TNM staging not accurate?

[gqmom]

Hello friends,
I've been doing some reading on the TNM staging system and I see there are some opinions that the biology of the breast cancer is what is really important. So, does that mean that because I'm ER/PR-, Her2 + and had a grade 3 tumor that my prognosis is not good? My oncologist has told me that my risk of recurrence is about ten percent after surgery and treatment. I even asked him if he was talking about my five year survival rate and he said no, that it was my lifetime risk of recurrence. I know everyone is different....and one can never know. Just wondering about the TNM system and its accuracy. Thank you!

[Mtngrl]

Hello, GQmom,

I don't know the answer, but I'm curious to know why you are asking. As you can see from my signature, I was Stage IV at diagnosis, so admittedly it's a more stark situation for me. No one has given me a percentage or a prognosis, but I've done enough reading on my own to know my odds of living a normal life span are not high. It definitely made me assess my life choices and do some pretty deep existential reflection, but I ended up deciding I have a good life, I love what I'm doing, I'm more or less right with all the relationships I'm able to affect, and I'm trying to be right with God. In short, knowing what my odds are would really make no difference in my day-to-day choices, or even my longer-term goals. I figure there's no point in worrying about something over which I have no control.

I'm not trying to be a smartass. I think everyone should spend some time examining their life, and everyone should try to live with as few regrets as possible. If there's anything good about cancer (and I'm really not prepared to claim that there is) it's that can be a wakeup call. Every single one of us has a limited amount of time on this plane of existence. It's not a dress rehearsal; it's all we've got. Personally, I don't see how a doctor's opinion about my prognosis would make me choose differently or think differently. (Now if someone could tell me with absolute certainty how much time I have left, that might be different. But no one knows that.)

So why do you want to know? What difference does it make to you? I hope you take the question at face value, and I hope you don't think I'm being rude. I honestly think it's an interesting topic in itself.

[emily]

Hi gqmom,

I don't post often but just wanted to reply to your post. The TNM staging system tells you about the size of your tumor (T), the number of nodes positive (N) and whether there are distant mets (M). It's not really telling you anything about the biology or histology of your tumor. The grade which is based on various scales, but usually the Bloom-Richardson scale will tell you this. When doctors tell you about the likelihood of recurrence they are usually basing this on statistics that apply to large groups of women with similar stats to you. Because Herceptin is a relatively 'new' treatment it may not be factored into some of these recurrence stats that are around e.g cancermath.
It's perfectly reasonable that you would ask these questions of your doctor. Many of us have done so, probably the majority. Each one of us live with our own set of questions about our individual circumstances. There's no absolute answer of course but the more information we gather the stronger we become. Best wishes to you.
Emily

[Debbie L.]

Wow, this got me to thinking. Thanks to both of you.

First, to answer gq's question about TNM -- I wouldn't say it's "not accurate" but that it's just one part of the information that is taken into consideration. Long ago, before we had any details of cancer biology to consider, it was all they had. But now, other factors of biology (grade, ERPR, HER2, angiolymphatic invasion, Ki67, etc) are thought to make a bigger difference to both best treatment choice, and to outcome. But TNM still has an effect on prognosis also -- I have not seen anything to say that it's irrelevant, certainly.

Most studies and statistics that you'll see quoting bad news for ERPR- and/or HER2+ are from before there was Herceptin. The ones that take H into consideration seem to show that H levels the playing field, or even gives the advantage to HER2+, so that being HER2+ is considered good news (hard to label anything about cancer "good news", but you know what I mean).

Each person has a different style as far as dealing with the emotional, scary bits of a cancer diagnosis. Some do not want to hear ANY statistics of chances of recurrence and do not ask many questions -- just following their provider's advice and getting thru it. That's fine and normal. I would agree with Emily that information can make us FEEL stronger, but that is not necessarily true for all of us. Especially if we're in the hands of competent providers.

Others of us (probably most on this list, as by definition we're usually here because we're asking questions) want to know everything that is known. I don't know exactly why we're this way, but perhaps it has to do with giving us the illusion of control, to gather our information. I think that's fine and normal too -- just a different style.

But Amy, your question, and the clever way you frame it! You're right, of course. No one, cancer diagnosis or not, knows these things for sure. I totally get your point, and I did and do "use" the motivations you mention to try and be in the moments of my life. But at the same time, I gather information (obsessively?) about all cancer details including prognosis. At 11 years out, I've let go of that obsession for myself personally but I still have the interest, and frankly never thought to question why we want to know, nor did I ever think it abnormal that people DO want to know what is known. Thinking, thinking. Amy, do I have your permission to quote what you said, to another list where there's a knowing-your-prognosis thread? I won't use your name.

Debbie Laxague

[Mtngrl]

Debbie,

Thank you for your thoughtful reflection on the different ways of coping and different approaches. I hope I didn't seem disrespectful of gq's desire to know, and I do understand it myself. In fact, I freely admit I'm someone who obsessively seeks information and understanding. I don't think there's a lot of magical thinking in it. It's not some kind of talisman to ward off bad luck. But I'm curious, and I constantly gather facts of all kinds.

But then I began to reflect on what difference it would make if I knew. It could be really demoralizing. Depending on one's risk tolerance, the answer might cause the person to sink into depression and just give up on life. (That may well be why no one has volunteered the information about my prospects. . . .)

Go ahead and quote me. Thank you for asking for permission. And thanks for the stimulating conversation.

[Jackie07]

Here's my two cents... [Jumping in to prove that even the ones with recurrence have a right to speak. ]


I've always been a 'glass half-full' type of person (having been pampered by my parents and 5 older siblings] So when the statistics told me that there's only an 8% chance for me to have recurrence after chemo and radiation, I took the treatment in stride and was getting on with my 'new' life.

Unfortunately 4 years later we (hubby and myself) found a tiny little nodule when I became quite sick and later realized the previous mammagrams had been misread - nobody had ever informed me about the so-called 'scar tissue' before. And it was not scar tissue! [Fortunately I had requested an appointment and then the mammagram through my original surgeon.]

Herceptin has been a great medicine for treating Her2 breast cancer. All the statistics are old and not Her2 specific. There have been a lot of changes during the three, four years I've been on this Board. I think most members (especially the new ones) who have been treated with Herceptin (and a few who have not received chemo/Herceptin) are going to live a long, long time.

[CoolBreeze]

As they learn more and more about the biology of cancer, they have learned different methods of calculating recurrence and relapse. The TNM system is older but treatment is still based on it, with modifications for new biological discoveries, such as herceptin for HER2+.

I know when I was first diagnosed at Stage II, I spent a lot of time thinking about this but when you are around cancer enough, you learn there is no rhyme or reason to it. You will see people stage IIa become Stage IV (like me), even people with DCIS become Stage IV which is such a rarity but happens. You will see people IIIc live for 30 years, and sometimes even a Stage IV person gets many years.

I realized that it's just impossible to know what is going to happen to you in the future and learning to accept that is part of the process of moving on in life. If there is a lesson to cancer, I think that is it: Learning to let go of things that you can't control.

What I did was make a decision that I would stop worrying and thinking about it when my treatment was over. I was going to get back into life and not be a victim of cancer. It was a very deliberate move on my part, but I didn't want to be one of those woman who spend years living in fear, and scanning for each pain, and in cancer support groups years after their treatment ended.

I decided to accept the unknowable and live as if I was healthy and cancer was behind me.

I got four months only before I was discovered to have mets, but they were a great four months. And, the steps I took to learn that all you have is today and to not focus on what might happen in the future has made dealing with Stage IV cancer a bit easier.

I hope you get 40 years, and I hope when your treatment is over, you will put this behind you and live those 40 years to the fullest.

[Mtngrl]

Beautiful, Ann. Almost poetry.

[AlaskaAngel]

Perspectives differ.

The reality is that we are all here with the same disease but with different levels of risk based on what pieces of evidence science has put together. We generally think one way if we have never recurred or had mets, and tend to think differently about risk when we have had a recurrence of cancer or mets.

The actual individual risk is what changes with recurrence. One does often make very different decisions about both "now" and the future based on one's perceptions of their own situation and risk at any given time. So, it "matters".

I interpret risk a bit differently than Ann does.

"when you are around cancer enough, you learn there is no rhyme or reason to it."

For me, it would read, "When you are around cancer and treatment enough, you learn that there is no rhyme or reason to treatment outcomes" on any individual basis.

AlaskaAngel

[chekmark]

What I have learned is that if I meet a person with almost the exact diagnosis as me their doctor told them they have a 10% of recurrence. My doctor told me I have a 25% of recurrence. Who is correct? That person has the same diagnosis as me, did the same treatment as me but was told that she has a 15% lesser chance of having a recurrence than me. That was an eye opener for me. One never knows what our outcome will be so we need to always be prepared. An old classmate of mine was sitting at his desk studying for a test on sunday, had a massive heart attack and is gone. My first thought was OMG that poor family, they had no idea this was going to happen and were not prepared. I live 20 minutes from the school that just had the shooting this week, 3 teens killed, horrible. Those poor families, they sent there children to school that morning and in an instant their lives were changed forever. We could live 30 years or we could live 2, we just dont know. I try to tell myself everyday that right now my cancer is gone and it is never coming back, sure there are days that I feel kinda crappy and my mind wonders to that dark place but in the big picture, I do not have cancer now and I am going to make the best of this day. I am a worry wart and at first I clung on to ever word that everyone said. Some people are stupid and will say something like, my friends sister had that and was gone in 6 months. Stay away from those people. Herceptin has changed our outcome tremendously as my oncologist just told me yesterday. Hope that it worked and like Ann said you will most likely be here 40 years from now. I try to live each day as if I never had cancer but the fact is I did and I cannot change that but I can change the way I think and lavish each moment I have left on this earth. I hope I never hear those words again, (you have cancer) as we all do but there is just no guarantee. You caught it early, be thankful for that and for all the people that put their lives on the line in clinical studies so that we can have the best possible care. It doesn't always work as you can see by others on this site but they are brave, strong individuals and life goes on. Just keep telling yourself how fortunate you are to have caught it early and try not to worry about the later. I did at first but have changed my thinking alot in the past few months and I have found life to be so much more enjoyable. People like being around me more now than when I was in treatment. No more doom and gloom. You will be fine. Take care of yourself and listen to your body, if something doesn't seem right then tell someone, dont ignore it. I am a bad one about that. Before I found out I had my cancer I kept saying to my family doctor and OB doctor that I just did not feel right and they said I was getting older and my body was changing. For 6 years I kept saying this, turns out it was cancer the whole time. Pay attention to your body. Man I did not mean to say all of this, hope I do not appear harsh. You are young and I am sure you have a whole lot of living to do. Take care. Darlene

[chemteach]

All of you are such wonderful writers. Your words are accurate. We move on, and we hope that this ugly disease is behind us forever. There are no guarantees, and no one can promise us years and years of healthy living. We just keep going and living to the fullest. Onward.