Do we really want to ask what the prognosis is?

[peebygeeby]

Hi everybody,

Just thought I'd share this with you. Hank, my guy, was just diagnosed recently. NSCLC with mets on his spine.

At our first visit with the oncologist the doctor showed us the scans, and told us that he wanted to proceed immediately with chemo. We were both kind of stunned during this first visit, and neither of us asked what the prognosis was. I'm fact, during the visit the doctor never actually discussed the stage, but I'm assuming that it is stage 4 because there are mets. Anyway, tomorrow we are going to see the doctor for an office visit. I had a conversation with Hank last night. He asked me, "don't we want to know what the prognosis is?" I replied, that I really don't think it matters whether or not we know that. I mean, we know he has a big problem. I may just be a big coward, but I don't think it will help either of us to hear this doctor say something like, maybe you have a year. I think it is better to just go forward and treat this, and have hope, and be positive that treatment will work, and ward off this beast for a good long time. I'd like to hear your thoughts.

All the best,

Gail

[Kasey]

Well, Gail, all I have to say about that is this.......if the prognosis given may of us here was accurate, we wouldn't be here posting. Doctors can guess ~ that's it. I figure WE can guess too and I like ours better than theirs. Don't see the practicality of asking.

Good luck tomorrow.

Kasey

[recce101]

"peebygeeby" ...I don't think it will help either of us to hear this doctor say something like, maybe you have a year. I think it is better to just go forward and treat this, and have hope, and be positive that treatment will work, and ward off this beast for a good long time.

Gail, I'm with you 100% and as much more as I'm allowed!! Prognosis statistics are a hot-button subject with me, and I'm sure some of our longtime members are thinking oh no, there goes Ned again on his favorite rant. All anyone can tell you is the average/median survival time for a very large group of people who received a similar diagnosis several years ago. If we're talking about stage IV, you can imagine that the spread of data points (individuals) was very wide -- some people were quite fit at the time of diagnosis, others were in a very bad way, and everything in between. Some people were diagnosed rather early (often by accident while they were being checked for something else) and others had put off seeking medical help at all until their symptoms were severe. Some of the latter group probably died within weeks of diagnosis, while others were still alive when the study was closed. The prognosis clock begins at diagnosis; it's not backdated to when diagnosis "might have been made" if the proper tests had been done when they should have been done. So this average/median data is essentially meaningless for any one individual.

I didn't ask for or receive any of this "information" myself, and only now, 18 months out from diagnosis (IIIb with malignant pleural effusion which will be IVa in the new staging system) am I starting to get curious as to what I would have been told. When I'm 24 or 30 months out from diagnosis I might be ready to hear that it would have been something less than 12 months. Aloha,

Ned

[Don M]

I have never asked for a prognosis and none has ever been offered to me.

Don M

[Shelley (MLC)]

I definitely agree with the others. My mom didn't want to ask at all and might have given up if she read the statistics I was reading on the internet. Instead, she is living quite a full life, going on trips, spending time with family and friends. I'm sure that woulkd have been harder for her to do if she knew (and believed) the statistics. So, certainly educate yourself, but know that everyone is different and reacts to this horrible disease in different ways. I wish you both the very best. Stay positive and fight! Shelley

[RandyW]

we had the following outlook and thought process. We found out the stage just so... We never asked or got a prognosis. Deb went to all of her appointments,did what she could to stay healthy and lived the way she wanted to live. SHE LIVED!!! she took classes, traveled with me and Daisy, went to work, Painted and took classes. SHe did what she wanted to do when she felt like it. Sure there was 3 weeks in ICU for c.dificile. Just a setback though sure she had apleural effusion. Missed a week of school. So what. We did not care about prognosis. we tried to stay as upbeat as we could. when we got good news we celebrated and when we got bad news we cried and then marched forward. This was how we dealt with LC. DAy to day basically

[Patti B]

I did not ask but my onc told me on my first visit and believe me, I didn't like it one bit!!! Kind of like being hit in the face with a frying pan!!! But now - WAY past the date I was supposed to be gone by, I would never ask nor would I want them to tell me. I figure I will know when things start to go bad!!

Hugs - Patti

[Barb73]

When Bill was first diagnosed, the oncologist told us that he would be treating Bill's disease as a chronic.

I asked him. "What happens if it "pops up" somewhere else?" He said, "Then we get it where it's at."

I asked if there were any long-time survivors. He said, "They are out there, not in large numbers, but they are out there." He looked at Bill and said, "You may one day die of this."

From that moment on, our attitude has been to give it hell. We are in the business of LIVING with lung cancer.

Since no one knows what each person's response may be to various drugs/regimens, we cannot be apprised of the prognosis.

Without belaboring the point, my mother was a 22-year survivor of colon cancer, Stage IV, mets to liver (diagnosed at age 53/died at age 75).

She received surgery and no other treatment. They removed the main tumor, left in the mets, and we asked the doctor, "What is her prognosis?" He said, "I am not God."

He was right.

Barbara

[Snowflake]

I was never given a prognosis, just a diagnosis. I felt like I'd been hit in the gut with a medicine ball when I was told it was Stage IIIa. I had done a little bit of research at that time, with the thoracic surgeon believing it was Stage I, possibly Stage II at my surgical consult. I knew that I was worse than 0, II was worse than I and as the number went up, the stats went down.

I was doing research on the odds when I found this site, I kept reading about survivorship and saw that there were some with each stage, so I did a search on lung cancer survivors and found the original website. I lurked for a while and then joined in with one of the longest introductory posts ever (surprise)...

I decided to focus on the survivor part, not the disease part. I've had side effects, I've had monsters under the bed, I deal with "hyper-"chondria...and I'm here. I have a baseball bat and a big flashlight for those monsters.

My oncologist, on that first visit when all I could focus on was the stage, discussed treatment plans with my husband while I just sat in a stupor. I did hear everything, digesting it later, when I could breathe. He said the odds were bad, said my young age was in my favor, said there were survivors of this disease and did EVERYTHING to set me up for a second opinion at MD Anderson. My husband asked him what HE would recommend were the patient HIS wife - he said a trial would be the best plan.

Did he EVER give me a prognosis? No. He said the stats are grim, but repeatedly pointed out there were survivors. He kept any doubt to himself, because I never realized he had any until my last appointment when he was so very amazed that I had made it so far along with no recurrence. He never really said he expected me to have one, so I didn't plan to!

I doubt you truly want a prognosis, because that number is ALL you will hear. The monsters under the bed will repeat it every night while you are trying to sleep, they will have the upper hand and beat YOU down. What you really need to know is what form of the disease you are dealing with, what symptoms will point out a metastasis, and how to deal with the feelings of doom that may surface from time to time.

My suggestion is to have a good relationship with your general practitioner - mine treated all the side effects while my oncologist treated the cancer. Your GP can monitor your level of anxiety and/or depression and prescribe a medication to keep the monsters at bay - for a month I took a Xanax and an Ambien every night just to sleep. I have a full bottle of Xanax now, my second refill from the original prescription. I only take one when I feel like an elephant is sitting on my chest - usually around test time.

At this stage, knowing prognosis will be a loss in the mental battle - you don't need to lose on any front in this war. Suffice it to say it's serious, your affairs should be in order (should have been a long time ago) and you should live life to the fullest every day. BUT, we ALL should. No one knows how much time they have, heed your wake up call and get on with the business of living.

Best of luck to you,

Becky

[azgirl]

We told the doctors ahead of time to NOT to let my mom hear any prognosis. My brothers and I knew what the stats said for stage IV lung cancer because we'd researched it on the internet, but we didn't want our mom to hear those numbers. A few doctors had casually mentioned to us that her prognosis was not good, which only angered and upset us. Never did my mom hear anything like that though, and her attitude was always that she was going to beat this. She's no longer treated at the original hospital she was treated at, but I wish those doctors who acted like she was already dead when she was there could see her today!!

[JB]

We were told the stage, never asked for a prognosis, were never given one. None of us are dumb here either, and we've either read enough talk to enough people, or watched close family friends go through it, to have a general idea.

Honestly, I wanted to have a clue, strictly for household financial purposes. I needed to have an idea of what we were looking at, simply so that I could begin to adjust us financially to maintain living, in a house rather than our car, and manage to raise a 3 yo. Part of me is a realist, prepare for the worst, hope for the best. I think I've said that before. Prepare like you're going in to fight Mike Tyson, when little Timmy from down the street shows up, kick the crud out of him and think about all that extra energy you'll have left to celbrate.

The only other reason I could see asking would be so that you know by exactly how many days, months and hours you have kicked cancer's butt.

I still believe it's all personal preference, and it's all just numbers. Each individual is different, and each and every outcome will be different. Fight a strong fight, and let the numbers to the statistical people and the rest of it up to the big guy upstairs.

[jaminkw]

Hi Gail, hope things went o.k. for you and Hank at the doctor's visit today.

And the rest of you respondents, thanks for giving me lots of reasons for not having asked for a prognosis besides the fact that I'm a coward. I read some statement relative to my cancer stage that included the number five twice and figured I didn't want to know.

Gail, hope you didn't ask and they didn't tell. Doesn't do anybody any good cause they're only guessing anyway.

Judy in Key West

[peebygeeby]

Hi guys, you are all such a huge inspiration to me.

Went to see Hank's "oncle Ed!" (my new name for him)

Did not ask prognosis, I just don't see how it can help. The doc said he looks good, made it through his first treatment very unscathed. (Gained five pounds!)

Told him his lungs are sounding better, and hopefully as soon as we get this thing to shrink he'll be breathing better to. Left the office visit feeling good and positive. We're going with the program, and in the meantime we're going to have as much fun as we possibly can. More than that we can't do!

Best wishes to you all,

Gail

[SandraL]

Hi Gail. Very early on a nurse told me to not ask for information that I didn't want to have. So I never asked and have never been told. Nor do I want to be. We are not statistics. Everyone here is a "survivor" and is "living with LC". From quite early on I spoke to friends and colleagues with the news that I was living with LC. I think that kind of attitude also helps people interact better with you. Best wishes

[Andrea]

I asked. A wise thoracic said her chances were 50/50, either she would make it or not :)

Stats are just stats. There was as 5% chance my dad's lung would collapse during his biopsy, it did, who would have thought!

Just focus on the fight

[amieb]

I agree- focus on the fight. My dad constantly wanted a prognosis but never came out and asked the onco so he was never given one. We researched everything from one year to one month. I figured the best thing to do was keep the nose to the grindstone and keep moving forward.

There is always a good and always a bad side to news. I figure, not hearing the bad news is okay once in a while. Gives us something to work towards.

I am sending positive thoughts to you and your Hank. Good luck in your battle. Go kick it's butt!

[alexan]

you see I am the crazy one, and always ask....what do you thin?????, is ther are some Years. Fortunally they all knowme so they ignore me.We will be here until is our time. But don't ask. Don't make any sence plus they are not God.

best of lucky & be positive

hugs bucky

[Lee and Chi]

My Mom didn't want to ask, so she didn't. I'm in health care so I knew, but nobody asked me what I knew and I never said a word.

Everybody is different and no doctor is going to have that kind of answer. I have known patients that were sent home to die, only to walk back on the floor healthy as ever a year later.

Unfortunately, as Mom was watching the news one night, they ran a story on lung cancer which spurted out stats left and right. I wasn't there, but Mom was all doom and gloom when I heard about it! Moral of the story: Keep the channel changer near by!

[elkiesmom]

We asked for the stage and the

prognosis when we first found out. The first sureon said we don't think we can do the surgery and to get his affairs in order. On our way home I told gary we need to see an ONC and go from there. He quided us to Moffitt and surgey was a go no problem. I kept on asking what stage he was and they said they didn't now. After the surgery they told us they staged his 10 cm tumor and he was a 1b. So sometimes they just don't know the prognosis as the first surgeon clearly didn't and sometime the stage is unknown until after the surgery. My cousins husband had colon cancer 4 years ago he went to Sloan and no chemo btw. A year ago he developed a cough and the cancer spread to the lung and spine. He does not want to know the prognosis. Thank God he is in remission now.

[SandraL]

Hi Gail. I support others thoughts here. On my first visit a nurse told me not to ask for what I didn't want to hear. And I haven't. And I told my doctors that I don't want to hear it just in case they might be inclined to blurt something out. I think doctors should ask if patients would like to know. Some might want to know and others like many of us here, simply do not, because we are not statistics, we are survivors. Take care

Sandra