u/God_grateful

Our patient’s last radiation session was one month ago. He has been in Gabapentin throughout all the radiation , so he didn’t have much problem with the pain except when eating . Now, one month after radiation ended and despite he is still taking Gabapentin ( on taper) , he still has pain when eating , even putting lidocaine on his tongue doesn’t help . He tried to eat soft food but he is obviously in pain . Had anyone else had the same experience? I feel one month is a long time to still be in such pain.

Here is our patient’s information:
Squamous cell carcinoma (SCC) of the oral tongue.
HPV negative
Location: Right lateral oral tongue (the mobile/front part of the tongue, not the base of the tongue).
Treatment: Right hemiglossectomy (about 40% of the right side of the tongue removed), right neck dissection (levels I–III), reconstruction with a left radial forearm free flap, followed by 6 weeks of adjuvant radiation therapy. He did not receive chemotherapy.
Final pathologic stage: Stage IVA – pT2N2bM0.
pT2: Primary tumor measured 1.5 cm on final pathology.
pN2b: 2 of 17 lymph nodes were positive, both in the right level IIA neck.
M0: No evidence of distant metastasis.
Other important pathology details I remember:
Negative surgical margins (the tumor was completely removed).
No extranodal extension (ENE).
Lymphovascular invasion (LVI): Negative.
Perineural invasion (PNI): Present on the pre-operative biopsy.
The surgery and radiation were performed because the lymph node involvement (2 positive nodes) increased the risk of recurrence despite the tumor being fully removed.
We finished radiation two weeks ago. If you’ve had similar condition I’d appreciate you share your experience. Did it ever come back ?

Our patient was diagnosed with tongue SCC and underwent surgery (glossectomy) - negative margin , and 6 weeks of radiation. His treatment ended 2 weeks ago and he will have MRI and PETScan in two months. His surgeon and radiation therapy doctor look happy with the result. I need to know how he should be cared long time to prevent reoccurrence? He is 77 and healthy before that diagnosis , his pcp, and surgeon, or dietitian don’t give us any more details about what we need to do from now on . For example I need to know if any other test and bloodwork can be done regularly , any diet , or even what supplements to take or avoid. I want to ask those who have finished their treatment are you visiting an oncologist regularly?( in no chemo was involved) . It feels scary not to be monitored by a specialist and just rely on every 3 months scans. Have you done any of those blood test that can diagnose cancer reoccurrence earlier than it can show up in scans?
They also never told us if it was hpv positive or not. Has anyone else have the same experience ?
Honestly I’m not sure what exactly I need to know, I simply need to make sure we are doing the best care for him long term post treatment and wondering what is the best specialist we need to reach out to get advise.

Has anyone done Signatera test post treatment for tongue cancer SCC? We recently heard about this and we understand doctors usually don't order it (probably due to insurance approval). Our patient has just finished 6 weeks of radiation, after a reconstructive tongue surgery with negative margin. We want to explore all the possible tests that might help monitoring him long term and short term. I understand MRI and PETCT are standard monitoring tests and his doctor has already ordered them for the coming months. But we want to know what else can be done (regardless of insurance coverage), either Signatera and other tests. I'd appreciate you share your experiences.

Our patient , 77 y male, finished his six weeks of radiation for tongue cancer SCC ( and lymph node positive ) a few days ago. He had all the common side effects of radiation but now he feels extremely tired . He says he feels extreme fatigue especially on his neck and mouth and he has very hard time to stay awake during the day. His oncologist said it is normal but I’d like to know other experiences. Has anyone experienced this much fatigue after the treatment and how long it lasted for you?

Our patient , 77 y male, has just finished 6 weeks of radiation for tongue SCC ( he also had free flap tongue surgery 3 months ago). His healing process was very well after surgery, he was able to eat soft foods with no pain a couple of weeks after surgery and before he starts radiation. When he started radiation his doctor had prescribed Gabapentin as taper so in the last weeks of radiation he was taking totally 2700 mg of Gabapentin daily. He didn’t have pain when not eating, but eating has been challenging. He was able to eat soft foods from week 1 through week 5 of radiation, but since then he could drink only liquid protein shakes as food . His doctor says he is doing well. But today a few days after 6 weeks of radiation ended he is coughing when he is drinking water. I’d appreciate if you share your experience on how you were doing right after radiation ended and how it was in the 5, 6 coming weeks . His doctors tell us it’s different for each person , so I really need to hear different experiences. I’m so scared right now but I also don’t want to be too optimist.

Our patient, 77 M, had OLP for couple of years . 6 months ago he was diagnosed with tongue cancer and has been going through surgery and radiation. I’d like to know if anyone else here has had the same experience ? How successful was the remission and if your OLP has ever come back again ?

Our patient had reconstructive tongue cancer surgery about 2 months ago , now he is going through radiation, week 5 . We have noticed his reconstructed flap has changed color from pink into grey and it is full of blister like lesions . No other symptoms, other than white ulcers on native tongue which is normal. Our concern is the greyish flap , his radiation oncology team believe it is normal and expected , but his surgeon saw the photos today and he said it doesn’t look healthy and needs evaluation. We are super scared and also confused because conflicting opinions . We are seeing the surgeon in two days anyway but I feel I’ll get crazy while waiting for our appointment with him. Could anyone share their experience with me? I am aware of all the complications and ulcers that happens during radiation, my main concern is this changing color of flap and it’s getting into grey. Is it possible that more than 2 months after surgery now there will be problem in flap because of radiation? Again we are seeing the doctor in two days , I just need to hear other experiences while waiting for the appointment.

Is it normal to see blister like spots on the reconstructed flap after the week 4 of radiation? The new flap has also turned very greyish in the last couple of days . Has anyone experienced the same?

I need to learn about the treatment approach and plan at each of these facilities for our patient who has tongue SCC. I’d appreciate if you share your experiences. I should add I have already contacted all these centers, now I just need to know about patients experiences. For example I need to know if you have been treated by proton or photon and any other details. I completely understand the treatment plan depends on many many factors. But I simply just want to know your experience. I have done a complete research directly on each of these centers , reached out to oncologists and radiation therapists, visited each center in person and now I'd like to hear patients experiences. That would be a great help for me. I appreciate your time.

Our patient is in his third week of radiation and suddenly experiencing swollen tongue and lip and swollen lower face. His care team believe it’s normal but my main concern is increasing jaw stiffness. Now he cannot open his mouth wider than one finger and it looks very scary considering the remaining 4 weeks of radiation that he needs to pass. Did anyone else have the same experience? It got much worse starting today and his SLP has not got back to me yet but I’m worried they don’t provide the needed solution. He has been doing jaw stretches every day and it seems it was not working well for his case.

Our patient just started the 3rd week of radiation. He has pain on his tongue and taking Gabapentin . I understand it is expected , but I have some concerns . Is a swollen tongue ( on native tongue where he receives less radiation) normal ? Is jaw stiffness normal ? He cannot open his jaw normal wide and it’s also very painful . I’m super worried the jaw stiffness and difficulty in opening it gets worse and stay permanently. He is 77 years old .

Second week of radiation ended yesterday! Now the native side of the tongue that is receiving lower dose of radiation suddenly became painful today. Even eating became suddenly hard. I can see multiple white blisters on the native tongue. Starting first day of radiation the radiation therapist doctor prescribed Gabapentin. Now our patient is taking 5 Gabapentin per day ( each 300 mg). We didn’t expect the pain suddenly starts despite Gabapentin , also multiple blisters suddenly. He is also doing salt baking soda rinse everyday, no acidic or spicy food. Does anyone else have the same experience? Could you please share what helped the most? Does Healios help at all?

Hi, I was wondering if anyone have experienced artery narrowing on neck after radiation? I understand that develops year after treatment and not immediately or soon . I was told having high cholesterol can increase the risk . I’d appreciate sharing your experiences.

Hi,

Has anyone with oral lichen planus was going through radiation? I’d appreciate if you can share your experience, specifically I need to do how did you care for your teeth ? Oral lichen planus makes it impossible to use these high fluoride flavored tooth pastes .

The radiation is going to be bilateral, 60 Gy , 30 sessions , 6 weeks , after the recent free flap surgery. It starts in 10 days and the whole family is super anxious. I’d appreciate if anyone who is going through this connect with me to share the experiences.

My close relative , 77 male , will start radiation in June, bilateral , 60 Gy, right side , 54 Gy left side 30 sessions . He has upper denture so no tooth on upper jaw, on lower jaw he has dental bridges in both side (not removable ) and one implant tooth right side. He has only a few native teeth on front , lower jaw. He was visited by dentist as pre evaluation and they just said he is good to go. They only prescribed high fluoride tooth paste , but He also has lichen planus so he cannot use fluoride tooth paste. Has anyone been in this situation?

My close relative , 77, male, tongue SCC, had reconstructive free flap surgery a month ago, now getting ready for 6 weeks of radiation at Stanford soon. No chemo. We are very scared for short term and long term side effects. Surgery was good almost going back to normal eating and speech ( his normal since he had oral lichen plants for a long time) . I’d appreciate any tip to manage radiation side effects , acupuncture, natural remedies, medication, …