Larangectomy

paulineg
paulineg Member Posts: 8 Member
edited November 2023 in Head and Neck Cancer #1

Hi there im a newbie on here

previous left larynx vocal chord cancer treated with radiotherapy and laser surgery diagnosed 2017

finshed treatment 2018

Was doing ok now five years later back on right side also they will see if lymph nodes are affected during surgery will remove and also right vocal cord paralysed since last biopsy no idea why

have been told cant have no more radiotherapy and only option is to have a larangectomy this will be nov/December

i am shocked and still in disbelief I don’t even know what to think and scared and would like advice please

my prayers to all

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #2

    Hello Pauline, and welcome to the CSN H&N support discussion board.

    I know this is a very difficult time facing and considering all you have to deal with in this situation. Maybe I can give you some info to get you started and help in some way.

    So sorry this beast has attacked you again, it happens, I have had cancer 3 times. I can't imagine how you feel I am sure it is quite upsetting and life-changing to get that kind of news. I think prayer, research on the subject, and thinking and planning will get you through this, and also stay as busy as possible so you don't have time to think about or dwell on it.



    There was a fellow on here who had a laryngectomy and was a great guy and a supporter of many and ran a support group, but he has passed. Here is a link to an on-site search for him and you will see you can do a search and then click on all, topics, events, etc. at the top of the page if you want to check out his old posts.

    https://csn.cancer.org/search?domain=all_content&query=wmc&scope=site&source=community






    Also here is his profile page and if you scroll down you will see all his Topics listed which may be a big help to you.

    https://csn.cancer.org/profile/discussions/wmc


    Also, he always told people about a site that helped him so much and others in his situation. It is a site just for laryngectomy patients called WebWhispers, check it out for info and support.

    https://webwhispers.org/


    Also, Bill did not let his situation slow him down or stop him from living a full life, he was an inspiration to many and also had a YouTube channel helping people deal with issues and doing things that were thought impossible for a laryngectomee patient, I will put the link below.

    https://www.youtube.com/user/wmcross51/videos


    So I am Wishing You The Best and praying for you and letting you know that prayer is powerful and that you will get through this and adapt as necessary and go on with life.

    We are here for you so if you need more info or help or just need to talk feel free to reach out to us.

    Our motto here is NEGU (Never Ever Give Up)

    Courage (Small).jpg
    never-give-up-caricature.jpg


    Wishing You The Best

    Take Care, God Bless

    Russ

  • paulineg
    paulineg Member Posts: 8 Member
    #3

    Hi there

    firstly many thanks just reading this has helped me , I will definitely look through these sites and posts . Good bless him

    I pray every night for guidance and to help all suffering to

    cancer don’t care who we are and how many times we go through it I had gone back to work and looking forward to life when here I am again and off sick from work

    I have six lovely children we’ll all grown up now and also 15 grandchildren I need to fight for all of them and myself

    I have also had incidental finding on Ct scan for Meningioma on my right optic nerve and had a two week urgent referral back in March and not got appointment till dec and another in February which is crazy

    I am keeping as busy as can but suffering weakness in legs walking so it’s difficult to do a lot not sure why I have this unless it’s the cancer not sure

    anyway Thankyou again I will keep coming back as I have found this site very helpful and pray for all his bless all

    Pauline

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #4

    Well, Pauline, I am so glad the info I provided was a help.

    I can understand how you feel since you went back to work and all was good and then this evil cancer shows up again. It has visited me three times and like you say, about the time you get comfortable, well here it is again.

    It looks like you may have 2 issues going on with this Meningioma showing up on the scan. Just what you needed, Huh? How large is the Meningioma and are they concerned about it? It does say it is slow-growing.

    I think the weakness in your legs may be from the Meningioma because that is one of the symptoms.

    What are the symptoms of meningioma?

    If meningioma symptoms occur, they may be very subtle and start slowly as the tumor grows and presses on the brain or spinal cord.

    Depending on the meningioma’s size and location, common symptoms may include:

    • Headaches
    • Seizures
    • Blurred vision
    • Weakness in your arms or legs
    • Numbness

    Other, less common symptoms include:

    • Loss of balance
    • Hearing loss
    • Memory loss

    Here is a link to the page I got the info from telling all about meningioma from Johns Hopkins...

    https://www.hopkinsmedicine.org/health/conditions-and-diseases/meningioma


    You got through this before and you can do it again, I have faith in you. A fellow said one time his cancer was like a road trip. And his treatment was the journey from point A to point B. And whether cancer ever comes back or not or if it does then it's another journey. So you are on your second journey and you will get this.

    I have vocal cord paralysis also from an operation so I have an idea on that part you are going through.

    Keep praying, prayer is powerful.

    Take Care, God Bless

    Russ

  • paulineg
    paulineg Member Posts: 8 Member
    edited November 2023 #5

    Hi there russ

    the info is brilliant on here and responses and I also hope that my experience of past and present can be of help to others .

    after the radiotherapy and laser surgery it took me a long time to recover and go back to work which is what I was looking forward to , I had to sell my home while on sick as there was no help with money anyway forward to now yes here we go again like you said and sorry to hear it’s third time for you ,it’s nasty thing to have . That’s wat I find in life scared to be ok as feels like if u dare to hope then something happens .

    all they have told me is a meningioma on the optic nerve which has almost took my sight in right eye which is odd as it’s the right vocal cord they can see cancer .was left last time .also they think it’s suspicious on left vocal to again .

    they not told me anything about size or anything just said two week referral for it but as I said still not seen anyone yet for the optic nerve tumour.

    i asked ent if there was possibly my legs was due to the meningioma but she said that we’re it is would not affect my legs but I feel my bladder my legs are all affected now and wonder how right she is

    thank you for all the info I shall read through it they do think it’s benign but until I see eye specialist I guess I won’t know they mentioned also calcification seen

    and same with cancer on larynx hey said cant grade/ stage it I can’t see why not as had ct scan and mri scan two it’s of biopsy’s and also bloods etc very odd and I think that’s why I’m in denial that there right I don’t see how they can’t stage it yet want me to go and have a major op larangectomy,

    were as last time they did it was t2 mo no I think that’s correct way of writing it .

    i hope you are doing ok and sorry to write so much but I just can’t get my head round it I always keep hope and faith and pray in my life

    yes I like that about journey a to b it is so true and yes somehow we all do get through it .

    with you’re vocal cord paralysis what sort of symptoms do you have ,mine is right one I find swallowing hurts and cough a lot wen drinking tea coffee not really with water which is odd and also hurts to swallow food but not coughing with food again odd and I have lot of mucus and burning in throat my throat seems to hurt all the time don’t really get a break this worry’s me to and coughing wen lay down in bed .

    hope not gone on to much and thankyou again

    pauline

  • paulineg
    paulineg Member Posts: 8 Member
    #6


  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    edited November 2023 #7

    Pauline, thanks for the update and a bit you told me about yourself. So sorry you went back to work but are interrupted again by this nasty cancer.

    I don't know why they can't stage your cancer, you would think at least they could estimate it.

    Unfortunately, you are in a waiting situation and that is always one of the hardest parts.

    Below is a link to the fellow comparing his cancer event to a journey, I think you will like it...

    https://drive.google.com/file/d/1p7KPZKXJDvn5Lmwd7oHDV3oe4WHnK1mI/view?usp=sharing

    My vocal cord situation came about because of an operation on the left side of my neck a radical neck dissection, because of one cancerous lymph node. One would be easy right, but this wasn't because it was not encapsulated and the cancer had spread beyond and made the operation to get all the cancer more involved and difficult, so in the process, I guess some nerves were cut and my vocal cords just do not have the full range of movement so they don't open the normal amount letting less air in so I am short of breath during exertion. So now I pace myself and do a little at a time then catch my breath and go again. Also, I got radiation for the second time which is unusual but it may have been lighter radiation due to it being a follow-up after surgery and not the main treatment for the cancer.

    Here is a video of a normal singing vocal cords and you can see after making notes the person draws air which shows the vocal cords opening wide to let air in. Paralyzed vocal cords have limited movement as per each person's case...

    What Singing Vocal Cords Look Like

    https://www.youtube.com/watch?v=D6mLc9gOgVA


    Below is a link to a video of I believe a doctor, yes it is a guy named Dr> James, showing and discussing vocal cord paralysis...

    He says: Vocal cord paralysis. I produced this video March 1, 2005 for a conference.

    Laryngology: Vocal cord paralysis

    https://www.youtube.com/watch?v=pcTPOmNStPI


    Sometimes all you can do is hold on...

    https://www.youtube.com/watch?v=3fwYG32g5mo


    Stay in touch with your case.

    Take Care, God Bless

    Russ

  • paulineg
    paulineg Member Posts: 8 Member
    #8

    Hi there russ

    thank you for all of this info I definitely look through it all of this helps me so much

    I have a larangectomy nurse visiting me tomorrow she is letting me meet a lady who has been through this almost five years ago I’m sure that’s going to help also

    and today I had to fill out my pre op form online just got to sign a consent form and then they will do the op usually I think within two to three weeks

    becoming so real now ,

    I will definitely keep you all updated with my case and will also be reading posts and try if can to help others

    i send love prayers to all and Thankyou again

    pauline

  • paulineg
    paulineg Member Posts: 8 Member
    #9

    Meant to say I thought they would stage it to but all consultant said was early all he cud say . and won’t know more till operation done which is abit worrying I feel worse this time round than last with symptoms pain ect . I will ask the larangectomy nurse this tomorrow also see she can find out more

    Pauline

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #10

    Thanks for the update Pauline.

    I believe she will ease your mind a bit and it is wonderful that she could set you up with a lady who had this done 5 years ago, and very gracious of that lady to want to help others and give her time with face-to-face meetings, that will let you see and meet a person who has been there and doesn't let it slow her down. I would think it would be uplifting and inspiring.

    Thanks for the Love and prayers for everyone and many prayers are flowing back to you.

    Wishing You The Best

    Take Care, God Bless

    Russ

    lillies.jpg


  • paulineg
    paulineg Member Posts: 8 Member
    #11

    Hi there russ

    yes it’s great they can do this and the lady is amazing works drives e t so definitely ot let this beat her ,I now have dates for pre op and op as long as pre op goes ok that is on Monday morning and then the operation will be on the Saturday 25th November .if I don’t get on before I will do an update after I recover enough still scared but only cause It is five hour op if all goes well and to plan .and I am in for up to two weeks all being well ,now reality kicks in .

    and welcome everyone needs love and prayers and thankyou to

    Pauline

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