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Monday's the day; any suggestions?

Posts: 20
Joined: Dec 2012

Still fairly new to the sight, but looking for some advice on how to get through the next couple of weeks. My husband's surgery to remove part of his tongue and all the lymph nodes on both sides of his neck is Monday morning. I already am having major difficultly sleeping, working, or doing much of anything except worrying. I am sure he is more than likely having more issues that I. So at times, I feel horrible thinking about what I am going through, when he is dealing with so much more!

The doctors have said it will be a 12-15 hour surgery as the reconstructive team will be there also to reconstruct what they remove.

He was orignally diagnosed with Stage 4 base of the tongue cancer, HPV+, with 2 nodes involved. He has already had radiation (40 treatements) and chemo (Erbitux-once a week for 8 weeks), and unfortunately, it did not get all the cancer; so it continued to grow and is now larger than the original tumor. I am scared because the doctors said that he cannot have anymore radiation in that area. Does anyone know if that is the case? My concern is if even one cancer cell gets by the surgeon, or if this reoccurs, what are his options then?

Posts: 761
Joined: Apr 2012

I can remember what it was like when my husband was first diagnosed with laryngeal cancer and the subsequent 35 radiation and 3 chemo treatments, which it was thought got it. But it didn't and he underwent a complete laryngectomy, neck dissection and throat reconstruction in March 2011. He was lucky because it was contained but a large tumor. I was a basket case but he sailed right thru the surgery with no complications at the age of 74. He was doing good and then in April of this year when he was having a procedure for a TEP they found a tumor at the cervical of the esophagus, cancer, inoperable. We were told radiation and chemo. But we had been told that no more radiation could be done after the first round since it was his throat and neck. But another round of 35 radiation and 7 chemo treatments were completed in July. Side effects basically the same, but worried about the cartoid artery this time due to first radiation, thankfully no problems. But we also know no more radiation due to his spine.

As of October he was NED but I know that it can come back in the esophagus further down. I try not to think about it, but it is hard. What I'm saying is try not to worry (I know impossible) if it reoccurs because it might not and your husband will come thru just fine.

As a caregiver, you must take care of yourself too. You are just as important in this battle and your health and mental wellbeing is important too. At times I just want to scream from frustration of dealing with everything and I do and believe it or not it helps.

Wishing the best for both of you. Sharon

phrannie51's picture
Posts: 4673
Joined: Mar 2012

but so doable. There are many people on this site who have lost part of their tongues with reconstruction who are doing very well. I'm sure you'll be hearing from them when they get up.

As for getting radiation again...it isn't quite as black and white as some Dr.'s would have you think. As Sharon said, her husband had rads twice, and there are several people on this forum who have also had radiation more than once. Longtermsurvivor can explain this part better than I can. But don't worry about that right now. Learning to live one day at a time is the way to go with HCN. Worrying about reoccurance at this stage of the game is using up energy you need right now.

Saying prayers and sending positive thoughts your man's way for Monday. It's going to be alright...really!!


Billie67's picture
Posts: 843
Joined: Jul 2012

Right now again!! As for now I would concentrate on just getting the surgery completed and as hard as it may be, try not to think about needing to have radiation again. I know it is easier said than done but you must try to focus on one thing at a time. That being said, most oncologists will say you can't have rads twice however it can be done. There are quite a few people on this site that have been thru it twice. I remember using all of my focus and energy worrying about my first round of chemo and rads not working because then what would I do? I expressed my concern to my surgeon and he said "that is not entirely true, radiation can be done again however most oncologists won't rapidly do that"
For the time being just focus on what's at hand. You and your husband will be in my prayers and I'm sure someone who has more experience in this topic will be on here soon and tell you more.
Take care,

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