Husband starts treatment next week--primary is tonsil

I've been lurking around on this site since my husband's diagnosis on Aug. 11.  It's been a great resource and even though I'm scared, I have a lot of hope as well.  His started like much of your stories...found a lump on the right side of his neck in March.  His primary doctor sent him for a CT right away and to an ENT. They did a needle biopsy which came back negative for cancer, but his ENT recommended that they remove the lump to make sure.  Since the needle biopsy came back negative, he didn't feel a sense of urgency to get it removed so he waited until after our summer vacations to get it removed.  So we were shocked when the doctor told us it was cancer.  The lump was on one of his lymph nodes.  PET scan showed no other cancer and didn't pinpoint primary, so ENT took out his right tonsil on Aug. 20 and it turned out to be the primary.  We told the doctor that we were OK with him removing both tonsils, but he said he recommended only the right one being removed (we were concerned about that decision, but we went with his recommendation).  In any event, the cancer in the right tonsil was very small so he is T1, N1, M0.  His cancer is HPV negative, and although he never smoked, he dipped for 20 years, although he quit 4 years ago.  We are going to get a 2nd opinion at Moffitt Cancer Center in Tampa (we live in North Florida) next Monday, mainly to make sure we are comfortable with the treatment he has gotten so far and will be getting in our home town.  My husband wants to try to work as much as he can during treatment (he is in management, so it's mainly a desk job, although high stress) so he wants to do treatment at home if possible, but we also want him to have the best treatment so willing to go to Moffitt if needed.  The doctors here treat all kinds of cancer--not just head and neck--I wish he could get treated by head and neck cancer specialists, but if not, I'm hoping the Moffitt doctors can consult with our local doctors.  I do have to say though, that we have been very impressed with the cancer center here and the radiation and medical oncologists we've met with.  They have told us the treatment will be 7 weeks of radiation, 5 days a week on an IMRT machine that they say is only 2 year old so it's "top of the line" and chemo 1 day a week during those 7 weeks (or possibly chemo 3 times during those 7 weeks), with Cistiplan.  We meet with chemo doctor tomorrow so I'm sure he will tell us exactly what he plans to do.  My husband had mask made last week (said it was "weird" but didn't seem to have too much anxiety about it).  Assuming Moffitt tells us to proceed, he will start radiation next Tuesday.  Dr. does not want to give him a PEG right away--wants to wait and see how he does.  After reading so many stories though, I'm worried because my husband is 6'1" and weighs 164 pounds (with no clothes).  So he doesn't have a lot of weight he can lose.  We've been trying to fatten him up.  He is 47 years old, and in really good shape (he is a runner).   His employer has been great and if he needs it, he can take short term disability.  It sounds like some folks have been able to handle it without a PEG and so my goal is to get him through it with lots of high calorie foods that are easy to swallow so that he doesn't end up losing a lot of weight.  The closer we get to his treatment though, the more anxious and scared I get--I guess it's the fear of the unknown.  Anyway, sorry this is so long, but it feels good just being able to write down my concerns and have a place where I can find lots of good information and others that have been through it.  I will try to post updates along the way. 

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Sounds like you have a plan

    Lots of us never need a feeding tube.  I actuallly went through radiation  completely twice, for two different cancers and never needed a feeding tube, so it is not guaranteed he will need one.  Feeding  tubes don't solve all of life's problems; they definitely have a complication rate all on their own, so there is quite a bit of controversy about everyone automatically getting one.   The second opinion is fine.  One thing you might ask the second opinion facility as well as the original treatment physicians is "why the chemotherapy?"  Your husband has a very favorable tumor, the kind that is not always treated by chemo, so I'd ask for the rationalle behind that.   The medical oncologists and radiation oncologists are always generalists, they are not ever specialists in head and neck cancer.  So long as your facility delivers IMRT and has the expertise to design the treatment fields, which it sounds like they do, I don't think you are making any big mistake sticking to the local group for therapy. 

    Glad to hear from you.

     

    Pat

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group; Tallymom

    Welcome to the H&N and sorry you need to be here. I only had surgery so I will let the others help with Rad questions.  I was T4,N2,M0 before surgery and after it went down to T3,N0,M0, they removed the SCC surpraglottic just above my larnyx. Yney remover the larynx and did neck dessection on both sides to remove 86 lymph glands. But I still have both tonsils, go figure. As long as there were right there I thought they would take them, but they left them alone.

    It sounds like you have a good plain and are ready to go down the bumpy road. It has it's bumps, but you will get through it. You might have your husban try to bulk up a little. He will lose some weight and doesn't have much to spare. I'm 5'7" and was doyn to 137 lbs [was 152 before I got sick] and droped down to 126 lbs and very pale. [Had great abs though]. Add proteen and milkshakes to get as many cal as he can. He can get back to his weight after the battle is over.

    Remember this is very hard on the caregiver/lover one as it is on the one with cancer. The differance is He gets the attention and you don't. Take care of you and get rest as well.

    Will keep you both in our prayers.     You both will get through this.

    Bill

  • tallymom
    tallymom Member Posts: 3

    Sounds like you have a plan

    Lots of us never need a feeding tube.  I actuallly went through radiation  completely twice, for two different cancers and never needed a feeding tube, so it is not guaranteed he will need one.  Feeding  tubes don't solve all of life's problems; they definitely have a complication rate all on their own, so there is quite a bit of controversy about everyone automatically getting one.   The second opinion is fine.  One thing you might ask the second opinion facility as well as the original treatment physicians is "why the chemotherapy?"  Your husband has a very favorable tumor, the kind that is not always treated by chemo, so I'd ask for the rationalle behind that.   The medical oncologists and radiation oncologists are always generalists, they are not ever specialists in head and neck cancer.  So long as your facility delivers IMRT and has the expertise to design the treatment fields, which it sounds like they do, I don't think you are making any big mistake sticking to the local group for therapy. 

    Glad to hear from you.

     

    Pat

    Feeding tube and chemo

    Thank you Pat. Glad to hear many are able to make it without a feedimg tube. As far as the chemo, we were told that it is a lower dose and that it is being used to make the radiation work better. We will definitely ask Moffitt for their opinion on that as well. 

  • tallymom
    tallymom Member Posts: 3
    wmc said:

    Welcome to the H&N Group; Tallymom

    Welcome to the H&N and sorry you need to be here. I only had surgery so I will let the others help with Rad questions.  I was T4,N2,M0 before surgery and after it went down to T3,N0,M0, they removed the SCC surpraglottic just above my larnyx. Yney remover the larynx and did neck dessection on both sides to remove 86 lymph glands. But I still have both tonsils, go figure. As long as there were right there I thought they would take them, but they left them alone.

    It sounds like you have a good plain and are ready to go down the bumpy road. It has it's bumps, but you will get through it. You might have your husban try to bulk up a little. He will lose some weight and doesn't have much to spare. I'm 5'7" and was doyn to 137 lbs [was 152 before I got sick] and droped down to 126 lbs and very pale. [Had great abs though]. Add proteen and milkshakes to get as many cal as he can. He can get back to his weight after the battle is over.

    Remember this is very hard on the caregiver/lover one as it is on the one with cancer. The differance is He gets the attention and you don't. Take care of you and get rest as well.

    Will keep you both in our prayers.     You both will get through this.

    Bill

    Thanks Bill

    Thanks for the words of encouragement.  He is eating much more than he normally does--he is just not a big eater and naturally slim. I wish I could give him some of my extra weight. LOL. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Tallymom....

    to this wonderful group of people.  Sounds to me like your hubby is getting the regular treatment (by that, I just mean the 35 rads and 3 Cisplatins....or the weekly lower dose).....Feeding him all he can stand from now till about 2 weeks in will hopefully add some weight....tho he sounds a little like me, in that weight doesn't come on easily.  Eating usually doesn't get dicey until after the 2nd week, tho tastebuds tend to go first.

    I'm glad you found us before treatment starts......this is a good place to get information, to vent, to ask questions....all questions get answered!

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member

     

    tallymom,

    Welcome to the H&N forum

    There is a list of “must haves” in the Superthread, you might check it out.  Being prepared is one of our mottos.

    If he needs a PEG, he has plenty of time to get one, they have shelves full of them.

    Hands down, the best and easiest advice I got from H&N before me was to drink lots of water and swallow often.

    Good luck with everything!

    Matt

     

  • Guzzle
    Guzzle Member Posts: 710
    CivilMatt said:

     

    tallymom,

    Welcome to the H&N forum

    There is a list of “must haves” in the Superthread, you might check it out.  Being prepared is one of our mottos.

    If he needs a PEG, he has plenty of time to get one, they have shelves full of them.

    Hands down, the best and easiest advice I got from H&N before me was to drink lots of water and swallow often.

    Good luck with everything!

    Matt

     

    peg

    Hi, I had very similair (left tonsil) and treatment. Got through without a tube. Some useful UK blogs gammaraygary and Theo the radioactive man at word press (neither me). Useful guides to treatment. Good luck to hubby. G.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    tallymom said:

    Thanks Bill

    Thanks for the words of encouragement.  He is eating much more than he normally does--he is just not a big eater and naturally slim. I wish I could give him some of my extra weight. LOL. 

    Cheesecake

    In advance of my second radiation course, I was concerned about losing too much weight.   So I immediately started eating as much cheesecake as I could.  I ate up to a whole cheesecake a day.  I managed to gain ten pounds between my diagnosis and when rads and chemo slowed me down.   Seriously.   Nothing wrong with this approach, but go for calories, not salad.

     

    Pat

  • jim and i
    jim and i Member Posts: 1,788 Member
    Praying for minimal side

    Praying for minimal side effects and success at the end of treatment.

    Debbie

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome...

    Lakeland here... I had my treatment at the Center for Cancer Care and Research - Watson Clinic -Lakeland... It's affiliated with Moffitt.

    I was STGIII SCC Tonsils and a Lymphnode - HPV+

    I had a similar Tx plan, with an additional nine weeks upfront of Cisplatin Taxotere and 5FU, then seven weeks of Weekly Carboplatin and the 35 daily rads.

    I too didn't have the PEG, but had a few pounds to play with. I lost a total of 42# over the sixteen weeks.

    BTW, that was in early 2009, clean and clear since concerning that.

    Again, welcome...

    John

  • Goyca
    Goyca Member Posts: 220
    Hello Tallymom,
    wish ur

    Hello Tallymom,

    wish ur husband an easy ride. As my friends said, let him drink a lot.

    its gona be hard, but it will pass. Best of luck.

     

    Goyca.

  • granmudder
    granmudder Member Posts: 41 Member
    Hello Tallymom

    first of all youve found a great site informative and supportive.. my husband finished treatments on the 20th of august he to had 35 rads and 3 cysplaiton.. we also didnt know he had cancer as biopsies were negative untill he had surgery.. he was stage 4a cancer they removed 3 masses... also in right tonsil and base of tongue and node. He has never had a peg lost 40 lbs.. we fattened him up by about 15 lbs before starting treatments he was operated april 8 .. he has just started eating food i make him lots of high protein shakes.. bought a nutribullit yesterday... its not going to be easy there is no way to sugar coat it and it willl be tough on you,, ive kept a journal to vent to before i found this site. It is scarey the chemo is hard i stayed in the hospital with him for the overnights,.. ask lots of questions. i could go on as iwe are still going though this and will be im certain for at another few months.. hang in as the caregiver and partner.. trust me it can be tough but hold on tight. we will know for certain end of december if its gone next pet scan...