Lisey has brought up one of the issues that caused Susan to stop posting to the lower threads. We are not just data points that can tell you what we did wrong to get us to stage IV. None of us did anything to "cause" the metastases that we now have for the rest of our lives. The vast majority of us followed every recommendation made to us. Many of us were not in any high risk categories. We followed good nutrition plans, exercised regularly, were not overweight, had recommended mammograms. We are normal, average people who were stage IV de novo or had a recurrence months or years after treatment for early stage bc even though we followed all the doctors' advice and recommended treatments. If you are looking for answers from the data, I can tell you that researchers have spent years trying to predict who would become one of us or why we are where we are, and they still don't know. If I had to guess, I would say that it has nothing what-so-ever to do with our actions. I believe it is from the characteristics of the cancer cells themselves, the DNA, mutations, and other characteristics not yet identified. There is still much to learn, and some of it will be learned from people like us through initiatives such as the Metastatic Breast Cancer Project where they are studying our individual tumors and how differntly each tumor has reacted to various treatments.

Lisey, you are not being insensitive. I am not hurt or offended my your efforts. I would probably feel like you if I were early stage.You just have never stood in our shoes. You have never been asked what you did wrong to get to stage IV. You have never been told that some bizarre treatment could have prevented it or will cure it. I sincerely hope that you are cured and never get to where we are. I am not trying to be insensitive to you either. I know that all cancer is scary. I know that knowledge is power. Some of us who had early stage disease can offer help to you and others as you suffer through the horror of the diagnosis and the pain and worry of treatments. I know it is not easy, and some of us can offer encouragement. We cannot, however, tell anyone how to prevent going to stage IV because we just don't know.

Just wanted to put in my two cents as an early stage person.

We are a community.

IRL people with mets are not excluded from interacting with early stage people, and I don't think it should be the case here.

Admittedly you may get uninformed questions, but in the end people with early stage should at least know what MBC is and that people are living with it. I really had no idea how breast cancer worked until I had it, and it was only by reading this site that I understood the whole picture.

None of you are "our worst nightmare." Even with an early stage diagnosis we wonder how we would cope if we were in your shoes.

If someone early stage has a question about something you know, such as herceptin, or radiation, or a certain surgery I would chime in, if you have the desire. On the lymphedema forum all stages interact.

I miss the old days when we all interacted to support each other, however I understand why the rules were made, and I respect them.

(except for this post I guess)

Hi Lisey,

Make me a data point, please!

My long and unusual course with breast cancer puts me on the far end of outlier and I won't often write of all my cancer mis-adventures here, because I don't think they'd benefit anyone else. I'm uncertain how they've benefited me sometimes!

The sayings that come to mind are "the plural of anecdotes is not data" and "correlation does not equal causation".

It can be fun to think about which things influence both quality and quantity of life, but I'm pretty sure they're immeasurable.

Kelly Turner tried in Radical Remission and I don't think she transitioned from anecdote to data. And why isn't exercise one of the key factors of radical remission? You might enjoy the great bco conversation at https://community.breastcancer.org/forum/79/topics...

I wrote about another project similar to yours being done by Gwen Stritter, MD at this bco conversation https://community.breastcancer.org/forum/8/topics/...

Good wishes with your research, Lisey, Stephanie

PS, if you discover the fountain of youth and longevity, be sure to get back to us before you patent it for profit - you are crunching our data you know.

HI Lisey,

I say I have advanced breast cancer, not Stage IV and the exact date I went metastatic is equivocal.

The difference between staging, stage IV and mets is a whole different bco conversation:

Stage I even though I've recurred?

https://community.breastcancer.org/forum/8/topics/...

Liesey, it sounds like you read this news story?

One-fifth of genomics papers flawed due to Microsoft Excel

http://www.bionews.org.uk/page.asp?obj_id=695210&P...

warm hug from one cancer geek to another, Stephanie

Hi Lisey,

I'm wondering if we should take this conversation to another bco forum, but can't think where it belongs. This forum is for stage IV and mets only and this particular topic is about MBC folks welcoming those with early stage disease to their designated forums.

I post news & research in the bco forum of that name, but would treasure a breast cancer geek topic where we can meet without taking other topics off-topic.

I usually get my cancer geek itch scratched at www.smartpatients.org where I post cancer news and crossing disease boundaries. Really great feedback, friends and conversation, but the SP breast cancer and MBC tags are relatively weak compared to bco's options.

What's us gals to do?

Anyone here have any good pointers to get us to the best bco forum/topic for a bit of medical and scientific chatting and exploration?

And yes, re. this forum's permeability - sometimes I keep count of the number of views at the Dying and Death thread and the number of views far exceeds the number of posts - so earlier stage members are silently listening in, but respecting the request to not respond. Makes for odd etiquette.

TIA for tips, friends, Stephanie

I was only a few posts into this thread when I started thinking that we could ask early-stage people to say how they feel about being welcomed by a stage iv person. It would be easy enough to start such a thread in a different forum, where all stages post.

If I correctly understand Amy, the OP, she was thinking about whether such a welcome would be supportive, or too scary, and how other stage iv people see their role in this.

So I used to go to a stage iv support group, all kinds of cancer, men and women. But then the psychologist (!) in charge decided to shuffle the early stage and stage iv groups into two mixed groups. I found myself (fairly recently diagnosed with mets) sitting there for most of the meeting answering questions, listening, comforting, and supporting someone with stage 0. Which if you think about it is a little bizarre. But of course she was new and scared. I had been in a similar position three years earlier when I was stage 1, so I could understand where she was coming from, and I was happy to offer her encouragement and provide her with knowledge I had. I mean, her fear and bewilderment were real and she needed support. So at least in this experience, my stage iv status didn't seem to prevent my being helpful to her. However, she had very little to offer me, either emotionally or practically. And I thought, if there is any time in my life when I can be excused for being "selfish" this is it. I really needed to leave that group and be with other stage iv people. So I am glad we have a dedicated stage iv forum.

On the other hand, some topics lend themselves well to mixed groups, such as a discussion of how to deal with drug side effects or how adorable cats are. I like having friends from all stages!

I don't think it's a matter of "scaring" lower stages! I've met the greatest gals who are stage IV on different threads like games and diet/exercise, etc. I don't think people come to bco to be "greeted", but to either lurk or ask questions when they are ready.

I agree!!!! Saint and Faith&50 were different stages as was Yan and most of us! When Yan's wife died I went and sat shiva with him. Every time I hear the name Heidi I remember her brother's post when she died - can you hear the clapping Heidi? I woke my husband up when Tink died and he thought it was one of our kids cause I was crying so hard. A stage IV from New Zealand visited me when she was passing through Canada and her husband fell asleep in a chair after lunch while we talked and talked.

That's when there were almost 20,000 of us here and now there are snotty cliques - my cancer is worse than your cancer!!

It's lost a lot of the point and it's not just the greeting it's the attitude of seclusion like a gated community for "special " stage IVs. For a stage 0 there is the same fear as a stage 4. Your name and cancer are in the same sentence!!!! If you don't believe me then don't connect with them. They don't need platitudes they need info.

And yes. I said the same fear. The fear of dying. Don't condescend and tell them not to worry. Their fear is just as real as anyone else's and that's what some people forget.