My husband had surgery on March 18, 2008.He had 2/3 of his tongue removed.Base of tongue okay.tongue reconstructed by plastic surgeon. Total neck disection with 90 lymph nodes removed--5 were positive. 3 chemo treatments and 38 radiation were finished on July 7. He cannot even swallow a drop of water. He started swallowing therapy now that radiation is over. We live in a small town but Pittsburgh is where he had his surgery. We were told to make an appointment with a swallowing pathologist that deals only with oral cancer patients instead of going to just a regular speech therapist. Here are my concerns: My husband is now extremely depressed thinking that he will never ever be able to eat or drink again. His mouth is dry, no saliva. I need help from anyone who has been through this ordeal. He's been a real trooper since surgery, but now I see him getting very despondent. Please help me help him. Thank you so much.
Don't let him worry about it. Like everything, it takes time but the more determined he is that he will swallow the sooner he will. I know some of us force the swallowing and it gets uncomfortable, but it's what has to be done. I have been to your town a few times. It's a nice area like most of the Pittsburgh area is. I'm an old UPMC patient and a Shadyside patient too. Tell your hubby if I can, he can.
Claudia,
I just finished very similar treatment to your husband's. My mouth and throat are all torn up, my neck is stiff and sore and I feel a little like I was hit by a freight train. Healing from this ordeal is going to take some time! The program where I'm being treated, Dana-Farber in Boston, has an excellent speech/swallow therapist who specializes in Head and Neck cancer patients, so I would absolutely agree with finding one for your husband. I suspect it will make a huge difference.
I think if you go through the forum posts here, you'll see that almost everyone here has been pushed to the edge during treatment and almost all of them have returned to eating almost normally. Not everyone, but a pretty large percentage. It is going to take time, and a certain amount of discipline, but he and I (!) will get there!
It's pretty important to maintain the ability to swallow (or we 'forget' how to do it), so it's really good that he will be seeing a speech pathologist -- It takes a lot of time to adjust to our new boundaries, and suffering from that goldurned radiation is not a picnic -- I certainly wouldn't want to go through that again!
The PEG is really not much of a problem once one gets used to it (except cleaning up the 'food' spills.
Your job is to give him a lot of moral support and human contact, and see that he can get enough rest when he needs it -- It's an unseen enemy that he is fighting right now, so expect that he may occasionally let some of that wrongly spill over on you.
Keep coming back here and asking questions; pretty soon you will be answering the questions of others.
I have not had radiation, so I wonder why I am even presuming to add a comment, but I do have a dryness problem for other reasons following my surgery. I use a small laundry/plant mister bottle with water in it. I spray my throat, and it is wonderful. You get the sensation of having a drink, without actually having to swallow, and without having to deal with taking a liquid in at the front of the mouth and having to move it to the back. This has been a very valuable tool for me. Just open your mouth, and spray back in your throat....cool mist....swallow or not.
I also use a smaller spray bottle for Biotene mouthwash, which I spray several times a night to moisten my mouth and teeth. It lasts longer than water for this purpose. Often, I will get my mister-drink, and then follow that with a few sprays of Biotene in the middle of the night.
Would this work as a starter?
It took me 16 months after my treatment for me to really enjoy eating again so tell him he must be patient. He also must follow all his doctors post Tx recommendations. In my opinion the recovery is just as tough on us as the treatment.
He has to be very very patient,
I am more than a year out and tolerance and taste still improve.
M
after a pet scan, jim was diagnosed with multiple bilateral hypermetabolic pulmonary metastasis. the dr said there is nothing they can do and only gave him a year or less. we are devasted. the dr. just blurted out the results causing me to faint. i know the doctors have to tell the truth, but not in the heartless manner that she did. I'm going to get a second opinion. We are so sad and scared and all i do is cry. thanks for listening
I am at a loss of words and hope that the PET results have a different explanation.
M
Claudia:
Im sorry you have gotten such bad news. Its not very nice of the doctor to be so heartless with news like that. Im hoping you get another opinion and even a 3rd that are better than the first one. Hang in there til you see another doctor, dont give up. If your husband is feeling low right now, maybe he needs some prescription meds to help with anxiety. Many people here have used that to help take the edge off. Recovery seems to take forever and can be very discouraging. But, dont give up even if there is little or no progress. Healing takes a very long time to get back to close to normal. I will keep you both in my prayers.
PET scans are notorious for false positives, (especially soon after treatments end) and I am a person that has had it happen several times. I had a very hot node in my lung that the docs were sure was a met of the cancer. It turned out that the area was a very significant infection. I had/have significant aspiration issues from my treatments and chronically develop pneumonia in my lungs from this as fluids end up in them. What I had is referred to as silent aspiration, as the patient does not even realize that a portion of what they are swallowing ends up where it shouldn't, and there is no sensation that tells you it is happening. It only happens with liquids not solids. Never the less, I had nodes next to that area that they were equally confident were a spread of the cancer from the lung... not true. Just nodes doing what they were designed to do -eliminate the by products of the infection.
Please get a second reading/opinion. While mets to the lungs are not uncommon, their might be alternate explanations. My second opinion did a CT guided biopsy of the area in question to reveal the actual situation.
Lastly, especially now with this new issue since your original posting, mental state is an important issue, I and many here have been on anti depressants during our recovery. They take a while to kick in, as much as a month, but they may put him in a better frame of mind while all this is sorted through. These combined with good personal counseling may be helpful now.
The doctor that told me I had Stage IV cancer (an ENT) was also brutal and told me I had a 60% 5 yr survival rate after a list of horrifying surgery and treatments causing me to faint. I ended up getting 5 opinions and I'm glad I did. I hope you can find a qualified oncologist that disagrees with her and can further treat your husband.
Personally, I prefer the 'brutal' approach to soft-soap, because it gets you right through the Denial stage of grief, but I can also appreciate that the shock is more severe for some than for others.
When I went to get the results of my biopsy after 2 1/2 years of clean scans and biopsies, my friend came along -- The ENT announced that new cancer was inside my tongue and that I would have to have the free flap done -- I started asking questions about it, and we started arrangements for the MRI/CAT/PET scans for the surgeon.
Afterwards, my friend said he didn't know how I could just take that kind of news and start right in making arrangements -- That HE almost broke down and cried -- I told him I was glad he didn't because it would have embarrassed all of us <grinz>. Truth was, I had been subconsciously prepared for the bad news, esp the way my tongue was continually swelling, so the announcement really just confirmed my expectation.
my thoughts and prayers are with you - i cannot even imagine that moment for you and your husband. i would do as brian suggested though and get another opinion / reading. please keep us posted and we will continue thinking of you.
Claudia- My husband is in a similar situation. I sent you a pm.
Sue