My throat cancer

fgerard

Hi

Just heard about the Cancer Survivor Network and found it very helpful.

 

I was diagnosed with throat cancer in May, 2019, had a golf ball size tumor on the left side of my throat. First general doctor in October, 2018 said it was nothing just by feeling it. 8 months later (as it got bothersome) saw a different doctor and he said, its not nothing.

 

EMT diagnosed throat cancer, stage 4. I had 3 super rounds of chemo and 40 radiation treatments. Went thru the mucas, mouth sores, dry mouth, hell really.  Finished treatment in October of 2019. Went into the hospital soon after starting treatments and had a feeding tube put in. Now 8 months after finishing radiator later, still have a feeding tube, feels like I have something stuck in my throat, ENT says everything is fine. I have severe ear aches and jaw ache. They say it could be from clenching my teeth but I don't think so. I try to eat but nothing tastes good, so I stopped trying. Depressed at times, wondering if I'm every going to enjoy normal things in life. Wondering if things will get better. Hopefully in 2-3 years, is what I am reading. 

I guess I'm hoping to see if what I am experiencing is normal. No one tells you how long it will really take to recover. Hoping to get some insite from other people that are further along in their recovery.

 

Frank

 

Logan51

Frank

You describe your experience like you got treated in the boondocks by Dr.s not very good. 8 months out the mucous and dry mouth are typical (for years).

Did you get a PET/CT scan before treatment? And after? If not- get thee to a Major C Center. "Stage 4," if correct, means it has metastisized to/in another body organ, and your Dr. could be wrong about that- let's hope so. And a "golf ball" sized tumor? One would think such as that would have you sent to a Major C Center for removal. I had enlarged lymphs, which they treated with Rads, but they were tiny compared to a golf ball.

Ear aches are not unique, but a severe jaw ache is 8 months out. Typical is nerve, muscle, and other tissue damages from the Rads. I had a Power Port and FT thru tx, but was eating within 2 months. The taste buds are also typical. Might want to try something spicy, like Roadhouse Chili. Worked for me. Course, now I'm FT dependent, so to heck with taste.

wbcgaruss

Frank Welcome to CSN H & N Forum

Sorry, you have to be here but for us cancer survivors it is a great help. Let me start at the beginning of your post. It looks like the doctors weren't on the ball by making sure you got the right tests or got to the right doctor like an ENT but that is passed I say this to let you know any new problems don't ignore them until you are sure the answer is satisfactory for the problem. I too had throat cancer but not sure on the staging but the tumor was large because I was having issues swallowing things like pills and had a sore throat. If you click on my name under my picture you can read my story. When talking about a cancer situation like throat cancer like ours that is pretty well advanced is not a small thing to overcome. When I started getting set up with the chemo and rad docs and having all my preliminary meetings and they explained things to me the radiation docs nurse told me outright that "I may as well figure on a year off my life dealing with this". That is to say, treatment and recovery will probably be a year. As swallowing and eating go each person is different as to how long it takes to recover. I started treatment in January of 2013 and I would say by October I was able to eat enough to get my feeding tube out. So it was about 10 months. Some people have them out and can eat sooner some it takes much longer but you will get there don't give up. I was still getting things stuck in my throat and had to go to the hospital and have a piece of turkey removed and after that had 4 dilations over a period of time which really helped my swallowing. They carefully enlarge your throat a little at a time to avoid tearing. Maybe this is what you need check with a gastrologist. Are you seeing an ENT regularly? I was seeing my ENT every month for a year or more so he could keep an eye on things and in this situation an ENT is your frontline protection. It then went to every 2 months, then every 3 months, etc. The aches and pains and soreness and other issues may take a while to work out as with cancer treatment things are measured in weeks and months. So please be patient. I know what you went through with the nasty mucus, mouth sores, dry mouth, hell I agree but we made it. You are now through the worst and if the docs say you are ok then you may have to force yourself to eat for a while even though your taste is poor to nonexistent I know where you're at as when there is no flavor I always said food had the flavor of cardboard, not much incentive to eat but keep trying your taste will come back. If you can swallow and eat at all stick with it as the throat is a muscle and if not used is not going to help.  You will also have some leftovers from treatment such as dry mouth, neuropathy, jaw pain, or maybe none or very little as this varies by individual. Are you seeing a speech therapist as they will have you doing exercises for swallowing and mouth opening and anything else affecting your situation and have you had a swallowing test done, if not you should have one done so they can identify any problems that are there and you can work on them? Yes, what you are going through is normal for the situation. The motto here is NEGU (Never Ever Give Up). I remember reading on this forum of a person saying that this cancer situation is now their job at least till they get through the biggest part of it as it does involve a lot of treatments and follow up. So it is like a job almost. You will get to a better place but it is just going to take time and if there is something going on you are not sure of don't put it off go see your docs or ENT as they are there for that reason to help you. As far as depression most all of us on here have had it to one degree or another because this is tough stuff and treatment and recovery take a long time. Talk to your doctors about medication for depression if you think you may need it and they can help you determine if you need it and what strength and type. Lean on your cancer team as they are there to help you get through this with as much success as possible no matter what is going on from eating, swallowing, poor taste, depression they will help to get you a good outcome. What you are experiencing is normal and there are many of us so you are not alone, hang in there and we're here for ya-Trust in God-Pray A Lot-Take Care-God Bless-Russ

Sorry I made this so long and I hope you can glean some help out of this response.

 

whoisjohngalt

stay positive, stay strong

I'm very sorry to hear about your condition, and am glad you found this site. There are lots of many relevant threads that will provide information, and hopefully, comfort! It may not always feel like it but you will begin to feel better over time. I, like many others also struggled with depression. A good family support network is very helpful