Previous Thread
Next Thread
Print Thread
#200831 05-23-2021 06:19 PM
Joined: May 2021
Posts: 3
Cao300 Offline OP
Member
OP Offline
Member

Joined: May 2021
Posts: 3
Hi,
I had Stage 1 SCC surgically removed from the underside of my tongue 6 weeks ago. I am told it was caught very early and no further treatment is needed at this time. I am grateful for this as I am very fearful of medical procedures. PET scan after surgery showed no indication of cancer. I did have a mild case of COVID in March and PET scan showed some evidence of COVID changes to lungs, which I didn’t expect because I didn’t think I was that sick. I wonder if COVID affected my immune system’s ability to fight the cancer. I know it delayed my ability to seek care for it.

Surgeon (ENT) plans to see me for follow up exams every three months for the next three years. If cancer comes back, plan is surgical removal and radiation. I am very fearful of cancer returning and need for further treatment. I have a great deal of anxiety about medical procedures.

Incision healed well, but about 2/3 of the right side of my tongue does not feel temperature of food or drinks and has no taste. Also has what feels like a constant burning sensation, which I believe is from nerve being affected by surgery. Dr. Says it indicates nerve is healing and it can heal for up to six months and then I will know what final outcome is.

Has anyone else had the burning sensation of the tongue after surgery? Did it go away over time?

So glad I found this forum. Have been looking for a local support group without success and feel very alone.


CAO
Stage 1 tongue cancer surgically removed April 2021
Cao300 #200832 05-24-2021 08:10 AM
Joined: Dec 2010
Posts: 61
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Dec 2010
Posts: 61
Hi!

I have had 9 surgeries over the past 11 years for SCC of the floor if my mouth and lateral tongue. Until last year these were all for stage 1 tumors or severe dysplasia. Initially I had a burning sensation in my tongue as the nerve healed. It took at least six months to calm down. After subsequent surgeries I've lost most of the feeling in the tip of my tongue. I also periodically experience pain or discomfort in the floor of my mouth from scar tissue tightening. Doing stretching exercises where I pull my tongue to stretch the floor or massage with a finger to stretch the floor alleviates this.

I found that part of the trigger for my cancer was silent reflux. I was having reflux without the heartburn that typically accompanied it. I have gone on a low acid diet which has been tremendously helpful.

I hope your recovery continues to go well and that you are able to beat it with this round.

All the best!


Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
cbhh #200833 05-24-2021 10:09 AM
Joined: Aug 2020
Posts: 53
Likes: 4
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Aug 2020
Posts: 53
Likes: 4
Hi Cao

Welcome to OCF and so pleased you caught this early. I had surgery April of 2020 (removed half my tongue and rebuilt it with flesh from my arm) and radiation (60 Gy) thru July of 2020 for Stage IV tongue cancer, squamous cell carcinoma. I have noticed improvement slowly over the months. I initially had much difficultly manipulating food, even simple food. And, I could not take anything spicy or acidic. Now, I can eat oranges again, pineapple, chips, guacamole (if plain), etc. I can manipulate complex foods such as salads, pizza, etc.

As for nerve damage, yes, I still occasionally notice small issues even over a year later.

As for possible future procedures, best we can all do is eat right, exercise, pray, reduce stress in our lives, etc. I do recommend a book called AntiCancer. Packed with all kinds of research and information about how to live towards a cancer free life.

Best wishes for a continued successful recovery.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Nels #200834 05-24-2021 12:00 PM
Joined: May 2021
Posts: 3
Cao300 Offline OP
Member
OP Offline
Member

Joined: May 2021
Posts: 3
Nels, Catherine,

Thank you so much for your replies and sharing your experiences. It is very helpful to know that I am not alone.

Best,

Colleen


CAO
Stage 1 tongue cancer surgically removed April 2021
Cao300 #200837 05-25-2021 05:08 AM
Joined: Feb 2015
Posts: 112
Likes: 2
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2015
Posts: 112
Likes: 2
Colleen: Was the cancer from HPV? If not, I have been advised that even small amounts of alcohol will cause the cancer to return (other things can do it too).


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
tlc356 #200838 05-25-2021 03:43 PM
Joined: May 2021
Posts: 3
Cao300 Offline OP
Member
OP Offline
Member

Joined: May 2021
Posts: 3
Not sure if they tested for HPV. Doctor didn’t mention it. Plan to ask if it was tested at next follow up appointment. I rarely drink, 3-4 drinks a year at family celebrations, but will avoid alcohol until I discuss with doctor. Thank you for the advise.


CAO
Stage 1 tongue cancer surgically removed April 2021

Link Copied to Clipboard
Top Posters
ChristineB 10,506
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,751
Newest Members
Legalfemme, MaryS, MuddyBob, Beth S, David Gotip
12,731 Registered Users
Forum Statistics
Forums23
Topics17,961
Posts195,920
Members12,732
Most Online458
Jan 16th, 2020
OCF Awards

Powered by UBB.threads™ PHP Forum Software 7.7.5