The scary stuff!!! - Page 2

KellyA · 07-31-2008, 06:22 PM

Hi everyone!

I agree with Becky. I think that most people DO NOT reoccur if they are treated aggressively, and use every available tool they can. I don't know if I will fall in with those that do or don't. I cannot tell you how many people approached me and shared wonderful stories of people they know and family members that survived breast cancer and lived to be 70, 80, or more.

I have to admit that I worry often (even though I try not to) about a reccurence, and even wonder if I will see my children grow up. But as sad and sometimes depressed as I may get on a down day, I would not be able to go through life with a positive attitude or with hope for myself, my children or even in general if I had already made up my mind that I would reoccur.

I choose to believe (and hope) that I won't. I will deal with the negative later only if I have to.

Love, Kelly

Gerri · 07-31-2008, 08:36 PM

My mother-in-law was dx'd over 15 years ago. Her tumor was 2cm. She had a masectomy and radiation, no chemo or anti-hormonals. She is cancer free to this day.

A very good friend was dx'd in 2003, probably stage 3C. She had several tumors, the largest was 7cm, vascular invasion and positive nodes. She had a bi-lateral mastectomy, chemo, and radiation. She has been on Femara the entire time. Her onc gave her 6 months to live - it will be 5 years this September. She has not had a recurrence.

I wouldn't say that I am worried about recurrence, but I am enough of a realist to know it is a possibility. Having said that I also believe that the treatment we are recieving now will prove to change those statistics for the better. WE are the new stats that will give hope to others in the years to come.

cafe1084 · 08-02-2008, 01:17 AM

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 · 08-02-2008, 07:09 AM

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 · 08-02-2008, 07:24 AM

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 · 08-02-2008, 10:15 AM

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?

PinkGirl · 08-02-2008, 11:05 AM

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????

Jackie07 · 07-31-2008, 05:52 PM

'Love keeps us together...'

Bill · 07-31-2008, 06:22 PM

Hello, Ladies! I've got an aunt, dx'ed with BC in the early 70's. We correspond almost everyday. A good family friend in AZ, the same thing. Cancer does NOT always reoccur. There are a few things to consider here. One major mind-set that we need to overcome- "what has happened in the past does not control what will happen in the future". Like VI and others have said, there is always something new in the works. Please think back to that first moment when you first heard about Herceptin and the fast-track FDA approval. For most of us, it was out-of-the-blue on the news, right? Right now, everybody take a few deep breaths, close your eyes, and try to picture what will be on the news on October 14th. We can't. (well, I can, but you can't, anyhow...) There are so many advances in science and medical technologies coming our way at an ever-increasing rate. While we sleep comfortably in our beds tonight, there are countless people studying and working on our behalf. A statistic is written in stone. Kick that stone aside, and by whatever means necessary, write your own future.

07-31-2008, 06:49 PM

It is definitely true that most women diagnosed with early breast cancer do not ever recur. For example, my Mom was diagnosed almost 18 years ago, and is fine.

On the other hand, women with stage 4 breast cancer, such as myself, by definition already have metastases. While I very much wish that Becky were correct that only 50% of women with stage 4 breast cancer recur, that simply is not true. (Maybe she means stage 3??) Almost all women with stage 4 disease eventually recur. That is why it is considered to be treatable not curable.

When the NY Times described Elizabeth Edwards' mets diagnosis it stated,
"According to statistics from the American Cancer Society, only 26.1 percent of patients with Stage 4 breast cancer live five years or more, but those figures are by nature outdated and do not reflect recent medical advances." (Keep in mind that these stats are for survival at 5 years and not for recurrance over a lifetime.) I hope and believe that the stats are better now, but, unfortunately, they are not close to 50% survival for metastatic breast cancer. I don't mean to be negative. I just want to correct the misinformation that was posted.

madubois63 · 07-31-2008, 07:17 PM

Don't get me wrong...I plan on being a very old lady with lots of grand kids! No matter that I was originally diagnosed stage IV, reoccurred 3 times with bc, got leukemia from chemo, had liver failure and then extreme iron overload (there's more, but that's just minor stuff). I live day to day for each new treatment that will get me to next mishap...I do not believe in statistics! I write my own statistics and story...

Mary Jo · 07-31-2008, 08:19 PM

Hi everyone,

I can't believe I missed this thread. When I read the remark made about a recurrence happening to all of us at some point, it left me a little unsettled I must admit. I waited for someone to add their comments to this but none came. I'm happy you brought it up for discussion pinkgirl.

I liked reading everyone's comments and like many of you have stated I choose to live my life in the now. Taking the best care of myself that I can and enjoying each breath God gives me.

Whether I ever have a recurrence or not isn't something I can think about often as it would suck the life right out of me. What will happen will happen and I will cross that bridge when I get to it.

Very interesting discussion and thank you pinkgirl for addressing it for all of us.

Holding all my "sisters" and "brothers" close in prayer and asking for God's Peace to surround each of us as we travel onward..............

Mary Jo

Becky · 07-31-2008, 08:23 PM

Hi Unregistered

Your figures may be true for Stage 4 women who became Stage 4 - like your example of Elizabeth Edwards - she was not diagnosed Stage 4 but at Stage 3. She was treated with surgery, chemo and radiation and then recurred. These women will not be cured but may be NED for years without recurrence (and, as you said - they may never recur).

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.

dlaxague · 08-05-2008, 07:33 AM

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

TriciaK · 08-05-2008, 12:18 PM

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

mts · 08-05-2008, 12:44 PM

Tricia-

YOU are ONE savvy chic !

Maria

sassy · 07-31-2008, 08:44 PM

One reason I no longer visit other sites is that discussions often become attacks, which serves no purpose. Here we have discussions that benefit us all.

I'm not a "stick my head in the sand person" at all. I have the possibility to recurr, just as we all do. But I do not believe recurrance is inevitable. Even in my small community, there are several ladies who were dx'd over 20 years ago and have not recurred. Many told me of their disease after my dx. I did not know they had had BC because it was prior to my move here 27 years ago.

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.

For those of us who were dx'd early stage, Herceptin has changed the stats significantly favorably. And if I'm not mistaken, the longest term stats available could only be for about seven years (since the initialization of the HERA trial). We are in a category that does not have historical statistical data.

Do any of us look at traffic death statistics and refuse to travel in a car? Probably not. But hopefully we look at the contributing factors to traffic deaths and take steps to increase our odds of survival, ie wearing seatbelts, not talking on cell phones when driving, etc. We should look at recurrance stats the same way and take those steps that we can to increase our odds of survival, ie treatments, lifestyle, diet.

Cancer is a part of our lives--otherwise we wouldn't be here. But it should ONLY be a part--not the whole.

Enjoy life.

Bill · 07-31-2008, 08:20 PM

Exactly, Madame Dubois! Statistics are accumulated and analyzed data from the past. By definition, it is impossible to analyze and interpret data from the future, because it hasn't happened. All of our knowledge, as a species, is ever-increasing, and we all have so much control over our own lives, to make beneficial changes through diet, exercise, prayer, positive thinking, etc., that we should be encouraged by the future.

hutchibk · 07-31-2008, 09:40 PM

All I know is that stage IV doesn't worry me... as I am convinced that I have more than 9 lives and there are at least 50 stages. That's what gets me through the day!

PinkGirl · 08-01-2008, 06:46 AM

I think one of the things that has affected my thinking on this is that when I hear the nice high numbers of survival, they always say ..... this many people are living beyond 5 years.

I can't really get excited about 5 years. I'm already at 3 years.
I know that I am not a stat but why do they keep talking about
5 years?

As far as me not knowing any long term survivors, I guess that
spray cheese is not the only thing missing in my little town