Connect
Meet others living with Head & Neck Cancer: Introduce yourself
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
@tulip2026 Have you thought about getting a second opinion for treatment? There's nothing wrong in getting another doctors point of view. 😉 God Bless
-
Like -
Helpful -
Hug
4 ReactionsHello Everyone,
A Pet Scan located a tumour in my right Parotid gland a year ago (At the same time they found a tumour in my lung and I since have had a lobectomy and the right lower section of my lung removed. No treatment required).
I have had a biopsy of the tumour in Parotid gland and apparently it is a benign - a Warthins tumour. 6 months ago I had an MRI of this area and visited the ENT specialist who agreed that the tumour was benign (but he did say, unnervingly for me, that he hoped the biopsy was done correctly ). He requested I have a follow up MRI now which I have just done. I see him in two weeks for results and opinion.
Intermittently, I get bouts of swollen tongue, swollen lips. when I mentioned this to ENT specialist and my GP - no-one knows why but I can't help feeling it is related to the tumour in my right Parotid gland.
-
Like -
Helpful -
Hug
3 Reactions@calli27 there are times when one must advocate for themselves, especially when a "Sorry, but I was wrong" would be too late. If you have concerns, push for the answers, as delaying can affect the outcome. Good luck!
-
Like -
Helpful -
Hug
2 Reactions@56tburd Thank you. You are right ... I should push for answers, or get a second opinion.
@calli27 I concur with @56tburd , be your own best advocate. If you feel you should ask for a referral to a cancer center, large city hospital, or perhaps the Mayo Clinic, do it. Sometimes our doctors are not exactly sure what is happening and are relieved to find you are willing to seek help elsewhere.
-
Like -
Helpful -
Hug
1 Reaction@hrhwilliam Thank you for your thoughts. Yes, I shall seek a second opinion.
-
Like -
Helpful -
Hug
1 Reactionhi all:
Just getting started. Haven't had treatment yet but should start In a week or two. Met with Surgeon, Radiation and oncologist along with a dental Oncologist for HPV positive tonsil -Stage I or II depending on who I talked to.
Proposal is 7 weeks of radiation plus 40mg cisplatin weekly for 6 weeks. Biggest concern/decision now is that I'm already hard of hearing and use hearing aids. The Cisplatin is pretty famous for hearing loss, so I don't know if I'm heading for deafness or not. If anyone has thoughts, I would be grateful.
I know the next 3 months are going to be tough, but I have a good support group am otherwise in very good health and I (so far) have a good attitude, meditate daily, regularly exercise and I'm trying to "fatten up". But I'm concerned about further hearing loss and interested in ideas, experiences etc. Idea for mitigating I of course will talk to my doctors.
-
Like -
Helpful -
Hug
1 Reaction@simplygrand
Hi, My diagnosis was similar back in Oct 2025, Stage 1-2 tonsil cancer HPV+.
Thanks to this support group I discovered that a blood test is now available for this cancer and was able to stop treatments early because of it testing negative for cancer after 3 days of cesplatin and 24 radiation sessions or 48gy.
So after 5 weeks took a week off from treatments then tested which took about a week to get results back. NavDx is the name of the test it will come up in a Google search'. You may have to ask for it like I did but good chance it could save you from unnecessary toxic treatments. I highly recommend it.
You will have to advocate for yourself though , seems some cancer centers are hell bent on maximum treatments still despite overwhelming evidence that this particular cancer often only needs about 1/2 what is recommended to kill it..
-
Like -
Helpful -
Hug
1 Reaction@woodsy1
Thanks, Woodsy1:
So I've had that test just last week and it came back positive as expected. It was presented to me as a post- treatment tool. In other words it should be negative after the Radiation and Cisplatin to prove they got it all. Thereafter, they would repeat NavDx periodically to catch anything that might return and take care of it quickly.
It was not presented as a way to minimize treatments. Perhaps they have this in their back pocket and didn't tell me to prevent me from getting excited. (under promise and overachieve?)
One thing from your post does confuse me. The 24 treatments at 48gy sounds really low compared to what sounds low... as my docs were talking intensity modulated between 75gy at tumor and 10 - 30gy at various places around my neck. Could you elaborate on that?