My wife had Stage IV tongue cancer and surgery on right side of tongue in 2006. Surgeon removed lymph nodes on both sides of neck and about 3 cm of tongue on right back side. She also had radiation (about 35 treatments) and chemo (Cisplatin). She was free of cancer until recent biopsy revealed SCC in right side of tongue. We don't know how deep the SCC is, but the MRI identifies an area 17mm x 16mm, but no 3rd dimension. The surgeon told her that he may have to remove entire tongue, but he hopes to save about a quarter of it in the very back. Would appreciate advice from anyone who has cancer recur in the tongue after first surgery, radation and chemo. The surgeon does not know the depth of the cancer.

Hi Sam. I have had a recurrance in the tongue, however as per my signature line I had it on alternating sides while your wife's is on the same side so I'm sure the treatment protocol is different for your situation. I had a flap the first time, so they could not give me another flap as that would anchor the tongue on both sides, therefore I have a graft on the most recent surgery site. I also had chemo twice - but again - was to different sides. I have about 1/8 of my tongue remaining - the portion at the very back, the spine, and a wee bit at the tip.

If you hear anything in the above that could help you or you want to know about let me know, but other than that I hope someone who has has recurrance on the same side will reply. Hang in there - rocky days ahead but hopefully all of us here can make it a wee bit easier.

Donna

Sam

My recurrence came back in the same area of the base of the tongue and on the same side (the left). I found the surgery brutal and far worse than radiation and chemo in terms of permanent after effects. Still, what other options does she have. My advice is for her to EAT, EAT, EAT now. Take her out to as many restaurants as possible while she can still eat and taste. Have her indulge every culinary desire she has.
good luck
Charm

Sam

Also as a newcomer, you will find super information on the main OCF page. Here is a sample of excellent articles
Eating & swallowing
Surgery Reconstruction
There is lots more there but these two will get you started.
Charm

Thank you for your response. It really helps us. Perhaps you can give us a little more info. We don't know much about what to expect with a tongue flap (recovery and long term). The surgeon says that he hopes to leave about 1/4 of the tongue at the back, then attach a flap. In your experience, have you been able to eat, swallow and speak? Also, she has had the max radiation and we are concerned about the flap adhering to the radiated tissue. If you had radiation before the flap we would appreciate your insights. In your opinion, has your quality of life been reasonable since the flap, i.e., no other complications and being able to enjoy life.

Thanks for your response. It is helpful to us and we are going to read those references you listed. My wife is very concerned about the surgery - could you give us a little more insight as to why your surgery was "brutal". Was it due to complications?

Sam

Unfortunately the area of my surgery had already had the so called maximum radiation (even though it was only 72GY instead of the 77GY limit). Yet the good news is that my flap adhered PERFECTLY. My quality of life is VERY reasonable even though the surgery and even more radiation left me unable to swallow or eat. If I had only had the surgery, I would probably be swallowing now after all the exercise and therapy but getting a second round of radiation as well as chemo makes that problematic.
To me the "brutal" part of the surgery was that it confined me to a Hospital for 12 full days in order to recover. Not that having tubes stuck in every orifice (even ones they made like the tracheostomy) helped, but even during the worse radiation & chemo, I would be home at night with my wife.
Life will still be enjoyable and worth living after the surgery. It just won't be the same. You have your work cut out for you as a caregiver here brother. But your wife will still be the woman inside that you fell in love with and CANCER can't take that away. Finally, if the surgery on her tongue does not involve the base of the tongue, then she will be in much better shape than I was.
Oh. last but not least, YES, I can SPEAK. Not as fast, not as fluently and it did take a while plus speech therapy.
Post any questions you like, if it hasn't happened to me, then it has certainly happened to others here. Keep the Faith and do not despair.
Charm