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.

apple32 | @apple32 | May 28 11:03pm

In reply to @kat63016 "Apple32, I’m sorry but I don’t have any experience with this type of surgery. My husband..." + (show)

Thank you, that is very optimistic. I appreciate you responding.

abes1068 | @abes1068 | May 28 11:55pm

Oropharyngeal

abes1068 | @abes1068 | May 28 11:56pm

Mike…oropharyngeal cancer. Diagnosed yesterday May 27, 2024

Colleen Young, Connect Director | @colleenyoung | May 29 9:41am

In reply to @abes1068 "Mike…oropharyngeal cancer. Diagnosed yesterday May 27, 2024" + (show)

Hi Mike (@abes1068) and welcome. I know it's not the club you want to join, but you are not alone. I'm tagging other members who have experience with oropharyngeal cancer like @kth @moro @blulady @michelleandrupert @dc56 @ptlhrms @alpaca @loli @fxdwing @catlyn @chamst @calenbd and others.

Mike, this is all very new to you being diagnosed only a couple of days ago. I'm sure you're dealing with many emotions and questions. Please ask. There are no dumb questions.

Do you know yet whether the cancer is related to the human papillomavirus (HPV) or what stage it is? I look forward to learning more.

josk | @josk | May 29 3:36pm

Sorry .. have not heard or aware of endoscopic salvage nasopharyngectomy treatment option, but then I had a stage 4 nasopharyngeal cancer in 2006 - and perhaps there was no such option then. But I am now diagnosed with dysphagia and severe neck fibrosis - this gives me difficulties in swallowing and speech - all stems from late effects of radiation. Believe that with surgery - there won't be any such late effects.
Keep well and all the best!

abes1068 | @abes1068 | May 30 9:55am

In reply to @colleenyoung "Hi Mike (@abes1068) and welcome. I know it's not the club you want to join, but..." + (show)

Hi Colleen
Great to hear from you. I believe it is HPV related as it’s P16+. I also have one 1.6 cm (I’m in 🇨🇦!) swollen left lymph node and several smaller nodes. Nothing showed up on CT 2 weeks ago except nodes so I’m seeing ENT tomorrow and getting scoped etc to get more info.

roblem | @roblem | May 30 1:59pm

Four things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds.
One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record every appointment with every person I was in contact with so I could always go back and play so nothing is missed. Never had any of my doctors or others which I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer caused from HPV and more recently this year 2024 for my tongue cancer which was most likely caused from my radiation treatment in 08’.
Two, go to a cancer center and if possible one that specializes in head & neck.
Three, get a second opinion.
Four, for meds I used this attached pdf to keep track.

Best of luck with the journey and hope this helps ease some of the frustration.

Shared files

Medication_Log sheet (Medication_Log-sheet.pdf)

morgansmith99 | @morgansmith99 | Jun 6 9:19pm

Hello,
I was diagnosed today with hpv throat cancer. I am happy to have found this group

nimbus55 | @nimbus55 | Jun 7 9:10am

I was diagnosed 8 Jun 2022 with leukemia, and then 27 Jun 2022 with throat cancer. I had 4 tumors, the largest was 1x1x4 inches covering the nasopharynx and oropharynx.

Today, I am cancer-free. The treatment was difficult, but I got through it. Recovery was estimated to be a year, but I think 1 1/2 years was about right.

The experience has brought me very close to my 3 brothers, who were there for me whenever I needed them (and still are here for me!). I have also bolstered connections with many friends.

For those of you just starting this journey, it's hard. Your life will change. If there is one thing that I would recommend, it is to take care of your mental health. There will be many people working on your physical health, but your mental health is just as important. I would strongly consider starting regular visits to a counselor/therapist. I started that only recently, and it has really helped. I wish I had done that earlier.

I just found this group yesterday. I'm glad to be a part of it.