Geez, take a day off from the internet, miss all the excitement.

For Debbie L, here is the link to the thread with my post in it that discussed chemotherapy's relationship to late recurrences: http://her2support.org/vbulletin/sho...eferrerid=1173

Here are some quotes from a recent CME from Clincal Care Options for oncology, derived from information presented at the most recent (2007) San Antonio Breast Cancer Symposium:

Matthew Ellis, MD, PhD:
I will also add that good prognosis needs to be defined—and not just by a 5‑year event rate. In reality, a 15‑year event rate is needed, even for hormone receptor–negative disease. While it is true that late events continue to occur mostly in the ER‑positive population, patients who are ER‑negative still experience late relapses. Therefore, we need to be very conservative. . . . It is important to point out where the gray areas still lie. Even in the group of patients with low recurrence risk currently defined at 10 years, there could be events in that group at 15 or 20 years because they have slower growing tumors. Therefore, the idea that the RS (recurrence score measured by Oncotype Dx) could be used to determine length of endocrine therapy is not yet valid. However, chemotherapy benefits occur in the first 5 years, after which time, the curves become parallel. Therefore, chemotherapy exerts its effect on relapse early on because it induces tumor cell apoptosis. In contrast the effect of adjuvant endocrine therapy increases with time. In general, I believe that developing these genetic signatures as a tool to define chemotherapy decision making is promising, but they are not yet suited for making decisions about endocrine therapy, such as duration or choice between agents.


FWIW, I believe a lot of late relapses are not recorded simply because they are so late - maybe the patient has moved, the original doc has retired, whatever the case may be. There just has not been long term follow-up (and I mean 20+) to be able to give stats on the matter. The closest thing I have seen is the meta analysis performed by the Early Breast Cancer Trialists Collaborative Group, which meets every five years to review their data. In their most recent meeting in 2005, the phenomenon of late recurrence for ER+ patients vs ER- was discussed, and it was noted that at 10 years, the lines crossed, with ER- having fewer relapses and ER+ more. I think the greater focus of research has been on the more aggresive, early recurring bc, which is predominantly ER-, and the fact that ER+'s recur so late has taken attention away from the fact that we need additional research in this area. Remarks like those from Dr. Ellis above are encouraging to me, in that it appears there will be more research into this issue, and, hopefully, more options for treatment.

Hopeful

Her2+ Recurrence
 

In April 2007, I asked this question of Dr. Pegram, a well known Dr. who specializes in breast cancer: Do most Her2+ breast cancer patients have a recurrence?

Answer: No. Most don’t. Now days, for early stage breast cancer, stage I or stage II, since Herceptin, most of those patients are not recurring.

The next time I see my onc, I plan to ask him about recurrance: Do all breast cancers eventually recur? I usually avoid these kinds of questions because they make me nervous, but I have to believe he will know of many patients, who are many years out (20 years and more) that have not recurred.

However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

Hi Becky,

Thanks for the great answer to the Estrace-chemistry question (although we still don't know if there's danger in any or all of those chemicals, right?)

I have never heard your statement above. Which doesn't mean that it's not true. But to differentiate between distant mets depending upon whether they are found as initial diagnosis or after primary doesn't make sense to me.

For one example, people recur who didn't have chemo - do they count the same as initial stage IV's? I've never heard the concept of chemo naivety making a difference to prognosis after mets diagnosis. It's more about what/whether the cancer responds, isn't it? It's true that each additional treatment tends to get a shorter and shorter response, but some get years from each treatment while others run quickly thru the options with little response. Still others try treatment after treatment without response and then hit on one that takes them to NED for long periods of time. There does not seem (right now, because we don't understand enough) a lot of logic to the behavior of cancer.

I agree with almost everyone else on this topic. Stats don't tell us anything about our own self. They are useful only for helping to make treatment decisions and after using them in that way the best thing would be to forget them and move on (easier said than done). It's hard to accept the uncertainty that there is no way to know what will happen to any one individual but that's the truth.

The only part of this thread that I adamantly do not agree with is those who are saying that cancer always comes back. You cannot look at a few of your acquaintance and draw conclusions. Look at the many available studies that include thousands and thousands of women and see that many are cured. The rub, of course, is that no one person can know (until they die of something else) if they are in that cured group.

As for prognosis after stage IV diagnosis - treatment is advancing SO quickly there that I don't think useful stats exist right now for these women. Because they are living so much longer (as a group), it will take longer to accrue the stats that apply to them. It's good news, right? Sky's the limit!

Debbie Laxague

Dying sooner because of having had cancer
 

Because we are HER2 and that is where so much of the research has been focused, I am optimistic that things are and will continue to improve for those of us who are here now.

However, I think it is still a different story for triple negatives especially, but also for other forms of bc.

I have to raise a question about numbers:

From DebbieL:

For one example, people recur who didn't have chemo - do they count the same as initial stage IV's? I've never heard the concept of chemo naivety making a difference to prognosis after mets diagnosis. It's more about what/whether the cancer responds, isn't it?

My question and response:

"It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment -- especially due to things like heart disease with drugs like Adriamycin. There is also an unknown percentage who die from other effects brought on by treatment that are not even as yet acknowledged to have been related to or caused by the treatment for cancer. Those numbers would also, of course, be different for those who are treatment-naïve.

We also do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.

Does anyone have the numbers for the people who fall into those categories?

A.A.

In my family
 

Just to add my 2 cents - we are celebrating my Mom's 78th birthday in 5 days - she had bc and a mastectomy - no rads or chemo - and then a recurrence 5 1/2 years later - had chemo and rads and that was over 16 years ago.

I am with Becky and Ma Bubois and my Mom!

Love this thread, good discussion!

Donna

Not to beat a dead horse, but the stats (albeit a bit dated) on stage 4 at diagnosis are the ones that the NY Times article that I quoted for Elizabeth Edwards. These are for women originally diagnosed at stage 4. The ACS later had to issue an apology to the Edwards campaign, noting that it does not have statistics on women who later go on to have metastases. If I did it right, below should be a link to a PDF from the ACS with these stats. (Look at figure 8 for women with distant disease at diagnosis.)

http://www.cancer.org/downloads/STT/BCFF-Final.pdf

I would love to be proven wrong on this, since I have been searching for more favorable statistics on long term survival for stage four disease, but I have not found anything particularly encouraging. (If you have an article or study with better figures for someone orginally diagnosed at stage 4, please post it.) That said, I am currently NED, and I know that some women with stage 4 disease do quite well on Herceptin for a long term. Everyone is different, and responds differently to chemotherapy and Herceptin. So, I am merely posting this to back up my original position, not to discourage anyone. I personally, intend to be someone who beats the odds.

Great discussion!!!

IMHO, Sassy said it best when she said:

One thing to remember is that the statistics quoted for 10,15,20 years survival are based on data that is for initial treatment 10,15,20 years ago. Not based on current treatment.

touche!

Goops, Brenda, I am with you, too!

And PinkGirl - has it occurred to you that there are bc survivors passing you on the sidewalk every day and you just don't know it. Because they have just gone on to live out their (long) lives. Do you walk down the street shouting out "I'm a cancer survivor"! Probably not (at least not ALL the time), so what makes you think there are not others out there too?

I went to a Jimmy Buffett concert once and saw a fellow "peer navigator" there. She was a long time BC survivor - but to me and everyone else, she looked just like any other parrothead. As, by the way, did I. That was shortly before I DID have a recurrence, but since then I have gone to 4 or 5 more Jimmy Buffett concerts and don't plan to stop any time soon.

just another parrothead. They do have those in Canada, don't they?

I was in Vegas for a week...
 

and I missed alot of threads. I think that with Herceptin, certainly most early stagers will not recur. I know my onc. gave me a "well over 90% cure rate", and he would not use those words lightly. It's a whole brave new Herceptin world out there, Taxol/Taxotere world out there - and those stats won't be available for years to come - and I intend to be in the over 20+ years survivor group.

I have a friend who was diagnosed at stage 3, 12 positive nodes - 10 years ago at age 43 - no recurrence. I have another friend diagnosed at age 37 - stage 3 - ( now 11 years out) - no recurrence.

And it's a crapshoot - let's just keep on plugging for the cure.

Oh, and Chrisy - yes, we do have parrotheads in Canada.

all the best
caya

Chrisy, Chrisy, Chrisy,

And PinkGirl - has it occurred to you that there are bc survivors passing you on the sidewalk every day and you just don't know it.

So now you are assuming that we have sidewalks in Canada???? I had to google parrotheads. I've always liked Jimmy Buffet but had never heard of a parrothead. Now I know.

Just between you and me, I'll tell you what my problem is with the discussion in this thread. I admit that I have always thought that breast cancer isn't a good thing to get because lots of women die from it. Don't know where I got that idea but that's what I've always thought. Now, the optomists in our group are trying to set me straight. So now I'm wondering why we are always crossing our fingers, sending good vibes and praying for each other.
Why are we all basket cases when we're having scans? I took out my garage door while waiting for MRI results. If all of us here have had surgery, chemo, radiation, on tamox. or an AI, then we probably won't recur, right? But we keep on being scared and we post about mind/body stuff and how to meditate and relax and handle our stress from this disease. Has that all been for nothing??? According to what I've read on this thread, the majority of us are not going to recur; we're going to live to be little old ladies and die from something else. I am confused.

Pink....Nothing to add just wanted to say I loved your post. How true it was. No matter how optimistic any of us are the fear of this disease is always lurking....how right you are!

As I read your post I smiled all the way to the end.

I guess we'll all continue to "send good vibes" ~ "cross our toes" and "pray" or whatever trips our triggers.

MJ

Oh Pinkie and everyone - If We had the answers, we all wouldn't be here at this great site discussing this. There is no right or wrong answer for this one. Every cancer is different as is every person. Why did my friend named Maryann, similar in age (she was 3 years younger), young kids and Greek like me get diagnosed around the same time as me with stage II bc (don't remember all the details) and even though I was stage IV with all the rare stuff, she is the one that passed on and I am still here fighting each new thing that is thrown at me and responding to every treatment they give me???? Maryann did not respond to any thing. She did the miracle Herceptin and all the other chemo's. She got the Tykerb but I think it was too late by then. I am single and have no one besides my elderly mom as my caregiver (my kids are great too, but...). I handle all my own medical care and decisions, the finances, insurance, financial aid for college, financial/co-pay assistance, grocery shopping, cooking and most of the laundry and cleaning. Maryann had a very tentative husband that handled her medical decisions and did everything when she was in treatment. I think I had way more stress on my back, having no one to really share the load with. I had to be aware every second of the day. An on call doctor tried to change a medication in the middle of the night on me and that would have interfered with another long term medication. I was on morphine enjoying the high and pain free existence but still had to get my wits about me and fight the doctor. I yelled at him and made him get my regular doctor on the phone so this guy could look like the a$$ that he was. My point being...???? I am not a statistic!! We are living longer because we are becoming smarter than some of the doctors!! I am proof of that. In the past, no one lived with stage IV Inflammatory bc almost 9 years out especially after occurrence, Acute myeloid Leukemia, a bone marrow transplant (that 10 years ago they would have thought me too old to handle and not done it), severe Graft vs Host disease of the liver (one woman that happened to be one of my clients from the law firm had her transplant at the same time as me. She passed on from GVHD of the skin). And now I have iron over load in my liver that WILL set off alarms at the airport/court house. You have to put your faith in your doctor, medical decisions and yourself. Don't second guess what you have chosen to do. Take the best care of your body as you can and LAUGH as much as possible. Cancer hates the sound of laughter. It means you are living with cancer not becoming your cancer.....

That was very encouraging to read Vi Schorpp's post about her friend that had BC 19 yrs ago and was BRCA postive. (since I am also BRCA+)

Also, it was also very encouraging reading Barbara's question to Dr. Pegram.

I think what makes it tricky to predict outcomes are all the variations out there in the biology of cancer tumors. the good part is that we are able to identify that much more then we were able to in the past. That must push up a higher percentage of people into the safe zone.

Maryanne

I met a woman during my treatments, stage 4 breast ca bone and brain mets and has been on and off treatment for the last 12 years. She works everyday, loves her family, cooks Sunday meals, and takes vacations with friends....to me, that is a testament to the idea of living your life in the present, not looking to the future at your own death.We all will die. That is guaranteed. Yes, we may all at some point recur, or we may not, but you know, I can live with that. I don't need statistics to tell me I have an 20% chance of recurrence in the next 3 years or a 23.5% chance of metastasis in 2 years. The only statistic I need is that I am here right now and I have been given this time, so I will cross a recurrence bridge if and when I get to it. The only thing I can't live with is the fear and doom of cancer hovering over my head...

Cheers to us and today!

AA says: "It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment <snip>
...do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.
Does anyone have the numbers for the people who fall into those categories?

I think that the answer is "no", not really. There are some stats but because of what they are looking at (very long term effects), they are even more outdated (for those being treated today) than the survival-from-cancer ones are. But the number is small. Smaller than the one for breast cancer death and recurrence, certainly.

My take on this at diagnosis was that I'd rather do what I could to survive the cancer (more a short-term goal) and deal with what I had to do (perhaps) to survive the effects of treatment if/when that became an issue (long term). Die now or risk dying later - I chose later, with no qualms. At diagnosis, I figured that if I lived to deal with the possibly life-threatening aftereffects of treatment, I'd be most fortunate.

As for treatments that potentiate recurrence - we'd have seen that, wouldn't we? Yes there are treatments that are ineffective but the rub is that they are only ineffective for some while working wonderfully for others and we do not yet know how to tell ahead of time who is who. Progress is being made in this regard (individualized treatment) but it is slow, because the questions are incredibly complex.

Debbie Laxague

long and rambly
 

Pinkgirl said: I've always thought. Now, the optomists in our group are trying to set me straight. So now I'm wondering why we are always crossing our fingers, sending good vibes and praying for each other.
Why are we all basket cases when we're having scans? I took out my garage door while waiting for MRI results. If all of us here have had surgery, chemo, radiation, on tamox. or an AI, then we probably won't recur, right? But we keep on being scared and we post about mind/body stuff and how to meditate and relax and handle our stress from this disease. Has that all been for nothing??? According to what I've read on this thread, the majority of us are not going to recur; we're going to live to be little old ladies and die from something else. I am confused.

Well, for some of us, the odds are or were less rosy than "probably won't recur", regardless of intensity of treatment. In this discussion we are talking global figures but some had worse details than others at primary diagnosis and others are still trying to find effective treatments for stage IV.

I think that after primary diagnosis the level of fear-of-recurrence, though, is probably more related to each individual's perception of the threat than it is to actual threat. Some who statistically have a 96% chance of survival may leave bc in the dust and move on - certain that they are cured. Others may experience lingering concerns. 'Same could be said of the other way 'round. (96% chance of recurrence). Again, the statistics tell what happens to large groups of women but have nothing to say about what will happen to any one individual. There are no guarantees.

I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard. We can use that alert to explore and grow. I see that as an opportunity for which I am grateful. Cancer is just one of so many things that can afflict people. I do not see it as a "terrible disease". I do not hate it. Everyone has burdens. This one just happens to be one of ours.

For myself, I'm no longer scared. I mostly let go of scared about a year after diagnosis. This is not to say that I believe that I will never recur and die. I know and acknowledge that possibility. Sometimes, in fact, I "use" that possibility to remind myself to focus on what's important.

Whoa. Rambling alert.

Debbie Laxague

OK guys, now I'm having a 'quote impairment' insecurity. How have you all been doing the quote thing?

dlaxague said: I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard.

PinkGirl, this is a great discussion - thanks for starting this thread. I love this place. I wish I had wisdom to add.

True, breast cancer is not a good thing to get and many women do die from it. But not everyone, especially as more is learned about this disease, early diagnosis, prevention and intervention.

Statistically, many (most) women do not recur, and those diagnosed at earlier stage have more favorable odds than those diagnosed at a later stage. True, these are all just statistics and WE are all individuals. For each individual either you WILL or WON'T get cancer.

I include myself in the "optimists" side because even though I am everyones worst nightmare, I still try to stay optimistic even for myself.

But what I think we're seeing most on this thread is statistically backed optimism! It's not optimism that most women do not recur and die from breast cancer - it's reality. Choosing to believe that you as an individual will be on the "right" side of the statistics is optimism, but that doesn't mean it's not valid.

I think once we've received a diagnosis of breast cancer, the threat becomes real, we suddenly become the "someone else" who gets cancer. And we will or will not recur and will or will not die from cancer. Where we could comfortably ignore the C word before, we now have to face it, and our fears about it.

Most people get to blissfully ignore their mortality, we "get" to face it head on.

Remember, as wonderful a place as our HER2support forum is, it is not a representative sample of breast cancer survivors. We are mostly people who are actively in the fight...either as newly diagnosed or "lifers" who are living in stage 4 of 50. So most everyone here is getting scans, treatment, etc. all the time! It's a pretty intense environment. But we are not statistically representative of the world of people who get breast cancer - even Her2 bc.

I really value the survivors who stay around to continue offering their wonderful support. But most people eventually put their cancer experience behind them, including the need for support groups such as ours.

PinkGirl, I hope you'll stay forever because you bring so much honesty and humor to this forum. Also because you clearly still have much to learn about the world and we can help you. But you will not always be in treatment, having tests, facing your fears with as much intensity. You will (statistically speaking!) be one of the millions of bc survivors who get to look at their cancer experience only in the rearview mirror.

oops....is there another ramble alert needed?

Geez Chrisy, now I have to quote you again. You said, to me, Also because you clearly still have much to learn about the world and we can help you.

Are you saying that I'm not worldly???? Just because of the spray cheese, parrotheads and MTV????

The big picture of the of HER2 bc in terms of numbers is the same no matter what our diagnosis is, but it looks different to each one of us depending on where each one of us is standing. For the most part, those who are diagnosed as Stage I are standing closer to the part of the picture that is less threatening, and those who are diagnosed as Stage IV are standing closer to the part of the whole picture that is more threatening. Our perspectives are often different.

We do know that at least in the USA, around 90% of those diagnosed now are diagnosed as early stage. So most of those with bc are looking mostly at the less-threatening part of the big picture. And that "part" of the big picture is accurate for 90% of those diagnosed with bc.

Most of those diagnosed with bc (90%) nowadays are likely not to benefit from treatment whatsoever (other than perhaps the psychological benefit of believing it gives them some protection), and are more likely to suffer adverse effects from treatment, including death from "other causes" that are often not counted as "cancer" deaths yet would not have happened had they not had treatment.

However, of that 90%, those with early stage HER2+ bc are in a more puzzling situation. Some are at high risk even when diagnosed as Stage 0 and some at low risk even when diagnosed as Stage 1, so there is an uncertain degree of reason for early stage HER2 positives to "play it safe" and do treatment.

As a stage I, I am somewhat more likely to see cancer and recurrence as less threatening because that is more accurate for someone diagnosed as Stage I -- even in regard to HER2 positives -- whereas DLaxague was diagnosed at a higher stage and accurately sees cancer as more threatening and sees treatment as more effective and more essential. For different reasons we each did not have Herceptin, yet we both are still NED more than 5 years out. Because I fit into the 90% who stand to benefit least from treatment, I see treatment as being somewhat more of a threat than a benefit. I think 90% is a very meaningful number.

AA says: "It depends". Are we only talking ONLY about recurrence, or are we talking about the likelihood of dying sooner due to having cancer? For one thing, there is an unknown percentage of additional women who die sooner of "other diseases" brought on by cancer treatment <snip>
...do not know which of the treatments that turn out to be ineffective actually may potentiate recurrence; i.e., they may not only not be effective, but also contribute to the recurrence.
Does anyone have the numbers for the people who fall into those categories?

DLaxague says: I think that the answer is "no", not really. and As for treatments that potentiate recurrence - we'd have seen that, wouldn't we?

ME: No, we cannot assume that to be true.


-AlaskaAngel

OK I have read every post, tons of books and articles,
etc. (most everything about bc). I want to believe that
its all over but I still insist on tests to check? Go figure.
Today I opened a Vanity Fair Magazine and the Breast
Cancer Research Foundation had a quote and it said in
the US a woman will die from breast cancer, on average, every 13 minutes. Wow thats just way too many and I hope that figure is changing with all the
new drugs. I am taking Qigong and they say all that
matters is the now so for now we are all ok. I also
read Eckhart Tolle, The Power of Now which was
hard to read but enlightning in many ways. Take
care everyone and have a great weekend.
patb

Debbie says:

Quote:

I think what all our discussions about anxiety and fear are really about is accepting uncertainty. But everyone's life is uncertain. No one's life (even the sweetest, healthiest newborn's) is certain. We've just experienced a higher-level alert than most, in this regard. We can use that alert to explore and grow. I see that as an opportunity for which I am grateful. Cancer is just one of so many things that can afflict people. I do not see it as a "terrible disease". I do not hate it. Everyone has burdens. This one just happens to be one of ours. For myself, I'm no longer scared. I mostly let go of scared about a year after diagnosis. This is not to say that I believe that I will never recur and die. I know and acknowledge that possibility. Sometimes, in fact, I "use" that possibility to remind myself to focus on what's important.

wow Debbie, thank you so much for writing this, I've just finished rads after almost a year of treatments/ surgery etc etc, and I'm still in that scary place where you can't quite allow yourself to live your life again because you're so scared it's going to hit you again..........in the meantime you waste precious time of your life....

where you are now is where I hope to be some time in the future, won't be a year from diagnosis as that is only a month away....but hopefully, not long after that.....so again, thank you for expressing it so well, for showing me there is a way out which doesn't entail any "thinking positive" - how I hate that phrase - nor feeling paralyzed by fear of recurrence.



(I have been visiting this forum from almost soon after my diagnosis, rarely post as I nver feel I have much to contribute that hasn't already been said by someone else, but I thank you all ladies as you are an incredible source of information, and reading your stories has helped me get through this really long and difficult journey!)

Chiara

Additional info, current article
 

I have a great-aunt who underwent double masectomy in 1982, she is alive and ornery in a nursing home at 94! I also know of a woman who had two different breast cancers ten years apart. She's also doing very well and in her late 70's. Let's keep the faith.

Sadly, one of my chemo friends lost her life on Thursday, she was Her2 postive. She was 72 and survived many happy years following diagnosis. She was a wealth of information and very supportive during my chemo treatments. I shall miss her.

Dana

Dana, those are beautiful girls!

Pink girl, love the discussion here and can identify with your thoughts and am every bit as confused as you.
I've just celebrated my third year out and was feeling good in believing totally herceptin had changed the stats for me and I was one of the lucky one's.
I say this because two of my friends dx with me have had recurrance's, one to the liver and passed very quickly and one who is still in horrendous tx having had a huge tumour growing on her spine the whole time she did chemo with me!!
I was feeling confident, this evening I sit here with a pain in my knee, it's been there over a week and if still there next week will have the attention of my onc but...suddenly I have that dull scared feeling in the pit of my stomach and wonder if this it???
God do we ever get over this fear??
I doubt it and imagine I'll never have a pain that is just a pain anymore but mets somewhere in my mind. I think cancer does'nt just affect the body but no matter how positive the personality it always has a profound effect on the mind too.
Thanks again for bringing it up!

Today I just began reading a book called "After Breast Cancer" by Musa Mayer. It was sent to me by the people who make Herceptin. When I began treatment there was someplace you could sign up for info from them and I have periodically received little encouraging pamphlets, etc. Now that I have completed the year of treatment, this book came. The timing is perfect. It looks to address so many of the concerns and fears we all share.

I wanted to post another 2 cents. I did read (4 years ago when first starting my journey) that Stage 4 (5yr survival) stats were 45% (perhaps it was not disease free survival but when looking on cancer.org, the 5 yr disease free survival for those diagnosed (chemo naive) at Stage 4 is 26%. Just wanted to say that as "Unregistered's" statistics were right. None the less, think about how GOOD that is (and those stats are from at least 5 years ago).

Had lunch with MJo and Joan M today near New Hope, PA. It was very nice to meet 2 more from the board. Very soon we are going to post to have a lunch in NYC so stay tuned for a "sign up" in the next couple of weeks.

The way I try to look at the present and the future is like this: For today, if I am NED right now, and there is nothing significant that I need to be concerned with, I really want to appreciate THIS day. Who the heck knows what tomorrow may bring. It may bring yrs and yrs of days like today, it may bring situations like before where I will be needing to contemplate options and whatevers.....So no sense in jumping the gun and spoiling the carefree days right here and now. I will deal with the future when the future becomes present.

Dont get me wrong...many times I do slip and worry about what may happen,....I just try not to for the above reasons.

Amen, Harrie. The Buddhists would call the essence of your post, "mindfulness". Living in the moment. If you dwell on the past and worry about the future, you cannot enjoy the only thing that you really have-the present. The past, you "had" that and now it's gone. The future, you may or may not "have" it, who knows. The only thing that you actually "have" is right here, and right now, and we should enjoy it to the fullest. Be mindful of every moment, and how we spend them.

If what some say about the statistics of survival being stage IV, then I have alot of living to do in the next 2 months...because that will be my 5 year mark as stage IV.... and getting close to 7 years as a survivor....I focus on living, not on the what ifs....the way I see it, cancer has altered my life, and some of my plans, but it will NOT alter my spirit! Each day is a gift to ALL of us, healthy or not, and what we do with that gift is what truly counts and makes a difference....I'm a IV, I have always dreamed of being a 10!

You have always been a 10, Sheila.

Another thought.....

Every single person alive on his planet has "X" number of days left to live their life. It is a granted that in the days to come, some days will be great and some will be challenging. To spoil a good day with worries about something that may happen in the future that we have no control of at the present, is a thoughtful waste of a good day that already has so many blessings to be appreciative of right here and now. AND...these blessings may for some reason not be around in the future. BUT......remember too....the future will probably be holding some surprise blessings for us that we are totally clueless about right now!
Life has a way of working itself out really well if we just allow it to be.

Two different stage IV'? - still don't understand
 

Becky said: "women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients."

Becky, do you have some study or other information to give us to prove this statement? I've never heard that there's a difference between de novo stage IV diagnosis and a stage IV recurrence.

I do agree that no statistics available right now will apply to women being treated for mets right now - because things are changing too fast (for the better) for statistics to keep up. So the news is better than any study can show.

But again, I've never heard of this differentiation and if it's true, there would be many clues within it. Please tell us more.

Debbie Laxague

Somehow I missed this thread. I've just read it all, and all I can say is "WOW!!" No wonder I feel so much empathy and love for those on this website. You are all so incredible. I just have to add my 2 cents worth, since as most of you know I am a 23 year survivor of BC. I don't know how to do my personal history column at the end of each post, so will briefly repeat it here:
Diagnosed at age 56 in 1985 with early stage BC. Bilateral mastectomy + reconsturcton (silicone) No chemo
Mets to T-9 and T-10 vertebra in 1990 (within 5 years) No chemo, used diet change, psychonueroimmunology (hypnosis and meditation), plus 5 years of Tamoxifen. My last MRI in 1995 report stated "HEALED metastatic breast cancer)
I took that literally and "forgot" about BC for 15 years. Lived very active personal and professional life
Heart attack in 2004+ CT showed BC mets to lungs, now her2. In hospital 1 month due to heart attack and pnuemonia then treatment with herceptin and navelbine for 6 months. Herceptin alone for 9 more months. Heart affected (ef=30), triple bypass, 2006.
Moved 3 times; finally settled and stable in S. Utah, a wonderful area; last 3 PET's=NED (Latest PET in June 2008)
I am now 78 years old (will be 79 Dec. 9), looking forward to being 80 in Dec. 2009. I have severe fibromyalgia, so I have to ignore pain. I faithfully take diovan and coreg cr , which has greatly helped the cardiomyopathy and congestive heart failure. I also take femara and fuerosimide and the suplement Reliv. I eat mostly vegetarian, try to exercise some. My ef is now over 50. I live life to the fullest, am writing my life story, am very active in my church, enjoy my wonderful husband , 9 children, 32 grands and 32+ great grands. Life is good. I don't have extra energy to worry about BC, will probably die of a heart attack anyway, but life is still so much fun I plan to be around awhile, and no matter what, LIVE every day.
I don't know where I fit into the statistics, since my onc gave me less than a year when I started herceptin. I just laughed at him and said "Watch me!" I have cashed in my life insurance. That was fun.
I still think this website is one of the best things that has happened to me. I appreciate Joe and Christine so much, and I love and appreciate each one of you. As I read your posts I visualize each one of you and pray for you. I know how dibilitating fear is, but I remind myself that "fear and faith cannot co-exist" so I concentrate on faith.
Sorry this is so long, but I want to add one more thing, my latest favorite quote to live by. It's from the CancerCrusade:

When you come to the edge of all the light you know and are about to step off into the darkness of the unknown, faith is knowing that one of two things will happen: there will be something solid for you to stand on, or you will be taught how to fly. (Patrick Overton)

I believe that. And I love you all. Hugs, Tricia

Tricia-

YOU are ONE savvy chic !

Maria

Just wanted to say.......
 

Just wanted to say I love you Tricia and think you are simply WONDERFUL. You offer such wisdom and love to this site and give all of us hope.

Thanking God for you "sister"

Mary Jo

[quote]However, women diagnosed as Stage 4 from the get go, being chemotherapy naive, they may never recur and the chemo may do its magic the first time as it does in the lower stages of cancer (by erradicating micro mets that we don't even know are there). I stand by my fact and I am sure yours is true to but we are talking about 2 different kinds of Stage 4 patients.

Becky,
My oncolgist told me exactly the same thing. He said it was very possible that I had a complete response to my initial chemo and there was a possibility that I would not reoccur. Meaning that the chemo had gotten every stray cancer cell. He told me from the beginning that he expectecd that if I were going to reoccur that it would be in the first 7 to 9 months after chemo, that's when they see the majority of reoccurances in stage IV that had responded to chemo. It has been 2-1/2 years since my diagnosis and I have been NED since the first scan they took, which was 6 weeks into treatment. Now I am not saying that I will never reoccur, I am usually more of the glass half empty type of person and kind of expect bad news every time I get scanned but I have been pleasantly surprised. We have to have hope or we'd just as soon give up now. I still believe God has a few miracles that he hands out and if I could live another 20 years, I'd consider that a miracle. ..sherryg683

Oh my God Tricia!! I absolutely positively LOVED reading your story. It makes me want to totally jump for joy and just give you the biggest hug!! Your picture is absolutely beautiful also.

I also love that quote what you included on the bottom of your post. I am going to safe that one.
Well, I think i might want to save your whole post actually.
Lots of love to you,
Maryanne