..........................

I don't know who will read this, but I wanted to tell all who go thru a procedure of either removing part or all of their jaw due to cancer, it gets better with time. My biggest concern when they told me they had to remove my lower jaw was.. "can I still eat pizza?" My care team assured me I would go on to live a full, normal life.

It is a process of coming to grips with a new life. I am here 13 years after my surgery, and I can say I am so grateful to be alive and vital. Sure, my facial structure is not what it used to be, but I am able to smile, and people are drawn to my smile. Of course, it helps that I have perfect teeth on my upper jaw. I had implants put in after a few years when the radiation finally took the last of my good teeth.

My message is.. this surgery is horrifying, it's something that causes us to stop and say, "what did I do wrong". But the fact is, it happened. And we have to make the best of what we have. I love my life and treat each day as an adventure.

For those of you just starting on this path of surgery, or have already had it, I am available to talk. Just leave a private message..or you can ask questions here on the forum for others to learn from.

Cris

Hello KevinJMS,

Welcome to OCF and thank you for sharing your story. I am so sorry to hear of the cancer and your challenges after surgery. In early 2020 at age 52, I had half my tongue removed and a flap from my wrist to replace the removed half, and all my nodes removed on the same side of my neck. I will tell you speech, eating, drinking, took a long time even with half of my original tongue. I had to learn to be very patient with myself. But, over many months, my speech kept improving, today most people will hear a lisp but I am understandable to strangers. And, I find most people very patient when I am not.

Does he have any original tongue muscle left? If he can make noises with it now that is a good sign. Do you have a speech pathologist assigned?

I kept video logs of me reading passages or messages to loved ones. It was good to occasionally go back and listen to them as I would realize I made more progress than I thought. I also kept a written journal. It helped me sort out my fears, anxieties, keep track of questions for my doctors, etc.

I will send you a private message (access under your name in the upper right). Might be good to connect live as it is easier to offer support with a live exhange.

Stay safe and keep the faith,
Nels

<blockquote class="reddit-embed-bq" style="height:316px" data-embed-height="316">
<a href="https://www.reddit.com/r/HeadandNeckCancer/comments/1vz0uqe/hi_reddit_were_dr_kyle_ettinger_oral_and/">Hi Reddit! We're Dr. Kyle Ettinger, oral and maxillofacial surgeon, and Dr. Tim Malouff, radiation oncologist, from Mayo Clinic in Rochester, Minnesota. We specialize in caring for people with head and neck cancer. Join us on September 2nd, 2026 at 11:00 a.m. CST for an #AMA. Ask us anything!</a><br> by
<a href="https://www.reddit.com/user/MayoClinicMN/">u/MayoClinicMN</a> in
<a href="https://www.reddit.com/r/HeadandNeckCancer/">HeadandNeckCancer</a>
</blockquote><script async="" src="https://embed.reddit.com/widgets.js" charset="UTF-8"></script>

Quoted from Reddit:

September 2nd, 2026 at 11:00 a.m. CST for an #AMA

" Hello Reddit!

We're excited to join r/HeadandNeckCancer for an Ask Me Anything (AMA) about head and neck cancer!

Whether you're newly diagnosed, exploring treatment options, preparing for surgery, or caring for someone with head and neck cancer, we're here to answer your questions about tumor removal, reconstructive surgery, treatment planning, quality of life after treatment, and the latest innovations.

I’m Dr. Kyle Ettinger, an oral and maxillofacial surgeon and surgical oncologist at Mayo Clinic specializing in the surgical treatment of head and neck cancer. My work focuses on removing cancer while preserving and restoring important functions like speaking, chewing and swallowing through advanced reconstructive surgery when needed. I’m here today to answer your questions about head and neck cancer, reconstructive surgery, surgical innovations, and what people can expect throughout their care journey.

I’m Dr. Tim Malouff, a radiation oncologist at Mayo Clinic, treating people with head and neck cancer. I specialize in modern radiation treatments, such as proton therapy and SBRT, designed to target cancer while minimizing impact on healthy tissue. I’m excited to answer your questions about radiation therapy, emerging technologies, and the future of cancer treatment.

Click here to learn more about head and neck cancer care at Mayo Clinic.

Disclaimer: This AMA is for general educational purposes only and is not a substitute for individualized medical advice from your healthcare team.

You can start submitting your questions now—we're looking forward to the discussion! "

In case anyone in the OCF world happens upon this and is not on the Reddit Head and Neck group and may want to participate in this.

Not sure how the UBBCode will parse out all the Reddit embed text, but worse case scenario people should be able to highlight the URL and post it into a browswer window or just search Reddit for that post.

Praying for her.

Hello Steve H,

Welcome to the forums.

Sorry to hear about your new journey into chemo and radiation therapy.

I hear tonsillectomies are often quite brutal too. I hope you are recovering very well from that ordeal and making daily progress.

If you don't see too many replies on here with folks with similar experience as you, you can try the Head and Neck group on Reddit.

The Oral Cancer Support forums have lots of great archived experiences of people for the past few decades, and are readily searchable.

I tend to think of the things posted on these forums here a bit more self-regulated and moderated than some of the posts on Reddit, but they seem to be pulling in more active daily users.

I just saw a post on there today that some Head and Neck doctors from the Mayo Clinic are going to be doing an open forum session on Sept 2 I think it was, where anyone could ask them questions. One I believe is a surgeon, the other a radiologist.

So its not just lay people, but solid medical information...just have to be weary of the source. Lots of upset family members and people not necessarily privy to what all the doctor is telling the patient directly...that kind of thing, people kind of reaching out in desperation.

They do moderate there too and say things like none of us can answer those types of questions, you (or the patient) needs to ask their doctor to explain _________ why.....

If you haven't familiarized yourself with the Forum Search bar in the upper right hand of the forum windows, you may want to do a few searches for tonsil cancer, tonsillectomy....You can try direct messaging individual posters with private messages if you like too.

I hope and pray your recovery from the tonsil surgery goes well and your treatment plan comes together with excellent results, and limited side effects , and rapid healing from those too.

Best wishes,

R/
CQ

Hello JenW,

Welcome to the forums, and sorry to hear of your recent cancer diagnosis.

It sounds like Nels would be an active leader on the boards here who has been down the road you are looking at (and a bunch of other folks who may not be so active any more).

My surgery was on so small a lesion no graft material of any sort was required, and no chemo or radiation either, so I can't offer you answers myself.

As I recall Nels' experience the healing from the radiation was more harsh than surgery.

A lot of it depends on the specific surgery, specific portion(s) of tongue they have to remove.

They also have different types of radiation, and different doses, different schemes etc...

Nels would probably tell you go out and enjoy your favorite foods now, pack on a few pounds and enjoy eating (if you can with your biopsy site recovery and/or the remaining tumor perhaps making eating "less than fun").

Not sure if you have seen any of the groups on Facebook and or Reddit yet, but the Reddit one is quite active.

It seems the Reddit one is often more anecdotal experiences, and less self-moderated, but there are a lot of active daily users, just have to take everyone's input with a grain of salt, and use the information as spring board to ask your doctors and medical folks.

Glad you have a support network forming around you, that's so crucial.

Stay motivated, and keep the good fight, I hope and pray your treatment plans go well with great success and endurable suffering as you recover and work through the radiation/chemo therapies.

R/
CQ

I have recently had a carotid endarterectomy on my left side in the past three months resulting in 2 moderate strokes post surgery in the hospital. Now my follow-up ultrasound 3 months later shows a problem with the velocity of the blood in the surgery area indicating a blockage. I am wondering about a second opinion about how to treat this. Does anyone have any recommendations on what vascular doctor I should see in the California area? Specifically in Southern California. Thank you!

Diane

Hello Mamamace,

Sorry to hear about the agony your father is experiencing.

I am dissapointed/confused as to why the palliative medicine team is not able take him on as a patient, especially giving his uncontrolled pain.

I would suggest, if feasible, perhaps seeking a second opinion if he is not satisfied with answers and treatment he is getting. Sounds like he just had a work up with an additional biopsy, so they are continuing to work up his case trying to figure things out, but are unable to keep him comfortable between answers. This is just screaming palliative medicine to me. My brother LOVED his palliative doctor, a good bit before he decided to enter hospice.

I hope the recent biopsy comes back non-cancerous, but maybe with some clues that they can figure out what is causing the pain.

With my brother it was a rapid, and brutal decline from aggressive small cell lung cancer with bone metastasis. The bone pain was agonizing for him.

They ended up doing "palliative radiation" (I had not heard of that before my brother this spring), where they radiate the bone tumors, not to cure or really even treat the cancer, but to kill off nerves and greatly relieve the pain. That helped him quite a lot. That was from the oncology team, and that was as his was advanced in his bones.

When he finally was able to home after the third round of chemo almost killed him (9 blood transfusions in a weekend as I recall, every chemo treatment resulted in an ICU oncology admission for like a week) he was taking a pause from the chemo and really established a good rapport with a palliative medicine doctor.

Once he got the palliative medicine doctor on board, he was pretty much "comfortable" except when moving.

Regarding the narcan, is it possible that was only part of the prescription, and the rest got hung up? Sometimes it seems things get confused. That's why a palliative doctor focusing solely on symptom management and quality of life, being your one stop clearing house can help. Sometimes due to treatment plans and other drugs it may not be possible for them to give their first set of treatments of choice, but that's the beauty of it. The palliative doctor can have those battles with the other doctors/pharmacists, their goal is making his life bearable NOW, or as soon as to NOW as possible. Or actively working to make his life more bearable, make improvements where possible.

I get why being in chronic pain can be so debilitating and demotivating. I can only just imagine.

We had to have the narcan on hand with my brother as towards the end he was on quite a lot of narcotics, and they kept getting heavier as entered hospice.

Is your father at a Comprehensive Cancer Center? Is it possibly to seek consultation at a CCC if he is not there now?

My brother never rallied his health up enough to see about trials and second opinions.

I know they talked a lot about "getting ahead of the pain" and "getting ahead of the nausea".

That is if he didn't stay on his regiment and the pain took hold, getting it back under control was always a nightmare.

So one thing the palliative doctor did, and mind you my brothers was an aggressive and rapidly advancing cancer, was once my brother's "break through" pain medication, dilaudid (hydromorphone, if I recall), had to be taken on a increasingly regular basis, was to up his fenatnyl patch and then I think the frequency of which he could take the break through medication.

You mentioned ER's, and that was what got my brother diagnosed.

He was all set up for more CT scans and other work up I think through his regular doctors, had a massive increase in pain, went to the ER they did some stuff, he was sent home but like 3 hours later he was back in the ER and they were running IV's of narcotics trying to get his pain under control. They ended up doing the STAT CT's there for the ER, saw what looked like tumors, admitted him, as his pain was still out of control. They ended up getting a cancer diagnosis after a return to ER visit for pain.

Anyway I am sorry you and your father and family are going through this.

The also look at things like acid reflux and doing things to make sure just regular old middle age stuff isn't causing his surgical trauma areas to be bathed in like stomach acid from just GERD?

Heartburn is bad enough, can't imagine having stomach acid on a base of tongue incision.

What about like a moral support group?

I took my brother to one cancer support group for men. He was just trying to process everything, and things were not looking good at all. He would not survive for the meeting the following month as he decided to enter hospice a couple weeks after that, and was only on hospice like a bit over a week. Again his was a horrible fast and agressive cancer, that was already through his bones (why chemo was really rough on him, his red blood and white blood cell counts were already horrid before chemo, from the cancer being in his bone marrow).

The men's cancer support group was led up by a social worker, and an oncology nurse, who was himself a cancer survivor. Sometimes sharing those types of concerns with those types of people in person, may give you and your dad other ideas of how to follow up.

Figuring out how the squeeky wheel gets the right grease, can take a bit of persistence.

Sounds like you guys are in the middle of a pretty heavy workup, so I am hoping that you get some answers and peace, and your father gets some comfort, rest and encouragement, SOON!