WHAT IS YOUR PROGNOSIS?

I never asked my prognosis nor my chances of recurrence.

It's either 100% or 0%, as I see it. I either will recur or will not.

I just tried to maximize the benefit of the treatment, and try to live well now.

Diane,

I hesitated a long time before starting to write this post.  I saw that you had already begun one thread on recurrence risk, urging others to "talk" about it, and now there's this thread, urging us to talk about our prognosis.

I did not spend much time talking about my prognosis with my doctors. They told me my prognosis was "good" because I had Stage I cancer.  They said I was at higher risk of recurrence than most women with ER+ tumors, because mine was nearly 2 cm in diameter (1.8 cm), was Grade 2 (intermediate differentiation), and was PR negative.  Also, my Oncotype DX recurrence score was 26, which translated to a 17% risk of "distant recurrence" (metastasis) in 10 years, assuming I did not get chemo but I did take tamoxifen or an aromatase inhibitor for 5 of those 10 years. I was told that chemotherapy would cut my recurrence risk by about one-third, bringing it down to around 12%.  I also have a higher-than-normal risk of a second breast cancer because my breast tissue (the tissue in my remaining breast) is quite dense, even though I am post-menopausal.

That's that.  I know my recurrence risks.  I know (I've read about) the things I can do in my everyday life that might help to decrease those risks a bit, like losing weight and exercising regularly and not drinking alcohol. Those things have been proven to correlate with the risk of breast cancer, and probably with recurrence.  There are many other things that are suspected to be related to breast cancer risk but the evidence for or against is not as strong. Even so, there are quite a few things we can do, beyond our actual cancer treatments, that will at least help us feel like we're making a difference in the outcome.

You might be wondering why there have been so few replies to your posts. I've discovered that many women here would really rather not talk about their prognosis, or the probability that their cancer will return, or the likelihood that they will not be alive 10 years from now.  They prefer to do what they can to keep their cancer at bay, but not spend time worrying that it might come back.  There is that acute phase of terror, of course, that comes soon after our diagnosis and sticks with us for weeks, or months; and even resurfaces every time we go in to our onco for a recheck appointment or have a scan or bloodwork or our annual mammogram. At those times, we lie awake at night and can almost feel those cancer cells spreading through our bones or our lungs and setting up metastatic tumors there. 

Fortunately, though, for most of us with "early stage" (Stage I or II) cancer, the terror fades and the panic subsides, and we get on with our lives.

I'm going to assume that you know all that, and you understand the fears we live with and suppress every day. You were diagnosed just this past year (more than a year after I was), so the fears are probably more acute for you than they are for me.

I've decided you really didn't intend to pressure anyone to confront fears she is trying not to face right now.  I'm going to assume you are just wondering about the definitions of "survival" and "recurrence" etc. Those terms are used a lot in medical articles about breast cancer and in risk calculations.

"Overall survival" means being alive, regardless of what else is going on. Women who have a local recurrence at the original site, or who develop metastatic breast cancer, or who develop a second (new) primary tumor, are all included in the "overall survival" (or just plain "survival") numbers.

"Recurrence-free survival" means the time between the treatment of the original cancer and the point at which it returns.  A "recurrence" can be defined many different ways:  local recurrence, regional recurrence, distant recurrence (metastasis).  Sometimes a contralateral tumor (tumor in the other breast) is even counted as a recurrence, although contralateral tumors that develop more than 6 months after the original diagnosis are more likely to be new primary tumors and not true recurrence of the original tumor.

Someone's likelihood of "survival" for ten years is almost always higher than the likelihood of "recurrence-free survival" for that same length of time.  To be "recurrence-free" for 10 years means your treatment worked pretty darn well, and you might actually be "cured". In the case of breast cancer, though, oncologists rarely use that word "cure". Unlike with other types of cancer, hardly anyone with breast cancer is told they are "cured" if they go 5 years without evidence of a recurrence.  That's because breast cancer can return at any time, even 10, 15, or 20 years after the original diagnosis.  That long time to recurrence is true for ER+ tumors.  It's less true for ER- tumors, which tend to recur more quickly (less than 5 years).

So, yes, if you were given "survival" statistics and you don't know whether they included recurrence, you should ask your onco for clarification. Other than what I posted above, I didn't discuss "prognosis" with my onco any further.  I have done, and am doing, what I can to minimize my risks; but beyond that, it's just a numbers game and I'm not a number. I cannot (will not) obsess on those things.  If I did, I would miss out on everything I enjoy in life.

otter 

P.S.:  Please take off your "caps lock."  It looks like you are shouting. 

Otter - great post, thanks for taking the time to do that.

The prognosis question is a fruitless one.  I was also a little obsessed with the stats at first, spent way too much time on adjuvant online (or whatever that site is called, can't even remember anymore!) tying to play with the numbers to make my prognosis better. Then a wise friend told me her theory (about her own cancer), "I have either a 0% or a 100% chance of dying from my cancer." So, no sense obsessing. It might take a while to get there, but the faster you can force yourself to stop worrying about it and just live, the better off you'll be. (IMO) :-)

Diane ~  I don't think your post offended anyone; at least I hope not!  I think what everyone is trying to tell you is that there is a phase for most of us in our treatment where we may become a bit obsessed with stats, but in the end, we realize they're just that -- stats.  They have little relevancy to us as individuals because each of our bcs are so individual, as are our lifestyle choices -- few of which are taken into account when they lump women with breast cancer together for research studies. 

But I hope what may have come across as "you need to move on" wasn't because anyone was offended or impatient with your question, but more because we know where you're coming from, we've been there, and we've made the decision over time (which you obviously still need) not to focus on stats. 

I hope that makes sense.  I just didn't want you to feel you'd said something politically incorrect, so to speak.  I certainly didn't take it that way.     Deanna

I did discuss all of this with my surgeon, my oncologist, and my radiation doctor. I don't remember exact numbers, but my radiation doc said that with all that we'd done I had a 6% chance of recurrance. I don't remember if that was 10 year or a guess at lifetime. I just moved and have no clue where I put all my notes!

I'm not offended either.  With my cancer(s) I have something like an 86% chance of five year survival, but those states were created before herceptin. Like somebody said, the survival rates are old.

I know what my specific stats are.  100% chance of survival.  I used to think I'd make it to 100 years old.  I still may, but I've lowered my sights - I now think I might only make it to 86.

I've never been a numbers gal, and statistics apply to the masses - not to me.  

I understand wanting to know stats and prognosis because we all want to hear we have many good years with our families and loved ones. I've since learned "it's a guessing game" and they (doctors) really don't know. I was DX: 5/2008 stage 1 /IDC, grade 2 <1cm tumors, snb-neg.and told was a 1% chance of recurrance. TX: 3 lumpectomies with 7-wks rad & Tamoxifen. 10-mos. later local recurrance same area with 4 small tumors onco=39. Had BMX and currenty 3/4 way thru chemo. Luckily 9-nodes neg. and scans neg but I now take little comfort in "stats' I had no risk factors as alot of other woman on these boards to getting breast cancer in the 1st place and that's what really creates such a fear with this disease. Now I try and get thru TX. and I can move forward with this behind me......

Hi to everyone.  I have read your comments and although we are strangers, we are so much the same, with the same hopes and same fears.  We all want to live!! 

This may sound stupid but my life is so much better after cancer.  Don't misunderstand, I'm not saying I'm glad about my diagnosis, but I'm glad that I've experienced something I've dreaded and feared for years and am still here to talk about.  My priorities were in the wrong order, I liked "things" way too much and I wasn't spending enough time thinking about other people and their problems.  It's hard to be thankful for "bad things" but I'm thankful because God is in the background working things out according to his plan.  As long as he's in control, why should I worry about statistics. 

I'll admit, as I made my chemo call this was a big deal to me.

People say if you get mets, you will regret not doing chemo.

But with a recurrance rate of 14% and a chemo benefit of 2-4 percent,the odds that chemo would have prevented it are 1 in 7 to 2 in 7. Not a slam dunk.

This sounds crazy, but for me part of this journey is making peace with the fact I may die. It forces me to be happy now, to live for the moment, and accomplish as much as I can while I am healthy.

I used to be very focused on what I didn't have. Professionally I did not accomplish all I hoped for.

Now I focus on enjoying what I do have.

It bothers me that my radiologist, surgeon, and gyn said when I was dx'ed, oh you will be fine.

I prefer "there is a very good chance you will be fine". It's more honest.

I never flat out asked "what is my prognosis?"

I didn't even ask for a copy of my path report.

When i finished rads,June 2008, I had a end of treatment meltdown. I called my oncs office crying and being all hysterical. I told my onc, that I am stuck with fear and was unsure how to move forward after cancer treatment. I was very lost and alone.

His words were..."focus on the fact that you are probably "cured" of BC. Is there a test that can tell us 100%....no."

I hang on to those words.

Diane64, you started a very interesting thread.  I listened to all the numbers that each doctor gave me as I progressed through them.  If I just had a lumpectomy and radiation, then I had a 12% chance of recurrence in 10 years.  When I went to Med Onc, my odds were good that I would not need chemo, but the Oncotype DX score of 25 fixed that.  Now with chemo, my percentages are lower, so adding radiation and an AI, what are my percentages, they haven't told me that one.

But in the end we don't know who will have recurrence, the doctors certainly can't tell.  They can't even tell us why we get the cancer to begin with.  Truth is, some of us just do, no matter what our lifestyles are.  We just landed in the wrong bucket.  I  think maybe we  landed in the chum bucket.

In the end, each one of us has to do the treatments that are right for us.  My Onc, said to make the decision and never look back.   That is what I am going to do, I know I have made all  the right decisions for me and if it comes back, then I will know  I am really in the chum bucket.

I never asked about my prognosis or my stats for recurrence, mets, etc.

What I did do was treat my BC as agressively as possible from a medical standpoint.  Chemo, surgery, radiation, and now Tamoxifen.

I would have to say the first 4 months after being diagnosed I was scared of getting mets one day - I kept thinking "nobody can guarantee that I won't get cancer again" and it worked on me emotionally.

I got past that point to where I am not depressing myself thinking about it.  I just take it day by day.  I am still not working - that is probably the only thing that would really make me feel more normal but I don't have the strength to work full time and the economy is really bad where I live.

I still drink, I still consume sugar but now I think more of doing everything in moderation.

Yes, I am stressing over the fact I have my first mammo scheduled on Monday so my dh will be taking me there so I can consume some valium before I leave the house.  But.....I know from reading posts by other women that this anxiety is normal and so I am ok with it.

I didn't ask the doctors about prognosis or statistics the first time - it was DCIS with lumpectomy and radiation - and the information on the internet showed about a 95%+ chance of it never happening again. So I didn't worry.

Five years later, it did happen again. This time I've had mastectomy, chemo, radiation, Herceptin and Femara. That seems to be the full arsenal so once again, although staying vigilant, I will assume that this chapter is behind me and plan to watch my gorgeous grandchildren grow up. The statistics never tell what will happen to each individual. Really, though, I ought to do better with the lottery.

Diane--it sounds like you are asking 2 questions--what your risk of recurrence is and what your survival rate is.  The 87% survival figure means there is an 87% chance you will still be alive 10 years from now, or that you have a 13% of diying in the next 10 years.  That figure probably includes death from any cause--that's the most common stat used. 

The recurrence rate is a different thing all together.  This figure gives a probablity of having a recurrence within a certain period of time--again 10 years is a common time frame. 

I got that print out, too, and also found a site where I could get the recurrence rate.  I played with them a lot in the early months after diagnosis. For a while I could rattle my numbers off the top of my head, now I'd have to go back to my binder and look them up. 

 The link JO gave is a very good one, and is very helpful. 

Linda - It certainly changes you perspective on things.  The crap that upsets my friends just doesn't do that to me anymore.  Good luck to you with the chemo and radiation.  It is nice to hear your sister-in-law is doing well and I'm sorry you've had a rough road.  All good things in the new year!

Sue