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Larynx Radiation - BIG Lump Sensation

TonyG5003
Posts: 5
Joined: Jul 2010

Greetings...

I am a 39 y/o male and I was diagnosed with very early Stage 1 Laryngeal Cancer recently. I've never smoked, and do not drink... so everyone was shocked that my simple vocal "polyp" turned out to be cancerous. I'm thinking it may be due to Reflux, which I've always had, but my ENT thinks it's more likely due to HPV - we really have no idea.

I am currently undergoing Radiation Therapy, and have only had 10 treatments thus far. My problem, is that my swallowing is ALREADY becoming an issue - I've got what feels like a ping-pong ball stuck in my throat, which moves (painfully) when I swallow. Later in the day, the pain seems to radiate up my neck and face, creating heat, a headache, and general feeling of malaise.

My concern is that if I'm already experiencing swallowing difficulties, that I may not be able to swallow at all soon - seeing as how I've got 5 more weeks of this to come.

Since the tumor was removed surgically, and since I'm now DEEPLY concerned about quality of life, I'm contemplating discontinuing the radiation - and instead, waiting to see if it develops later - which was an option presented to me. Frankly, I'd thinking I'd rather go without a voice later, than have such poor conditions sooner, in the 'hopes' that it never returns.

The tumor's pathology showed no signs of spreading. BUT of course, there COULD be cells remaining in the chord itself. So... I feel completely trapped, like either decision will be a bad one.

train-nut
Posts: 101
Joined: Jun 2008

Tony,

Prior to making a decision on whether or not to continue your current regimen I suggest getting more information. What is causing the big lump sensation? What can be done to reduce the swelling? Are you HPV+(ask pathology to test the removed tissue). If so a mild treatment plan may be appropriate. With IMRT on a very early stage I tumor and no spread you might be able to get by with minimal pinpoint radiation. Is it possible that you are being over-treated? Could a second opinion be of benefit? I know, you want answers, not more questions but they are all I can offer. My overall feeling is you may be able to do well from both a cure and a side effect viewpoint with considerably less treatment but you need more info to make a judgement call. I wish you the best of health, Rich

TonyG5003
Posts: 5
Joined: Jul 2010

Yes... you hit the nail on the head. I was literally rushed into treatment - I think due to the fact that the cancer diagnosis was such a shock. I'm not kidding... I went from removal of a "polyp" on Memorial Day, to diagnosis that Thursday, to the mask fitting for radiation 10 days later.

I think doctors are trained to treat, rather than search for a cause. I've asked both the ENT and Oncologist more than once about the HPV likelihood, and the overall reaction is "it's irrelevant" because I still have cancer. I've also mentioned that I've had to take PepcidAC every night for 12 years due to acid reflux - that didn't phase anyone either.

I think the consensus (from the doctors) is that I'm already going through the minimal radiation program as it is - whereas, I feel like I'm almost killing myself over a "puny" tumor. (That's what they called it.)

Fire34
Posts: 352
Joined: Feb 2010

Tony
I know exactly how you feel. I went thru 5 alternating weeks(one on, one off) of concurrent chemoradiation with 5FU, Hydroxyurea & Erbitux. During the 3rd week I had to talk to the nurses using a pen & paper. I had a spot next to the vocal chords not on like you though. My voice did not return until after the middle of the 5th week. I still have a little voice problems here and there. I am 8 months post now. I was stage IV HPV+
I also have my swallowing issues, the exercises they(ENT) prescribed help immensely, I hope your doctors have you doing them as well. Most of us here had PEG tubes place to help with nutrition. I also had one as well. I even have my swallowing issues this far out, it is something that you get used to and will get better after treatment has ended.
You never mentioned any chemotherapy?
I had great moral support and hope you do to? this site is one I wish I had known about going thru my treatment, you will get support here. Dont quit and take that chance the monster might come back worse.
Best Wishes & Prayers on whatever decision you make
Dave

TonyG5003
Posts: 5
Joined: Jul 2010

In my case, chemotherapy isn't needed, as the cancer was confined to the tumor (or mostly, anyway.) The only reason we're doing radiation is because what they "thought" was a simply polyp turned out to be cancerous. So, it was removed like normal polyp, and the lab test was simply a formality. Therefore, there are quite likely cancer cells remaining from the removal.

I've decided to continue, because the doctor said I'm doing better than most with my type of case. But, that lump in the throat is not pleasant. I seem to be okay swallowing.. but there is pain associated with it.

SASH's picture
SASH
Posts: 279
Joined: Apr 2006

As Fire said, just get a feeding tube and use it when it hurts to much to swallow. Keep trying to swallow even if you have the tube just to keep the muscles from forgetting how to work. Then the tube can be used to get in the nutrition and calories to maintain yourself until you are done with treatment. Once swallowing is no longer painful and you are getting all your nutrition via your mouth, you can have the tube removed.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

The problem with a lot of Throat Cancers is that you don't feel the cancer in it's early stages. You were extremely lucky to find it at Stage 1. It didn't spread. Radiation is not fun. There are a lot of nasty side effects. However, do you think it worth the risk that you still have bad cells. Talk to your doctors about your concerns. For me the side effects of the radiation treatment have been worth it. I enjoy life.

TonyG5003
Posts: 5
Joined: Jul 2010

Judy:

Did you have only Radiation? If so... did you too experience this giant scratchy lump in your throat? In my case, ironically, the very thing that causes me pain, actually helps after a couple minutes... which is eating. It seems to soothe - especially cold applesauce. Cold water actually hurts after a minute or two.

I think what bothers me most, is not the sensation of swelling itself... but the feeling that I'm going to choke. The nights and waking-up are the WORST! Having almost died 7 years ago due to a laryngospasm and pulmonary edema following a "routine" appendectomy, I'm HIGHLY aware of anything to do with my throat.

This may (or may not) sound strange, but on the way to my treatments every day, I observe all the other people, driving, chatting on their phones, going about life, and wonder/contemplate if they've ever experienced anything like this. And if not.. they have NO idea how fortunate they are to be healthy. I too didn't realize how good I had it, until now!

As I'm sure everyone knows... this type of cancer in particular can be very isolating. There's just not that many resources out there. I know I'm not... but it is easy to feel like a freak of sorts.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

Tony,

I skipped a few days of posting (a while back). I never had any pain in my throat. I do have the choking sensation. I did a swallow study and they determined that the upper part of my esophagus doesn’t contract properly. Don’t know if it was from the radiation or gurd. I am seeing a doctor on Thursday. The test also showed me that even though something was stuck everything else was working properly.
I wasn’t choking. I no longer panic. So when it happens I just continue to swallow until it goes down. I did start taking the Prevacid again and the swallowing has gotten a little easier since the test. With this site I do not feel isolated.

Judy

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Tony, I know just how you feel about people going on as if nothing has changed around you. I'm 4 and one-half months out of chemo and 35 rad treatments, and still healing--had "mop up" surgery about ten days ago to remove some lymph glands from one side of my neck. As menioned, you are fortunate they found your tumor at the early stage, given it was located in the neck. I still wonder at how the rest of the world proceeds without a hitch, while I'm still hindered. It does seem strange, but this board, too much TV, and fast action paperbacks keep me sane as I move inexorably through recovery. Keep to your schedule, keep swallowing--pain meds can help--and best of luck in your return to health.

Hal

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

Tony, I am very sorry that you're going thru this. I had the same cancer, voicebox, and went thru 35 rad trmnts. I didn't really find it hard to swallow but my neck did get extremely burns and I could not swallow foods. The hardest part for me is the recovery. I"m 10 mons post last trmnt and I still have problems swallowing solids. A piece of chix got caught today and it took 45 min to finally get it down my throat. I had spent 20 min trying to thow up to free it but that didn't work. It does get better but as I said, I'm still having some problems. Only you can decide what is right for you but when I heard the words, "you've got cancer", I said lets start treatment today!!
No matter what you decide, you will find this site very helpful for info, side effects, surviving, and anything else you may need. You will be in my prayers.
God bless you,
debbie

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

Sorry to hear that you're going through that. I'm in the exact same place as you. Laryngeal squamous cell carcinoma T1/N0/M0. Non-smoker, non-drinker, no reflux, maybe HPV-related, don't really know. I'm 3 radiation treatments into a 35 regiment. First thing's first...

DON'T STOP ANYTHING WITHOUT THE FULL AGREEMENT OF YOUR ONCOLOGIST AND RADIATION ONCOLOGIST!

You may feel like you were rushed into treatment and that since it hadn't spread, why bother, but I was told by numerous docs that the larynx area has a direct link to the lymph nodes in your neck. If it were to spread there, it's a whole different ball game. Also, everyone handles radiation differently. Talk to your radiation oncologist about what your feeling and keep a daily journal of what's going on with you. I keep a spreadsheet with the following:

The date and number treatment (going 2 months beyond the last treatment) and I measure on a scale of 1-10:
throat
neck (muscular)
voice
coughing (I have a minor chronic cough)
skin
saliva
solid foods
liquids
mouth (sores, etc)
jaw/teeth
taste
energy (mentally alert)
fatigue (how tired)
left ear
right ear
hrs sleep
Emotional (up or down feeling)

Then I also note the following for each day:
MEDICATIONS
SKIN CREAMS/GELS
WEIGHT
EXERCISE
NOTES

Keeping track of this data can really help your radiation oncologist see what's going on with you.

Everyone handles this differently. It may be just a feeling and nothing's there. You may have to force your way through it. The docs may have something for you to help. The docs may want to do some test or scans. But most of all you need to remember a very important thing:

WE HAVE BEEN DIAGNOSED WITH A DISEASE THAT CAN KILL US! If left unchecked, you're screwed. The treatment can be brutal in the short-run, but it's what we have to endure to get rid of this $hit. That's why they call us survivors!

Good luck!

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

I had 30 treatments for a tumor, stage 4, but after the 30, and only 3 chemos, they have determined i was overradiated and killed all the bad cells and good cells, Now they can't heal the damage, it's still a hit and miss game for getting the cancer, scary, your dang right. still Doctors don't know how to cure cancer only threw trial and error....and by there patients that give them the feed back from the pain they are going threw, so they can share with the next patient. There is no easy explanation, everyone is different.Dennis

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