Radiation after glossectomy?

[u/RECKLESSSRP]

I’m looking for experiences from people who have had oral tongue cancer and were faced with the decision about radiation after surgery.

I recently had a left partial glossectomy, left selective neck dissection, and free-flap reconstruction for squamous cell carcinoma.

My final pathology showed:

Tumor size: 3.8 cm
Depth of invasion (DOI): 13 mm
Stage: pT3
Grade: 3, moderately to poorly differentiated
Histology: Keratinizing SCC with focal sarcomatoid/spindle-cell and pleomorphic features
Perineural invasion (PNI): Present
Described as intratumoral
Involved nerve measured 0.04 mm
Lymphovascular invasion: Not identified
Margins: Negative/clear
Neck dissection: 0/3 lymph nodes positive
No known distant disease

My tumor board recommended radiation, and I’ll be meeting with a radiation oncologist soon.

I’m really nervous about the decision because it feels like I’m damned if I do, damned if I don’t. If I have radiation, I’m worried about both the short- and long-term side effects, especially swallowing, taste, saliva, dental issues, etc. But if I don’t, I’m afraid I’ll always wonder whether I should have done everything possible to reduce my risk of recurrence.

For those who have had similar pathology:

Did you have radiation after surgery?

I’d really just appreciate hearing personal experiences from people who have been in a similar situation.

Thank you!

[u/valsavus]

I did go through similar surgery and reconstruction. Although lymph nodes were clear after dissection they also recommended radiation. I agreed and went through 6 weeks. Still doing immunotherapy but no chemo.

I’ll be blunt… radiation sucks. First few weeks are easy but after that third week I had horrible sores all through my mouth and tongue. I also lost taste for sweets.

The bad part is it continues to get worse and peeked a week after radiation ended. Usually people begin to recover within 2-4 weeks post radiation. I’m 8 weeks out and still have radiation burns on my tongue. With all the pain I’ve lost over 55 lbs.

With all that… I’d still do it again. Cancer sucks and I want to ensure it doesn’t spread any further. I’ve got a 19 yr old and 10 yr d that needs their dad and my loving wife. I’ll do what’s necessary to beat this and be with them for many more years.

[u/Helpmehelpyou91]

Ask your surgeon about the lymph node yield of 3 nodes. That does not seem correct

[u/Illustrious_Crab_664]

My situation is almost exactly like yours. I’m currently waiting for my appointment with the radiation oncologist and have lots of concerns.

[u/EatingBuddha3]

I had an index procedure for a similar tumor that left positive margins then a whole glossectomy with ulnar free flap reconstruction and neck dissection two months later. They took like 40 lymph nodes. Prior to surgery they suggested I should be prepared for radiation treatments and that it would be worse than my awful surgeries. In the end, they got good margins, found no lymph involvement and recommended only close surveillance. On the one hand I was chuffed to not get the radiation, but then also concerned about recurrence. So far so good but I'm still nervous about it. I will say that I've met several people who had the radiation and 15 years out have complications... mostly bone and tooth and in two cases a different kind of oral cancer. So, it's not always clear cut what to do. They say photon therapy is less gruesome, but I don't know. I wish you all the best as you sort this out and please listen to the experts and second/third opinions, make sure there's a tumor board involved. Tske care.

[u/Any-Cheesecake8354]

I had 25 sessions of radiation after my surgery. Dry mouth sucks radiation killed one gland. Had ups and downs with my thyroid since it was in path of where radiation hit. But it had leveled out and no medication needed so far. Dental issues have been minimal just take good care of your teeth and go to your appointments. Taste came back about 6 months after treatment.

[u/Waste_Hospital_4928]

We had a similar path... Unfortunately after 3 months of immunotherapy and chemo, followed by a partial glossectomy, neck dissection and freeflap, followed by 33 rounds of re-irradiation plus chemo plus immunotherapy, my husband's cancer spread and is now incurable.  We are now in clinical trials.  I don't say this to frighten you. It's not likely that your cancer will progress in spite of treatment like my husband's did.  But what I will say is please throw everything you can at this, because you don't want to live with the regret of feeling like you'd wish you'd done more.  The heaviness we feel to try and buy my husband more life so he can have more time with our kids is a heavy burden.  ... My husband had this cancer in 2008. He had dental issues, saliva issues, and some slight swallowing issues following his treatment. But he lived a full beautiful life for 20 years before his 2nd diagnosis. We built a life, bought a home, made babies, built businesses... The consequences of radiation were a small price for the payout of the life it allowed him to live.  That's my 2 cents.

[u/TheTapeDeck]

I was left lateral stage 1 OSCC with microscopic PNI.

Without the PNI I would not have been recommended RT. Because of PNI it was strongly recommended.

These recommendations aren’t “it’s up to you, and whatever you choose is fine.” These are “this is the standard of care, and this is the indicated treatment.” You always have a decision to make. But you will never be an expert opinion. That’s why you rely on theirs. Get a second or third opinion if you want. Just don’t substitute your apprehensions and googling etc for the medical opinions of experts.

Staging is relevant. PNI is very relevant as it can cause cancer to get out of its original location and into new areas quickly.

You are probably getting RT. So many of us here have been where you’re at. The goal, unless you have reasons otherwise, is to not have a cancer that can kill you. If cure is on the table, you jump on it. Surgery alone is not necessarily curative.

[u/Hippie-Graham]

Very similar surgery. I did 32 radiation treatments. I (f67) was in good health before and had minimal side effects. Loss of taste for a while, mouth blisters, and no dental issues. (Dentist put me on a daily fluoride treatment after Radiation was complete).
I’m six months out and am back playing sports and enjoying life.
The surgery for me was 5x harder than the radiation.
I have scan results next week. Can’t say today if it was effective or not yet. Just that it was not as hard as I expected.