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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

rlbaker53 | @rlbaker53 | Apr 7 10:41am

Hi, I'm Roger. I'm 70 years old and had TORS surgery for a base of tongue tumor and right side lymph nodes removed on April 3rd. I am doing pretty good, although I have coughing episodes that I assume is from the excessive saliva production. I think I read somewhere that cough medicines should not be taken while the tongue is healing from surgery. Does anyone have insight or recommendations?

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1 reply
Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Apr 7 12:14pm
In reply to @rlbaker53 "Hi, I'm Roger. I'm 70 years old and had TORS surgery for a base of tongue..." + (show)
@rlbaker53

Hi, I'm Roger. I'm 70 years old and had TORS surgery for a base of tongue tumor and right side lymph nodes removed on April 3rd. I am doing pretty good, although I have coughing episodes that I assume is from the excessive saliva production. I think I read somewhere that cough medicines should not be taken while the tongue is healing from surgery. Does anyone have insight or recommendations?

Jump to this post

Hi Roger @rlbaker53 and welcome to the Head and Neck group. You should be able to quick ask your GP or the surgeon if you can use cough meds and get a response that way. Everyone's body responds differently to the surgery you had but cough seems rather common, at least for a while.
Any additional or follow-up treatments being considered such as Radiation or Chemo?
If you are having other issues later on that you want some input about, you might consider opening a specific Discussion which will bring in many eyes and likely helpful comments. In the mean time, give this a few days and we will see what transpires. Again welcome.

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krob | @krob | Apr 7 4:32pm
In reply to @brad78 "Hello Robin. I too came here in January for support with my diagnosis of P16SCC. Right..." + (show)
@brad78

Hello Robin. I too came here in January for support with my diagnosis of P16SCC. Right now I'm about 10 weeks out from surgery. It really is helpful to visit with people that are in this same struggle. The physical aspects are one thing but managing the mental is another. I understand about friends. When my diagnosis first came out, people were shocked and all over us. Now a little time has passed and people have moved on which is natural. The best advice I can give is stay close and talk. At the same time, caregivers sometimes need a break. My wife has friends and sisters she can vent to during those tough times. People said to me in the beginning that this is a journey and not a destination and boy were they right.

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Appreciate the feedback!
Best to all of you!

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michael81 | @michael81 | Apr 10 8:33am
In reply to @brad78 "Hello Robin. I too came here in January for support with my diagnosis of P16SCC. Right..." + (show)
@brad78

Hello Robin. I too came here in January for support with my diagnosis of P16SCC. Right now I'm about 10 weeks out from surgery. It really is helpful to visit with people that are in this same struggle. The physical aspects are one thing but managing the mental is another. I understand about friends. When my diagnosis first came out, people were shocked and all over us. Now a little time has passed and people have moved on which is natural. The best advice I can give is stay close and talk. At the same time, caregivers sometimes need a break. My wife has friends and sisters she can vent to during those tough times. People said to me in the beginning that this is a journey and not a destination and boy were they right.

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Hello folks, Michael again. ( Th OLD Guy that Had A tumor and the base of his Tounge )
You all can expect friends to mysteriouly vanish once they know of your Cancer. Same goes for
your savings. You will also have a problem with Fatigue but you can "Bull" through it. You
also should also get to a gym. I sugest LEGS and Triceps as a priority. If you sit on your but
all day, your muscles go to hell and getting up from a sitting positon will become VERY difficult.
Once you see results from your workouts, YOU ARE HOOKED ! Tough it out. You'll be glad you did

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pamwill1960 | @pamwill1960 | Apr 11 10:58am

Hi everyone, I was diagnosed with Squamous Cell cancer on the outside and inside of my right nostril. I didn't think that it would be a big deal with the MOHS Surgeon to remove and repair. To my dismay after the first cut the surgeon came back and said "this can kill you". He told me he would have to refer me to oncologist afterward and wanted to know if I wanted to go to Boston MA or Worcester MA! After two more cuts he recieved clear margins which was told to me by the surgical assistants, he was gone!! The surgical assistants wrapped my nose and face without any reconstruction of the huge whole in my nose and above my lip! I had an appointment at MEE within a week with a diagnosis of Squamous Cell Carcinoma with PNI! The PNI is the major issue, I was given option of 6 weeks 30 treatments of Radiation or follow up with scan in 3 months and to watch how the huge hole granulated on its own! I was still second guessing myself about radiation and asked for a referral for a consultation with Radiologist oncologist. I met with him and he told me that the PNI decreases mortality rate, but also said that reconstruction of my nose would not be successful after radiation because the skin on the face thins.
I decided that I want to get the reconstruction done now (appointment with Surgeon tomorrow) , once it is healed I plan to have radiation! I want to LIVE! I am 63 and retired my partner is 68 and has signs of Dementia. I do not drive highway (major fear) and need him to drive to Boston for Dr. Appointments, but radiation will only be 20 minutes non highway! Looking for any advice from anyone who had SSC with PNI and there experience. Please and Thank You

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 14 10:24am
In reply to @pamwill1960 "Hi everyone, I was diagnosed with Squamous Cell cancer on the outside and inside of my..." + (show)
@pamwill1960

Hi everyone, I was diagnosed with Squamous Cell cancer on the outside and inside of my right nostril. I didn't think that it would be a big deal with the MOHS Surgeon to remove and repair. To my dismay after the first cut the surgeon came back and said "this can kill you". He told me he would have to refer me to oncologist afterward and wanted to know if I wanted to go to Boston MA or Worcester MA! After two more cuts he recieved clear margins which was told to me by the surgical assistants, he was gone!! The surgical assistants wrapped my nose and face without any reconstruction of the huge whole in my nose and above my lip! I had an appointment at MEE within a week with a diagnosis of Squamous Cell Carcinoma with PNI! The PNI is the major issue, I was given option of 6 weeks 30 treatments of Radiation or follow up with scan in 3 months and to watch how the huge hole granulated on its own! I was still second guessing myself about radiation and asked for a referral for a consultation with Radiologist oncologist. I met with him and he told me that the PNI decreases mortality rate, but also said that reconstruction of my nose would not be successful after radiation because the skin on the face thins.
I decided that I want to get the reconstruction done now (appointment with Surgeon tomorrow) , once it is healed I plan to have radiation! I want to LIVE! I am 63 and retired my partner is 68 and has signs of Dementia. I do not drive highway (major fear) and need him to drive to Boston for Dr. Appointments, but radiation will only be 20 minutes non highway! Looking for any advice from anyone who had SSC with PNI and there experience. Please and Thank You

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Welcome, Pam. I see you started a new discussion with your questions here:
- Squamous cell carcinoma (SSC) with perineural invasion (PNI) https://connect.mayoclinic.org/discussion/ssc-with-pni/

Click the link to see the responses you've received so far.
I expanded the title to spell out the abbreviations. Can you please confirm, are you using PNI for perineural invasion?

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