Hi, I'm Andrea, my mother Jane has tounge and throat cancer she was told in November 2006, finally got someone to give a straight answer about her stage yesturday, told us it is
T4 N2B M.
We have been told no surgery and she starts 6 weeks of radiotheraphy total of 68 gams on Monday 26.2.07. Her chances they say are 20 - 40%, she says that isn't very much and sometimes thinks she should not have the treatment. Mum is already NIL by mouth because they think she isn't swallowing properly and could aspirate, thank God she already has a feeding tube in place.
Mum is worried about the side effects, she thinks she might not be able to breath when she wears the mask if there is any swelling from the treatment, does anyone have any experiance of this?
Mum is only 68 yeard old, she is so brave and I can't imagine her not being here.
I'm so scared that she will have this treatment and life will be awful for her after and she will wish she had never bothered.

Hi AndreaEve,

Traditionally there is not swelling from radiation treatments. It is quite the opposite.

It seems as though your doctors are taking the approach of radiating to kill as many of the cancer cells as they can before making their next move. With that stage of cancer it is a common choice of some doctors.

Nutrition is going to be very important for her during the radiation treatment. I can not stress this enough. Make sure she gets at least 2000 calories a day. You might even think about seeking the advise of a nutritionist. You doctors can help in this matter.

Good luck and keep us informed.

Jim

AndreaEve,

I have a neighbor whose 93 yr old mom (that's right 93) is just starting rad Tx for oral cancer. The docs also told her no surgery and no chemo. She is wearing the mask and I know her. She is one tough lady and I hope she will remain tough throughout her Tx. She is being treated in Jacksonville, Fl so I won't be able to physically be with her but I have spent many hours preparing her and her caregivers as to what to expect. At first her daughters didn't tell her what was going on. I mean nothing, not even that she had cancer. She was even about to begin her 30 IMRT sessions and she still was totally unaware of what lay ahead. Finally I convinced them to tell her and she was pissed they kept her in the dark.

We all wore the mask and we all survived. I have read of some that needed to be calmed down before each session so I'm sure that's available. My heart was pounding the frist time they clamped me down but the next time I was prepared and it didn't bother me anymore. I also listened to loud music which helped take my mind away.

The issue with the mask is more a feeling of claustrophobia that causes the feeling of not being able to breathe. My husband took Ativan before every treatment just so he could do it.

Yes there are side effects with radiation, but the progression of the disease without treatment is even worse. Have they discussed combined radiation and chemotherapy with your Mum? The N2b indicates she has lymph node involvement. With any of these treatments just make sure they explain their rationale so she can make an informed choice.

Medical teams are used to getting questions and we found it helpful to make a list every time we went...otherwise you get swept up in the visit and forget half of what you wanted to ask.

Regards JoAnne

Hi AndreaEve-

I just finished my radiation and I was very nervous about laying there in the mask. Getting fitted for the mask was much more stressful than any of the actual treatments, and that was because I had no idea they were going to make the mask, I thought I was just getting a CT scan.
My radiation therapists cut out holes for the mouth, eyes and ears to poke through which helped a lot. Also, the radiation therapists leave the room during the radiation but they are watching and listening very carefully and if you need a break or you're feeling sick you just wave your hand and they come running. Once I had a coughing attack and they came right in and got me out of the mask right away. I think they are some of the most upbeat and kindest people around.
Hope that can ease your mother's mind a little bit.
Mel

It is also important to try and keep your weight up for the sake of mask fitting. I lost 40 pounds during Tx course and toward the end my mask was not fitting as it did originally. This raised concern although I did not have to have a new one made.

Bill D.