The scary stuff!!!

[cafe1084]

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!

[dlaxague]

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 There are some stats but because of what they are looking at (very long term effects), they are even more outdated (for those being treated today) than the survival-from-cancer ones are.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

[dlaxague]

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

[chrisy]

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?

[AlaskaAngel]

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

[AlaskaAngel]

http://www.medicalnewstoday.com/articles/116735.php

[PinkGirl]

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????

[Patb]

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