Hi everyone. I'm a 26 yr old female. My mother recently had a biopsy done of her throat.. Not sure exactly what they call it , but she has a tumor between her voice box and vocal cords. She has been a heavy smoker since she was 18 and is now 46. I have a brother and sister, 15 and 16. My sister stays home with my mom and doesn't go to school. I moved to Nebraska 2 yrs ago and am 12 hrs away. All of this has happned so quickly. She just found out it was cancer a few days ago and she has surgery on the 24th. She didn't want me to know how bad it was but my grandmother called me tonight and said that my mother has to have a voice box, a permanant trach and a feeding tube put in.. I had no idea that it was it was this bad. I'm trying to get home to be there for surgery but money is tight. This is all so overwhelming. I don't know all the details about the type or stage of her cancer but I can't imagine what My siblings and I would do without her. She says everything will be fine but she doesn't know what is really going to happen. I just lost my grandpa to cancer in 06 and my uncle to it on the opposite side of the family, last night. I'm worried sick and it seems throat cancer has a high death rate. So, I guess i'm just looking for ppl that have been through this to give me some information about the whole process and what will happen..

Jexxie,

Try to calm down. Your being upset won't change anything. Sorry about your mom's diagnosis but this site is full of great information and great people to help you and your mom get thru this.

First off try to find out more about exactly what type of surgery she will have. For instance did she mention a neck dissection? See if they Staged her. Where is she being treated? What additional treatment is planned for her post surgery?

Please don't assume that you're going to loose her. I was a Stage IV and as you can see I'm still posting.

She must stop smoking FOREVER.

Hang in there and don't feel guilty about not being there. You stay on this site and you will be her most valuable child in her battle with this cancer.

Jexxie, I know you can't stop worrying. It's a part of human nature and you are going to do it. The best things you can do for you, your mom and your family is to learn as much as you can about this disease. If you can, talk to her Drs and ask them a lot of questions that you have prepared ahead of time. They are real people just like the rest of us and should want to satisfy you with the right answers. Tell them you want the truth and not some tale to make you feel better. I take it that you are the oldest sibling and I would bet the others are looking to you for answers. I have been in this position and it can be tough. Do your best to be there for your family and for your moms surgery if it's possible.That way you can see what is going on and the plans the Drs have for treating her condition. This will enable you to face it head on and maybe ease your pain. Check with the Cancer Society and maybe they can assist you in some way. You and your family are in the prayers.

Welcome to OCF. You will find lots of support here to help you with your questions. I know its upsetting to you, but please try to stay calm so you can think logically. Your mom will need lots of help to get thru this. I hope you are able to find a way to go back home temporarily to help her, your brother and sister. Im sorry to hear of the other family members you have lost to cancer.

Just by having a cancer diagnosis doesnt mean its a death sentence. Many many people live thru this. Treatments arent easy. Surgery is easier most of the time than chemo/radiation. This all depends on many different factors like her age, stage of cancer, location of the cancer, her overall health, etc.

Many cancer treatment centers offer emotional support for family members. I would highly recommend this for your brother and sister. My children were teenagers when I went thru this and they struggled with coming to terms with my illness. As teenagers are usually very self sentered, it takes some adjusting to realize their parent isnt invincible and needs help.

Please feel free to lean on us for support and to answer your questions. There is also tons of info on the main OCF pages.

Hi Jexxie...welcome to OCF. I know this is a hard time, but try to be strong. You are lucky to have found this site...it has changed my life. You will find so much support and information here.

My cancer is on my tongue so I'm not familiar with what kind of treatment she will have. Once you are able to give us more info about your mom's situation the others will be able to help you more.

I look forward to seeing more posts from you and to hear how your mother is doing.

You may also want to add a signature line so everyone knows your situation.

I'm 27 and recently lost my mother. The best advice I can give you in the short time I have at the moment is do whatever you can to get yourself there as soon as possible. The time before the surgery is just as important as the time after. I have teenage sisters as well and they will need you just as much as your mother will.
So in short, get in the car. You don't want to lose any time with your family before her battle begins.
I was away in Maine at college when my mom was first diagnosed so i know how hard it is to leave your life. I had to have an uncle pay for a ticket for me. Just explain to your boss, landlord and whomever else what is going on and provide documentation if they want it and you should be fine. Just remember the most important thing is being with her and your brother and sister.
you will figure it out. Just get there and things will be easier. I am in no way suggesting that your mother will not make it through this. As you can see from the people on this board many many people do! If your mom is anything like mom she will fight like hell. Its great your grandmother is there for her. If your grandmother is able to focus on her care you should be there to back her up and ask questions. You should focus on being there for your sister and brother. I am the second oldest of 7 so I have seen kids handle this at all ages. Be there for them it's the best thing you can do. We can't actually fight the cancer for our mothers but we can help to make it easier for them.
you found the right place.
more later
Amy

Jexxie...I wasn't thinking of this when I first posted but the role of "support person" is a VERY important one. I am reading 2 books called "Crazy Sexy Cancer Tips" and "Crazy Sexy Cancer Survivor" the author says you should assemble a "cancer posse" they are the closest people to us and provide us with different types of support. The one you can cry with, pray with, have fun with, go to doctor appointments with..ect you get the idea. I guess what I'm trying to tell you from a patients point of view...you will be a huge help to your mother. You can find the money...make sure you get there as soon as you can.

If money really is a problem and you don't have credit card for the flight, call the airlines and see if they can provide any type of discount. Or the American Cancer Society. I know there are programs to pay for patients flights for treatment. There may be something for family members, I'm not sure. It never hurts to ask!!

Hi Jexxie,
I am a total laryngectomy since August of 2001 meaning I have a permanent trach. I have a voice prosthesis between my esaphagus and trach on the inside that allows me to speak when I cover the stoma. Is the reason they are giving her a peg tube because they also plan radiation? I had a nasal feeding tube after surgery for about 8 days and then was able to eat soft food. I had had radiation 4 years prior for another oral cancer so did not get any more in 2001.

You did not mention where she plans on having this surgery. If at all possible she should being treated at a CCC hospital. It that is not possible, then one that does this surgery on a regular basis. I also had a neck dissection at the same time. Surgery took about 14 hours. I was in ICU overnight and home after 5 days. I don't remember having any pain although was on meds for a few days. Didn't need the morphine drip at all. She will need home health care for a few weeks to help clean and heal stoma.

If at all possible, you should go to her doctor appts with her and ask lots of questions including getting the staging, how and when she will be able to speak again, is she going to have rads and chemo etc.

Hang in there. Hopefully it is just a nasty bump in the road for her. Post again when you have more info and take a deep breath.

Take care,
Eileen

Eileen, have you looked at these?

http://www.passy-muir.com/products/pmvs/pma2000.aspx

Charm was given one while he had his trach and I just recently got one (Purple 2001) after talking to speech therapist. Essentially, you don't have to cover your trach to speak, the valve closes for you, but opens when you inhale.

Hi Pete,

Thanks for the link. I will review in detail when I have more time. It is my understanding that this value only can be used with whatever that gadget is called that goes down inside the trach. I do not need or use one of those.

Can the passy-muir also be used with an adhesive collar? I've heard of the passy-muir from nurses that took care of me when I had the carotid done. There were very curious about what I was wearing and seemed to feel that it was superior to the passy-muir, although I have no idea why.

I have 3 hands free valves, 2 from InHealth and one from Atos that fit into an adhesive collar that I glue on each morning. I don't use them because I blow the seal on the collar too frequently. I use the Atos HIFlow value because it gives me the best breathing. If you don't know what my gear looks like, I will try to find links for you.

Take care,
Eileen