I know no one has a crystal ball to predict the future. I just need some incite & reality. My husband was diagnosed with Stage IV oral cancer/positive lymph nodes 3 years ago. Surgery and rad/chemo. Then diagnosed with lung mets - both lungs. Radiation. Then again a couple months later, more lung mets and more radiation. What am I looking at for our future here? I suspect this is considered terminal, but what kind of time do we have to cram what we want into? Guesses welcome. I just don't have any idea.

Hi Donna,

One of the key words to ask and listen for from the doctors is treatment being "curative" or "palliative". Generally, once SCC has gone distant, like to the lungs, the term palliative is most common.

There are those who are able to stay vital for years, others have complications pretty quickly. When there are other complications such as emphysema added to side effects of cancer treatment, quality of life issues come into play as well.

At some point, the focus becomes on being as comfortable and pain free as possible.

I'd make a couple appointments, maybe with the RO and the surgeon/ENT and have a very honest and frank discussion about the prognosis given the entire set of conditions and issues facing your husband.

Thanks, Don. I don't feel like the doctors are telling us what they're really thinking. They seem to mirror how he feels - so if he's feeling fairly good, they say it's a good day. Even when I ask for more details, I get a runaround. For instance, when I asked the RO what we do if it comes back, he swore to me it wouldn't - "Why would it? I wouldn't have done all this treatment if it would come back." Now you and I both know it CAN come back, so I just found that comment so flip. If I press, my husband gets mad and accuses me of wanting him in the ground, like I have power over the Cancer. The ONE time I put my foot down, because hubby was making inappropriate decisions for someone with Stage IV cancer, they finally did the biopsy on the original lung lesion, which turned out mets. I fear they will be the type of doctors who put their patient into hospice the day before they die, and I want more prep time than that.

Donna,

Maybe it is time to get another opinion if your husband is open to it. For a doctor to make a claim that cancer will not return seems beyond what is ethical.

You registered here some time ago but not posted much. I would encourage you to become as active as you can and ask away. You will get lots of opinions based on folks who have gone through this firsthand. We are not doctors but we can surely be a baseline of reason due to our collective experiences. Based on the info in your signature, it seems like he is not much out of the average.

Don

Donna, my husband has lung mets, too. The possibility that the lesions were there already but too small to be picked up by CT scans when the cancer was first diagnosed has also been mentioned. I asked both the RO and Mo what the pronogsis was and while my husband did not want to know (still does not want to know), the doctors were able to tell me with his permission. My husband is now in a phase 1 drug trial. We have no idea yet if it is helping but he is due for a review in a week's time. Another person you might be able to talk to is your hubby's GP who should have been receiving reports from the specialists, but I would think that you will also need to get his permission for that.

My sister also just found out she has several tumors in her lungs. We go for further testing this week to try to determine if it's metastasis from her oral cancer, which is what we are expecting. They have already labled her cancer as incurable. But we aren't giving up that easy. We are looking to travel cross country to MD Anderson as soon as possible for a second opinion and praying for a miracle.

Donna, this "chance of survival" business is a statistical construct. All it means is that in a group of some number of members who share a common condition, at the end of 5 years (or some other period), some percentage of that number will still be surviving (unlike the rest of that group.)

Unfortunately, it tells you exactly nothing about your chances as an individual in that group.

In every group of some size, individuals who meet all the group's requirements will fall outside the predicted outcomes (on both the high and low ends) but there's no data to help predict who those individuals will be.

It's frustrating for folks in our situation, but like everything else in life, it is what it is.