Update from 8/29/14 post

Today went to the Radiologist.. He is a radiologist/oncologist.. And.. I am stage 4... not 3 like they first suspected.. the tumor is larger and more damage than originally thought..according to the PET scan.. he also found a lymph node in my neck that looks suspicious.. he wants a new MRI and another CT scan to over lay them and see what he thinks and if still bugging him.. a needle biopsy. Also having my lower teeth pulled.. along with a feeding tube. I have some filled cavities on lower jaw so he wants them out to be on the safe side. So now instead of just my upper face they will be radiating down to my shoulders.

I get the feeding tube on Tuesday, just to have it in place, later in week, teeth pulled, and then scans next week I think. 7 weeks every day radiation  M/F.. and chemo ( Erbitux )  once a week.. then when cancer free or remission.. they will need to reconstruct my face. They think they tumor already ate through several bones/cartilage. Will know more when each visit I guess..He did say he has seen a tumor in the nasal passage before but only a couple times, and had success treating them, so that made me smile.

Feeding tube sounds scary to me.. anyone had any issues with this? Or is it easy to be able to feed myself with?

And what about the lymph node? Dangerous?  It sounded like it to me from what he said. He said the tumor he thought was treatable and could shrink it, but the lymph node if over looked might be a death sentence?  Does that sound right?  I admit I am nervous and did try hard to listen and take notes this time.

Kritter

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    moving along

    Kritter,

    The install of my PEG tube was easy, I have had two.  It normally is an in and out procedure.

    I had 1 lymph node removed (jugular vein dissection) when I had my tongue worked on.  This was very easy for me, fortunately.  I was to pay my dues later in treatment.

    My rad onc talked directly with my dentist and all my teeth were given the “all’s clear” signal.

    Your plan sounds pretty typical for H&N.  They are going after the cancer full speed.  It is not unusual to have  a number of scans to determine the field of treatment.

    Good luck, you should do fine.

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    CivilMatt said:

    moving along

    Kritter,

    The install of my PEG tube was easy, I have had two.  It normally is an in and out procedure.

    I had 1 lymph node removed (jugular vein dissection) when I had my tongue worked on.  This was very easy for me, fortunately.  I was to pay my dues later in treatment.

    My rad onc talked directly with my dentist and all my teeth were given the “all’s clear” signal.

    Your plan sounds pretty typical for H&N.  They are going after the cancer full speed.  It is not unusual to have  a number of scans to determine the field of treatment.

    Good luck, you should do fine.

    Matt

    Kritter

    Sounding like what most here have been through. I had a g-tube vs. PEG and found it very easy. Remember, with any feeding device, it is still very important to keep swallowing or you can lose the ability. If cancer is in the lymph nodes in neck, they will need to be treated as that is how cancer travels. Many, if not most of us, have had lymph nodes involved. Radiation itself is not difficult, 10-15 minutes a day, it is the side effects, long and short term that can be hard on you. You won't get every side effect and the ones you get can be varying degrees. 

    Prayers for an easy journey

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    kritter, i had a neck

    kritter, i had a neck dissection and had 43 nodes removed.  many of us have.  the feeding tube was the easiest part of this whole deal.  i had one thru my nose first then was changed to one that came out my stomach.  praying you have smooth tx and very few side effects.  we'll be here cheering you on.

    God bless you,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    First....worry not about the

    the feeding tube.....it is most minor part of everything you're looking at.  From the minute they knock you out till you wake up is about 45 minutes.  Mine was pretty tender for a couple of days, then it eased off.....and by the end of treatment, it was my best buddy.  The biggest problem I had with it, was where to stash the tube....down my pants?  In my bra?  Tape it?  Get a wrap?  I found lycra/cotton camasoles with a built in bra on Amazon that held it snug against my body, made it invisible under my clothes....nice colors so I could wear them tucked out under my sweaters and shirts.   Make SURE they tell you how to use it before they send you out.  Nobody told me, and when I finally needed to use it, I had no clue how it to do it.....

    I had infected lymph nodes on both sides of my neck.....my Dr. decided to radiate them and see if they'd go away....they did....but would have had them removed after rads were over if they had not shrunk.  Every Dr. seems to have their own method.....take the nodes first....or wait and see how it goes after.  From everyone who has talked about it, getting rid of the nodes is pretty easy....

    You won't be using the tube right away....so eat eat eat :)......Somebody else mentioned, but I will reinterate......swallow something everyday....water, peaches, milk, something to keep that swallower swallowing.......they had me terrified of losing the ability.....so I made sure something went down the gullet on a daily basis.

    Just remember.....one day at a time.....one foot in front of the other......stay in the day.  It's going to be alright!!

    p

  • corleone
    corleone Member Posts: 312 Member
    Sorry you have to go through

    Sorry you have to go through this crap. I had/have nasopharyngeal carcinoma (NPC) stage 3, treated 2 years ago with concurrent radio and chemotherapy, followed by chemo only. No surgery. During my last follow-up in May, I was still in complete remission. 

    I am not clear what type of cancer you have; the NPC can also invade the ethmoid bone, so you might have the same as I did, or maybe not.

    Anyway, a few comments:

    - Don’t be afraid of the feeding tube. It sounds horrible, but it’s more of a nuisance, as you have to take care of it (how to fix it against your belly, to flush it, etc). The procedure itself is quick, just a bit painful. I had some minor complications, with intense pain the first couple of days, but that’s rare. After that it was OK;

    - Not sure about pulling your teeth. I didn’t have any pulled, although I had a few with root canal and fillings. I even have a wisdom tooth on my mandible, that they (maxillofacial surgeons specialized with onco patients) didn’t consider that had to be removed. Keep asking that. The risk is osteonecrosis, even years after radiation, but you can have that regardless of teeth being pulled or not (except when they are in bad shape).

    - I had 2 big lymph nodes on both sides of the neck (4.5 cm each). They were sensitive to both radiation and chemo and went away; there was no need for surgery after that. 

    - The lymph nodes are not in themselves a big issue, as long as they are contained in the neck and head area (above the collar bone). If they are found below, it means the cancer spread beyond what it is considered to be “highly curable”.

    - The fact that it spread to the bones around the nasal area, that’s significant. It means that you’ll need to have the radiation targeted in those affected areas, and you need a highly experienced onco radiation MD and team. In other words, a big onco center with resources and experience.

     

  • jim and i
    jim and i Member Posts: 1,788 Member
    So sorry you are facing this

    So sorry you are facing this ordeal. The feeding tube will make it easy to get the hydration and nutrician you need. Praying all goes well.

    Debbie

  • wmc
    wmc Member Posts: 1,804
    Neck dissection......

    I had the neck dissection on both sides as a precation if it came back it wouldn't  spread. They took 48 on left side and 38 on right side, all were negitive. I have no disfiguring and the right side all the feeling came back. They don't think I will get the feeling back on the left side but that is not a problem. No problems with my sholders. [They took my larynx at the same time] This is why my left side is so numb. I didn't have any RADs or chemo, so no PEG, but I did have the NG tube in my nose. I would chose the PEG if I had the option. It's cold when it goes in your nose and the tube can get your throat sore. Mine was only in seven days and went past my stomach to the intestines. [GURD] After the PET scan I was T4,N2,M0, but after the surgery it went down to T3,N0,Mo, stage 3, much better. There many factors that can make it a 4. If lymph glands are involved, or the size, will change your staging, but it can be reduced after the TX. Will keep you in my thoughts and prayers. Remember, only today matters and it can be a good day.

    Bill

  • donfoo
    donfoo Member Posts: 1,771 Member
    buddy time..

    Kritter,

    It sounds like you went to the RO appt along. It makes a big difference if you can go with someone who can help take notes and just have an extra pair of ears as it is common the patient suffers from missing the full picture.

    The PEG is a simple procedure but in the other recent thread I feel pretty strongly that it is best to wait to get one until needed unless there is specific reason to PEG early.

    It is not clear to me what your diagnosis is, maybe you don't have one as the RO is still requesting more tests. Has cancer been detected in multiple regions? Both in the nasal area and the lower jawbone? Was that why they want to remove all the lower teeth?

    You mention "reconstruction" but from what I read I am not sure why that is the case if you are doing chemo and rads. This treatment rarely causes sufficient damage short term to require major surgery post tx.

    Anyway, hope all goes well and keep reading up if you are so inclined.

    Don

  • Kritter
    Kritter Member Posts: 147
    CivilMatt said:

    moving along

    Kritter,

    The install of my PEG tube was easy, I have had two.  It normally is an in and out procedure.

    I had 1 lymph node removed (jugular vein dissection) when I had my tongue worked on.  This was very easy for me, fortunately.  I was to pay my dues later in treatment.

    My rad onc talked directly with my dentist and all my teeth were given the “all’s clear” signal.

    Your plan sounds pretty typical for H&N.  They are going after the cancer full speed.  It is not unusual to have  a number of scans to determine the field of treatment.

    Good luck, you should do fine.

    Matt

    Full speed

    I believe they are finally getting started on me. The radiologist/oncologist noticed the lymph node the other guys overlooked when they wrote out my diagnosis. I am glad he caught it, may not be an alarm, but worth checking into. 

    Feeding tube will be okay, just this whole process scary. I think they just want to get it in as my teeth will be removed, will be hard for me to maintain my weight. I have already gained 16 pounds but then lost 5. Nothing tastes good, can't smell anything. Can't breathe through my nose. But I am alive!.. 

    Thanks for the info.. and you keep doing great.

    Kritter

  • Kritter
    Kritter Member Posts: 147
    hwt said:

    Kritter

    Sounding like what most here have been through. I had a g-tube vs. PEG and found it very easy. Remember, with any feeding device, it is still very important to keep swallowing or you can lose the ability. If cancer is in the lymph nodes in neck, they will need to be treated as that is how cancer travels. Many, if not most of us, have had lymph nodes involved. Radiation itself is not difficult, 10-15 minutes a day, it is the side effects, long and short term that can be hard on you. You won't get every side effect and the ones you get can be varying degrees. 

    Prayers for an easy journey

    HWT

    Such brave people on this site, what is the difference in the g-tube versus the PEG?  The Doctors are worried my throat will get very sore.. not looking forward to side effects, but will tackle them if I get them. And I will follow your advice and swallow. Thanks so much !

    Kritter

  • Kritter
    Kritter Member Posts: 147

    kritter, i had a neck

    kritter, i had a neck dissection and had 43 nodes removed.  many of us have.  the feeding tube was the easiest part of this whole deal.  i had one thru my nose first then was changed to one that came out my stomach.  praying you have smooth tx and very few side effects.  we'll be here cheering you on.

    God bless you,

    dj

    DJ

    Thank you DJ.. and I am praying for you as well. You have certainly been through a lot, from what I read on your profile. I am sure the lymph node nothing to worry about but glad they are suspicious of it. 

    Kritter

  • Kritter
    Kritter Member Posts: 147

    First....worry not about the

    the feeding tube.....it is most minor part of everything you're looking at.  From the minute they knock you out till you wake up is about 45 minutes.  Mine was pretty tender for a couple of days, then it eased off.....and by the end of treatment, it was my best buddy.  The biggest problem I had with it, was where to stash the tube....down my pants?  In my bra?  Tape it?  Get a wrap?  I found lycra/cotton camasoles with a built in bra on Amazon that held it snug against my body, made it invisible under my clothes....nice colors so I could wear them tucked out under my sweaters and shirts.   Make SURE they tell you how to use it before they send you out.  Nobody told me, and when I finally needed to use it, I had no clue how it to do it.....

    I had infected lymph nodes on both sides of my neck.....my Dr. decided to radiate them and see if they'd go away....they did....but would have had them removed after rads were over if they had not shrunk.  Every Dr. seems to have their own method.....take the nodes first....or wait and see how it goes after.  From everyone who has talked about it, getting rid of the nodes is pretty easy....

    You won't be using the tube right away....so eat eat eat :)......Somebody else mentioned, but I will reinterate......swallow something everyday....water, peaches, milk, something to keep that swallower swallowing.......they had me terrified of losing the ability.....so I made sure something went down the gullet on a daily basis.

    Just remember.....one day at a time.....one foot in front of the other......stay in the day.  It's going to be alright!!

    p

    phrannie

    Thanks so much for the note. I love your attitude! My worry is I can't breathe through my nose. It is 80 to 85 percent blocked. Wondering how thry will put me under if I can't breathe while they scope my throat and stomach. I will make sure they explain it to me and I found a video on * you tube* that shows how to use it and clean it. Very informative.

    My concern was as the Doctors that my cancer may have spread there, so that is what he wants to find out. I don't think so, as he couldn't feel it, but there the little thing was all lit up. 

    Eat ?? that is my issue.. I am not hungry.. could go all day and not eat unless I force myself to eat, which I am doing. And drinking ensure when I don't feel like eating. And this bothers me. 

    You are right.. I will take one day at a time and try to stay positive. 

    Thank You.. you are such a beautiful person to have been through this and help others.

    Kritter

  • Kritter
    Kritter Member Posts: 147
    donfoo said:

    buddy time..

    Kritter,

    It sounds like you went to the RO appt along. It makes a big difference if you can go with someone who can help take notes and just have an extra pair of ears as it is common the patient suffers from missing the full picture.

    The PEG is a simple procedure but in the other recent thread I feel pretty strongly that it is best to wait to get one until needed unless there is specific reason to PEG early.

    It is not clear to me what your diagnosis is, maybe you don't have one as the RO is still requesting more tests. Has cancer been detected in multiple regions? Both in the nasal area and the lower jawbone? Was that why they want to remove all the lower teeth?

    You mention "reconstruction" but from what I read I am not sure why that is the case if you are doing chemo and rads. This treatment rarely causes sufficient damage short term to require major surgery post tx.

    Anyway, hope all goes well and keep reading up if you are so inclined.

    Don

    donfoo

    My husband was with me but he is as scared as I am, he has always cared for me and treats me very special. He helped me understand more when we left the office. 

    I believe they want the PEG in as they are concerned I am losing weight now before the procedure and will have trouble eating when my teeth get pulled. Our family has horrible teeth, in fact my niece got full dentues by age 12. I have several cavities that were filled and a couple that need work, so we chose to just pull them. I already have a full top plate as it is. So no big deal to pull my bottom teeth.

    My diagnosis.. is rare.. he said.. as I have a lemon/tennis ball sized tumor in my nose. It has ate away the cartlidge on the top of my nose and ate the bones in the ethmoid area. I can't breathe through my nose very good. 80-85% blocked, and when infection sets in, I can't breathe through it at all. It is right between my eyes as well. My throat and mouth not affected. They will have to reconstruct when the tumor shrinks or is gone, as the bones are affected. If they do the surgery first they said it would disfigure my face horribly. So going this route. And I will need a speech therapist to learn to talk again. I will learn more on that later. Right now, the goal is to try to shrink the tumor. He is requesting more tests to determine just how large the tumor is and what bones are affected. 

    I have been doing some research as well, and learning from this site, but trying to avoid all the misinformation on the internet.

    Kritter

  • Kritter
    Kritter Member Posts: 147
    corleone said:

    Sorry you have to go through

    Sorry you have to go through this crap. I had/have nasopharyngeal carcinoma (NPC) stage 3, treated 2 years ago with concurrent radio and chemotherapy, followed by chemo only. No surgery. During my last follow-up in May, I was still in complete remission. 

    I am not clear what type of cancer you have; the NPC can also invade the ethmoid bone, so you might have the same as I did, or maybe not.

    Anyway, a few comments:

    - Don’t be afraid of the feeding tube. It sounds horrible, but it’s more of a nuisance, as you have to take care of it (how to fix it against your belly, to flush it, etc). The procedure itself is quick, just a bit painful. I had some minor complications, with intense pain the first couple of days, but that’s rare. After that it was OK;

    - Not sure about pulling your teeth. I didn’t have any pulled, although I had a few with root canal and fillings. I even have a wisdom tooth on my mandible, that they (maxillofacial surgeons specialized with onco patients) didn’t consider that had to be removed. Keep asking that. The risk is osteonecrosis, even years after radiation, but you can have that regardless of teeth being pulled or not (except when they are in bad shape).

    - I had 2 big lymph nodes on both sides of the neck (4.5 cm each). They were sensitive to both radiation and chemo and went away; there was no need for surgery after that. 

    - The lymph nodes are not in themselves a big issue, as long as they are contained in the neck and head area (above the collar bone). If they are found below, it means the cancer spread beyond what it is considered to be “highly curable”.

    - The fact that it spread to the bones around the nasal area, that’s significant. It means that you’ll need to have the radiation targeted in those affected areas, and you need a highly experienced onco radiation MD and team. In other words, a big onco center with resources and experience.

     

    corleone

    I am sorry you had to go through it as well, but glad you are here to help us newbies. 

    I have stage 4 nasal cavity cancer with ethmoid invasion. In my other posts it will describe it more. But my nose is full of a huge tumor. Or the Doc's call it huge. They said very rare, but can be treated. I will have to be very determined that this will work and be patient with the procedure and be willing to fight!.. 

    They wanted to pull 7 teeth, I said why, just take them all. My family has horrible teeth, they tend to crumble, but weird is they don't hurt. Unless you inspect them every day, you don't realize they are needing worked on. I would just rather get this over with, and have one less thing to worry about later. 

    So far that is the only lymph node, and he is supicious of it. So taking a better look at it. 

    I have faith in the doctors I am seeing, as they are highly accredited in their field. In fact my radiologist is also an oncologist. And he has seen this type and treated it once before with great success. If I do get worried I amn not that far from Md Anderson. 

    So happy to know that you are in remission! I hope to be there soon myself!

    Kritter

  • Kritter
    Kritter Member Posts: 147
    jim and i said:

    So sorry you are facing this

    So sorry you are facing this ordeal. The feeding tube will make it easy to get the hydration and nutrician you need. Praying all goes well.

    Debbie

    Thanks Debbie

    Thanks Debbie, sounds like I was worried for nothing. I will update as I can, and I send prayers your way as well.

    Kritter 

  • Kritter
    Kritter Member Posts: 147
    wmc said:

    Neck dissection......

    I had the neck dissection on both sides as a precation if it came back it wouldn't  spread. They took 48 on left side and 38 on right side, all were negitive. I have no disfiguring and the right side all the feeling came back. They don't think I will get the feeling back on the left side but that is not a problem. No problems with my sholders. [They took my larynx at the same time] This is why my left side is so numb. I didn't have any RADs or chemo, so no PEG, but I did have the NG tube in my nose. I would chose the PEG if I had the option. It's cold when it goes in your nose and the tube can get your throat sore. Mine was only in seven days and went past my stomach to the intestines. [GURD] After the PET scan I was T4,N2,M0, but after the surgery it went down to T3,N0,Mo, stage 3, much better. There many factors that can make it a 4. If lymph glands are involved, or the size, will change your staging, but it can be reduced after the TX. Will keep you in my thoughts and prayers. Remember, only today matters and it can be a good day.

    Bill

    Bill

    You went through a lot and I still love that video you posted. 

    They can't put anything in my nose, it is blocked with a tumor. So the PEG, which I worried about, but now know it is nothing compared to the rest of what I have to go through. 

    They thought it was stage 3, until they saw the PET scan, now they are saying stage 4. As the tmor larger than they thought and looks like more bone damage. I may not look the same when this is over if they do the reconstruction, if they have to cut my face instead of doing it endoscopic. The nasal passage my not be big enough if too much damage was done I was told. But I will be alive and that is all that matters!.. 

    You keep doing great !

    Kritter

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Kritter

    I had stage 4, full neck dissection, feeding tube (through the nose), and a tracheotomy.  I also had to have teeth removed before radiation and the again afterwards because of the radiation. Sounds like you have a lot on your plate but I feel confident with all the fine people on this site there will be many hands extended to walk you through anything.

    You had concerns with breathing during surgery which shouldn’t be an issue because they will most likely give you a breathing tube during the procedure. You will wake up and will never know it was there.

    Stay positive, practice swallowing, keep hydrated, and don’t hesitate asking questions here and with your health care team.

    Thoughts and prayers

          Jeff

  • katenorwood
    katenorwood Member Posts: 1,912
    Hello Kritter !

    I didn't have the peg, but my brother did.  He did well with it.  And it sounds like your doctors are spot on with things.  Try not to over think the lymph node thing.  My brother had several involved, and after tx's they've resolved.  Your doing the right thing by writing down info. given to you.  Is someone else going to your appointments with you ?  Sometimes it's good to have another set of ears along for the ride.  Thoughts and prayers your direction !  Katie

    As usual didn't read all the posts.  Glad to hear your hubby is beside you in this crappy walk.

  • donfoo
    donfoo Member Posts: 1,771 Member
    Kritter said:

    donfoo

    My husband was with me but he is as scared as I am, he has always cared for me and treats me very special. He helped me understand more when we left the office. 

    I believe they want the PEG in as they are concerned I am losing weight now before the procedure and will have trouble eating when my teeth get pulled. Our family has horrible teeth, in fact my niece got full dentues by age 12. I have several cavities that were filled and a couple that need work, so we chose to just pull them. I already have a full top plate as it is. So no big deal to pull my bottom teeth.

    My diagnosis.. is rare.. he said.. as I have a lemon/tennis ball sized tumor in my nose. It has ate away the cartlidge on the top of my nose and ate the bones in the ethmoid area. I can't breathe through my nose very good. 80-85% blocked, and when infection sets in, I can't breathe through it at all. It is right between my eyes as well. My throat and mouth not affected. They will have to reconstruct when the tumor shrinks or is gone, as the bones are affected. If they do the surgery first they said it would disfigure my face horribly. So going this route. And I will need a speech therapist to learn to talk again. I will learn more on that later. Right now, the goal is to try to shrink the tumor. He is requesting more tests to determine just how large the tumor is and what bones are affected. 

    I have been doing some research as well, and learning from this site, but trying to avoid all the misinformation on the internet.

    Kritter

    Unusual case

    Hi,

    In your case with an uncommon/rare cancer, do seek at least a second opinion from a specialist cancer center like MD Anderson or one near you. Make sure your case is reviewed by their tumor board. If there is an option, you might still consider switching to a CCC.

    Personally, I support cancer treatment at local facilities fully except for unusual cases which I believe should be handled by doctors who treat oral cancer everyday as those centers collectively have far more experience with handling unusual or complicated cases as your. Good luck, Don

  • donfoo
    donfoo Member Posts: 1,771 Member
    IMPT

    You mentioned MD Anderson. Has IMPT been discussed? I would at least inquire if this is an option for you as it might offer better outcomes and less side effects.  http://www.proton-therapy.org/intensity_modulated.html