SCC of the tongue.Almost finished with radiation.

Michael_IN

Hello. This is my first time reaching out. I am 54 and was diagnosed with SCC of the tongue in mid August of this year. On September 9th, I had the pleasure of enduring a 12 hour surgery to remove about half of the left side of my tongue, removal of 34 lymph nodes, and reconstruction with a flap twice (first did not have good blood flow).

My surgeon said that 100% of the cancer was removed with clean margins all the way around and all lymph nodes that were removed were clear. I don’t know the staging and I don’t care to. I was then told I needed 30 rounds of radiation for 10 minutes a day and no chemotherapy. I had a g tube put in and was fed that way for a month after surgery. Once I got home I was told to eat and drink everything I could. I did, and had some taste from the part of my tongue that was left. I thought I had gotten lucky!

Three weeks later I started radiation. Four weeks in I started getting sores (only irritation no pain) and then lost all taste. I have 8 days to go. I stopped trying to eat by mouth a week ago. Swallowing is not a problem. Everything tastes revolting so I had to fall back on that damn g tube. I was crushed. I will say that what I have read in the forums is not encouraging to me. Cooking and eating was the greatest joy of my life.

Next week is Thanksgiving. It will be the first time in 20 years I have not cooked. I am planning on not eating this meal. I just can’t do it, no matter how badly I want to.

I have a gas grill, a flat top griddle, and a Big Green Egg with all of the toys. So yes, I used to cook, entertain, and eat a lot. Now, as I read what others post, I can’t help but believe that I will never cook again. If I don’t get any taste back, what’s the point?

Oh yeah, then we have Xmas coming up, so I have that to look forward to as well. Everyone says I will survive the cancer, but I don’t know what I will do if the greatest source of joy in my life is gone. I cooked for my wife and our families all the time. Sadly I think those days are gone. I don’t know what I will do, and sorry but positive vibes aren’t going to bake this better.

Any ideas, other than rely on other people for the rest of my life?

wbcgaruss

Michael_IN Welcome to the CSN Head and Neck discussion forum.

Take heart my friend, you are just at as a bad spot right now.

What you are going through right now is completely normal for H&N cancer treatment.

It seems everything was going pretty well for you until you were in radiation for a bit and you completely have everything tasting like crap so you went back to the G-Tube. That's OK, that is what it is there for to help you when you can't eat well due to some difficulty. There is no shame in using the G-tube when you need it, it is tour friend and your lifesaver.

First off look on the bright side, you had successful surgery with clear margins all around and you are nearly done with your radiation. I too went through radiation and I remember very well food having no taste and how very difficult it was to eat with no taste. I was forcing through enough calories each day to maintain my weight, and I had the G-tube to back me up if needed. If you have a situation where you can't maintain your weight get some Boost VHC which has 530 calories in an 8-ounce serving.

So first off going in they first focus on getting the cancer and saving your life, and I am sure that is what you were thinking too if you are like the rest of us you just want it out, cancer gone. So they have done that and are nearly finished with the process after the radiation is done.

Right now you are lamenting not being able to eat due to taste but you can swallow, that is very good.

Your taste is off due to the radiation, we have all gone through that.

Your taste will slowly return, but you will have to wait and see how much you get back. Some people get quite a bit back, some not so much, but we are all thankful to be alive and see the sunset another day.

So right now you are just in a bad time and looking ahead in the future assuming what will happen and how much taste you have lost, but it is temporary AND A PART OF GETTING radiation.

Thanksgiving, Christmas, tell me about it, you are not the first to have their treatment over and affecting major holidays where many times food is the focus. Also think about life in general, if you go somewhere with a friend it usually involves food at some point in the outgoing even if it is only stopping for a cup of coffee.

Don't let all this get you down, just take solace that you may have some compromised holidays your life has been saved from the cancer that surely would have killed you.

So, this eating and taste is rough right now for you, but you should head into the holidays just like you always did and not change a thing. Be happy, celebrate, be thankful, and cook for others since you enjoy it. Bless them with some wonderful food. You can partake in a variety of foods in very small portions to test each to see what may taste decent to you. Eat what you can, Bless others and what you can't eat give to someone.

Also, with this taste and the whole H&N recovery in general, I want to let you know you are in the early stages yet. Once you finish your radiation, you are still "cooking," as we say. The radiation is cumulative, and it will still be affecting you for another couple of weeks after it is finished. Then your actual recovery starts.

Recovery from H&N treatment is a slow process measured in weeks and months, not days and weeks like the flu or common cold. You had major stuff done and some intensive treatment done so just relax and give it time. Radiation can make you tired.

So after you finish radiation, the general estimate is that it will take at least 6-8 weeks before you start feeling improvement, and that improvement is overall, like tiredness, taste, saliva flow, swallowing, etc. And some people feel really tired and beat up from radiation and this is the time periopd they say they are noticing feeling a little bit better each day.

Also, full recovery from this to the point of you feeling generally good and like you were before this all started can range from 8 months to a year or more.

Do not have your feeding tube removed until you can maintain your weight by eating for at least 2 weeks.

There are many possible after effects we end up with after treatment in many variations. How much taste and other functions and how well things turn out is another thing but stay positive, you will do much better, don't hold back, do everything you did before as much as you ca, surer there will be adjustments but you have to be adaptable and don't let this encounter with cancer take anything away from you. You will get recovered and be eating and tasting again, just hang in there.

This year holidays may not be quite the same, they may be altered a bit but there are other years to look forward to now without cancer hangin around.

If I can help with anything else let me know.

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

Wishing You The Very Best

Take Care, God Bless,

Russ

Our Motto on here is (NEGU) Never Ever Give Up

Michael_IN

https://csn.cancer.org/discussion/comment/1719101#Comment_1719101

Thanks, Russ. I’ll try to take your advice to heart.

Swoosh13

Dear Michael_IN,

Feel free to check out my posts about my husband's journey with SCC of the left base of his tongue and 2 involved left side lymph nodes. He was diagnosed Stage 1 in early July 2023 (so about a year behind your timeline). His only symptom was he found a swollen lymph node on the left side of his neck, and thankfully he told me right away and I got him in to see my ENT. Followed by an ultrasound, CT scan and biopsy, they saw the tumor and 2 involved lymph nodes, and also it was HPV 16+ (which is a good thing for treatment and staging). Next was the PET scan mid-July '23 (which saw what we already knew). Met with the 3 tumor board doctors (surgeon, oncologist and radiologist) late July. The surgeon ruled out surgery as (apparently) the tumor was too close to his hyoid bone (I think) and she wasn't sure she'd get clean margins. Plan was to do 33-35 daily radiation and 7 weekly chemo (Cisplatin). So I cannot comment to the surgery part as fortunately he did not go through that. We live in southeastern WI so we also sought a second opinion at Northwestern in Chicago in early August '23. They all concurred on the treatment plan with no surgery.

It was a slow growing tumor apparently, and thankfully they caught it early. He started his 7 week course of treatment the day after Labor Day 2023. Was doing fine until week 3 of radiation when his taste went to hell (first two things were bacon and hamburger which tasted terrible—as you already know). Also about week 3-4 he got a blood clot in his right leg and ended up in the ER and 2 days in the hospital. He's been on a blood thinner ever since (which they recently cut in half as his clot has remained stable). He lost about 30 pounds during treatment with no feeding tube.

What I want to tell you here is that my husband LOVES to cook and eat as well. I very rarely ever cook because he is just so much better at it. I felt kind of useless getting him through the treatment making protein shakes, ice cream drinks and oh yeah a full box of mac 'n cheese for the 1,100 calories, which he could get down. Those last couple of weeks are the hardest, as are about the next 2-3 weeks when you finish. He also had mucositis (mouth sores mostly from the chemo), although fortunately he never had to take anything other than Tylenol for.

The first thing we both did when he finished treatment (not sure of your work status at this moment, we're semi-retired and he is 68) was go out to really good breakfasts several times a week. He actually found that bacon and ham tastes came back first. It also helped him put about 10 pounds back on, so he is still maybe 20 down, but for him it's a healthy weight as he's diabetic. He is now much better with his current weight as his diabetes is now almost at a pre-diabetic level.

Also he finished treatment last October 27, 2023, so a month prior to Thanksgiving. We still made Thanksgiving dinner for both of us, although of course he couldn't taste much at that point. Christmas was a bit better. One thing we did (after clearing with his Oncologist) was get him on 50 mg Zinc per day (on Amazon Zinc Sulfate tablets by Geri Care). Anecdotal info on this board that it could help with taste, so he still takes it.

He is currently at 60-70% taste on most things. Some better than that, some not. He had a terrible sweet tooth prior to this, and that seems to have faded, especially with chocolate. He can absolutely taste the first few bites then nothing.

However, nothing tastes BAD anymore, which he says is the best part. He had his post-PET scan in 2/24 (all clear), and goes every 3 months for appts with the 3 tumor doctors (they rotate) … in early 2025 he'll be going every 4 months probably for the second year.

He cooks for us about 95% of the time (he's laughing now as I read this to him), and really enjoys shopping and cooking. He has also started to search for more online recipes (healthier) that we haven't tried before. We took our second vacation last weekend post-treatment to Nashville and although he typically is not an alcohol drinker, he had a few doubles of bourbon/diet coke down there and could absolutely taste them. He tried my wine, couldn't taste, but again, he really doesn't care for wine anyways.

It's a "new normal," for sure; he took off of his part-time job from August 2023 to May 2024, when he went back 3 days/week (his old schedule) and his boss was so happy to get him back as well.

He's been like the energizer bunny with house projects and such and walking our 2 dogs twice daily and at his last oncologist visit on November 11, his oncologist told him that the subsequent weight loss that he's now kept off for one year will add years to his life. That was good news (even if losing weight this way is terrible, not recommended).

Russ, I see, has given you alot of great advice and wisdom, as he does to all of us here. I know the last time I wrote maybe a month ago, there was another gentleman on here that answered and said his taste improved even more in year 2, so there is that as well. Everyone heals differently so take what some of the others say as just that.

You are young, that will definitely be in your favor. Lean on your family and friends if you can. Yes it sucks about Thanksgiving coming this week, and just rest, and watch some football if that's your thing.

As Russ said, it's a long, slow process for recovery. We were lucky in that my husband could take daily naps going through treatment (thank you chemo, not)!! He is currently one full year NED (no evidence of disease), and you will find after your treatment is over that you will slowly start to do some of the things you love, and yes, even cooking and eating again. My husband has always been a chef quality cook, so I really get what you're saying here. But he was SO happy to kick my butt out of the kitchen as soon as he could after treatment (mac 'n cheese from a box wasn't great).

We are sending healing prayers for the rest of your recovery. Just think in another week you will have made it through your radiation. Feel free to reach out to me with any questions. It does get easier.

Swoosh13

Michael_IN

https://csn.cancer.org/discussion/comment/1719115#Comment_1719115

Hey thanks! I do appreciate the words of encouragement. As you know,I can talk to my family about this stuff, but they don’t fully understand. It’s not their fault, and kinda like with me being Prior military. It does help seeing other stories.

Logan51

What's one Holiday season compared to getting rid of C? I've been FT-dependent the last 5 years and 3 months, thanks to the "local Locos" at the C Center putting me on a Chemo & Rad regiment that was used some 18 years before I went thru tx. Just be thankful you're alive and have hopes of eating again, even though your taste might be mitigated some.

I should have added in my original post that a former coworker experienced more of a total tongue removal. Initial Op at the U of Iowa took 14 hours, a bleeding problem resulted in a 2nd Op of some 5 hours in the middle of the night, and he had a flap installed to help him talk again. This was back in 2008. He had to learn to talk again via therapy, but remained an issue with him. A Maintenance man, he returned to work some 3 years later. Lost track of how he's done since, but last I heard he was welding at the construction site of a new building. Life goes on, Michael, and you just have to roll with the punches. No matter how bad things might seem, and this goes for all of us, there's people in a lot worse condition- major burn victims, paraplegics, etc.