This post was moved from the end of a non related thread to this new location by OCF

Hi, My husband is about 4 months out from the end of his treatments. He's doing fantastic -- eats well, is gaining weight, etc. He sees his doctors on a 3 month or so basis. Unfortunately, his last visit threw him into a depression. His doc., (we now call him "Mr. Ray of Sunshine") went on and on about how that even though there is no sign of cancer now, there is always the likelihood of it reoccuring somewhere else. Although we were aware of this, hearing it from his doctor really hit him hard.
My question is, how will we know it's back? Will he have any overt symptoms? (His doc. said something about getting sinus headaches?) We don't assume there will be any obvious symptoms because we only found his current cancer after it had metasized to his lymph nodes. He had Stage III back of tongue cancer with the usual neck disection/rad/chemo treatments.
Also, what specific tests should the doctors be performing and how frequently to test for head and neck cancers? What is the liklihood that it would occur elsewhere in the body like the lungs or liver?
I guess the toughest question is how to cope with this incredible cloud hanging over you for 5+ years. We were feeling really great about ourselves because we thought we had survived, but then reality smacks you right in the face. I've read some of the survivor stories and they're great, but it is always different when it's you. Any help would be appreciated. Thanks.
BC

Dear BC,

I'm just starting my journey and hope to be where you are by next September. My Primary Cancer Dr said the same thing about it possibly coming back. He even gave me the 50/50 talk. The way I look at it(and again I'm speaking form the front side of treatment) every day without Cancer will be a great day. One nevers knows how many days we are given to live each of our lives. For me it has brought my own mortality right up front and big time. I think it is important to get busy with living life to the fullest. It's not so much how much time we get but what we do with it. (I wonder if I'll feel this way when I'm at your position?)

I'd be interested in hearing more about your journey. Did your husband have the PEG tube? How did you manage nutrition, weight loss? I have some major decisions to make in the next couple of weeks and the more background I can get the better.

All the best to you and thank you for sharing your journey.

David C

BC,

I understand very well how your husband feels having just completing treatments just 4 months ago. I also know, all to well, what that visit to your doctor every three months will do to your spirits. To this day, over two years later, I still get myself into a pickle before and after every appointment. This now occurs every four months.

You husband should have a heart to heart talk with his surgeon and if necessary find a health proffesional that will prescribe something for depression. I waited over a year and a half before I sought help, I really regret it. I am currently on anti-depressants and going for counseling once a week. I have also starting living one day at a time to it's best and it's fullest.

I think I speak for most people that participate in this forum, when I say "we all have our good days as well as our bad days."

Please keep posting on this forum for questions, venting and also expressing good things. We have all done it.

Take care. Anne.

"There are lies,
Damned Lies,
And then there are statistics!"

Benjamin Disraeli

Danny G.

HI,
After I posted back in Dec., the holidays rushed upon me and also I guess the posting was moved so I couldn't find it at first.
Anyway, to David C. regarding PEG tubes...my husband didn't have it and I must admit he had a pretty difficult time of it. He lost about 35 pounds and landed in intensive care for 4 days after the end of his treatments. (The radiation closed up his airways and also had a little pnemonia. He was also intubated.) I know there have been lengthy discussions about PEG tubes and I think it has to come down to your own personal decision. The biggest question is how many treatments of radiation will you have? My husband had 33 (after radical neck disection) and he was able to pull through without a tube. My feeling is that if you have any more than that, I'd seriously consider a PEG tube. Because the effects are cummulative, the worst of the radiation comes at the end and even after it stops, so you can fooled into thinking you'll be OK, then it gets really bad. On the other hand, from reading many of the posts, I get the feeling that with the PEG tube, it takes longer to get back to eating normal or even soft foods. For better or worse, without a tube you are forced to eat or drink through your mouth and that may allow you to recover a little easier. (Just my opinion.) I think also, your overal health, family support and attitude are extremely important. But bottom line, I think the biggest determanent is the number of treatments.
On your other questions about getting through it all, my husband was unbelievably strong. He would never give up. I remember after the treatments when it was so difficult to eat, it would take him an hour to eat one scrambled egg. But he would do it. Many nights he would not go to bed until he ate 1800 calories and was thrilled when he finally was able to break 2000. He kept a calorie counter book and added up what he ate. It may have been a little obsessive, but I think it was good psychologically to be able to set a goal and reach it. He's doing really well now, and even back to running 3-5 miles. Good luck and remember to never give up. You CAN fight this and survive!

Hi David C, I had 48 rounds of radiation plus 4 rounds of cisplatin but I managed without a PEG tube throughout and after treatment. I totally agree with BC that your eating tends to become normal more quickly than if you have tube feeding. I lost 15 pounds when there was a week I could not take any food. I even needed a blood transfusion due to weak health and low count of white blood cells.Drinking water could pose a great problem too. I made every effort to force myself to eat despite the enormous pain from mouth ulcers and sore throat. After a week, I started with milk, icecream, congee, cereal... A month later I started to eat more solid food like minced meat and fish, vegetables, etc. I gained back all the lost weight one year after completing the treatment and can eat most kinds of the food now. Be patient, it is a tough and long battle.
Karen

I do not think there is any correlation between PEG tubes and the rate at which people can begin eating normally again. Even those patients who have them, still have to do some swallowing, they drink water for instance, and many like me are able to tolerate "smoothies" to augment what goes down the tube. So using a PEG does not mean

Brian,
I totally agree that keeping up with nutrition and liquids can make a difference. I'm not sure why my husband didn't get the PEG tube. Maybe it was psychological in that he thought he could stay in control of his body or maybe it was ignorance of how bad things could get. (I think it was more ignorance. Starting out we didn't know what hit us.) In my previous post, I was just trying to illustrate our own experience. But I'll admit, knowing what we know now, I'm sure he would have opted for a PEG tube. I'm positive it would have made a difference in his weight loss.
BC

The reason I did not have PEG was that I was also under concurrent Chemo. I do not think my low WBC could fight any infection if there is any from the PEG. Once I told my decision to my Dr. He agreed with me. He also mentioned one of his patient got infection even before the RAD started and landed in ICU 5 days. So, I am glad with my choice. Besides, I only have 33 RAD and I feel I can pull it through without PEG

PEG tubes can develop minor infections around them. This is essentially an issue of keeping the tube itself ultra clean and the entrance site through the abdomen clean as well. I developed a small infection with mine about the second month that I had it. I have to admit, at that stage of things I couldn't have cared less about many things including whether or not my PEG was clean. Some Bacitracin ointment for a few days on the area and it cleared right up. I do not think that fear of infection is a reason to not have a PEG. The benefits far out weigh the down side risks.