I'm having a really bad day today. My husband, at almost 6 months post treatment, has been starting to sound hoarse to me in the last few days and today is starting to complain of a sore throat. He has his monthly check next week, so we'll see what's up. But I'm just feeling very depressed about what life post-treatment is like. I had a horrible sinking feeling when he told me this morning that his throat was sore. Who knows what it means, but I just realize that this is how the next few years (or more) will be...anxiety at every cough, at every ache or pain - has it come back? Any "coping tools" would help. In some ways, treatment was almost easier for me because there was a definite end in sight. This just seems so open ended and such a big unknown.

Thanks for any words of encouragement or insights,
Anita

Anita,
My husband finished his treatment in April. I know how you feel about every ache and pain being a recurrance scare in your mind. I suppose one day at a time is easier said than done. I try to go with his flow and not react unless he's really concerned and then I suggest he go ask his Dr and see where that goes. So far so good with that way. It's similar to waiting for some new terrorist attack it might happen but it also may not . Living in fear is very distructive for both of you . Try to enjoy something everyday and keep a part of the day for something just for you and away from illness. If anything does happen you'll need to have your spirits up. Take Care. Hope this helps
Diane

Hello Anita, I had the same kind of week. My husband had a PET Scan a couple of weeks ago. The Radialogist was "concerned" with two areas in his throat and suggested biopsies. We had an appointment with our surgeon a couple of days later and we knew the radialogist had called him with his concerns. Our surgeon did a biopsy on his graft which did appear to be inflamed. He let it be known right away that he felt everything was okay but he did it to appease everybody. We receive word today that the tests were benigned. I suffered all week to hear the good news. My husband is just less than 4 month out of radiation and had his major surgery February 10. He can only drink his meals and sometimes some creamed soups, cream of wheat and very soft and soupy foods. I know it is a waiting game but we needed a break until we can muster up some more strength in this never ending battle. Hang in there, it is the hardest thing I have ever done but he (my husband) is worth it. Good luck to you.
Becky

Guys, i`ve learned after the past two years, it`s just one day at a time, much easier said than done....I am at the point, where I don`t even tell anyone how frank is, until he gets up in the morning, and I see how he`s doing. He`s been sick with a massive infection and next week we go to Dana Farber to see how much the new tumor in his sinus has grown and what can be done about it......As far as I`m concerned, the fear never leaves, because I never know what`s around the corner. But, I also think it`s normal for us caregivers to feel that way. Part of the word is care, and that`s what we do. So, we watch and worry...................Hope we all have reasonably stress free weekend..........Dee

Hi Anita,
My throat steadily improved post radiation and then at about 5+ months, I got hoarse and a sore throat, even some mild swallowing problems. It was like a regression backwards in time. It caused me a lot of consternation as well. Then I had an MRI that wasn't the greatest. It turns out that everything is fine and it might have just been a mild cold. I am also noticing things about my mouth that have probably been there for years but I am highly over sensitized to them now. It IS a constant battle to keep it all in perspective. The problems passed and on September 19th, I'll have 6 months. I'm feeling better everyday and my wife and I are starting to really enjoy each others company again and we are going out and doing things together, savoring each moment. You will have some bad days to be sure, I do, but thank God we get a new day each day and we can start fresh. Life really is a big unknown. We have no control over the future, so we just have each moment. There is life after treatment and it will be more precious than ever before. My main coping tool is prayer and surrender (which means to go over to the winning side). The serenity prayer in AA also helps me a lot "God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference." Sometimes I just have to say it over and over and eventually I will be lifted out of the funk.

About radiologists findings and scans; My head and neck surgeon told me that their findings can vary a lot and if you are not in precisely the same position for subsequent scans, they can be misread because they always compare to the previous study. They can use scary terms like "thickening of the tongue", etc., which in reality may mean absolutely nothing. The gold standard is still the results of the visual exam by the Head & Neck surgeon. He's the one who pulls all the pieces together.

Thanks, everone, for your feedback. I know that there are may people on this forum going through this same post-treatment anxiety.

My husband actually got up this morning saying his throat felt better. I'm calmed down, partly due to the support from all of you.

Anita

Hi Anita, I had pieces of bone coming out of
my gums...had to be the cancer spread to my jaw...
it hadn't.
I had horrible headaches and couldn't move my
jaw very well...the cancer must have spread to my brain...it hadn't.
If I don't constantly sip water, my throat will
get dry and sore. Sometimes I will lose my voice.
If I still don't drink, my throat and mouth will
get cracked and start to bleed. No cancer, just
a side effect from radiation.
I made up my mind to not dwell on reoccurance
(I still get my monthly checkups though).
I look for ways to adapt to the side effects,
and just enjoy life. O-O

Hi Anita,

Something Powerlifter said is really important. If we start to regain some of our saliva we may not drink as much water. When that happens I get a very sore throat. Also, since winter is coming the hunidifier will help a lot, but walking out doors will tend to dry him out and cause sore throats. Water will help when he can get to it.

Takr care,
Dinah

Hello Anita, life post treatment can be scary or substantial, depending on one's attitude. Any bit of discomfort can remind you of recurrence. Anxiety level ascends when the appointment is drawing near and descends when the doctor tells you that everything is fine. I learn to put all my effort in strengthening my body by eating healthy food, having enough rest and doing exercise every day. I think I have never had such a 'full' life before. My life style has changed a great deal. Before I was diagnosed with cancer, I was a workaholic putting immense stress on myself to climb up my career ladder. I ate a lot of meat and junk food without doing any exercise. Two years post diagnosis, other than the extreme dryness in my mouth and the hoarse voice, I have nothing to complain about. Sometimes I even forget that I am a cancer patient. Anita, I don't know much about your husband's hoarseness and sore throat but they are very common side effects of oral cancer patients post treatment. Both Dinah and Powerlifter have described the situation well.
By the way, Dinah, I tend to email you personally about your treatment progress but have not been able to locate your address. Maybe others also wish to know how well you have been doing to combat your liver mets.
Judging from your active participation on this forum, I feel you must be doing great, right?
Take care everybody, life can definitely be better and better after treatment.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi Karen,

Thanks for asking...I sent you an email.

Dinah

Dinah,
Send me one too. I also could not locate your email address.

It seems like a lot of folks here have been given PET scans. I know that we have discussed this here before, but I have never been offered one and my doctors don't seem interested in doing one. Of course the story above depicts what I have been told is the downside of PET scans...that they give false positives that lead to other intrusive tests, which often show no cancer. Oh well.

Danny G.

Anita.....What Powerlifter said was right on the money.....the first year out from treatment I spent a LOT of time at the Doctors office. I watched my mouth so closely that half the time I imagined something HAD to be wrong. Then, like Powerlifter, my bone started protruding from my gums.....I thought cancer for sure; my bones in my jaw were dying because of cancer. The worst possible thing and it was happening to me. Then during a normal CT scan there was a "spot" on my lung. Oh boy, I thought I was a gonner for sure this time. The cancer has surely spread. Headache? Brain tumor, of course. What else could it be? Slowly I began to realize that so many things besides cancer can go wrong with our bodies that until you hear you have a recurrence or the word CANCER don't even think about it. A 'spot' on the lung for instance can be so many different things; my spot was walking pneumonia. The headache was.....well, just a headache. As time passes this will get much easier for you, really it will. Right now you're still feeling scared and vunerable -- this too shall pass. Like Gary says: One day at a time. And really, that is the best we can all hope for....one day at a time. You'll have plenty of time to worry AFTER a cancer diagnoses, no sense starting one second before. Plus, there is a very very good chance you'll never have to worry again. Sincerely, Donna

Danny, about Pet scans, Packer was never offered one in the past 5 years til we went to Dana Farber, they did Pet, Cat, and MRI, from what I understand is that Pet will pick up cancer cells sooner that Cat and MRI....Packer had a clear Cat Scan in March, and the end of July he another, which picked up a 16 mm tumor,I wonder if a Pet scan in March would have picked it up sooner.....it hasn`t grown much since July, so something tells me it was there in March and the Cat didn`t pick it up.............Dana Farber does all 3 tests, to compare results..........Dee