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Old 03-17-2013, 04:09 PM   #1
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Exclamation Please Read and share your experiences.

Hi there,

I hope anyone who reads this and can offer any input will do so.. please.

I am a 34 yr old mother of 6 children. I do smoke ( quit date is in set.. again) I live in Rural Nova Scotia Canada where we are not known to have the best healthcare. (sorry if it offends anyone but very bad luck for my family). Dr's just spend 30 seconds take a guess give you pills and out you go.

My question is or request is to hear what your symptoms were and how you were diagnosed with throat cancer. I am going to list what's going on and hope to get opinions. Trust me I am much happier with the idea that all is well in my world, as the thought of cancer makes me physically ill, as my husband has been ill for over a year and can not care for our children by himself at this time and I am all they have. Here's my quick little story.

Had my sixth child a year ago in october, my pre pregnancy size is about a 10-12. In the past 6 months or less I am now a size 5-6 smallest I have been since i was a teenager, not going to say I hate it. I don't really eat a lot, not really hungry much and I often have bad bouts of diarrhea. About a week and a half ago I began to have a slightly annoying sore throat but I just ignored it. It started getting worse, still ignored it, then i noticed a lump that was quickly growing in size on my left side of my neck (gland). All my pain was on one side which was weird I though as I am used to having full throat pain with a sore throat. When the lump got to about an egg side and my eldest son was grossed out I thought.. maybe i need to look in my throat. I looked in and saw a very swollen tonsil and a greenish mass or abcess behind or kind of on it.. hard to tell it was a mess. (i have pics lol) Went to the hospital that day simply because of it being gross, dr did not even shine a light in my throat saw the red tonsil, said tonsillitis gave me low dose of antibiotics and sent me home.

Next morning the lump was larger the swelling was worse the infected area was worse, the pain in my right ear was worse and so was the pain in my jaw. So off to new Emergency Room. Once again the dr would not look very closely said yeah it's an infection gave me steroids and strong antibiotics through IV which I am still going back tomorrow for my 4th dose. Still no improvement in the infection and ear pain is worse and jaw is getting harder to open and pain on the right side of the back of my tongue. The steroids have reduced the swelling alot but it feels as though i have something stuck in my throat but only on the right side. Like if you were to eat a really dry piece of chicken that just won't go down. (ps i don't cook dry chicken I go back tomorrow for more antibiotics but I have a nagging feeling that something is up, i don't know if that makes sense. Not saying I think it is cancer but Idk it just does not feel right. As a younger person I had strep many times and it never was like this. Right now I want to reach down my throat and pull whatever is down there out as it is highly irritating. I keep subconsciously clearing my throat hoping to get something up.. no dice. I have tried to talk to my husband he says i worry to much.. but i'm not so much worried as perplexed if that makes any sense. I pay close attention to my body and I know when something is just not as it should be. Today was the first time a dr actually looked in with a light and and said oh maybe you do have an abscess.. oh well antibiotics will get rid of it.. ugh. They wouldn't believe me prior to today and refused to even view the images i had. I take pics of it every day to see the changes.. I am a photographer so things make more sense to me in images lol.

Please Please share your stories, I don't know how to make them listen if I should push for a different test or something.

 
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Old 03-18-2013, 03:31 AM   #2
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Re: Please Read and share your experiences.

i cheated lol. you may have already read this but i just copied and pasted my post titled "almost wish i would have never got checked" .for your reply. hope that is ok.
hi, my name is jeff and im 41. and to be straight forward i lived a not so healthy lifestyle. started smoking at age 13/14 (quit 3 weeks ago. you`ll see why) and im what i consider a functionable alcoholic. the last time i posted i was concerned with the pain i had after ankle surgery. haha. this site is awesome and very helpful and id like to thank the people behind the scenes that make it all possible. i`ll now take that ankle pain X10 in exchange for what im going through now. and believe me , even now i feel fortunate. there are many peoiple out there that are suffering from and fighting for their lives to beat their cancer. some without cures, my heart goes out and i wish all the best to any and all dealing with and trying to kick cancers ***. im far from giving up the fight but son of a b this is sometimes getting the best of me. from day one, i said i consider my throat cancer to be at the bottom of the "cancer chart" it shouldnt even be catagorized as cancer compared to what some people are fighting. in fact, back in sept 2012 when i found out i had stage 1 (i caught it early) one of my sons friends was fighting for his life against a rare form of brain cancer. around the time i started my treatments by boys friend had lost his battle and passed. R.I.P. ALEC! since my cancer, google and i have become very close. as i have been looking up all sorts of forums and blogs on throat cancer looking for someone who may be in the same boat as me. most everyones story is unique and i havent found anyone going through the same as me. what id like to do here is tell my story start to current. ill ask questions, if you have answers or suggestions it would be great to hear them. if you have questions i will try to answer them. if you would like to just absorb my story and just take it in thats fine as well. the meds im currenty on are keeping me up and im kinda in the mood to type. here we go:

back in may of 2012 i noticed my voice was becomming hoarse but i really didnt think too much of it. this went on a few months until my family and friends started asking me "whats wrong with your voice? up all night partying or what?" to which id reply "no,....i dont know whats wrong with it." so around early august i figured what the hell, i ll go get it checked. i went to family doc where they diagnosed and treated me for allergies. if i recall, they gave me an antibiotic, an inhaler (which i used faithfully) and a set of pills that you use on a schedule 4 pills the first 4 days, then 3 for the next 3 days etc. about a month went by and there was no improvement. meanwhile, dr. jeff (me) is googling "painless hoarse throat" which to my surprise most indications were pointing to some sort of throat cancer. i started telling my wife (who dont believe much in even seeing a doctor) i think it may be cancer. to which she would say ohhh shut up, its not cancer.

so instead of returning to my family doctor to let them "guess again". it seems like thats what they did.... took a guess.... uhhhh allergies? you mean to tell me they are qualified to. put their finger in your a$$ and root around but they are not qualified to stick a scope down my nose. so they just guess? boy that aggrivates me. anyway, i just happen to have a niece who works for an ENT and i should have went there first but didnt untill the month went by taking allergy meds with no improvements.

now its early september i go to ENT. first thing he does is put the scope down my nose and has me make sounds. "E E E....I I I". he pulls the scope out and says "there is a mass on your vocal cord". he goes on to say its one of 3 things. (i forget what all 3 were) one was a wart, then the other, and the third thing he said it could be is cancer. ok i said. "well doc, you do this for a living, im sure you seen em all. what are the chances of it being each of the 3?" he said "33% each. its like flipping a 3 headed coin." so i asked whats next? biopsy. he explains everything about the biopsy procedure to me and the biopsy is performed about 2 weeks later. all the while im preparing for the worst and telling the wife i have cancer and she is still telling me "shut up".

we were scheduled to get results of the biopsy in like 3 weeks but the wife couldnt wait so i told her call and ask if we could get results sooner. so they got us in as soon as the results were in. sat down in the exam room. he came in and said "i will cut right to the chase, it is cancerous". talk about a moment i`ll never forget. (im sure most of you remember that moment) he went on to explain the best coarse of action to take. and he explained that beings it was caught early enough (stage1) the chances of beating it are around 95%. "were gonna nip this thing in the butt, your voice will probably come back better then before". i did ask about a second opinion and he told me there is always two pathologist that look at all biopsys. so i started the first of 33 radiation treatments on october 8th 2012 and finished the friday after thanksgiving. the first 10 or so were no problem. after that, pretty much pure hell as far as pain. but they took pretty good care of me and i made it through. my first post radiation check up with the ENT in dec went great. he scoped me for a few seconds and said "its gone, i dont see it, its gone" what a relief. i felt great! i was back to work on new years eve (i was nowhere near 100% still low energy level and other rediation side effects. but nhe said my energy will return and things were begining to be normal again. i wish that was the end of the story. HOWEVER, that was the last "good news" i had in this journey. januarys exam came. he scoped me and said "what happened? looks like dog meat in there" it was swollen. he put me on a cycle of prednisone, a steroid. which did nothing. during that cycle i started having swallowing pain and a wicked ear ache.

SIDE NOTE: WHILE IM WRITING THIS NOW IM FINDING IT HARD TO RECALL ALL THE EVENTS THAT TOOK PLACE EXACTLY. IT MAY BE BECAUSE OF THE FENTYNAL IM CURRENTLY ON.

all i know is that each scheduled appointment i had with the ENT i had to call before that appointment due to some kind of problem. ear ache, throat pain, etc. and each time i was seen he was tells me there is swelling and he cant really see anything. fast forward to fri feb 22. 2013. im getting ready for work and suddenly i start having a hard time breathing. im pretty sure im taking liquid oxycodone 5ml-10ml every 6 hrs as needed. its like im having an anxiety attack but i never had attacks like this before i did not O.D. and i remember saying to the wife "i think i gotta go to the hospital" but i didnt go. instead there i was googling what to do when you cant breath. iT said to take a hot shower....humidity will help. i quick shower and after 2 hrs im calm breathing fine and all is well...pretty freakin scary tho. i did not work that day and had no problems during the weekend. monday comes feb 25 im at work. all im doing is using a shop vac and vaccuming (boss kinda giving me easy stuff to do because i told him what happened friday). around lunchtime im getting short on breath again and i feel an attack coming on. im thinking what the hell is going on. (no im not taking too much oxy liquid) im having another attack of some sort. i leave work early and stupidly drive home (5miles) during attack. all i was thinking is hot shower, hot shower. i get home shower and im fine. feeling a little uneasy but breathing fine. now, on monday nights a bunch of us play cards together and my dad plays as well. that monday night the 25th i was explaining to dad what happend to me on friday and just today (monday) at work. (this comes into play later) by the way, i lost at poker my aces got cracked. tuesday morning the 26th. i walk out the house to go to work and i just have this feeling that any moment im gonna have another attack. i go back inside and call off work. later i make an appointment with family doc but i made a request that i do not see the doc who diagnosed me with allergies back in august. i explain to the doc what all happened recently with these attacks he does ekg and gives me a script for zanex or alazaphram (anxiety pills) and he orders me to go to the hospitol for more testing. he said the ekg showed an inconsistancy or something like that and he doesnt feel comfortable letting me go home. i failed to mention earlier this whole time, even since the week before, i am having a severe bout with mucus build up in my throat or lungs or wherever. not sure where it was coming from. but it was pretty bad and i was not having an easy time bringing it up. ENT said this was a radiation after effect called mucosis i think. the wife got me mucinex. i swear it made it worse. (i was 15 weeks post radiation)so, i go to hosp they do annother ekg, draw blood, and do a chest x-ray and send me home. wednesday the 27th. my parents call saying they want to visit. they only live a block away and rarly visit but i said sure stop up. apparently when they got here they noticed something was wrong just by the way i was acting and breathing. remember, i told my dad monday night about the breathing problems i was having? turns out thats why they wanted to visit. they took one look at me and said "lets go, your going to the hospital!" i was like "what? i was just there yesterday". they said well, your going again. the whole ride there, i had my head out the window trying to get air. when we got there i really couldnt breath right. i was breathing really heavy. then they got me in the ct scan tube... i lost it completely. thought i was a goner. it was by far the closest i ever came to dying. i think i was in long enough to complete the scan but the last thing i remember was riping the oxygen mask off my face and sitting up while they were pushing me somewhere. i was just totally freaking out. i guess they had to put gloves that resemble boxing gloves on me so that i couldnt grab nothing. to me it was very very bad situation but i would like to say thanks to the staff who made my mom and dad feel at ease. my dad said even though it seemed like a bad situation he felt at ease because as they were shoving tubes down my throat to open up the airway i guess i was blowing spit bubbles and the docs and nurses were saying "awe look at the nice bubbles he is blowing for us" it was then that my parents knew it was not a life threatening situation. that was it i woke the next day in ICU strapped to the bed with a trach in my throat. and a ventilation tube going to it. im going to post in the tracheostomy section soon too. nothing but problems with the trach. if there is any good that came of all this its that this monday will be 3 weeks smoke free. yes i did smoke through radiation but i cut back soooo much, only like 3 a day if that. the ENT did warn me about smoking too. his exact words were "if you smoke during radiation there will be complications" . although he has yet to throw it in my face, i feel like a complete fool. what id like to know is why wont the swelling in my throat go down? im now 4 months post radiation. can anyone relate needless to say im not a happy camper. yea i realize it could be worse but this sucks. my ENT says the trach is most likely temporary. i dont really care if i have a hoarse voice this trach GOTTA GO! but it leaves me to wonder what if i would have just monitored the "mass" on my vocal cord and make sure it dont spread. although it was never given to me as an option im starting to think that would have been the route to take. good luck

 
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Old 03-19-2013, 12:06 AM   #3
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Re: Please Read and share your experiences.

Thank you so much for your response...

I am being sent to an ENT first thing in the morning, had another dose of antibiotics and steroid treatment today. Still no improvement. I am hoping it is Tonsillolith as it is a much better outcome than Cancer of course. I have to keep positive, but I must admit I am concerned. I will update after I get home from my appointment.

 
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Old 03-25-2013, 05:08 PM   #4
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Re: Please Read and share your experiences.

Refuse to leave the Hosp. or Dr. office until they do a biopsy. Tell them you think the mass in your throat could be throat cancer. That if it was Strep Throat the antibiotics would be working by now. That your getting worse and have new symptoms. Demand they do something other than give you pills and send you on your way. Or that the next time they see you you 'll be in the emergency room. I'll Pray it is only Strep Throat. GOD BLESS YOU

 
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Old 03-25-2013, 09:48 PM   #5
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Re: Please Read and share your experiences.

i dont think rufusing to leave till a biopsy is performed will work. its gotta be scheduled. and like most hospitals im sure they are booked that day. one thing it will do is maybe light a fire under their asses. yea, you do need a biopsy. my advice would be to work on getting one scheduled. that would be great if you gan get it done right away. the sooner the better. gotta take what they give ya. i know when i got my biopsy the worst part was waiting 5 days for results from the pathologist. we were originally supposed to wait two weeks. the "not knowing" got the best of my wife so she called and got it move ahead by 9 days. that part was great. however the news he had wasn`t so great. but i got the i`m gonna win attitude. even though cancer might be winning now, i plan on mounting a hugh comback and ultimetly KICKING CANCERS ***! i could only imagine your situation. you need a biopsy period. good luck with everythingl and look me up if u need to talk about "what to expect".i had a well, i dont need to tell the whole story again. its posted above. again....good luck and try not to drive yourelf crazy thinking about it. ttyl

 
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Old 03-26-2013, 12:24 AM   #6
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Re: Please Read and share your experiences.

Dear Sir, Your the reason for my post to Mommytosix. After reading your post I was mad as H---. It seems to me that you went through a lot of needless suffering because of incompetence. Maby? take these pills-take a hot shower-Can't take the time to look in your throat. But I have to thank you. Because of your posts my SISTER will know what to watch for in her up comming treatment. I first read your posts 3-22-13. Your last post at that time was 3-16-13. I wrote a note to myself. "Look for more posts from tannster99, Please God let there be more." I'm new at this and have much to learn. God Bless You

 
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Old 03-26-2013, 03:09 PM   #7
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Re: Please Read and share your experiences.

I went to see the ENT, they put me on more antibiotics for the infection, which I am glad to say did clear up but not till after I also got an infection at the IV location as well. However although the swelling and infection have gone away I still have a hard lump (lymph node) on my neck. And I can still feel something in my throat. They were not that interested in looking into cancer as they said it would be unlikely as I don't have a family history and am only 34. It was a very rushed in and out appointment. I go back in late April at which time they said IF they find reason they will look into other possibilities. So I sit and wait.

 
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Old 03-27-2013, 02:23 AM   #8
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Re: Please Read and share your experiences.

valance, im reading your post and thinking, who is she/he ytalking about. then i see it was me.your too kind. (i think she?)awwe, im glad i can be of some sort of help. its not getting any better for me. the latest bs came last week. 2 sundays ago i called with severe stabbing ear pain. i called the ent knowing there was noone there on a sunday i figured i can leave a message and i will be first on the list to be called back. however, the recording i got told me to call the on call doctor. which i did and low and behold i acually spoke whith a human being (i hope they dont charge you for phone calls like lawyers do) he told me to call first thing monday that i really should be seen.mponday i finally slept good and only woke up @ 930. so io called and got appmt. for 2pm. i go there and they have what they call doctors associates (my doc that normally sees me was in surgery. so i got an associate. which is sooooo stupid cuz if the associate scopes me it does absolutly no good because she never scoped me before and wouldnt know if its getting better or not. me and my wife wrote down about 15 questions we had. (tell your sister to ASK ALOT OF QUESTIONS. AND YOU CAN GO WITH HERE. FOUR EARS LISTENING TO THE ANSWERS ARE BETTER THEN 2.) anyways i explained to the associate about this stabbing ear pain im having and she perscribed me antibiotics. one a day i take for 10 dayus. well, i only took 2 and no more it made my mouth feel like it was filled with cotton. i felt like i couldnt breath. so i called back and left a message of coarse explaining that i am not taking no more that i must be allergic to it and that if they want to put me on something else to call me. the next day they called and said ok stop taking tyhem and go to you pharmacy we`re sending you a diffgerent script to try. i said you may want to let them know, that those two pills i did take might have been strong enough cuz the STABBING ear pain is gone. there is still a little ear pain but its not stabbing like before. she said "well the antibiotics we`re giving you AREN`T FOR YOUR EAR". "its for your broncitus and an infection. I was blown away. ***? i go there cuz im in pain with my ear and they treat me for something else. and didnt even tell me. as if thats not bad enough, i go to my scheduled appmt 2 days later and my original doc comes in and says so you have pneumonia? i said " i do, thats news to me" i still really dont know what the hell is going on. im so close to leaving this doc. i see him in 3 more weeks. i hope everything works out with your sis. if you have any questions i will try my hardest to answer them. again good luck.

 
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Old 06-03-2013, 03:33 AM   #9
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Re: Please Read and share your experiences.

update: been a while since i posted. first, thank you valance, im glad my posts are helpful to you. more bad news for me...being the swelling never went down.my ent knocked me out again to go in and "look around" found another mass and its recurring cancer. 1 of the many things that just pisses me off is my ent said he couldnt get a good view with the scope so after the results from this last biopsy showed recurring cancer he sent me to thomas jefferson university kimmel cancer center. the docs were about to scope me when i said "this might bew a waste of time. my ent couldnt see anything with the scope". well this doc scoped me and seen it right away. ***? id hate to switch ent`s but i just dont get it. now its been at least 5-6 weeks that this cancer could have been back (maybe longer) its to the point where im coughing up blood. i read its cause the cancer is growing and breaking blood vessels in the process. IF ANYONE HAS ANY INPUT ON WHY I AM BLEEDING ID LIKE TO HEAR FROM YOU. laryngectomy is scheduled for the 18th. the way it sounds there arent many options. in the meantime, if anyone has questions let me know. ill do my best to answer them. wish me luck. i`ll report after the surgery.

 
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Old 06-03-2013, 06:56 AM   #10
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Re: Please Read and share your experiences.

Hi tannster,

I'm sorry I don't have any advice regarding your Cancer but I would like to say how much I admire your courage and the way you express yourself.
You deserve every good wish and our prayers for your forth coming surgery and if anything at all should get you through this then its your spirit and courage alone.
You have been through an awful lot and it seems you have had a lot of conflicting advice from your Drs.

I for one will pray for your future health and send you my best wishes,
Keep us updated and the best of luck,

Solofelix.

 
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Old 06-03-2013, 04:59 PM   #11
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Re: Please Read and share your experiences.

thanks again, like a few of my drs. said ...."you gotta live for today" sounds easy and im trying my hardest but man,....some days it is soooooo freakin hard. thanks for your support. it might be a while before you`s all hear from me but ill try to keep yas updated. i find words like yours very encouraging....again....THANKS ALOT

 
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cancer, mouth cancer, throat cancer, tonsil cancer



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