Hello Gamjagirl,

Welcome to OCF and I am so sorry to read of your father's cancer. You should be able to find tons of good info by searching on different key words under treatment. I went through surgery, somewhat similar to your father but simpler, and radiation about five years ago. Regarding radiation - eat as much as you can to keep your weight up. The first 2-3 weeks should be relatively normal regarding food flavors. But, once they change, it won't start to get better until a few weeks after your last dose of radiation due to the cumulative effect of the treatment. Get a vitamix (think discount is still available if purchased through our link) or similar to blend foods to make it easier to get calories. The list of foods that tasted normal or at least not terrible got really short for me - scrambled eggs, green beans, french toast, pancakes, vanilla pudding, vanilla ice cream, avocados, vanilla protein drinks, simple soups...but everyone seems different. You keep trying different stuff. I used to blend high calorie protein drinks with ice cream and avocados and whatever else was around. Best to track your calories and shoot for 2500 cal/day or whatever the doctor recommends. I had a hard time hitting that number every day and i focused hard on it. My starting radiation treatment weight was 160 and low a week or so after was 145. I am 5'11' so not much meat on me to start.

I also recommend keeping active such as walking, biking, light yoga, light exercise and making a schedule of daily touches with loved ones. It really helped my mood and kept me motivated. Journaling was powerful for me. I often got hard on myself wondering why I wasn't improving. I would back up in my journal and realize I had come a lot farther than I thought. Recovery from radiation is much slower than from surgery. I would see improvement every day or two after surgery. After radiation, it was multiple weeks to see it. Now, five years out, I have almost all flavors back. Some took 3-4 months to come back but others, the spicier stuff, took years. And, I still have be much lower on the spice scale than before. Best wishes for a smooth treatment and keep us updated.

Stay safe and keep the faith,
Nels

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery (neck dissection) that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello everyone,
Ive joined this forum on behalf of 66 yo my father who was diagnosed with stage 4 floor of mouth cancer. He doesn’t speak fluent english but i wanted to join to ease both his and my mind by reading other people’s testimonies.
He went through a 12 hour surgery that consisted of removing a small part of his jaw bone and putting a titanium plate across the bottom for support. He also had about two third of his tongue removed and replaced with a graft from his left thigh muscle. He then had to have lymph nodes on either side of his neck removed and also his left thyroid removed (benign tumor in the thyroid).
It’s been almost 8 weeks post op and we are finally starting radiation today. The doctor did not mention chemotherapy being needed so i am assuming that only radiation is the plan as of now. He and I are quite anxious about starting radiation as we haven’t heard the best things. Very worried about the side effects that seem to last a very long time. Is there anything we should know or any helpful advice that we can keep in mind as we dive into the next 6 weeks of treatment? Would love to hear experiences, success stories, precautions, and any updates on post-radiation life.


thanks so much, you are all so incredibly strong and resilient,

Hello Danbert, steve1 and JamesD,

I find it hard sometimes to discern between survivor guilt, which I have recognized it, and living life to its fullest given my daily side effects since caner free from HPV p16 positive in the spring of 2024. Lots of radiation to cure the cancer however since that ended in August/2024 I have terrible side effects of a dry mouth or xeorstomia and absolutely no appetite. I am currently going daily for two hours for hyperbaric oxygen Rx after reading it was successful for a patient with the same cancer and side effects from the US and the Mayo Clinic. I am slowly regaining my saliva after just over 30 sessions and going for 50. In all this survival band "beating" cancer or it going into remission and rejoicing where does quality of life come in. To me it isn't just not dying that counts but what is your QUALITY of life after surviving it. Any thoughts.

I'm not new, formerly poster Ray1971 but unable to get into my account. So here I am...still kicking at 54!

I'm sure members have come and gone over the years--but hope everyone is doing well!

For those that are just going through these times, stay strong. I've been clean for 17 years.

Ray

New here and realizing I should have put my previous message in this forum column, so please forgive the redundancy:

Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

Hello!
Reaching out to say hello and share a little optimism.
In 2021, I was diagnosed with SCC stage 3. I had my entire oral tongue and part of my base tongue removed. I was on a feeding tube for a full year with limited speech and saliva, and aspiration challenges. I thought I would only be able to eat pureed foods for the rest of my life, and was seriously considering looking into disability because of my inability to verbally communicate effectively. It was bad. Almost 4 years later, I’m happy to say my speech has improved dramatically, I work and communicate full time, and I can now eat all foods with the aid of an assistive eating tool. The assistive eating tool allowed me to move food off of my tongue and towards my teeth for chewing and towards my throat for swallowing, which in turn caused what remaining tongue muscle I had left to become strong. Same for swallowing, the more I ate, the stronger my throat muscles became. By eating, I was basically exercising the tongue and throat muscles and keeping them from atrophy. I invented the tool so I could eat, and because I couldn't find anything out there for us. If you want more info, feel free to connect with me. There is hope-- we are resilient, and the body is wondrous.
Sending hugs to those who need them.
Angilee

I had HPV p16 one year ago and six weeks of radiation ending the first week of August/2024. Very few chemo, maybe 6. I could not get rid of my dry mouth, no saliva and no appetite months and months later (Xerostomia). I heard about HBO Rx from someone who had the same cancer and side effects and he swore by HBO or hyperbaric oxygen. I go M-F for two hours in a chamber once a day. I am at around 30 sessions today and slowly I am noticing my throat is less constricted and I can swallow meds as there must be more saliva active. One oncologist on a consult before this said 3 of my 4 saliva glands were damaged and not working from the radiation. Has anyone tried hyperbaric Rx for radiation side effects?

I'm a few months late, but my husband had a partial maxillectomy to remove his palate in 2013. He has also been experiencing issues with his obturator. The fit is good (he says), very tight, but his molars on either side are loose and rotting. Either molar could fall out at any time, leaving him with no anchor to hold the obturator. If it happens, I guess temporary denture glue could help for a bit, but having any gaps drives him crazy. Gaps cause him issues with swallowing, speaking, having beverages or moist foods drip out through his nose...

He's been having a hell of a time finding anyone willing to do the flap procedure, or put in dental implants, or any procedure, to help. Radiation history is likely why, but I'm not sure. Two of his old specialists have died, others moved, one of his original surgeons refuses to do flap procedures anymore and highly recommends not to do it, and gave us gruesome examples he's seen first-hand, out of very genuine compassion. New contacts we've reach out to sound unfamiliar but 'willing to try' different surgical options (yikes & what the heck).

I wish I had something to offer you, right now. We'll have to travel to a find somebody who knows what to do. Might take months to get this sorted, but if you buzz back sometime, I'll update. If he could find a way to make an obturator work without flap surgery and without molars, he absolutely would do that.

Hi I’m recently diagnosed with stage 3 tonsil cancer with Mets to lymph node. I’ve had 2 of 6 Cispan treatments and 11 of 35 daily radiation treats. A couple days ago I started the lidocaine mouthwash/ rinse and am not having much luck with the mouth/throat pain. I’m not sure if it’s a technique thing like swishing and or gargling or kind of soaking when using the rinse or if there are more effective things, any ideas, suggestions or expectations of more things to come that’s the hardest part for me is knowing what to expect so I can prepare myself. So I’m not in a constant state of wondering what’s coming next? Any thoughts or input would be greatly appreciated thank you.

Hi CrisCQ,
I'm not sure I'm much help. I have only had moderate dysplasia biopsy and then a very partial removal with clean margins and some biopsies since then. I too feel that the foliate papillae are larger and redder since the dysplasia was found and surgery was completed. I have asked about them and told they are normal as well but they definitely seemed enlarged and I too wondered about more possible dysplasia or something else going on. I have tenderness still in the area of the tongue removal and some leukoplakia areas that have since formed since surgery and biopsy. I am working with an oral medicine doctor along with my ENT and is looking at this and says its probably not normal I am feeling pain in the area so he will see me in a month.
but like you the foliate papillae have no pain just look red and enlarged. Let me know if you find out more or get a biopsy, I am curious. It can definitely be worrisome. Wishing you well.

Huh, I can't believe I did not add in this thread an update after my general anesthesia very partial glossectomy.

It's in the other thread I believe.

Anyway last February (2024) an ENT Onconology Surgeon did a very minor partial glossectomy around the biopsy site, under general anesthesia, to get sufficient margins around where the cancer was found and to also look for other cancer.

He did a throat scope as well.

Nothing of concern was found on the throat scope.

Pathology on the excised tongue showed no further cancer, but there was more dysplasia, and if I recall correctly, it again extended to the edges of the tissue, and I believe they termed it "low grade" dysplasia (and I think some folks use low grade to include minor and moderate dysplasia).

He did note some patchy white leukoplakia I believe in the retromolar trigone that I had asked about, but noted it was more consistent with Wickham striae, and was not currently concerning to him, although he'd keep careful attention to it on follow ups.

The first year post surgery it was follow ups every couple months after it healed.

This second year it is more every 3 months (sooner if something develops of course, they'd get me right in, and I send them pictures and ask questions as they arise via text messages on the patient portal, had a few odd cankers that erupted suddenly and then slowly healed, so far nothing has required an unscheduled urgent visit).

The one tiny spot, that I thought may have been (and may still be) a suture scar, still remains. A white tiny bump, way smaller than the pimple. Painless, and not changing. I need to remember to ask if that's normal for a suture scar like that to become permanent.

It doesn't bother me, it's just there.

A few more patchy leukoplakias, one below the scar(s).

The surgeon doesn't think it's necessary to biopsy those as of yet, until at least they become palpable to him. He is happy to do it, if I request it at any point.

He thinks in all liklihood, at worse it would likely just show more dysplasia, and we had that discussion about chasing dysplasia can be a loosing game, especially if it is scarring resulting from sutures and trauma to the tongue during surgery, and he agreed with the other oral surgeons.

We discuss it and he looks at all the abnormalities each visit.

I see him again in a week or two here shortly.

The area forward of the tongue still has that patch of tissue that "blanches" when my tongue is stretched out at time (capillary bleaching they believe, but oddly to me just that oval patch that does it, right adjacent to the scars, abutting right up to it). It also has a visibly smoother texture appearance, and feels kind of rubbery when you slide your finger acrross it. The rest of the tongue in that area, with saliva, the finger just glides over the tongue skin, even over the scars. That blanching oval region, my finger kind of grabs like a squeaky windshield wiper blade on a windshield. Kind of grabs and releases, grabs and releases, but the texture is smooth. Just odd observation. It is more sensitive to touch than all the other surrounding areas too. I can rub the scars vigorously and there is no discomfort. Rubbing this other vigorously isn't painful per se, just uncomfortable. Forward of that area there is a small short "ridge", that is about midline. That too is sensitive in a similar manner.

At times that ridge is more prominent. I do not believe it is merely from the fitting of the tongue to the space between your upper and lower teeth, but it does approximate that position, I think. I can't force my tongue to rub on my teeth in anyway that is the lest bit uncomfortable, teeth closed or opened.

One thing about documenting this, is if I did not, I could easily forget that this specific area IS NOT scar from any of the other procedures.

I'll need to remember to ask him about the area to the back of the scar, deeper. It looks to me as if there is some leukoplakia extending from the scar back as far as I can see in the mirror. I am pretty sure I could easily see the entire sutured area in the mirror and it stopped well short of the limits of what I could see.

It would be nice if medical science could develop Star Trek level PET/CT scans that could detect microscopic, or at least sub-millimeter tumors. I am willing to play guinea pig, if they want to test out any new techniques in imagery!

As I understand it sub-centimeter PET/CT is still a goal too far, and it seems as if my excised tumor, quite likely would not have shown on a scan? (I had an unrealistic expectation of what current PET/CT is likely to show)

So all these other minor lesions, it's this waiting game, and trying to figure out to let things ride, vs. keep biopsying.

So that's an update after the very minor partial glossectomy pathology results and where things are now.

I am another never smoker, only tried chewing tobacco like twice as a teenager 3 decades ago, very occasional (3-4 times a year) social drinker, 1-3 drinks typically.

I did used to use alcohol containing mouthwashes, quite a lot in my 20's and 30's. That's the only risk factor we've ID'd, in my more or less idiopathic generation of disease.

Have not used the alcohol containing mouth washes since, just tooth paste for me at the moment.

R/
CQ