Hello KevinJMS,

That was a horrible ordeal, I am so sorry you guys are dealing with that.

Does that mean he has lost the grafted flap too then too? (It kind of seems like that, that the graft was attached to the remaining tongue and the vascular blow out supplying blood to the graft, and then the necrosis of the remaining natural tongue, seems like that's what the graft would have been attached)?

Yeah that's a question for the expert surgeons. It might be a situation where once things are stabilized and the cancer concerns are controlled reconstruction surgery later? Not sure if that's something dealt with semi-regularly at Comprehensive Cancer Centers or if that may be best done at like the top CCC's with a second opinion or consult with someone who says they have high confidence in being able to get a flap back allowing swallowing and speaking in the future.

Sorry I have no experience with anything like that, just wanted to give a response so that you know you've been heard.

That's a rough go of things. Hopefully the both of you have a good support network of folks assisting with things.

Glad he is ambulating well at home at least and trying to get used to the new tubes and tube feeding and all that.

Did the hospital or cancer center have any support groups or social workers or that kind of thing?

I'd be asking all those questions to your surgeon(s) and seeing if there are any uber-experts they might refer him to if it is something they don't normally do.

Hopefully you kind find a bit of peace and solace in each day amidst the chaos and shock, try to carve out what enjoyment you both can.

Praying he finds some healing and good news with treatment progress and future options for a reconstruction.

Hello: I am the spouse of a 65 year old, otherwise healthy guy, who had a sub-total glossectomy almost 3 weeks ago, with bi-lateral neck dissection. In pre-surgery exams and biopsies, it was determined his tumor was of a genetic predisposition type. A week after his surgery they were thinking he might go home soon. When they were attempting to change out his trach from a cuffed version to an un-cuffed version (what I call the "going home trach") he coughed and instantly had a vascular blow-out of the vein that was supplying the blood to the graft/flap. He ended up needing three units of blood as a result. It was horrifying to say the least. He was immediately in emergency surgery and during this procedure they discovered necrosis of most of his remaining natural tongue, and they had to remove it. So, they basically revised the original surgery to a total glossectomy. Emotionally for both of us, it was devastation upon devastation. He is home now walking around very well, getting a just a tiny bit more eager to do some "normal" life routine activities (which I take as a good sign). He isn't going out yet due to getting used to having a trach and abdominal feeding tube in a home setting. He has no problems breathing on his own (never even did in the hospital) so we are starting the intermittent capping of the trach to see if we can get one more "tube" out of him! I am struggling more than any time in my whole life to research what chance he has to ever eat by mouth or speak anything again. It can be quite consuming. A few days after the original surgery they did some speaking tests, and it was incredible to hear quiet but totally understandable few words. On the day he left the hospital (which was a week after the emergency surgery) they tested his speech again and I was devastated to hear simply garbeled noises. Any insight some of you may have would be appreciated. We were just beginning retirement. I never thought in my wildest nightmares he would be "reduced" to where he is today.

<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 Susan2992,

Sorry for your personal loss of your friend ChristineB. I have read many, many of her contributions on hear like Brian and Nels and others who were more active way back with similar experiences and things I searched for.

Sorry also to hear you are experiencing a recurrence, I hope the treatment for that comes along well for you.

I did see the Reddit group does hotlink to the Oral Cancer Foundation.

Maybe its mostly because there is a Reddit and Facebook app, and its a few extra formal steps to log on to a web based forum.

There seem to be more "off the cuff" type entries, but at least for the Reddit Head and Neck group, it seems like there are multiple new posts every day.

It does seem as if folks with pretty specific types of tumors and complications get responses from folks with similar situations pretty quick and often several responses.

One example is that two doctors from the Mayo Clinic's Head and Neck Cancer are doing a call in type seminar, Sept 2nd I think it is, free, for anyone to call in and ask questions or just listen to the things other people ask them, one a surgeon I believe and the other an oncologist.

I don't know that they asked anyone to post that anywhere on here.

I guess I could hot link to it in a new post, just passing along information....?

Best wishes,

R/
CQ

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 am quite saddened to hear that ChristineB passed. A quick review of the top posters on this site shows her being no 1. A testament to the level of outreach and advocacy she exhibited. We will miss her voice her. Love and blessings to her family and friends.

I agree that many OCF members have switched to Facebook groups. I belong to a few and there is generally more activity there than on the OCF forum. For many reasons I prefer the OCF forum over a Facebook group.

Some sad news to report - ChristineB passed away last year. She was a personal friend, a wonderful and kind person, and did a wonderful job welcoming people to the OCF forum. RIP Christine!

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

Today is my 6th day after left tonsillectomy. Tomorrow I go for the CT Simulation. Physically in good condition, spiritually fit and preparing for the unknown. I thought it would be good to join this forum for support and educate myself as to what might be ahead. This tonsillectomy experience kicked off some of the learning about smooth, cold, nutritious foods and how to prepare them, knowing that I am heading in this direction once treatment begins.

Questions and comments are welcome. I hope everyone is doing well!

Hello! I am very very new to this journey. I had a biopsy done on the right rear lateral tongue on 7/31/26 which returned as squamous cell carcinoma. I am scheduled for a PET and CT on Monday 8/24. I have not yet met with an oncologist but hope to do so next week. I will need surgery, skin graft and radiation treatment. My surgeon is hopeful I can start immunotherapy before surgery. I have a tremendous village supporting me but it also helps to hear from those who have gone before me with this. Can anyone who may have experienced this type of surgery tell me what the pain level is like?

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!

Hi Jane!
I wanted to let you know that you are not alone. My dad also has SSC stage 3, and we are 9 months post treatment (no surgery) and his pain has also been debilitating and radiating up to his temple. I feel like we are pulling teeth to try to get answers, but nothing has been done or adjusted for us. If you have a new update, I would love to now more! we have an oncology follow up next week, and I might scream at them at this point because this has gone on for way too long. Best wishes for you guys!

My dad was diagnosed with SCC base of tongue last year. He completed 35 radiation treatments + 2 high strength radiation treatments. He also completed 7 rounds of chemotherapy. During treatment, he was rx'd oxy-acetametophine and a fentanyl patch. During chemo, he also received IV fluids and steroids. His pain started to subside during treatment. He completed treatment in November of 2025, and after this he only dealt with minimal pain, thrush, and tongue burns.

Around February, he felt another bump and off for a PET scan and biopsy he went. Scan showed color and biopsy showed infection. He was treated with an antibiotic and sent on his merry way. We thought that he was in the clear as far as pain as he was still on the same prescribed pain medicines. However, post biopsy he has been in a ridiculous amount of pain around his previous cancer area. They rx's gabapentin to see if maybe it was nerve pain, and that hasn't worked along side his current pain regimine.

I have called and called for a visit with his oncologist, all they do is continue his normal pain medicine or increase the gabapentin (he is currently up to 300mg/3x a day). It doesn't seem like they are taking his pain seriously - his radiation doctor was the one who rx'd everything in the first place, but they discontinued care once his radiation was finished.

We frequently follow up with an ENT, and he fully believes him about the pain (I do as well, I see it daily.) Since the oncologist wouldn't fit him in for a visit, we ended up at the ER once a week for the last 3 weeks just so he could get a little relief from a score of 12 to a 7. His ENT saw him 2 weeks ago, and referred him to a Head and Neck surgeon for a deeper biopsy and possible surgery. We had the biopsy today, so we are awaiting the results. It seems like every month is a higher level of pain since treatment stopped. I feel as everything that I read, everyones pain gets better, so I can't help but wonder why his keeps getting worse. We can't get into the local palliative care, I feel like we keep hitting roadblocks and he is loosing hope every day. I don't want him to give up this fight solely because of the pain that we can't get anyone to focus on. Just last week an NP oncologist advised she was going to send in a different prescription, and sent in Narcan instead. HE IS A CANCER PATIENT NOT A DRUG SEEKER. God, I just want to scream at them, but I am here instead. We were referred to a pain clinic, but they advised that what he is currently on is about all that they can prescribe, apparently in our state, oncologist have more lee-way than a pain clinic does when it comes to prescribing.

-If the biopsy shows cancer, they will remove it surgically this time. If it is necrosis, they think hyperbaric oxygen therapy will help with the dead tissue pain. Hopefully we will know more this week from the surgeon, but if not we follow up with oncology in a week and if we are at another crossroad, I might actually scream.

Is anyone else on this painful road post-treatment? Has anything worked for you specifically? Did your pain get incredibly worse before it ever got better? Is there a light at the end of the tunnel?

Signed,
A daughter who is just trying to help her dad and is feeling defeated. Thank you for reading this far.

Hi Chris,
Thanks for your thoughtful, knowledgeable and detailed response.
I've sent a note to my surgeon stating my concerns and I'll be seeing him next month to discuss. His comment was that the dysplasia was progressing and the recommended approach was the preferred plan of action.
He had initially put me in for surgery next month but now seems okay to delay a while, so I'm not convinced there is urgency to get this done at short notice. Since this is an important quality of life issue as far as I'm concerned, I plan to take time to understand in more detail the various pros and cons.
Of course there are no guarantees around this stuff
I'll post how things progress.
For anyone else who has had to face similar issues please feel free to weigh in. Each case is unique but the uncertainty and decision making process is something we all share.
Best
Martin