Hi,
My husband was diagnosed with Stage 3-4 cancer of the base of the tongue this past April. He had no symptoms except an enlarged lymph node on the right side. It felt like a swollen gland but was not at all painful. After all the testing, they discovered a small lesion at the base of the tongue which was the primary source. He had radical neck disection and radiation and chemo. I can't add anything very technical or medical, but I can share some of the lessons we learned.
1) If your husband is strong and young and has support, I'd go for the most agressive treatment possible. We figured 6-12 months of hell is worth 30 more years of life.
2) We had the decision to do surgery first then radiation/chemo second OR radiation first THEN surgery. We chose surgery first and we are very glad we did. Our ENT Surgon (which you must get-- someone with specific experience in head and neck surgery) convinced us when he said it was easier to see the surgical site without the scarring of tissue from radiation. We are so glad we did surgery first because the RADIATION IS SO MUCH WORSE than the surgery. My husband healed from surgery quickly and could face the radiation better than if he had to face the surgery after radiation.
3) The one regret was that we did not use a feeding tube or PEG. My husband lost far too much weight and I think it added to his complications. You must keep up with nutrition. It may become extremely difficult to eat or even drink water.
4) If you do radiation or chemo or both, be mindful that the worst usually comes AFTER the treatments end. My husband sailed through treatments, even driving himself up to his last treatments. Then, within a week he was in intensive care with serious breathing problems (had to be intubated) and pnemonia.
He's doing much better now. He's home and (slowly) gaining weight.
The only advice I can give you about the kids (we have two, 11 and 13) is that because of their limited experience in life, they don't always understand the implications of what might be happening. I would stick to clear simply facts about what they might experience or how things may change as they happen. We let our kids know what was going on in stages, and didn't dump everything on them at once. And we didn't get too technical or medical. We kept a very positive but honest outlook. I hope this helps and we're praying for you. To say this will be a trying time for you is an understatement but you will get through it.
Best of Luck,
BC