Now I'm Really Confused!

wolfen
wolfen Member Posts: 1,324 Member
in Head and Neck Cancer #1

We saw the Surgical Onc today so stitches at the G-tube could be removed. I brought up the subject of "swallowing" exercises to determine when he felt the appropriate time for starting these would be. He asked if we had seen the Speech Therapist yet. No, not yet. So an appt. will be scheduled with her. I guess she is also the "swallowing technician" whom I remember meeting  about 3 months ago during the first visit to the Surgical Onc. She felt his throat and said he had good swallowing and that was it.

That's not what I'm confused about. I also asked if the tentative plan of chemo, radiation, and possible surgery was still in place. The onc said probably no surgery because with throat cancer, they have discovered chemo and radiation only is better option, but with H&N, surgery is the better option. Evidently during subsequent scan, it has been determined that his primary is throat cancer, not BOT. The BOT is evidently a met as is the nasopharyngeal and lymph nodes. This scan was done back in January and this is the first we have heard of throat cancer. I would have appreciated being told about it. This does not sound good. Or am I misunderstanding?

Hubby is depressed enough and sick most of the time, especially with all the krap he's been through. He is more upset with me, than appreciative, when I try to get info. from the docs. I'm sorry, but someone has to ask these questions. I'm thinking of talking to the Clinical Navigator and perhaps she can help me with a better understanding of where all this is going exactly.

If anybody has any thoughts on this "new" diagnosis, I would love to hear them.

Luv,

Wolfen

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    You aren't the only one

    confused....I am too.  I thought "throat cancer" was the general term used in this HNC.....and then it was broken down into naso, oro, tonsils, larnyx, etc etc.....some types of HNC can't be operated on....nasopharnyx for one (from what my ENT said, there is just a small membrane  between the nasopharnyx and the brain)....getting to the navigator seems to be the best plan.  Have her/him lay it out...just what is what, and where are we going.

    I saw my swallow lady when I first started, but never did need her later on.....your hubby might just get really lucky, and never need the swallow therapist!!

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #3
    Talking is good

    Hi Wolfen,

    I don't know how your husbands team is set up but is the Patient Navigator a/the Social Worker? The reason I ask is that I have a cancer Social Worker on my team and she's there to help in any way possible (she stepped up big time with the housing situation for Marcia and I). Perhaps she can be a liaison and help you decipher all the information and get a clearer picture. Thus far, the Social Worker on my team has been awesome. Just a thought. 

    "T"


  • wolfen
    wolfen Member Posts: 1,324 Member
    #4
    fishmanpa said:

    Talking is good

    Hi Wolfen,

    I don't know how your husbands team is set up but is the Patient Navigator a/the Social Worker? The reason I ask is that I have a cancer Social Worker on my team and she's there to help in any way possible (she stepped up big time with the housing situation for Marcia and I). Perhaps she can be a liaison and help you decipher all the information and get a clearer picture. Thus far, the Social Worker on my team has been awesome. Just a thought. 

    "T"


    Yeah, T

    I think they are the same thing. She is my "go to" person for any concerns. I met her at our first appt. which was with the Surgical Onc. However, I know the Chemo onc has a Clinical Navigator, also. I wonder if you're assigned to a particular navigator depending on which of the doctors you see first. MD Anderson staff kind of reminds me of all the specialized specialists, like Right Hand Surgeon, Left Foot Surgeon, etc. Each doctor has their own special nurse and own special scheduler. I'll bet they are all really glad for computers where they can check your records and keep each person's schedule straight. It would be a nightmare if they didn't. What am I talking about? This is a nightmare. LOL There's that hysterical laughter again.

    Hope your treatments are tolerable and going well.

    Luv,

    Wolfen

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    Husband

    I thought H&N cancer covers the head and neck.  What am I missing?  When my husband was diagnosed with laryngeal cancer, we were told that the method was radiation and chemo and then surgery, if necessary.  Well it was necessary because someone missed that the radiation and chemo didn't get the tumor.  PET/CT was done too early we were told when his treatment/care was referred to Emory Winship Cancer Center.  We were never assigned anyone to help with anything, guess it all depends on where you are treated.

    My husband did have a speech therapist come to the house during his first radiation and chemo to help with swallowing.  But that ended up being a waste of time because the radiation completely closed off the back of his throat.  No way she would have know this.  In fact, it wasn't known until surgery was done and they had to reconstruct his throat and no speech therapy was offered for swallowing or anything else.  Oh yes when he saw the H&N specialist for follow up, speech therapist was brought into examine room and worked with him a little.  Again, guess it is all in where you have treatment.

    Sharon

  • katenorwood
    katenorwood Member Posts: 1,912
    #6
    confusing...

    Wolfen,

    I have a nurse coordinator where I'm at.  She's the go to lady for questions, schedualing ect.  I have heard that MDA is an excellant place.  H/N dx's encompass so many different dx's....and with each depending on the new research, and where your getting tx's does make a difference on options.  I would point blank ask....you guys are saying throat cancer can you be more specific.  I'm keeping you two in my thoughts, and will be watching for another post to see if they clarify this one for you.  Hugs sent !   Katie

  • jcortney
    jcortney Member Posts: 503
    #7
    wolfen said:

    Yeah, T

    I think they are the same thing. She is my "go to" person for any concerns. I met her at our first appt. which was with the Surgical Onc. However, I know the Chemo onc has a Clinical Navigator, also. I wonder if you're assigned to a particular navigator depending on which of the doctors you see first. MD Anderson staff kind of reminds me of all the specialized specialists, like Right Hand Surgeon, Left Foot Surgeon, etc. Each doctor has their own special nurse and own special scheduler. I'll bet they are all really glad for computers where they can check your records and keep each person's schedule straight. It would be a nightmare if they didn't. What am I talking about? This is a nightmare. LOL There's that hysterical laughter again.

    Hope your treatments are tolerable and going well.

    Luv,

    Wolfen

    The Navigators at MDA are Terrific

    When I went down for my second opinion, my Navigator basically took me in hand to get me where I had to go when I had to be there.

    That said, I'm not too clear on what they are telling you either.  MDA protocol for BOT is Induction Chemo followed by 70 Grey (35 treatments) RADs.  My appointments were with Dr. Weber who is the Chairman of the Head & Neck Center and Chief Surgeon who recommended the standard protocol.

    Joe

  • Grandmax4
    Grandmax4 Member Posts: 723
    #8
    The James Cancer Center ( Ohio State Wexner )

    From my first visit, before I even knew for sure, I had cancer on my epiglottis, my speech and swallowing (same person) therepist was there. Watching each scope and making sure I was swallowing correctly. She was wonderful and brutal at the same time, if something was just a little off, she had me do it over time and again...I never, ever want to see applesauce tinted blue again. She was at every visit getting ready for surgery, came to my room every day after surgery, and again was at every visit since. When it came time, to get my voice strong, she was there...I now, really respect and thank her for all she did.

    Because of Her, my voice and swallowing is back loud and clear....I guess it depends on where you're treated.

    My most recent visit for a scope, Jenni wasn't there, when I asked, I was told she had moved on to private practice..I'm very thankful for her

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    say what?

    Wolfen,

     

    I swear, your doctors are trying my patients.  I wish I could send you a “cancer compass” to guide you through the correct doors.  I see nothing wrong with the way you’ve tried to navigate this cancer mine field.  Stay your course and keep asking questions this maze is bound to open up soon and with that hopefully a happier husband.

     

    Best always,

     

    Matt

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #10
    CivilMatt said:

    say what?

    Wolfen,

     

    I swear, your doctors are trying my patients.  I wish I could send you a “cancer compass” to guide you through the correct doors.  I see nothing wrong with the way you’ve tried to navigate this cancer mine field.  Stay your course and keep asking questions this maze is bound to open up soon and with that hopefully a happier husband.

     

    Best always,

     

    Matt

    clarification from the doctor requested, please

    I believe the doctor certainly left things muddled!

    My husband, Jim, had hypopharyngeal cancer.  No one ever called it anything but that - never throat nor H&N.

    I do know Jim's cancer was considered inoperable.  He had chemotherapy and radiation and has been NED for about two years - although NED is always qualified because there is certainly EVIDENCE of the disease but no active disease on the last few scans.  There is a LOT of scar tissue in his throat and nerve damage to his neck, throat and ear.

    I have since read that only in the earlier stages of hypopharyngeal cancer is surgery considered an option - too many  necessary functions from speech to swallowing to breathing are adversely affected by surgery on the hypopharynx and while we might initially believe long-term survival is the most important goal quality of life is a factor, also.  When swallowing or breathing are affected, long term survival becomes questionable, too, for obvious reasons.

     Go to your doctor himself and ask for clarification - maybe he misspoke or can tell you what he sees as the difference beween throat cancer and H&N cancer.

  • wolfen
    wolfen Member Posts: 1,324 Member
    #11
    Noellesmom said:

    clarification from the doctor requested, please

    I believe the doctor certainly left things muddled!

    My husband, Jim, had hypopharyngeal cancer.  No one ever called it anything but that - never throat nor H&N.

    I do know Jim's cancer was considered inoperable.  He had chemotherapy and radiation and has been NED for about two years - although NED is always qualified because there is certainly EVIDENCE of the disease but no active disease on the last few scans.  There is a LOT of scar tissue in his throat and nerve damage to his neck, throat and ear.

    I have since read that only in the earlier stages of hypopharyngeal cancer is surgery considered an option - too many  necessary functions from speech to swallowing to breathing are adversely affected by surgery on the hypopharynx and while we might initially believe long-term survival is the most important goal quality of life is a factor, also.  When swallowing or breathing are affected, long term survival becomes questionable, too, for obvious reasons.

     Go to your doctor himself and ask for clarification - maybe he misspoke or can tell you what he sees as the difference beween throat cancer and H&N cancer.

    Thank You, Everyone

    For your input. You know, maybe I am just trying to read everything in Black/White, while hubby's case has certainly had it's shades of Gray. MD Anderson's docs are certainly not the type who will give you a specific prognosis, such as 1 yr, 4 days, 59 min. to live. I do appreciate that. Nor do they give you the impression that all will be healed.

    From the first visit, I have had the gut feeling that they are a bit confused as to exactly how to treat him and confused, but hopeful, as to what the outcome will be. The treatment plan changes as his cancer progresses, which I'm sure is probably normal. He does have unexpected, and abnormal problems arise, such as the G-tube episode.

    It's also just a gut feeling that he's not really being told "everything", because knowing would not change it. I suppose it is possible also that because he can only have no contrast CT's and PET, but not MRI, that his cancer is not as clearly defined to them. I don't know if this makes a big difference or not.

    Since we are together during each appt., I've had no opportunity to speak alone to anyone. Perhaps they feel the same about me, that maybe I'm better off not knowing. Since I have that "spare" seven hrs. during his chemo tomorrow, it will be a good time to contact someone, whether it be the surgeon or the navigator. I truly don't think he could be in better hands.

    Joe, I was not ignoring you. I believe you are in the Dallas area? Is your MD Anderson the "mother ship", as those here refer to it, located in Houston.  Ours is located in Gilbert, Az., but docs receive their indoctrination at Houston, so treatment protocols are probably the same.

    I'll give you an update when I learn something new.

    Luv,

    Wolfen 

Discussion Boards