Throat Cancer reoccurance- Laryngectomy in my future

CPerk88
CPerk88 Member Posts: 2
in Head and Neck Cancer #1

Hello all,

I had vocal chord cancer diagnosis in the fall of 2018.  8 weeks of radiation cleared it up completely and was doing well until this past spring.  I noticed my voice deteriorating.  With Covid I wasn't able to get scoped until June, but it looked fine.  CT in August was fine.  Voice continued to go downhill.  I went in for surgery in December to clean up some scar tissue and adhesions that they thought were affecting my speech.  My doc did a biopsy just to be thorough, and it came back positive.  I would be lying if I said I wasn't devastated.  Petscan and CT showed the cancer, although the Petscan report said they would have just flagged the cancer area as something to watch If I hadn't had the positive biopsy.  So the area is very small, yet I am being advised to do the total laryngetomy.  I guess there is not way to save my voice because of the location, and they don't want to take a chance with another reoccurrence.  Still - I am terrified of the laryngectomy.  Not to mention how it will be for my grandchildren to see me so changed.  So I guess I'm grieving over what I will lose rather than looking at it as a way to save my life, which is stupid, I know.  I guess I just have to work through this emotionally.  I am getting 2 second opinions at the encouragement of my doc.  I have a great team at Georgetown U Hospital.  I would love to hear from those of you who have gone through the experience.  My husband and I have always been very social, and I think it's going to cause a big change for us.  Thanks in Advance!

Comments

  • armana
    armana Member Posts: 97 Member
    #2
    Deeply Sorry

    I am sorry about your situation, however, as difficult as it may be, you should focus on how lucky you are that it was caught early so you can enjoy your beautiful grand children for many more years to come.

    Good Luck

     

    Arman

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #3
    I Would Suggest

    You contact Bill on this forum.

    His Handle is wmc.

    Here is his page  https://csn.cancer.org/user/218705

    He is a laryngectomee person and  runs a

    Support Group.  Lary’s Voice. It is for Laryngectomees and he also does throat cancer. He has 40 year survivors and in 27 countries.

    Click on contact user on his member's page and message him he will be glad to help.

    Bill has a lot of experience and good insight to help with this.

    Any questions let me know--here is how to private message folks on here also--

    Send Private Message

     

    Click on the members name on the post to the left side which is either by itself or underneath their picture.

    This will take you to their member page.

    Click on “contact user”

    Type your message and enter the CAPTCHA code and click send message.

     

     

    Another Way

     

    CSN E-mail

    Registered CSN members may send and receive messages from other users through the CSN internal messaging system. The system allows members to contact each other while protecting their actual email address. Messages can be accessed via your CSN home page.

    To send a new message using the Send a Message form:

    • Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.

    • From the Home page, click on "CSN Email" located around the center of the blue box labeled "Connect and Communicate."

    • On the next page, click on "Write a new message"

    • Type the CSN screen name of the member you wish to contact on the "to" field. Or, select the name of the member you wish to contact from the “My Friends” dropdown list.

    • Type your subject line and your message.

    • Click on "Send Private Message"

     

     

    Take Care-God Bless-Russ

     

     

  • dnelson964
    dnelson964 Member Posts: 21 Member
    edited January 2021 #4

    I am very sorry to hear new cancer has been discovered as returned. I am a 5 year SCC hidden Sinus Stage IV cancer patient and still free of any cancer return. I was told I had had only a 5% chance of survival post-treatment to 2 years. I was involved with my treatment protocol and opted for 1/2 Radiation along with 1/2 Proton to minimize health tissue damage. During my recovery, I did extensive research and found that a high blood level D was necessary to strengthen my immune system back up to allow it strong enough to kill cancer cells. This research was done 6 years ago outside the US so not many had known about it. 

    I had my blood level checked for vitamin D and found it was low at 29. The normal range is 30-90. I immediately started taking 10,000iu daily and stayed on it until I hit 90 about 6 months later. No side effects ever experienced. I also started on the Keto food diet which is much better to help with nutrition and no cancer feeding. Next, I bought and took

    Beta Glucan to improve the aggressiveness of the immune cells to kill cancer when found.

    These are things anyone that has cancer must do in my opinion. There are other things that help and I recommend lookup online a site called 'cancer Tutor",

     

    Best wishes going forward.

     

    Best of luck going forward.

  • CPerk88
    CPerk88 Member Posts: 2
    edited January 2021 #5
    wbcgaruss said:

    I Would Suggest

    You contact Bill on this forum.

    His Handle is wmc.

    Here is his page  https://csn.cancer.org/user/218705

    He is a laryngectomee person and  runs a

    Support Group.  Lary’s Voice. It is for Laryngectomees and he also does throat cancer. He has 40 year survivors and in 27 countries.

    Click on contact user on his member's page and message him he will be glad to help.

    Bill has a lot of experience and good insight to help with this.

    Any questions let me know--here is how to private message folks on here also--

    Send Private Message

     

    Click on the members name on the post to the left side which is either by itself or underneath their picture.

    This will take you to their member page.

    Click on “contact user”

    Type your message and enter the CAPTCHA code and click send message.

     

     

    Another Way

     

    CSN E-mail

    Registered CSN members may send and receive messages from other users through the CSN internal messaging system. The system allows members to contact each other while protecting their actual email address. Messages can be accessed via your CSN home page.

    To send a new message using the Send a Message form:

    • Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.

    • From the Home page, click on "CSN Email" located around the center of the blue box labeled "Connect and Communicate."

    • On the next page, click on "Write a new message"

    • Type the CSN screen name of the member you wish to contact on the "to" field. Or, select the name of the member you wish to contact from the “My Friends” dropdown list.

    • Type your subject line and your message.

    • Click on "Send Private Message"

     

     

    Take Care-God Bless-Russ

     

     

    Thanks!
     

    Thanks!

     

  • Suez39
    Suez39 Member Posts: 165 Member
    #6
    Possible larengectomy

    I had vocal cord cancer a long time ago. Was fine. Than got diagnosed with bade of tongue and tonsil cancer. My voice too very raspy and was going like yours. I had radiation and chemo treatments. Now, my doctor is saying I need a larengectomy so I can eat agsin. I'm on permanent FT. But I'm holding off getting larengectomy. I'm too scared, plus doctors made mistakes before. Thier is no guarantee you can eat with the surgery done. For me, I'm now cancer free, but have permanent trach and FT due to radiation damage in my throat. So it's only an option. But gor you, since cancer reoccurrence getting 2nd opinions smart move. Wbcgaruss gave you good suggestions. Doctors aren't always right the 1st time. I wish th ou the best of luck!

     

    Susan

  • crmer
    crmer Member Posts: 1
    edited February 2021 #7
    Hello,

    Hello,

    My Dad ended up having a total Larengectomy and permanent trach. He used a device to speak and recieved speech therapy. Please let me know if you have any questions about process. I wish you the best.

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