today, it seems to be working pretty good along with the water but tonight will be the test to see how it works during the night when I get the driest. 5 treatments down 30 to go, no pain yet but sensitivity to hot food when swallowing, trying to eat as much as possible while I can! If it is good news I asked the radiologist on the percentage chance of radiation taking care of this cancer of the epiglottis and false vocal chords and he said 80 percent, I think those are fairly good odds. Just have to take my scans when these treatments are over and wait.
Murphy...
Posted By: EMTK3 Re: I am upset !!! - 03-11-2017 04:30 AM
Glad the Oral 7 gel is working for you Murphy! You might want to try another product for the night time. I use XyliMelts by OraCoat. They are all natural tabs that you stick on your gums before you go to sleep. One tab lasts me half the night. Usually put a second one in during one of the bathroom trips. I use the mint free ones and I have no problem with burning.

I have been getting them through Amazon (using OCF's Amazon tab) but I see they are now available at Rite-Aid.

Good luck with your treatments. You have a great attitude. Keep kicking it!

Ed
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