My husband was diagnosed with stage 3 SCC at base of tongue on 7/30 of this year. Being a VA patient, he is receiving his care at the Portland VA, about 4 hours from our home. The advntage of being a VA patient is that his care is paid for 100% and the VA hospital is physically attached to Oregon Health Sciences University where he received his rad therapy. He stayed at a residential unit at the VA during the week and came home on weekends. It was a very stressfull time for both of us. He has PTSD and as you can imagine the depression and anxiety worsened during the diagnosis and treatment. Because the condition of his teeth were not great he had a full mouth extraction 2 weeks before treatment started. He also had a PEG tube put in which he uses religously. He finished 35 radiation treatments and 2 rounds of chemo on 10/31. He had to take a one week break because of severe radiation burns, dehydration and recurring fevers.

Now we have been told that his post treatment CT scan is inconclusive and he will need to have surgery to remove his lymph nodes. Unbelievably, this was told to him over the phone so questions were left unasked or he was told that they would be answered at his preop appointment on 12/10. We are petrified of course. He is assuming (since he got little information from the surgeon) that this a "neck resection" and he will be disfigured. Any thoughts on this?

Meanwhile, I can totally identify with other caregivers. While he was in treatment I continued to work, took care of dogs, horses and cat, and managed a construction project (we added on a new master suite). We had to cancel 2 vacations, one to Ireland and a family trip to Mexico for Thanksgiving, so I am in great need of a vacation. One of the hardest things I had to do was make big and little decisions. Some days it is paralyzing just trying to decide what to eat.

Do things ever get back to normal? Or close to it? We can't go anywhere in public since my husband has trouble with "rubber cement" mucous and continually sounds like a TB patient. Does this EVER go away?

Thanks for listening. I could go on, but I will save it for another time. Thanks again, Cindy

Hi Cindy,
I finished radiation 4 months ago and I can tell you that it DOES get much better but it takes time. I can also tell you that it won't go back to "normal", you will find a new normal that you can live with. I wouldn't believe a couple months ago that I would feel as good as I do today, so tell your husband to hang in there and give himself the time his body needs to heal.

Thanks you so much for the words of encouragement! I bet you could hear my huge sigh of relief clear across the country. We can certainly handle a new normal. We will just consider it an adventure. Thanks again, Cindy

Cindy,

Hello and welcome. We are glad you found us, there are some of (I consider anyway) the world's best caregivers here. Any frustrations or vents you have, the people here will listen and help anyway we can.

As Minniea said there becomes a new normal for all our lives. I, as a patient have found the new normal and am very happy existing in it. As for how long some of the side effects last that you referred to, evreyone is different, but a rule of thumb has been one month of recovery for every week of radiation. Since he had chemo too - it may take a bit longer. The one thing about recovery from radiation is that it is very gradual and you won't notice it in leaps and bounds.

As for the lymph nodes being removed. It probably is a resection, but that doesn't mean major disfigurement. There have been many discussions on this site about this procedure and the results. You might want to do a search. I have had it done and it's something I don't notice the scar anymore and seems as if no one else does either.

Good luck to you both.
Dinah

I really like the phrase "new normal".

With cancer I have been surprised at what I have been able to adjust to. No, things aren't the same as before, but I find I can adjust to the "new normal"

I am not yet 2-months out from neck surgery to remove lymph nodes (just on one side). While I do have scars and some swelling/puffiness, I do not think of it as "disfiguring" and it is not that bad.

I had my chin split open and jaw sawed in half so the most obvious scar runs down from my lip to my chin, and from a temporary tracheotomy. The scars from the lymph nodes runs in what my surgeon described as a Lazy Y, from underneath my ear, under my jaw line and down my neck to one side. The scars under the jaw are somewhat hidden.

The week by week improvement of the scar appearance is substantial. I do admit to wearing turtlenecks and scarves to cover it up when I go out (and am glad that it is fall/winter). I have young school age kids and frequently other kids will stand very close to me and stare - I think there are just curious (I also talk funny because 1/2 my tongue was removed).

Because it is not on my face I don't think of it as disfiguring and it really doesn't bother me that much. I view it as battle scars because I HAVE been through a lot and I'm proud of what I have survived.

I want to be here and to live. The scars and change of appearance are a minor trade off.

The lymph node removal will remove any problem areas or spread of cancer and by lab anaylsis will give your medical team a much better picture.

Waiting is so hard, especially when you don't have specific answers, your mind can go through so many 'what if...'s. Good luck with what's ahead,
michelle

Hi Michelle,
I had a neck disection and had my lower left jaw removed. They replaced it with the small bone from my leg. I had the same kind of "cut" you had and I agree, it's not all that bad. Once my chin finally settled down and stopped looking like Jay Leno, I was amazed at how I looked like myself. Once this lymphedema under my chin resolves, the shape of my face will be exact. I am 7 months out from surgery and the scar on my chin is almost invisible. I now have a wonderful dimpled chin! I have yet to wear a turtle neck (to hot here) and I also have a trach scar that seems to be the worst out of all of them. I work with children and have learned that if they can look at it, touch it, do whatever they need to do, they will get past it much quicker then adults will. I am now at the point where I pass the "Kmart" test (people don't stop in their tracks when they see me in the aisle) and I think of the scars as a reminder of how lucky I am to be here.
Minnie