Chris,

Good job staying on top of all this and thank you for sharing it. Sure to help others and hopefully someone has had similar experiences and can help you. I do have random jaw/neck pain. I think they are simple cramps. It comes on fast and intense and I try to work the knot out with my fingers and by stretching my neck around. Sometimes they last 5-10 seconds and sometimes they last nearly a minute. I can get them in small batches but normally only a few if I do. And, I can go months without one.

Not sure if that is part of your experience but maybe it helps.

Stay safe and keep the faith,
Nels

Hi Marc,

I agree that you are quite fortunate to have wonderful medical services so close and that they jumped on this quickly and you found it early. I went thru a similar surgery (removed half my tongue, all nodes same side of my neck, rebuilt tongue with flesh from my forearm, nasal feeding tube, trache tube) followed by radiation. Did you get your lymph node results yet? That was key to my followup and determining chemo or not.

My tongue was swollen for many weeks. So much so that I don't recall when the stitches dissolved. It was at least a month before I felt like I could start doing some normal things with it such as manipulate food and speak with some clarity. It was almost two weeks before i could close my mouth enough for my teeth to touch each other.

I made it clear to my medical team that I wanted to eat, drink, and speak as soon as possible after surgery. I was speaking a little the day I woke up. You could barely understand me but they encouraged me to speak early. As for drinking and eating, they made me pass a water test first. About 2 or 3 weeks after surgery, I proved I could drink small amounts of water over the top of my nasal feeding tube and they agreed to remove it.

It was months of learning to speak, drink, and eat again. I had my first conversation with a random phone stranger about 2 months after surgery and they mostly understood me on the first try. Today, just over four years later, spicy is about my only hold-back. But, I can manage a 3/10 on the Indian food scale! Alcohol tastes terrible except for a stout. I think it hides the alcohol flavor well. I treat myself occasionally.

BTW - I am not a smoker, social drinker only before this, 52 years old at diagnosis. Happy to jump on the phone with you as there is so much more that I forget to write about. Let me know and if interested, we can set up a time. If anything just good to practice your speech!

Stay safe and keep the faith,
Nels

I suggest blending. I got a Vitamix and would put all kinds of things in with ice cream or milk such as avocados, less acidic fruit, veges, muscle milk, protein powder, etc. Let us know how it goes.

Best,
Nels

Hi!

I wasn't sure if I should start this thread here or in the Post-Treatment Forum. but since it is directly about eating, I decided here was more appropriate.

I'm on a Full Liquids Diet right now and probably for another 10 days or so. So much of what's on the list is sweet - puddings, ice cream, stuff like that. I have had some Greek yogurt but it feels like the acid is inflaming the skin by the sutures.

I did have some Wonton soup (Broth only) and that was a good change of pace. Can folks suggest other more-savory items? Obviously, I don't want anything highly spiced. But I am getting quite done with ice cream (with no stuff in it), even though it's one of my favorite things. No one who knows me would believe it but I've actually been preferring Vanilla since it's generally less sweet.

I would appreciate any suggestions you may have!

Thanks!

Hello everyone!

My name is Marc. I found this forum yesterday and joined today. I'm a 65-year-old New York man who never smoked tobacco.

Here's a quick summary of my experiences to date which led me here. (These dates are all in 2024)

1. Feb 15 - I go to a New York Dental School for my dental care. Dentist points out a small irritation/polyp on the lower left of my tongue. I scheduled a follow-up appointment with Oral Surgeon at Dental School for May 10 (today).
2. March 07 - I see my Primary Care Provider (PCP) and mention this. He agrees we shouldn't wait until May. I make an appointment with an Oral Surgeon who I have worked with before (and respect).
3. March 12 - I have a consult with local Oral Surgeon. He feels biopsies are in order; one of the central "polyp" and another of the irritated area surrounding it.
4. March 15 - Biopsies performed and sent to lab.
5. March 28 - Speak with surgeon. He informs me the center "polyp" is a SCC. Reccomends Dr G at well-known Cancer Center. I call and make appointment for April 8. Over the next few days, I fill out pre-appointment paperwork for Dr G and authorize his Cancer Center to obtain the slides from the Biopsies.
6. April 8 - I see Dr G. He confirms SCC Diagnosis; schedules surgery for May 1. Explains his plan for partial Glossectomy of the left side of my tongue.
7. April 16 - I have pre-surgical physical, CT scan, and PET Scan all in one day. I am astonished at the efficiency of this arrangement.
8. April 22 - See Dr G for pre-surgery appointment. He indicates that in addition to the partial Glossectomy, he also needs to do a Dissection of my left neck and remove lymph nodes, etc. Details won't be known until after the lab can review the tissues post-surgery.
9. May 1 - Surgery Day. Drain installed, neck dissected, partial left glossectomy, PEG (Feeding tube). Complete Voice Rest - No speaking at all.
10. May 2 - 5 - Kept in-hospital. IV antibiotics several times a day, Feeding through tube. Then started clear liquids on 5/4, full liquids 5/5. After tolerated full liquids, Feeding tube removed.
11. May 6 - Sent home. Maintaining Full Liquids diet; told will be for two weeks, then graduate to Pureéd diet.
12. May 8 - Permitted to speak a little. Doing so as little as possible.
13. May 13 - (Late afternoon) Post-op appointment with Dr G.

Firstly, I consider myself to be incredibly fortunate - My SCC was found early while still small, I live near NYC which has some of the best facilities available in the world, and my job has been very supportive.

But this has been a whirlwind for me. I've learned things, tolerated things, and even rejoiced in things that would have revolted me previously. (Like the drain)

I do have some questions that I want the answers for, even if I'm not going to like them. I need to build realistic expectations for how long some of this recovery will take. I know everyone's body is different and people heal at different rates. So what works for one Patient may not apply at all for me. But I'm asking for whatever info you're willing to share from your own perspective.

A. The sutures in my tongue are a large annoyance and they are painful. (Somewhere about 4 - 5 out of 10). Dr G warned me that as the swelling of my tongue changed, the feel of he sutures would, also. These are self-dissolving sutures... I realize that nobody knows how deep, wide, or long the incision is. But is there some general idea of how long these will take to dissolve? Some things I read made it seem like it could be another eight weeks. That would be really difficult for me but whatever it is, I have to surrender to it. But I would like to have some idea of other people's experience.
B. When I left the hospital, the nutritionist said I should stay on the Full Liquid diet for two weeks and then the pureéd diet would be next. How long did other folks have to stay on that?

Thanks very much to anyone who has read this far.

Marc

Welcome back.. I too have been absent for a while. BTW, does anyone know what happened to Brian Hill and Christine???

I am 15 years out. I did have to start using a feeding tube a few years back.. And my voice sucks!! other than that....I am great!!

I have just finished some treatment following extraction of 3 molars 10 years after treatment. The extractions created necrosis but I realized that bone loss, minimal saliva production, and loss of blood flow create problems that can surface at any time in the gums or jawbone. I would recommend seeing a specialist and start a diagnosis. This does not happen for no reason or clear up on its own. (Mine were pulled without guidance from an ENT or other specialist to my regret)

Great news Kevin

Well the chest and armpit lumps,bumps, vessel and valley (lymphnodes and vessels ?) were enough that I ran it up the flagpole on both my medical chains of command.


My CCC ENT Cancer Surgeons PA-c called me in response to a message I had sent their office. I had said I saw my regular doctor that week for a scheduled annual physical, scheduled even before I even hear of a cancer.

I said I don’t feelg anyything in my neck or jaw line area at all, tongue was healing fantastic, but I have some lumps in my armpit and chest. Should I work that up through Dana Farber or my regular doctor. My Oncology surgeon had previously said it could be axial lymph nodes due to a TDAP vaccine I received 12/2023 before my biopsy from a work finger laceration. But the lumps were getting more noticeable.

IIRC they initially said their office stopped basically at the lower neck clavicle region. My tumor was so microinvasive I am pretty much just in ENT surgery there at this point. So they said I should bring it up at the physical that week.


I do, my family doctor feels one of the groupings and thought it was something to some degree atypical, mentioned briefly about doing an ultrasound to ensure just some benign growth like lipoma (fatty tumor; harmless if all it is for the most part). We then started talking about my follow up care at Dana Farber.

I said I’d see the cancer surgeon every couple or three months for a year or so for close follow up. Nothing further planned at this point, but I had hoped some imagery would be done PET/CT or something just to rule out no other tumors.

My family doctor says something like, well that will ID anything suspicious in your armpits too. He then wrapped up the visit; before I could process that he was kind of implying he was counting on the other place ordering a PET/CT. The same Dr. had asked me to see if there were any tests my cancer Dr wanted him to order and the like, and the other Dr was like nope at this point it is just follow up care.

So I told my Dr at the physical all that and he was cool with it, and I left before I could string my thoughts together that I didn’t think a PET/CT was in the current plans….and I have these lumps.

So I send another message back to my Dana Farber Dr’s office with all of that development. My Surgeons PA-C called me back saying that they would go ahead and order the PET/CT, it would include that region, but it needed to be like 3 months after the 2/20/2024 surgery for healing and to help rule out false positives and such.

I am like ok, but these armpit bumps have me worried to leave them “growing” undisturbed until then.

That weekend I found more lumps and bumps on both sides, nipples to armpits.

So I send my family Dr’s office another message with all that (I have a prayer with written messages; phone calls I can take and receive a simple measage beyond that we might as well be speaking Swahilli to each other) asking to be seen sooner, these things are noticeably more noticeable (LoL) to me, and on both sides.

So I see my family doctors Nurse Practioner for the next available and then they set me up for a priority ultrasound and male mammogram.

Nothing is really found but some smaller lymph nodes and heterogeneously dense breast tissue that makes small tumor detection difficult.

So now I am like great, did all that, still feels like I have some kind of glandular inflamation lumpy bumpy thing going on in the armpits, and they just said let your doctor figure out whatever it is.

So I do go see my Dana Farber surgeon a Monday 4/29/24.

He is a surgeon, so I’d kind of like him to either do a deep palpation to feel what I am feeling (both the fingertip feel for me and the way it feels when pressed together is what makes me practically scream in my head; SOMETHING IS NOT RIGHT HERE. Dont care what an ultrasound or male mamogram says something is up…) or might let me consult with a breast cancer or cancer plastic surgeon who would then feel the lumps and say it is gynecomastia or whatever.

Even then I am kind of hoping they’d feel the chunks and slice some out to biopsy.

With or without PET/CT agreeing.

Either way I need to work that issue to the ground and keep tabs on it.

New thing today, this morning around breakfast is right (same side) jaw pain while opening jaw and chewing.

New, never had before.

Took 4 Ibuprofen for it and gingerly ate dinner.

If it stays low key I’ll just mention it when I see the Dana Farber surgeon in under a week. So far after surgery it is not like it’s possible it is recovery from procedure.

General arthritis or something more sinister is the concern.

Not losing sleep about it, and wont unless it becomes unbearable to eat; then I’ll call his office to if nothing else grease the skids before I head down; so he is aware.

If it mostly subsides I’ll just mention in person and ask about the armpits.

I feel weird even asking my ENT surgeon to feel my armpits, part of it is just that tissue dexterity and feel.

My wife tells the story of an ER doctor pressing on her teenage stomach saying if it was apendacitis it would not present like this…yada…yada…hours later no improvement…they call the surgeon in, one touch and he’s like yep; that’s gotta come out, yesterday, prep her for surgery….and she had a near burst appendix experience…

Why my chest/breast/armpits would just get all lumpy & bumpy and somewhat swollen or sore I have no clue. How bad a possible malady or male manopause kind of thing I don’t know.

Just not a huge fan of relying on medical coincidences; when things in the body are already going squirrelly enough if you know what I mean.

So summarizing the two big nagging questions:

1.) armpit/breast/nipple lumps?
2.) jaw pain?

Not sure what the PET/CT scheduling and confirmation may look like.

I’ll follow whatever recommendations my doctor gives me and will keep trying to pin everything down with the various teams.

If I was getting the full CCC tumor board experience with an oncologist and radiation and all that I think much of that is the standard package for being forwarded to the respective specialist, and I get it mine, thus far us a surgery only case.

I just don’t want to slip through the cracks by being to healthy to not get a full litany of screening; and also not wanting to be frivolous with precious scanner time etc…

Feels hard to not worry about becoming a hypochondriac nor on the other end being a mere spectator on what happens to you in your own health situation.

This forum has been great in getting me to think the correlsonding thoughts for informed consent and the like.

Doctors are great, mine have been fantastic, but trying to figure out how to be thorough and yet effecient with time spent with them.

I guess I don’t know what I don’t know on who I can ask to find a surgeon who knows what man armpit lumps are supposed to be like and to decide to biopsy or whatever.

They are annoying enough as is; unless there was serious risk of pretty severe complications and if I was strongly advised against it; I’d want them gone if they became more cystic or painful feeling regardless of how benign a condition:

So thats my current situation and plan.

Any other thoughts/comments or things anyone would recommend I talk with the doctors about is appreciated.

I’ll update as things go along.

Thank you and best wishes to all,

Chris