Appointment for tests and set up for rads..a little scared

Options
pjm929
pjm929 Member Posts: 26
edited July 2012 in Head and Neck Cancer #1
I have appointment for July 10, for tests and whatever else they have to do and I assume they will set up my appointments on that day. I had tonsil cancer and radical neck dissection, all in same surgery. They removed 17 lymph nodes and out of those there were 7 that were cancerous. I'm feeling better every day but now I have this ahead of me and from what I have read, it's not going to be an easy trip. I am, as you can see, new on here but I visit every single day. Dr.said that they got all the cancer but he wanted me to have 30 treatments to make sure it doesn't come back Any advice I can get from any of you would be greatly appreciated. I am female, 62 years of age
«1

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    Welcome
    Welcome to the club that no one wants to be in. You have found a wonderful site for help and encouragement. One thing that you need to look for is the Superthread. A wonderful member put together information on anything you might need during and after treatment. I just found another site, probably more info than you need, but informative--My Voice Itzhak Brook MD--some have already read his book, I've just ordered it, website has tons of information. Do you have a caregiver, family and or friends that can help you get through this? Where are you located? Some CSN members find out that they live close enough to visit. Radiation is very doable, not a picnic, but we got through it, you can too.
  • pjm929
    pjm929 Member Posts: 26
    Options
    KTeacher said:

    Welcome
    Welcome to the club that no one wants to be in. You have found a wonderful site for help and encouragement. One thing that you need to look for is the Superthread. A wonderful member put together information on anything you might need during and after treatment. I just found another site, probably more info than you need, but informative--My Voice Itzhak Brook MD--some have already read his book, I've just ordered it, website has tons of information. Do you have a caregiver, family and or friends that can help you get through this? Where are you located? Some CSN members find out that they live close enough to visit. Radiation is very doable, not a picnic, but we got through it, you can too.

    Yes, I have help from my family
    Right now I am staying with my Aunt. she's 72 but is way more energetic than me, even before the cancer. I switch back and forth between here and my youngest son, but he and his family are on vacation this week. I livw in Madisonville, KY.
  • ratface
    ratface Member Posts: 1,337 Member
    Options
    pjm929 said:

    Yes, I have help from my family
    Right now I am staying with my Aunt. she's 72 but is way more energetic than me, even before the cancer. I switch back and forth between here and my youngest son, but he and his family are on vacation this week. I livw in Madisonville, KY.

    You can do this
    30 radiation treatments will be tough but doable. You don't mention any chemo? July is about the same time I started in 2009. Lousy month to start radiation, but then again there aren't any good ones. Your next step is probably a fitting for a mask and a visit to the dentist. How are your teeth? Open up, let me seeeee? say aahhhhhh. Have they talked about a feeding tube? How about a meeting with a nutritionist??? a baseline swallow test perhaps??? Just trying to acclimate you to all the possible appointments that you might be facing. It will seem like somebody threw you in a blender and set it to whirlwind. By the end of August the blender will spit you out as a seasoned smoothie and you will have completed those rads. Stop in here along the way for small rest periods.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    pjm929 said:

    Yes, I have help from my family
    Right now I am staying with my Aunt. she's 72 but is way more energetic than me, even before the cancer. I switch back and forth between here and my youngest son, but he and his family are on vacation this week. I livw in Madisonville, KY.

    Bless your aunt!
    She might also want to read the Superthread, or print it up for her to have a reference. Will your aunt or son be able to drive you to some of your appointments? With the neck dissection you will get better weekly, but it takes awhile to get more movement in your neck to drive comfortably. I drove myself to most of my treatments but I didn't need to take any meds for anxiety. I did have a few times that I was sick or dizzy and my husband drove me. The techs at my center were great. Walked me through everything that was going to happen, they will also give you samples of cream or aquaphor (you will need these). You will eat differently during treatment, my husband had a hard time with throwing out food, you need to get past it. Sometimes what tasted ok oneday tastes horrible the next day. Protein is important, greek yogurt is higher in protein than regular yogurt, look into a protein powder to put in smoothies (I drank alot of Smoothies). You might look at Rebecca Katz site. She is a chef that has developed some recipes for cancer patients, some recipes are on her site. Magic Mineral Broth is fantastic during treatment and a great broth that my family uses for everything now.
  • pjm929
    pjm929 Member Posts: 26
    Options
    KTeacher said:

    Bless your aunt!
    She might also want to read the Superthread, or print it up for her to have a reference. Will your aunt or son be able to drive you to some of your appointments? With the neck dissection you will get better weekly, but it takes awhile to get more movement in your neck to drive comfortably. I drove myself to most of my treatments but I didn't need to take any meds for anxiety. I did have a few times that I was sick or dizzy and my husband drove me. The techs at my center were great. Walked me through everything that was going to happen, they will also give you samples of cream or aquaphor (you will need these). You will eat differently during treatment, my husband had a hard time with throwing out food, you need to get past it. Sometimes what tasted ok oneday tastes horrible the next day. Protein is important, greek yogurt is higher in protein than regular yogurt, look into a protein powder to put in smoothies (I drank alot of Smoothies). You might look at Rebecca Katz site. She is a chef that has developed some recipes for cancer patients, some recipes are on her site. Magic Mineral Broth is fantastic during treatment and a great broth that my family uses for everything now.

    Appointments
    Well, I probably won't have to see a dentist, since I have dentures. :) From what I've read on here for the past week, there is a lot more to this than I thought. I lost 24 lbs. from the surgery and I suspect I will lose a lot more from the rads. I had a terrible time with the inside of my mouth, and it's still not completely well. I dread having to go through that again and realize that it may be worse. As far as the mask they have to make..they may have a problem with that. I am very claustrophobic and am prone to panic attacks, especially in a situation like that. Hopefully, it won't be as bad as I'm thinking. Where do I find this Superthread?
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    SPOHNC
    Support for People with Oral, Head and Neck Cancer--great information. There is a free booklet (wonderful organizer during treatment) under Place an order, booklet is free, We have Walked in Your Shoes--A Guide to Oral, Head Neck Cancer. I found this very helpful. Ratface lives where they have support groups, check the site and see if there is a group in your area.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    pjm929 said:

    Appointments
    Well, I probably won't have to see a dentist, since I have dentures. :) From what I've read on here for the past week, there is a lot more to this than I thought. I lost 24 lbs. from the surgery and I suspect I will lose a lot more from the rads. I had a terrible time with the inside of my mouth, and it's still not completely well. I dread having to go through that again and realize that it may be worse. As far as the mask they have to make..they may have a problem with that. I am very claustrophobic and am prone to panic attacks, especially in a situation like that. Hopefully, it won't be as bad as I'm thinking. Where do I find this Superthread?

    Search
    There is a box in the top right of the page. Type in Superthread and it should come up. John (Skiffin) will probably attach it as soon as he reads the post. I am technologically challenged! If it is not on the first page of the threads it will be on the second. Sweet usually brings it up weekly. For information only. Please do not post on the Superthread.
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    pjm929 said:

    Appointments
    Well, I probably won't have to see a dentist, since I have dentures. :) From what I've read on here for the past week, there is a lot more to this than I thought. I lost 24 lbs. from the surgery and I suspect I will lose a lot more from the rads. I had a terrible time with the inside of my mouth, and it's still not completely well. I dread having to go through that again and realize that it may be worse. As far as the mask they have to make..they may have a problem with that. I am very claustrophobic and am prone to panic attacks, especially in a situation like that. Hopefully, it won't be as bad as I'm thinking. Where do I find this Superthread?

    24 lbs. Already
    Other people will chime in about calories. This is not a time to diet. I did not have a feeding tube, I did lose weight. The first time I was weak for a long time, the second time (yes, I'm a two timer!) I realized that I needed to up the protein (and meat doesn't work during treatment).
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    Welcome Pam...
    as KT said.."to the club nobody wants to join"...For sure read the Super Thread, there is one whole part dedicated to starting radiation.

    I read that, and asked lots of questions here, and at the rad Doc's...and got many things lined up and in my house before I started. One thing the rad tech told me to get was Calendula cream at the Health Food Store. Very healing stuff...I never did use the Aquafor, just to greasy for me...but I did go thru the Calendula cream for babies. I also ordered Manuka cream off of Amazon, and used that for the places that were very burned on my neck.

    As I'm sure you've heard everyone is different...but rads are doable. I just finished on June 15th with 35 treatments....it's just a matter of one day at a time, one foot in front of the other during this part of treatment. Day after day of the same schedule seems to make it go faster, once you're used to it. Fatuge is a huge factor with rads, so plan on getting plenty of rest, and stay hydrated...I'm still drinking about 60 ozs of water per day....plus a gallon of mile every other day

    You will get thru this!!

    p

    PS...I was one who needed a ride everyday, but I was getting amifostine everyday, also....I took lorazapam for nausea, which made me very sleepy by the time rads were done, so hubby drove me. This too, all depends on the person, and how they feel.
  • pjm929
    pjm929 Member Posts: 26
    Options
    KTeacher said:

    24 lbs. Already
    Other people will chime in about calories. This is not a time to diet. I did not have a feeding tube, I did lose weight. The first time I was weak for a long time, the second time (yes, I'm a two timer!) I realized that I needed to up the protein (and meat doesn't work during treatment).

    Weight loss,
    No, it isn't a time to diet but in most of our cases, we don't diet...we just can't eat! I remember, when I was in the hospital, I went the last two days and didn't eat a thing. I only took in enough water to swallow my normal, everyday med's and some days I couldn't even do that. The mouth soreness is just unbearable. It's almost like having a mouthful of those canker sores that are so very painful. Only thing is, you can get rid of those in a couple days, this soreness doesn't seem to want to go away. I think i may go ahead and buy some Boost or Ensure and see if that will work, in case I can't eat later on.
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    welcome
    Hi pjm929,

    First off, enjoy the 4th of July and eat any and everything you love over the next month and a half (and include all the healthy proteins and stuff that is recommended).

    Now, welcome, glad to meet you and I am here to tell you this isn’t all bad. Just consider, you are doing your part to help your doctor finish your treatment. Like has been said here, many times before, you can go thru these radiation treatments the rest of us have and there are some pretty scared people here (me included). All I can say is don’t borrow trouble by thinking to far ahead, take it one step at a time, ask for help, ask questions here and at your doctor.

    Things are going to really move fast until treatments begin, be prepared.

    Best,

    Matt
  • pjm929
    pjm929 Member Posts: 26
    Options
    CivilMatt said:

    welcome
    Hi pjm929,

    First off, enjoy the 4th of July and eat any and everything you love over the next month and a half (and include all the healthy proteins and stuff that is recommended).

    Now, welcome, glad to meet you and I am here to tell you this isn’t all bad. Just consider, you are doing your part to help your doctor finish your treatment. Like has been said here, many times before, you can go thru these radiation treatments the rest of us have and there are some pretty scared people here (me included). All I can say is don’t borrow trouble by thinking to far ahead, take it one step at a time, ask for help, ask questions here and at your doctor.

    Things are going to really move fast until treatments begin, be prepared.

    Best,

    Matt

    Thanks
    thanks for all the answers and encouragement. I think I'll take Matt's suggestion, and have something to eat! :) Will post more after my appointment on the 12th, unless I think of another question. Have a great day!
  • pjm929
    pjm929 Member Posts: 26
    Options
    CivilMatt said:

    welcome
    Hi pjm929,

    First off, enjoy the 4th of July and eat any and everything you love over the next month and a half (and include all the healthy proteins and stuff that is recommended).

    Now, welcome, glad to meet you and I am here to tell you this isn’t all bad. Just consider, you are doing your part to help your doctor finish your treatment. Like has been said here, many times before, you can go thru these radiation treatments the rest of us have and there are some pretty scared people here (me included). All I can say is don’t borrow trouble by thinking to far ahead, take it one step at a time, ask for help, ask questions here and at your doctor.

    Things are going to really move fast until treatments begin, be prepared.

    Best,

    Matt

    Thanks
    thanks for all the answers and encouragement. I think I'll take Matt's suggestion, and have something to eat! :) Will post more after my appointment on the 12th, unless I think of another question. Have a great day!
  • pjm929
    pjm929 Member Posts: 26
    Options
    CivilMatt said:

    welcome
    Hi pjm929,

    First off, enjoy the 4th of July and eat any and everything you love over the next month and a half (and include all the healthy proteins and stuff that is recommended).

    Now, welcome, glad to meet you and I am here to tell you this isn’t all bad. Just consider, you are doing your part to help your doctor finish your treatment. Like has been said here, many times before, you can go thru these radiation treatments the rest of us have and there are some pretty scared people here (me included). All I can say is don’t borrow trouble by thinking to far ahead, take it one step at a time, ask for help, ask questions here and at your doctor.

    Things are going to really move fast until treatments begin, be prepared.

    Best,

    Matt

    Thanks
    thanks for all the answers and encouragement. I think I'll take Matt's suggestion, and have something to eat! :) Will post more after my appointment on the 12th, unless I think of another question. Have a great day!
  • pjm929
    pjm929 Member Posts: 26
    Options
    CivilMatt said:

    welcome
    Hi pjm929,

    First off, enjoy the 4th of July and eat any and everything you love over the next month and a half (and include all the healthy proteins and stuff that is recommended).

    Now, welcome, glad to meet you and I am here to tell you this isn’t all bad. Just consider, you are doing your part to help your doctor finish your treatment. Like has been said here, many times before, you can go thru these radiation treatments the rest of us have and there are some pretty scared people here (me included). All I can say is don’t borrow trouble by thinking to far ahead, take it one step at a time, ask for help, ask questions here and at your doctor.

    Things are going to really move fast until treatments begin, be prepared.

    Best,

    Matt

    Sorry
    Sorry, as you can see my computer got the hiccups!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Options
    pjm929 said:

    Weight loss,
    No, it isn't a time to diet but in most of our cases, we don't diet...we just can't eat! I remember, when I was in the hospital, I went the last two days and didn't eat a thing. I only took in enough water to swallow my normal, everyday med's and some days I couldn't even do that. The mouth soreness is just unbearable. It's almost like having a mouthful of those canker sores that are so very painful. Only thing is, you can get rid of those in a couple days, this soreness doesn't seem to want to go away. I think i may go ahead and buy some Boost or Ensure and see if that will work, in case I can't eat later on.

    Nope
    start on the boost right now. You already have a problem. Dont delay, attack it now. These are your easiest calories. You cant possibly drink too much. I couldnt swallow for a few months prior to my chemoradiation this last winter. Lost 30 pounds. Once they started chemo, I got enough tumor reduction I could swallow again. Anticipating trouble with radiation, I embarked on a weight gain program, consisting of a cheesecake every day. Gained 20 lbs in the two months of chemo before rads. Kept pushing ensure while getting rads. I got through without needing a PEG tube. Be as proactive as you can.


    besr to you


    Pat
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    pjm929 said:

    Sorry
    Sorry, as you can see my computer got the hiccups!

    there you go
    Pjm929,

    Computer hiccups is the first sign you are getting better.

    Best,

    Matt
  • ToBeGolden
    ToBeGolden Member Posts: 695
    Options
    Each Day
    We've all gotten thru the radiation and/or chemo. Everyone is different. but we've all had a loving family and very good healthcare professionals to guide us.

    Eat/Drink as much as you can for as long as you can. I was able to maintain my weight throughout the treatment, but I'm in the minority. I found that taking everything at body temperature produced the least pain on swallowing. I warmed water as if it were a baby bottle. But you will find your own tricks.

    I'll be waiting for you post saying that the treatment is over. Rick.
  • ditto1
    ditto1 Member Posts: 660
    Options
    pjm929 said:

    Appointments
    Well, I probably won't have to see a dentist, since I have dentures. :) From what I've read on here for the past week, there is a lot more to this than I thought. I lost 24 lbs. from the surgery and I suspect I will lose a lot more from the rads. I had a terrible time with the inside of my mouth, and it's still not completely well. I dread having to go through that again and realize that it may be worse. As far as the mask they have to make..they may have a problem with that. I am very claustrophobic and am prone to panic attacks, especially in a situation like that. Hopefully, it won't be as bad as I'm thinking. Where do I find this Superthread?

    Finally I can come to the rescue
    Hi pjm929 Im ditto1 and my wife is TheOtherDitto, (Doug and Diane)on this site. From day one when I first posted I felt the same way you did, although no surgery for me only RADS and Chemo, (did i just say only) I have Base of Tongue with 2 nodes, finished 2 of my Cisplatin chemos (tough but doable) now doing 9 (6 left) Erbitux chemos. But now lets talk the MASK, theres good information on the SuperThread about it, but if you go back and look as some of my old post I was really concerned about the MASK for the same reasons you had and what most folks on this site faced. I realize only you can determine how you will deal with it when the time comes, but let me say It is like many fears the fear is much worse than the reality. Is it easy no but very doable, and remember I just could not imagine how a human could be straped down and not freak. Either way forgive my "come to the rescue" introduction. I guess I finally for the 1st time being in this world no one asked to be in that I could truly send some HOPE. Will be praying for ya, and the nice thing the DITTO's always get 2 prayers for 1. DITTO DITTO
  • hwt
    hwt Member Posts: 2,328 Member
    Options
    pjm929 said:

    Sorry
    Sorry, as you can see my computer got the hiccups!

    Radiation
    I still recall the day my mask was made. The tech told me to imagine I was getting a facial as he laid a warm open weave mesh over my face, a piece of cake! Recently, someone posted that their mask did not have eye holes cut out, personally, I liked having the eye holes cut out and most of the feedback was same. Treatments only take about 15 minutes, no weekends or holidays. Equipment is open and rotates around your head/neck, I did not feel closed in at all. Treatment itself is not painful. Now the bad part, side effects. Everyone doesn't get every side effect but they can get pretty unpleasant(that is sugarcoating it). Some last throughout and some come and go. I think the best approach is to take them as they come and deal with them as they come. Lots of people here to let you know what worked for them when you encounter an issue. Best of luck and I hope you are one that sails through the process.