My husband Steve was diagnosed with tongue cancer in 2005. The radiaton oncologist told us.."I don't expect to see you back" meaning the surgery should have been the end of it for him. He has recurred 3 times now and we just discovered there are no further treatment options for him. He has had radiation twice and chemo with the last radiation back in March 08. Now the cancer is widespread in his oral cavity.
My fear is what will finally take his life...no one can give us any answers about this. He is in pain all the time and we are now considering hospice. What can someone tell us about this?
Thanks

Hi Nancy,

Sunday tends to be a little slow for answers but I will try to guide you to places where you might find answers to some of your questions.

A number of posters will ask you where Steve is being seen/treated as we are big advocates of Comprehensive Cancer Centers...a list which is available here on the Oral Cancer Foundation Main website. You will help us all if you will give us a timeline in your signature (go to My Stuff/Profile/Signature and just type in the major points...see the signature at the bottom of my post)

If in fact Steve's situation is too far along for most types of treatment there are a number of blogs that you can read that will give you insight into the final weeks of OC patients. Remember, though, that everyone's cancer and situation is different. You can read these on the Forum topic "OCF Cancer Blogs." Posters such as Cookie (Walking towards the light), JAM (A caretakers journal), suemarie, and wallyswife, will give you a snapshot of their experiences.

You have found a great site for support and information. Keep posting and we will all help you through this.

Take time to read not only the forums but the main site pages as well....tons of information that might be helpful.

Hugs,
Deb

Hi Nancy,
I tried to respond to you via PM but that didn't work, so I will reply here. First, I am so sorry you are facing this horrible outcome. My husband died just over a month ago, and it does not get any easier (at least not yet). There are many different ways that people die from oral cancer, not all of them are gruesome. My husband passed away in his sleep five weeks into palliative chemo. It was a surprise that he left us quite that fast, but when I think of how he could have gone, I am very thankful that he went the way he did. I have a blog also, if you click on my name and select homepage you can read it.I don't know if it will help you any or not, but I know that reading Cookie's blog was very helpful to me at the time. Again, there are many here who know what you are going through and we are here for you. Feel free to PM me if you would like to. One thing I must ask is, why is Steve in so much pain? He should have access to whatever pain meds he needs to be comfortable. At the end my husband was on a Fentanyl patch along with Percocets for breakthrough pain. PLEASE get him adequate pain relief. If Steve is like most men, he will not tell the Drs. how much pain he is really in, so you need to be his advocate. I wish you well, Nancy. You have a hard road ahead, but you can get through it and we are all here to help.
Lori

Well Nancy,, the best thing is not to think about death and take your hubby and go to A CCC and see some that understand and know how to be very agressive treating this. I was treated agressively and evne put in a coma for a few days so they could put rad seed implants in my tongue,, Make all of the calls you have to , but get to a CCC and very soon so they can help in this situation. You are in my prayers.

Hello Nancy
I am so sorry you are facing this difficult journey. I think it is a good thing for you to connect with hospice as they should be able to provide good symptom control and support for both of you in the days ahead. This is their area of expertise. Your husband should not have to endure pain, get after his doctors to order some stronger pain medication until you get hospice set up. As you have read above not all OC deaths are horrific and good symptom management goes a long way in making a difficult situation bearable. My husband had a peaceful death 3 weeks after being told his cancer had recurred with the help of our family physician, visiting nurses, pharmacy and my family. We were able to care for him at home. You will need good support from family and friends to help ease the load and give you a break. Of course use this forum as often as you need it to vent and seek emotional support, it is an invaluable resource. PM me any time if you wish.

Nancy- I echo the advice about hospice. I know with ours, my husband's doctor had to sign off on him-stating that he was no longer being treated for the cancer. At that point he was admitted to their inpatient facility because he was too weak to walk and being a tall man, it was difficult for me to help him. They can give you advice about what you can expect depending on how far the cancer has spread and to where. Neil was there for 6 weeks before he passed and they made a horrible experience easier for us. Best wishes and remember to take time for yourself.

Sue

Hi Nancy, welcome to OCF.

The other posters have given such wonderful advice and support that I really have nothing to add other then a warm welcome and to use these forums and this site for all of its information.

My heart goes out to you.

Be Well

Eric