Hey, everyone. I'm so glad I found this message board. Please allow me to fill you in on my husband's cancer diagnosis. He is 48 and was diagnosed with a Stage 1 carcinoma of the retromolar region just over a year ago. He had been a long-time pipe smoker and had quit only 6 weeks before when a sore in the mouth that wouldn't heal sent him to the doctor. The lesion was surgically removed and he had 33 radiation treatments to the right neck/jaw area. He suffered mouth sores and thrush post-radiation, and we visited the doctor many times trying to get relief. We kept getting "wait and see; it's probably just more radiation side-effects" from the ENT surgeon, and long story short, five doctors later a CT was done after a lump to the right neck appeared. We took the CT to the original surgeon, and he did not even tell my husband he has cancer again...just referred us to University of Virginia Med Center (4 hours from where we live), where they wasted no time telling my husband the news is very serious. They did a biopsy to confirm. So, less than 12 months after the first diagnosis and we are hearing he has cancer of hard palate, right tonsil, and some lymph nodes in right neck.

In order to see if the cancer would respond to chemo (radiation is out since it was done before), the docs at UVa put my husband on aggressive chemo but the chemo was very hard on him --blood counts crashed quickly and he got very weak after each of the first two rounds [three weeks apart] of Cisplatin, Taxeterre, and 5-FU. So now he is on a new chemo drug called Methotrexate. The oncologist doesn't seem as confident as before and said he will confer with the otolaryngologist about scheduling surgery sooner rather than later, probably by the end of January. We know he will have to have removal of many upper teeth, hard palate, tonsil, and have a right neck dissection. He will have a prosthesis for his palate. Following surgery, more Methotrexate will be administered. My husband already has a PEG tube in place since he has been on a liquid diet for over two months due to the biopsy puncturing his hard palate (whatever he eats or drinks comes out his nose!). He doesn't sound like himself, and it's also physically exhausting to talk. He has had to take an extended leave from work (literature professor). Although he has a very positive attitude, he often feels frustrated due to the limitations this cancer has put on him. Even still, he does not whine, has never done the "why me" thing, and feels so confident that if he just has "a chance" he can get through this. We have not asked doctors about statistics or stages; we feel that will limit our view and we don't want or need that at this point.

I guess I'm posting here because I don't feel like I'm coping with all of this as well as I should be. How do I stay sane and positive through all this? We have been married only 1 1/2 years, and he is absolutely the light of my life and of my two teenage daughters' lives as well. I want to be as strong and supportive as I can be...not depressed and worried all the time!

Hi Christine, Welcome and feel free to let it all out here if necessary.

I wan't to address the statistics first. If you look at many of the archived posts here the issue of stat's are put on the shelf. You already must know this is a serious thing. It does kill people. My suggestion is that you let all your doctors know you are not interested in hearing them. Tell them to go about their business as though he is a survivor.

On the other hand people survive as well. Focus on doing everything you can do to beat this. It often will not be pleasant. The journey does have many very surprisingly positive aspects which will be uncovered over time.

As for staying sane, all you need to do is be there sane or not.

take care

I wanted to give you the name of a doctor to see in your area that might be a valuable resource if surgery is the route that this ends up going in. (And if that is the case I would not want to wait another month). However you have your email functions turned off in your profile. Please either contact me or turn them back on and I will forward the contact information to you if you are interested. In genereal we don't like to post doctor's private information on the message boarads.

Hello Christine,

I am a patient not a caregiver so my advise on staying sane probably wouldn't be the best for you. But I wanted to welcome you to this board and say I'm sorry you need to be here. There are many people here that will try and help in any way possible.

I'm sure there are some of our caregivers that will see your post and respond soon. We have some of the greatest caregivers on this board. In my mind your job is tougher than the patient's job.

I wish you and your husband well, and please post and keep us updtaed.

Take care,
Dinah

Thanks everyone. I appreciate the welcome. I feel like all of this has happened so fast with my husband's recurrence. I go from feeling devastated to having hope and faith that we can beat this on a random but regular basis! I've done a lot of research but that almost always makes me feel powerless unless I stumble across survival stories, which of course gives me a dose of well-needed strength and confidence. Our friends have been supportive for the most part, but they have also been asking the statistic questions as if we are being negligent by NOT asking our doctors. They cannot understand why we have not demanded to know! Sometimes I can see the statistics in the doctor's face--both positive and negative. Besides, there are too many variables to be considered, and asking about statistics would be pointless. My husband and I want to live each day like we have many, many days and years ahead of us rather than like we have a limited number. In my mind, living each day like it's the last would be depressing and I'd cry all the time. Don't get me wrong, though; we have planned for the future as best we can and we are not delusional as far as reality goes. We did not take life for granted before cancer even though we do appreciate it even more now.

The balancing act between being strong and being devastated is very tiring, though. I appreciate all the strength and encouragement of all these postings. Thank you.

Hi Christine,
I'm so sorry to hear about your struggles. I am also in Virginia, what part are you located in? The doctors that treated me with surgery and radiation were incredible, within one team of medical professionals I had every kind of doctor I needed............oncologist, radiation oncologist, otolaryncologist, plastic surgeon, internist (for stomach tube), speech therapist, physical therapist, they even have a dentist whose specialty is radiation patients. They are located at the Eastern Virginia Medical School out of Norfolk General. Are you anywhere near us? Take care,
Minnie

Hi, Minnie,

We are actually in Wytheville, which is in southwest Virginia.

We are happier with our doctors at UVa than we were with the local ones, and especially happier than we were with the first ENT surgeon who is located in Roanoke, Va (90 minutes from us). Sometimes it feels like a crap shoot finding a good doctor...we were very let down when the first ENT kept putting us off and we knew in our gut something was wrong, yet he seemed genuine..just not willing to do tests so soon after the first treatment. We wasted at least 3-4 months on that guy. The folks at UVa are much more involved and not interested in dinging around.

I'm interested in more of your experiences, but I'll need to read more on the message postings so I don't ask you to repeat what you've shared already. More later.

Christine

Hi Christine, from one caregiver to another, we have lots of similarities. My husband had cancer of the uvula 2.5 years ago. Had the soft palate removed (liquids refluxing & nasal voice - see pics of his prosthesis on our website in sig file). He had a radical neck dissection and radiation. All checkups were going fine until they noticed one lymph node on the non-surgical side had grown. Biopsy showed two nodes positive for SCC and so he is currently undergoing IMRT (more radiation but targeted) as well as chemo. They told us "incurable, inoperable".

How do I stay positive? I'm not sure. I think it's because I know I have to, especially for his sake. Being positive keeps us both going. I also have a HUGE online support system.

If I can recommend one book it's: Love is a Journey: Couples Facing Cancer, and it is available through Amazon

Feel free to email anytime!

Donna