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#202010 05-10-2024 04:12 PM
Joined: May 2024
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Joined: May 2024
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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


Very new to all of this. Still trying to wrap my head around much of it.
I consider myself extremely fortunate that my carcinoma was found so early.
1 member likes this: ChrisCQ
Joined: Aug 2020
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Joined: Aug 2020
Posts: 146
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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


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
1 member likes this: ChrisCQ

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