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New here -- tongue cancer

Katmir
Posts: 21
Joined: Jun 2009

being brand new to this cancer thing, i'm hoping to gather information. researching on line is doable and important yet i yearn to cut to the chase if possible!

my mom was diagnosed with tongue cancer in march. since, she's had it removed (surgery) and is recovering at home. radiation (5x week) is next.... then, another surgery for thyroid cancer.

is there anyone out there who can share information about what to expect with all this? my greatest frustration is not knowing all the terminology and procedures. up to this point, it's one big whirlwind and we've simply done what the docs told us we had to do. we haven't been given any paperwork describing her diagnosis with terms, etc. that i can look up to understand. i see everyone talking about stages and cancer-type terms and plans-- i'm not talking the talk and need to learn!

with gratitude,

~k

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You are asking for a veritable medical dictionary! My advice would be to read back through previous posts to get a sense for what mom can expect. While each of us brings something unique to the table, you will find, I think, that there is also much commonground.

If you have time, go to the member pages for some of the users who post; some of them may even have blog entries. I know that I have a rather extensive page AND blog, if you are interested.

Probably the BEST thing you can do is to attend when your mom visits her doctors, with questions in writing, updated after each visit. AND, personally, I would ask for copies of all records as they are created; these will usually be provided free of charge on this basis, but if you later decide you want all of them at once, they are likely to charge you a nice chunk of change.

Best wishes to mom and her family.

Take care,

Joe

Katmir
Posts: 21
Joined: Jun 2009

thanks, joe.

i do go to all the appointments and have been amazed that there's never language used that i don't understand. truthfully, i'm grateful for that as docs so often speak their own language and i'd be complaining otherwise! but with that said, i can't take notes and go look up stuff later as up to now it's been the simple "you've got cancer on your tongue. you'll have surgery. this is what you can expect from surgery. you're doing great. next comes radiation." i don't mean to make light of that-- we love her docs and trust them completely! but they tell us and we do it has been the extent of stuff so far.

anyway, you're absolutely right about what i'm asking for.... too much! i'm the lame brain there. duh. i'll do some blog reading-- yours sounds like a great start... and i'll get those papers of moms. while the docs always ask if there are questions, we never have questions at the time. besides, mom doesn't want to know all the details, so i try and respect that.

you're a survivor, i assume?? blessings to you. and, joe... thanks again.

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

You might want to come into the chat room so you can ask survivors, like myself, and others all the questions you can come up with.

Katmir
Posts: 21
Joined: Jun 2009

thank you for throwing that out there! i'm timid when it comes to chat rooms.... it may be time to get over it!

pennynl4
Posts: 49
Joined: Jun 2009

I know you must be overwhelmed. There is so much to learn. So sorry about your mom.

My husband also has tongue cancer. That was the primary site. It had spread to his lymph node and had it removed along with other lymph nodes that were non cancerous.

All I can say is to ask the doctors questions you have at the next appointment and take notes. Your right...it is a whirlwind.

My husband hasn't been given any paperwork with stages or cancer terms either.....just more appointments.

How long ago did your mom have her surgery?

She is lucky to have you by her side.

Take care and let us know how she is doing.
Penny

Katmir
Posts: 21
Joined: Jun 2009

ohh my gosh.... thank you, penny!! your validation tells me so much.

mom had surgery june 4th. she's home now. we're waiting on the call for radiation treatment start date (asap).

it must be really something to support a spouse with this darn disease. i imagine there are commongrounds with our two cases, yet.... deep down, i can't help but know in my heart that going thru this with a spouse is devistating.

do you mind questions? you are welcome to ignore them if it's too difficult (i totally promise it won't hurt my feelings!). i'll thrown them out there, in case!

* did your hubby have radiation?
* do you know if there are other meds that need to be taken with radiation?

i've other questions but will stop there for now.

blessings to you and your hubby on this journey. it would be a privilege to follow your story.

~k

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

mtcarrieann makes a very wise point re mom's rad treatments: a good after-treatment lotion is not just recommended but vital. My rads (I also had 35 treatments over 7 weeks) were the exact same, and with the same rad doc, as another guy at the same time.

Me, I had the fortune of being married to a wound care nurse, so I used something called Biafene religiously after treatment. The other guy ended up back in the hospital will obviously severe burns.

The one thing I will add to mtcarrieann's post is that whether you use biafene or natural aloe or aquaphor or something else, be sure that it is water-based rather than petroleum-based, as the oil-based stuff apparently tends to be absorbed and actually create more burn problems. And, in any case, it should be applied AFTER treatment, rather than before, unless advised otherwise by Rad Doc.

As for other meds during radiation, I am not aware of any, although as a claustrophobe, I DID take a small dose of valium prior to each treatment. Others have indicated they did something similar, while still others find no problems with it.

Again, best wishes to mom and family.

Take care,

Joe

Katmir
Posts: 21
Joined: Jun 2009

joe,

it's awesome you offered info about something i've yet to know to ask..... thank you!

ok-- i'll definitely look into biafene (prescription? over the counter?).

i've read parts of your blog. your humor is extraodinary! love it!

is the mask something they make for every rad patient? i don't believe mom is claustrophobic but i do know she has difficulty laying down flat as she's got a choking thing. this is something i'll address with docs upfront now that i know. (if counting, you're about to score another goal!!)

mom is having a good week... still waiting to hear about that rad schedule.

hope today's full of the good stuff for you!

getting off the bench,

~k

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

K, biafene was prescription when I got it, but I understand it is now OTC. I tell you, even docs and nurses use it when they go on vacation to prevent sunburn :). I know this first-hand. Still, others swear by NATURAL aloe (an important distinction) while others have been happy with aquaphor.

I do suspect that based on your report of mom's experiences to date, which are similar to mine, she will be fitted for a mask. It will probably cover her entire face and head (front side) along with torso down to a point (and when the lotions post-rad are applied, they need to be applied to upper torso as well, as this area tends to burn the most, and even in my case, with great care taken to prevent burns, it became like a turtle shell for awhile).

The application will be of a very warm 'melted plastic' feel, which will cool quickly, harden quickly.

When being used, typically it will be bolted to the table, to prevent any movement of the head. Mom's hands are also likely to be restricted during the experience. I highly recommend music in the background, as both a relaxer and a timer. I figured every song was three minutes long and thus knew that between song 10 and song 15 I was done.

The radiation itself is not painful, although it is tiring for many.

There IS that nasty concern about mucous accumulation. Like your mom, apparently, I had that to contend with. It is simply something she will need to deal with. I drank water and usually ejected whatever was in my mouth/throat immediately prior to getting strapped down, and then remembered that if I interrupted things we would have to start over :). Talk about incentive!

Mom will be fine with this. And if she discovers, again, that she DOES have issues with lockdown, as it were, a sedative CAN be described.

All of the above may turn out to be completely incorrect in mom's case, of course, and is based strictly on my own experience :).

Again, best wishes to mom and her family.

Take care,

Joe

Katmir
Posts: 21
Joined: Jun 2009

hi again, joe!

good call on the music.... mom has her piano pieces going here at home all the time. she even had it playing while in the hospital from her laptop-- the nurses would purposely come into her room to take a moment of peace! (she loved that!)

sooo, do we bring iPod with ear buds??

is life pretty much back to regular living for you again? hope so.

:)

~k

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

There is not likely to be any Ipod permitted inside of her mask :). As a matter of fact, since we are sort of on the subject, it is important that mom have a teeth cleaning prior to going into radiation if she has not yet done so.

For very good reason, they want nothing alien hanging around in or around mom's face and upper torso while the nuking is going on. This is particularly true of the teeth (and Ipods). The teeth can take a beating from rads, they really can.

As for the music, it is likely that there will be a boom box, radio, or stereo system around, and if not, you can bring one.

Take care,

Joe

pennynl4
Posts: 49
Joined: Jun 2009

My husband had his first chemo yesterday and did rather well. He will go once a week for that. He hasn't started radiation yest, that will start next Tuesday. He had his mask made last Thursday on the 18th. So I am too still learning about all this.

I don't know about meds with radiation....I was going to call before we went and ask if he should/could take a Lorazapam before he went.....just to calm him. Go ahead and ask any questions, but I am new at this too and maybe we can both get them answered from everyone here.

This is such a helpful site and everyone is great. It's like we are all good friends!

You're right. It is devastating having my husband go through this. The scary part comes with the radiation ....they say about after the second week is when the pain will start.

Try and get your mom to put some weight on and have her eat real good now before she has problems eating. My husband is drinking Ensure Plus and will try some other drinks like Boost. He had lost weight during his radical neck dissection on May 20 from the anesthesia and I am still trying to get him to gain that weight back.

We are going on a weekend trip to take our daughter to a concert in Tacoma before he starts radiation next week. I won't be on much this weekend , but will be back on probably Monday or Tuesday.

Take care and let me know how everything goes.....you and your mom will be in my prayers.
Penny

Katmir
Posts: 21
Joined: Jun 2009

hey thanks, penny!

sure hope your weekend goes great!! what fun. i look forward to hearing the scoop when you return!

well.... we're sorta outta luck in the gaining weight area. mom weighs 85#. she's always been a peanut-- 95# was a normal weight all her life. as she's aged, she's lost some more but has maintained 85 for at least the last 3 years. so i'm a bit flumaxed as to how we're gonna handle this issue and have it on my doc/question list now. (thanks to you!) she's being fed thru a peg so there's no chance to sneak in some yummy goodies. doesn't that stink??!

have tons of fun and be safe!!

~k

Rainbow2110
Posts: 6
Joined: Jun 2009

Hi
I thought I would share my story with you, but you MUST ask the doctors all that you have questions/worries about, & if they are not clear do say so, as some I have found that some people would rather not know the full details. Remember they are being paid to care for YOU!

I live in Uk England & I too have just completed my rounds with Thyroid Cancer Papillary Carcinoma. The doctors didnt give me much info either so thank god for the Internet, as I have found out all I need to know & suprised the docs with my knowlwdge. This is the most curable type so they keep saying!

I had only one half of the Thyroid removed in Jan 09 found to have a 2cm lump that was cancerous, had 2nd surgery to remove 2nd half in Apri 09, it hasnt spread any further than the Thyroid, but due to the size I had High dose of radioactive Iodene treatment in May, I have agreed to a clinical trial that is currently being run over here, so I didnt have to stop taking my Thyroxine, just had an injection on both days before I was admitted.
Throught out all of this I have carried on working fulltime & caring for my 3½ year daughter, its been tough but you get through it.
I hope you find all the info you need & love to your mum!
H

Katmir
Posts: 21
Joined: Jun 2009

thank you, rainbow!!

i promise to be pro-active with docs. the easiest response to your very appreciated offering is up to this point, we've been told only about moms needs now. it was silly of me to assume that when docs said the cancer was removed and gone that she was actually "done."

that aside, her cancer found it's way to the thyroid. docs knew this but didn't share it until her follow up appointment. you're very right by saying some people don't want to know and i'll go further by acknowledging the docs understood this of my mom. as for me.... i'm more comfortable knowing what she's up against.

i have learned that this type of cancer is the most curable. i have joy in that.

may i ask you questions?

with such a young family and an active life, you have my greatest of respect. i'm grateful for your time and send my blessings to you.

thank you again, ~k

mtcarrieann
Posts: 8
Joined: Jun 2009

Hi,
I hope you get this I am a cancer survivor of tongue / oral cancer was diagnosed in Oct of 2007 have had 2 surgeries and radiation I had 7 wks radiation make sure you mom wheres no lotions or anything on her skin during the sessions and after the sessions be sure to use like aloe and moisturizers on her neck and face and do not forget the top of her back depending on her mask they have for her for radiation and were they are shooting it she can lose her hair I did in the lower back I lost mine they fasten you down to the table during your sessions to make sure you do not move.If you ask about it the will explain the people whom I dealt with were great and every supportive I was at St Joes i do not know were you are but i am sure they will be great if you have any question please feel free to ask i am here for you !!
rememeber to keep the faith it will get you through it all
mt

Katmir
Posts: 21
Joined: Jun 2009

mt,

thanks for all the great info! today i'm looking into lotions to prepare.

was your 2nd surgery thyroid, by chance? that's next after rad for my mom.

you mentioned losing hair in your lower back. this has taken me by surprise! i was preparing for mom losing hair on her head. hmmm.

yup. faith is something we're all about.

hope today is full of the good stuff for you. thank you so much for helping us.

~k

mtcarrieann
Posts: 8
Joined: Jun 2009

Hi,
You are so welcome I am glad I can help:-) as your mom goes through the radiation she will get like really bad sun burn like i said depending on were they are shooting my neck got bad but they gave me aquaphor to put on it and it worked really well so you might want to look into getting some or ask them for some there at the clinic the ointment is what i used.
No my 2nd surgery was a recurrence I had the thyroids taken on the first surgery. They say I am rare cuz I had a recurrence like 4 wks after the 1st it was in a different place on the tongue I am a non smoker and non drinker so ya.
As for the hair loss ya I lost it were the radiation was being shot so like I said depending on were they are targeting your mom ask lots of question about it I did they are really good about answering and helping.Are you at a cancer clinic?
Your mom will get real tired after the first week maybe even nauseated so don't get surprised. I am 1 yr from my last treatment as of May 2nd I am trying to remember everything to help make it a lil easier for your mom.
Did they take any of your moms saliva glands?? with the radiation she will probable lose some of them ask. Because then eating becomes a lil hard. some people get put on a peg ( feeding tube)I did not i lived on ensure like I said you really need to ask alot of question to see how this is all going to affect your mom so please ask away so this way you will have no surprises.
well I hope i helped you a lil more wishing you and your mom the best
take care
MT

Katmir
Posts: 21
Joined: Jun 2009

they took 1/2 her tongue and all of her right side lymph nodes out. saliva glands are still there and fully functioning.

yes, they put a peg in during her surgery. it's to stay in until further notice.... for this, i'm grateful. i already see the many benefits. smart docs!

her surgery (and all her upcoming stuff) is at our university's medical center that specializes in cancer-- we're very fortunate to live right in the area. so many travel so far to get here. that's gotta suck in the biggest of ways....

you've helped so much!! i'm-- no, WE'RE so grateful.

~k

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Doctors seem to be ambivalent about its effectiveness (and maybe by now they have written it off altogether) but I was prescribed something called amifostene (sp?) to be administered by injection (two shots each time) prior to each round of rads. The hope was that it had some positive effect in saving the salivary glands. I would at least ask about it.

It is amazingly expensive (I believe each shot, and, again, there were two each day, ended up costing about $400, maybe a bit more) but was covered by insurance ONCE PRESCRIBED.

Just another random thought....there is really so much that we don't even think about as we venture in to this thing.

Take care,

Joe

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