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My mom has oral cancer (Squamos Cell Carcinoma)

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Hi All,

My mom was recently diagnosed with oral cancer. She has yet to begin treatment. She had one tumor removed, but she also has another large one inside of her cheek and now she finally tells us that she has some cancer cells on her throat (upper part) and the roof of her mouth. She seems pretty secretive about it all. I asked her what stage she has and she said that they don't know yet (is that possible?) 

She protested against having a feeding tube, but the Doctor made her (which I am glad), because I highly doubt she will be able to eat if she has to have radiation in all of those areas. My questions are, what can I do for her? Are the radiation treatments very painful? What type of questions should we ask the doctor?

 

Thank you in advance for your comments and suggestions.

phrannie51's picture
phrannie51
Posts: 3594
Joined: Mar 2012

but so glad you found this forum.  There are so many smart and caring people here, who have been through treatment and will help your mom (via you, I presume)....

First...radiation treatments aren't painful to get.....though there is a cumlative effect as they go on.  Dry mouth, lack of taste, sunburned neck.  They can cause mouth sores....and many people develop a thick mucous, and of course the inside tissues are getting fried on a daily basis, so eating and swallowing can get difficult. 

If it was my mom I'd want to know if they know where the primary tumor is, and what stage her cancer is in....what treatments they propose (chemo and rads?  Just rads?).  Names of the chemo drugs they plan to use. 

What you can do is be there for her.  She may need rides to treatment and other appointments, help with getting proper nutrition, chores around her house so she feels comfortable being there.....and of course, love and encouragement.

Other folks here will come up with more questions to ask....and things to do to help....this is such a great place!!

p

J.R. and June's picture
J.R. and June
Posts: 60
Joined: Aug 2013

Thank you very much for the responses. You guys have already helped me a lot. My mom will be getting radiation every day for 6 weeks (not on the weekends though). They do not know yet if they will have to do the chemo. I presume that they want to see if the radiation is successful on its own. I live 2 hours away from her, but my father is retired and can take her to the doctors visits. I will be seeing her this weekend and will start the journey by bringing her a huge bouquet of flowers.

Are there any vitamins, etc that you can recommend she take for maximum health and healing power?

TracyLynn72's picture
TracyLynn72
Posts: 634
Joined: May 2013

but I've had a couple of friends that have started rads since I finished.  I made them "goody bags" with a nice reusable water bottle for good hydration, Vaseline lip care for the chapped& burned lips, hand lotion with sanitizer in it for being in hospitals so much, a quart size container (along with a box of baking soda and a jar of salt...this makes a great mouthwash for during rads), notecards with encouraging scriptures, a blank journal for them to write their thoughts or questions for their doctors and a card with my email and phone # on it if they needed a ride to their appointment or just to talk.  They all loved it! 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

You have found the best froum on the web I think as for knowledge and experience fro survivors in all phases of treatment and recovery...

As for staging, it's hard to say, and in all honesty, more than likely her treatment would be the same anyway... But from what you describe and if I were to guess, somewhere between STG II - III.

Myself I was STGIII tonsils with a lymphnode, sixteen weeks of four chemos types, and 35 daily rads sessions..., no feeding tube.

The first thread of this forum is called the SuperThread, check it out..., tons of great info on that page.

Many others will chime in and offer support and about anything you can think to ask, they'll contribute answers, thoughts and solutions...

Radiation can be painful for most, everyone is different so for some it was pretty extreme, others like myself it was pretty managable. But from week 3, through about 4 weeks post rads is the worse as for side effects..

More than likely she'll lose all taste or most, and salive for anywhere from a few weeks post rads, to several months... Most will eventually return though.

It's tough, but very doable...

Thoughts and prayers,

John

KTeacher
Posts: 874
Joined: Jan 2011

Thank you for being proactive for your mom.  Please check the Superthread, so much information for the beginning, during and after treatment.  Stay in contact, we can help and guide you to where you can get help.  Does your mom go to appointments alone?  I would encourage that she take someone to take notes.  Sometimes we hear the word cancer and a brain shuts off.  Someone needs to keep notes and often refer back to the notes at further appointments.  Also, write down questions that you want to ask the doctors.

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

J.R. and June,

Welcome to the H&N forum, sorry for your reason for being here.

As said, rads do not hurt, but the side effects from radiation and (possible) chemo do.  While we are all similar, it is difficult to say what she will feel, exactly.

Phrannie covered the basics and it can be better or worse from there.  If you take all the precautions presented here and in the superthread,  I like to think you can make the ride more doable with fewer side effects.

It is a difficult situation which we all have traveled.  Take what you can from us and be prepared for good and bad times ahead.  You almost cannot over prepare.

Before you know it your Mom will be finished and on to recovery.

Matt

TracyLynn72's picture
TracyLynn72
Posts: 634
Joined: May 2013

to what has been posted already, but I want you to know this is the greatest group of people you could have found :)  I'm sorry you have to be here, but this is certainly the place to get answers, support and encouragement.  Definitely check out the Super Thread....it's chock full of information.  

debbiejeanne's picture
debbiejeanne
Posts: 2219
Joined: Jan 2010

i'm sorry about ur mom but very glad u r here.  you will get first hand experience here from us folks who have been or are going thru it.  another idea that may help is to have a calendar for appts only.  there will b a lot of appts at first and u may find it hard 2 keep track of them all.  i think she will b glad she got the feeding tube as swallowing may become painful as tx goes on.  also, have her eat as much as she can b4 tx starts as she will prob lose weight going thru tx.  make sure she drinks a lot of water and stays hydrated, VERY IMPORTANT!  wishing u the best and saying a prayer too.  let us know how she is doing.

dj

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