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Joined: Dec 2021
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VRTZ Offline OP
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Hello Everyone,
Its too early for me to say that I am a cancer survivor as I just had two surgeries last year followed by radiation & weekly Chemotherapy (cisplatin). (you are only cancer free after year 5)
It all started in the right upper gums whereby there was a bone loss in-between the teeth. The tooth after the wisdom tooth & the next one to it. This whole drama happened in June 2020. I am in Third world country (Tanzania) whereby advance treatments or proper diagnosis is not available. since the teeth were protruding in the sinus area, I had to undergo a small surgery for "sinus closure" at the same time the dentist took a biopsy of the inflamed gum and a biopsy was done. We only have a government hospital which is equipped with testing such cancers. However the results were given to the dentist after a week, but he did not share this report with me! (can you believe this?) Reason was very clear that he wanted the cancer to spread more and that means more money to him! Suddenly after 2 months, the sinus closure opened (as it was not done properly) I again went to him on 01 August 2020. Only to be told that I have a SCC grade 1. I had no time to argue or point a finger at him but i was already broken completely. I have a son who is 24 & a daughter 19. I immediately rushed to India in those horrible covid times. How i made it to India was miracle since there were only repartition flights. Anyways, I underwent a MRI whereby the doctor saw tumor in the gum and the Oroantral fistula hole. The best option for this was to put a flap from my thigh through neck resection which failed after 10 days due to the small veins. I had to go another operation with a flap from my chest (i think its called PMMC Flap) All went well and my histology reports and it was CONFIRMED that the cancer has reached stage 4 A (PT4a PN3B) and my 2 lymph nodes were infected. Radiation really hit me hard with mouth ulcers and loss of taste. From 95KG to 67KGS. i was 28kg down. Now, I AM 73kgs. as of today, no growth of beard on right side, no saliva, no teeth on right side, dryness of mouth, front of my tongue feels numbish, My right nostril feels dry, tightness in my neck, no sensation on my cheek and part of upper lip, my remaining saliva is still thick-ish after 1 year. I hate food now though i used to love food especially BBQ & dry meals
Does anyone feel like this? I feel i will never be myself again. Okay i am taking Pilocarpine but i don't see much difference. Will i really be able to eat? As now i am losing faith in everything.

Last edited by VRTZ; 12-10-2021 05:19 AM.
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Dear VRTZ

Wow. Such an amazing journey. So glad to hear you finally found a way to good medical care. Sounds like much hard work and maybe a few miracles to get all this done at such a difficult time in the world. I am about 20 months post surgery and 17 months post radiation treatment. Stage 4 SCC on my tongue. The dry mouth and loss of taste are both much better than right after radiation. I have have noticed it is still getting better but very slowly. I suspect everyone's recovery is different depending on treatment, etc. I still can't do anything spicy such as curry or BBQ (unless sweet flavors). My speech and tight neck are better if i stretch and do my prescribed exercises regularly.

Recovery from surgery improved almost daily. But, recovery from radiation was much slower. I had to learn to reflect over weeks and months. Hang in there. Glad you are part of the group.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Joined: Dec 2021
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VRTZ Offline OP
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Dear Nel / Paan,
Thanks for the encouraging words. Yes this thing is a life changer for most of us. we try very hard to be 100% normal but we manage slowly at least to 70% or more. You guys are doing a wonderful job!
Yes, recovery from radiation is very slow. Sensation also on the face comes very slowly (after surgery).
However, i still couldn't figure out my report as i thought i was still in stage 2 or 3 (as per the tumor size shown in the MRI) But the actual report came as stage 4A - ?
I can share here both the MRI & actual here if allowed, (without personal info) if someone can guide me into better understanding of my cancer.

Joined: Aug 2020
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I wouldn't be able to offer an accurate opinion on staging. I suspect this can really only be done by a Doctor. I also think it can change after they analyze your lymph nodes. Good questions for your next visit and follow-up with your medical team.

If someone does offer to analyze your data, yes, please share it in a private email to protect your information.

So glad you are doing well and an active participant with OCF.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Joined: Aug 2020
Posts: 93
Likes: 14
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Dear VRTZ

I was pointed to the following guideline off the OCF website to help with staging. Here it is.

https://oralcancerfoundation.org/discovery-diagnosis/stages-of-cancer/

Hope this helps.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20

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