My husband dx with HPV tongue, with 2 nodes. 1 node with extranodal extension. Recommend radiation and chemo.
Had surgery 2 weeks ago, removed tongue tumor, right tonsil and 39 lymph nodes with radical neck. Post surgical staged at T2P1M0 (lower stage because of HPV status). Going Monday for radiation planning session. 1st week post op was rough, lost 18lbs. 2nd week much better, eating well. (After I threatened him with feeding tube).
I keep reading about how horrible radiation is but he’s not really believing me.
For anyone who had surgery followed by radiation, was the radiation pain worse, same or better than the surgical pain. I don’t want to scare him but want him to be mentally prepared. He is working hard to build weight back up and increased protein significantly.
Any tips to keep him on the right path?
He’s an engineer with desk job. Thoughts on his ability to work? If so how long? He’s convinced he can work right through the entire treatment (5weeks/30 sessions).

The radiation starts out not too bad, and gets progressively worse. How much worse varies by patient. Some sail through it. Some of us feel like we're gonna die. Most fall somewhere in the middle. There's a weird plateau effect where you think it's okay, and then boom! Your taste and stuff drop dramatically. You'd think it would taper down, but mostly it doesn't, it just drops one day. Maybe not for everyone, but it's better to know it might happen and enjoy all your favorites as long as you can.

Whether it hurts or not, your body is fighting and healing, and that is INCREDIBLY draining. Fatigue will kick in at some point for most folks, and that's something he'll want to factor in. It'd be great if he could work the whole time, but it's smart for him to go ahead and schedule back up for those last few weeks, and for possibly a couple months after, just in case. (Better to have a plan you don't need, than to scramble at the last minute while you feel like crap, you know?) Radiation continues to work long after the actual final treatment, which is something most of us forget to factor in when we're planning out our time.

Calories, calories, calories. If you haven't yet seen one of Christine's posts about nutrition during surgery and radiation, hopefully she'll pop in and give you the details. As much as possible, follow her advice. I was one who struggled with nutrition (even with the feeding tube) and it really does slow down healing.

This is probably one of the only times in his life that doctors will tell him to snack and nap as a real bona fide prescription ... tell him it's okay to enjoy that. He's gonna need it. And if not, do it anyway because he deserves it.

And if he does experience undue pain, it's okay to ask the doctors for something to help. They actually will try. I waited longer than I should have (I didn't know there were more options for pain management than what I already had). It never hurts to ask.

We'll be rooting for you both!

Thanks Kristen. It’s all the unknowns that’s really scary. My heart feels like it’s being ripped to shreds when I see that scared look in his face, he tries to hide it but after 37 years of marriage I def see it. He’s always been so strong. Never taken any meds except Tylenol. Never sick, except the flu, once. I know I will need this group as we go through this journey, so glad I found this group.

Judy210,

There was a time not long ago, 2009 in my case, where a feeding tube was most always recommended. It’s not the worst thing, and can be life saving to some, like me, but these days they usually don’t reccomend one unless it’s foreseen to be needed due to surgery, weight loss, etc. They say there is better prognosis without it now.

The effects of radiation usually don’t start to be felt until the after the 2nd week or 10 days of radiation. There are other phases up until several weeks after radiation, which is sometimes the worst. Recovery can take up to two years, so this is no rush game. I don’t see any chemo, which may help in recovery.

Just try to keep the weight steady, follow recommended mouth cleaning, pain relief, post radiation neck moisturizer, and rest.

Good luck, and if you have any questions, ask here, and of course the doctors!

Hi Judy210,

I am permanently, completely dependent on my G tube

Not many end up with my devastating results, and ongoing cancer--

I have no choice... It's the feeding tube or not exist, for me.

Crystal J.

I would guess it has something to do with chances of infection and making patients keep up their swallowing practice and such-like, but I am sure he could clarify. It's definitely still something many of us need, whether short-term or long. It does seem that more patients have come on in the past couple years not getting a tube automatically than getting one automatically, as I did (though we knew I'd probably need it anyway).

((hugs))

Look up the studies done by medical professionals at various hospitals or study groups. It’s not new, probably several years old. It’s not to say no one will get a feeding tube, but for some it’s to try to get through treatment without one. Basically it’s up to the individual doctor or hospital, and patient and area of cancer and willingness to get a tube or not. They have said those that did without a feeding tube recovered their swallowing faster and relied less long term on using one.

I also read several scholarly articles where feeding tubes should be avoided IF POSSBLE. I had to scare my husband into eating after surgery but after meeting with his doctors, he’s trying to get his mind wrapped around this pain he will experience.

I went through 34 RADs (about 7 weeks) a month after my surgery. I resisted the need for radiation since 30+ nodes were clear but Cancer board recommended rads since cancer was deep and in close proximity to a nerve. I thought I was superman flying through the first 4 weeks of rads w/ no problem. Worked during the day and had my radiation appt. in the afternoon.

Went from 180lbs to 160 post surgery. Doc said I needed to keep my weight stable and not to fall below 10lbs (150lbs) or will look at feeding tube option. I hated the feeding tube from the hospital so that was my motivation to supplement meals with a banana shake w/ Ensure.

By the end of the 5th week is when rad treatment knocked me down. The skin on the side of my neck cracked, peeled and began to puss. Any movement or turning of my head caused pain. I was taking 800mg ibuprofen to help w/ the pain. Nurse practitioner gave me some soothing burn cream to place on my open sore and covered it with a non stick gauge that i used daily. Took about a week or so before new skin finally grew back. At this point, I took 2 weeks of leave from work to focus on recovering and just to rest. Weighed in at 150lbs after finishing 34 treatments avoiding the feeding tube.

Every treatment, dose and experience will differ from others but this is what I went through.

Keep supporting your husband as he goes through this and he will make it through. I don't know how I made it through this whole ordeal without my wife being there for me. I thank her whenever I can and I tell her that she saved my life.

Justin.

Radiation was pretty intense for me. I now remember the day I started to lose my taste buds, but I didn't know it then. No one warned me this was going to happen. No one even warned me of the pain I would be in. It wasn't until I went in for treatment one day miserable and crying that they told me I could actually take something for the pain! Percocet for breakfast, lunch and dinner...not great to get off of but it sure did help me manage my pain. The hardest part was not wanting to eat because I couldn't taste anything. I ended up eating oatmeal pretty much every day all day because it was the only texture I could stomach. I would supplement it with Benecalorie, an odorless, tasteless calorie supplement and drink Scandishakes because I could still make out a tiny bit of chocolate flavor. Both of which I quickly googled just now and you should be able to get online. I still lost 25-30lbs over the course of 8 weeks and I was starving all the time but I didn't want a feeding tube. It gets worse before it gets better but I do have all of my taste back and aside from having no feeling on the left side of my tongue and not always being able to move food around in my mouth very well, I'm back to eating normally. I am 6 years post treatment though, but I remember radiation like it was yesterday. Sending positive thoughts to you and your husband. You will get through this. -Marie

My experience with radiation was that I was able to drive myself to radiation throughout my 33 treatments. Radiation doesn't hurt while your getting it, but being on a table and completely restrained can be very unnerving, but it generally only lasted like 10 minutes. I had to wear a mouth prosthesis that propped my mouth open along with the mask that completely immobilizes your face. It's not fun but, it's over in about 2.5 songs. I was in and out every day in about 30 minutes total.

As the weeks went by I generally felt more tired, but not so much that I wasn't able to still keep up on things around the house. By about week 3 of radiation, my neck did end up getting red and needed Eucerin to be moisturized and the inside of my mouth did develop sores and at one point the entire inside of my mouth 'shedded.' You would think that was a big deal but by that point, there wasn't much taste left so it's not like I was enjoying food or anything. The weeks AFTER radiation was the worst for me. Everyone was basically like, oh the week after will suck then there should be an upswing but no, not with me. I maintained my weight up until the end of radiation then for 4 weeks straight I lost weight. By then there was no taste and the fatigue was so bad I barely was awake or had the energy to even attempt to eat. The oxycodone and morphine contributed to my sleepiness but I needed it to get through the residual pain in my throat. Not feeling like myself and not participating in life made for a dreary existence for that solid month and then some. The good part is it's all temporary, but when you're in the thick of it, it's hard to be patient for your body to get back to normal.

Judy,

Your husbands deal is just like mine, but I just had the surgery and believed my doctors that i only had a 17% chance of the cancer coming back. Unfortunately I lost the odds and it came back 4 years later so I went through a hell of 30 days hooked up to chemo drips and 49 whacks of radiation. I hope you husband with retains his ability to swallow because 1/2 through my esophagus closed up to a pin hole and asked for a gtube. I was not able to swallow or speak for three months. My last radiation was August 2 of 2018 and After my 2nd throat dilation I i was able to eat again and refused to use the gtube. I did lost 50lbs and now back to my freshman college weight, but was able to maintain at 200lbs, so the doctors allowed me to have the gtube pulled out. Radiation really sucks and as the earlier posts mentioned, the first few weeks are easy, then your husband will feel like he got the shit kicked out of him and work will be the last thing on his mind. I hope he keeps the protein going and rests and I wish him well and not to have the same results and pain that I experienced. Take care and I give you props in helping him.

I forgot to mention I am going for my 4th dilation and still have 3 or more to go before my esophagus is almost as wide prior to the radiation.

I feel your pain. It does really suck.