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Newly Diagnosed.. Looking for Words of Wisdom

TwoDaughters
Posts: 6
Joined: Jun 2009

My mother was just diagnosed w/ tonsil cancer. She appears to be state 2 w/ some in her nodes. She is going to start intensive radiation (2x a day for 2 weeks), then chemo and then surgery to remove the nodes. I live at a 3 hour distance. I'm trying to anticipate the days ahead - any suggestions, helpful hints, words of wisdom? I am planning to travel to stay w/ her weekly. Anything anyone is will to share would be appreciated. I just don't know what to expect and what to expect of my mother (and how I can be of help). Thanks -

TIM_WWJD
Posts: 38
Joined: Jan 2009

I don't know about wisdom but I do have a few words. I also have tonsil cancer. We discovered mine in December and confirmed in January. I don't want to tell anyone how to proceed or really what to do but rather tell you what we did and what some of the results were. At the request of our ENT we did get a second opinion on treatment options. It can't hurt to get other ideas. You will find that no two cancers are the same. Even a cancer in the same area of the body will be different. There are also dozens of ways to do the treatments and every doctor has their own program. You must have faith in your treatment team, your moms life is in their hands so make sure you are comfortable with them.
Ask questions, if you can be there for your mom take a notebook and write things down. Find out what the plan is and what the whole schedule is.
The schedule you posted seems strange, the radiation is not like mine and it accutually seems short. Mine was at the end of treatment and was everyday, once a day, for seven weeks. I didn't even feel the burning for three weeks so I hope your mom will not be feeling pain right away. I didn't have surgery so i don't have any input for that. I do know there are some major surgeries that can be pretty rough but talk to the doctors and get all the information you can.
The chemo was the hardest for me, you must get in fluids. I used Gatoraide because it is cheap and can help boost electrolytes. Nutrition is next and it is hard to keep eating when you don't feel like it.
One of the biggest helps to me was getting as much information as possible and asking questions. Write the questions down for the doctors and use this web site. There are dozens of really good people on this network who have gone through the fire. As I said no two are alike but sometimes it will give you an idea on what to expect. Good luck and may God bless you and your mom.
Tim

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

tired she will be tired, an she will have a sore throat my husband has had 13 treatments and only once a day and his throat is getting a little sore ( so he tells me

TwoDaughters
Posts: 6
Joined: Jun 2009

Has your husband been able to talk still? I read that this can be dramatically affected and I'm wondering how this wil effect her ability to work.

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

he has no problems as of yet but like I said we have 17 more raditation and 3 chemo to go
and hope for the best and I pray alot

TwoDaughters
Posts: 6
Joined: Jun 2009

Thank you - I too thought the treatment seemed a little "off" from what I had read for treatment - but I'm also not 100% positive that I am getting all the info. I have offered to go on the appts. but as of yet, she does not want me there. I did tell her to get a notebook, etc. and I think this is helping. I also started one to log info she does give me and to record any helpful info I am getting from this site. Unfortunately I think the nature of a cancer diagnosis is a "process" and it takes some time to take in all the information/options, etc. You almost always feel behind the eight ball.

When I read about the radiation treatment this morning I started to really stress about the side effects.

Thank you and please continue to share any thoughts, etc... right now it just helps to understand what we may be facing to be prepared. Did you have the surgery to relocate the salivary glands? She needs to decide on this this week and is leaning against it although her main doctor recommends it. Any thoughts.

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

we also are still learing it scares me when I look at all the bloggs but I guess every one is different my husband has head and neck, primary not found he gets radiated from just below his eye and just above his heart and from ear to ear and its because they didnt find the primary
he is getting a feeding tube on thursday his choice I think its to early but I support what he does. Just be there to listen ,but I do think its a good idea if someone goes to her appointments with her. At first our daughter went with us just in case one of us missed something that the doctor was telling us I tried writing every thing down but I just couldnt listen and still write everything. alot o take in at first
God bless and Ill be praying for your family
Linda

heschie's picture
heschie
Posts: 38
Joined: Jun 2009

sorry I didnt answer your question as of right now 13 treatments into it he still has a voice
the surgery was never offered to us. soccerfreak said they gave him some kind of shot to help with his salva glands and that also was never offered to my husband. My husband only had a few treatments and he started taking water everywhere we go. His mouth is so dry he wakes up in the middle of the night to drink water he says his lips even stick toeghter He has that surgery on thursday and I dont kn ow how he will make it until he comes out without anythng to drink in the morning and take with him. He said thy better have alarge glass of water for him when he comes out. I wish they had offered him somethig surgery shot something it breaks my heart that he has to go thru this. I wish I could take it or somhowmake t better for him
I cry alot and I m unsure if that even helps me I now have ulcers in my mouth from stress
Linda

TwoDaughters
Posts: 6
Joined: Jun 2009

I've started keeping a notebook just at my house so I can write notes down and things that my mother shares about her upcoming appts. I am finding it helpful, especially when I talk w/ my sister and we can compare notes to see what the other may have missed, etc.
Sounds like you weren't sure about the feeding tube - but I am all for it. By the time he might need it, he may not be able to have one put in. I think this is a good safeguard that if you don't use - oh, well; but if you need it is priceless. I just got an email from a woman on my prayer line whos husband had this 10+ years ago (and is now cancer free). He had the feeding tube and didn't lose any weight. Let's hope this is the case for your husband and my mom. Linda, I'll keep you and your family in prayers too. - Rebecca

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

One of the other poster's mentioned a second opinion when there is any doubt. If I understood you correctly, your Mom will have radiation THEN surgery? I don't think this is common, but not sure. My ENT said that since I had had the maximum lifetime dosage of radiation to my tonsil/neck/throat area that if the cancer should reoccur that it would have to be treated with chemo only, that surgery in a radiated zone was risky because of the compromised tissue's reduced healing ability. Something to think about.

God Bless..................hang in there, it will get better. JK

TwoDaughters
Posts: 6
Joined: Jun 2009

We are on the third "opinion" already --- so we've delayed enough. I think she's gotten some good advise, but I wish she had moved a little quicker; but it is always good to feel comfortable w/ a choice and as one other post mentioned - you have to trust your doctor team. I think my mom does now. The surgery will be on her lymph nodes - and not the tonsils -- but I will keep your info regarding the surgery b/c I would still be worried about compromised tissue. Thanks again -- all the posts are very helpful! - Rebecca

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