Why do people die of this? Flipping out a little here
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At our first meeting with an oncon, he said, "this is a renagade, everything about it is bad, except that it is confined to the breast. We are going to throw a bomb at you. I am talking cure here, not control."
I signed up for the bomb and 1 1/2 yrs later, after all my treatment was over (except tamoxifen/aromasin) I was told that I had a 50% chance of recurrance "either it comes back or it doesn't". Another doc told me that there are cures, but the only way they know if a bc pt is cured is if they die of something else. Comments like those have forced me to become my own advocate and research, research, research.
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Maybe it's sometimes denial, or what the outcome has been for people we know. When my dad was diagnosed with prostate cancer 8 years ago I really believed that very few - if any - men died of it. It's what I needed to believe, and, I didn't know anyone who had died of it! When I was diagnosed with BC, I felt - OMG I am going to die. I know several women who have died of it, including a best friend. Also, my family dr. had told me once that if you were diagnosed premenopausal, it was game over - and guess what! But the mortality rate for prostate and BC are very similar. The uncertainty is very hard to live with, especially since it goes on soooo long with BC.
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I have completed chemo and radiation. I had a PET scan before treatment and they found 2 "hot" areas -- one around where the lump was removed (that was expected) and the 2nd was my left thyroid gland. I had an ultrasound done of the thyroid gland and they found a 2+ cm nodule. Both my onco and rad onco said that sometimes things show hot even when they are not malignant. I then went to an ENT he biopsied it ... it came back benign but I had it removed anyway. The final pathology test results found no cancer .... I KISSED MY ENT
(in front of my husband ... on my doc's cheek) !!! For 2 weeks I wondered about the question of am I going to have to have yet another treatment. I finally had some good news!!!!!!Since I am a Hospice Chaplain ... I know too well what can happen. I became a Chaplain 1 1/2 years ago and it is the "love" of my life (besideds God and my husband). I can now do more than sympathize with my patients ... I can now empathize with them. God has given me a gift to look into their eyes and to see their heart and what a joy it is when they find their peace. Peace does not mean to give up ... it means to accept and rest in God's reassurance that He is in control. I will fight my cancer but I REFUSE to let it have my peace.
I know that everyone who finds out that they have cancer are scared (for some after the denial phase). For myself I wondered why am I so scared. Many of my pts say it is not death that scares them .... it is the dying process. I feel that too. And, most of all, I want to be here as long as I can to pass on to my grandchildren a legacy of faith. My pts do not want to "leave" their families either. So, somewhere in all this, I feel that I must find my peace and do everything that I can while I am here to show my unconditional love to my loved ones and friends. Who knows .... I could die from an accident tonight .... and it is my prayer that my family knows that I love them and that I love God.
I pray for you all each night ... I do not know you ... but I know your pain because I know mine ... and it hurts to the core of my soul. And, for that I am thankful because I am able to love that deeply ... kiss your husband, your kids, your grandkids ... tell them you love them ... tonight and every day.
Blessings,
Kay
Phillipians 3:
12 Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me.
13 Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead,
14 I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.
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It's all very much a crapshoot (or up to a Higher Power, depending on your outlook). There are women who were diagnosed with Stage 1, no nodes, and go on to get mets; and there are women with huge Stage III tumors and bookoo nodes who live long and otherwise healthy lives. It's a shap croot
; BC and life offer no guarantees and no warranties. Besides, life is a terminal condition, 100% eventually die of it.Treya Wilber, who died of BC, said "Every moment I worry about dying is a waste of time I could spend living". It's devastating to be handed a BC diagnosis - been there, done that, got the pink ribbon. But, a little over a year out, I feel strong and confident. I don't really think about it coming back - and if worst comes to worst, I'll deal. It won't be any fun, but I'll deal. Fretting and worrying isn't going to work some magic spell to keep the cancer from coming back.
Taking concrete steps to focus your energy elsewhere might help. It helped me A LOT to have the support of my friends. I am also working and in a MA program so all my energy is going there and not worrying about the C! I saw a counselor and got medication. I have the world's best cat. I'm spiritual (not religious). All these things have helped me.
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I forgot to mention that as a Chaplain my function is not to push Christianity on those who do not believe the same way I do. My function is to minister to a person wherever they are in their spirituality. On this board, I am expressing my personal feelings.
CrystalCat is right -- stay busy with things that matter to you. I have a shih-tzu that I was given after I was diagnosed. I love that puppy! He is a source of much joy to me and often keeps me occupied! He loves me no matter what! And is always ready to play! Pets are great!
Blessings,
Kay
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I believe that one day we will know if we are cured or not. But because there are so many elements to this disease and they are finding so many more subgroups of subgroups, it's very complicated.
My good friend died recently of triple negative bc. Her tumor was smaller than mine. She had no node involvement, she was diagnosed at age 50..she wasn't supposed to die. She did have the BRACA gene. And probably, she had other elements that they are still doing research on. My onc reminded me that we were not biologically the same and the stats say that most women with bc will survive.
Crapshoot...today it's a crapshoot because of the lack of information. One day it will no longer be that....
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Hi,
I am triple negative, grade 3, with lymphatic invasion.I start chemo on 8-13. My surgeon and onc said I am not going to die. Now I am starting to get a little scared. I have a great attitude and just want to get going. I guess we never know what is going to happen in life. Is it normal to be getting scared?
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Hell ya it's normal to be scared. Chemo does effectively kill cancer cells.
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Being scared is one way of knowing we are still alive!
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ORTechie,
Of course its scary. You are getting ready to fight the beast, as we call it here. You have great weapons in your arsenal, but chemo is no easy thing. Keep your eyes on the prize, or the horizon line, looking ahead to the day when you'll be done with treatment and back to (somewhat) taking things for granted. In the meantime, come back here to get the support and encouragement that you need to make it through! There's no better support group-- we know how it feels and have been there ourselves, in some cases, more than once!
Hugs,
Susan
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Ortechie, of course you are scared. There are words in life that are very scary, one of them is cancer. You are in a good place with your diagnosis. Stay positive, take it one day at a time and soon you will be in a better place. Stay well, Mary
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I'm sorry if I am offending anyone here, but describing our chances of dying of BC as a "crapshoot" is not useful.
I understand why it's tempting to call this a "crapshoot". Sometimes it seems as if, no matter how small or innocent-looking a tumor is, or how aggressively it is attacked, it grows and spreads and kills. OTOH, someone else may have a large, seemingly aggressive tumor that ends up responding immediately to treatment and never returning.
However, calling it a "crapshoot" suggests that the likelihood of recurrence is completely out of our control. Ironically, most of the time when the word "crapshoot" is used in the context of BC risk, there's an implication of 50:50 odds (i.e., "the flip of a coin"). Even in the game of craps (see http://en.wikipedia.org/wiki/Craps), the odds of any particular outcome are predictable, and most of the time they aren't 50:50. For example, a player who wants the dice to come up with an outcome of "12" knows that the odds of rolling a "12" are 1 in 36 (that is, 1/6 x 1/6). He/she can't control how the dice land, but the chances of a particular set of numbers coming up can be predicted.
Just as in the game of craps, the probability (likelihood) of a particular outcome with BC can be calculated. That doesn't mean a specific outcome can be assured--it just means the chances of that outcome occurring can be calculated. Unlike in the game of craps, though, there are things we can do (choices we can make) that will make the odds more favorable . . . or less favorable, depending on what we decide.
For example: according to the calculator at Adjuvant!Online, a 55-year-old woman with a node-negative, ER+ tumor that is less than 1.0 cm in diameter, has an 18% chance that her tumor will recur in the next 10 years, if she chooses to have no other treatments besides surgery. Her chances of dying of BC in 10 years, given those characteristics, is 3%.
If the woman with that same tumor agrees to take Tamoxifen for 5 years after her surgery, her 10-year risk of tumor recurrence drops to 11%. If she is post-menopausal and can go on an Aromatase Inhibitor (AI) instead of Tamoxifen, that 18% chance of the tumor recurring in the 10 years after surgery drops to just 8%.
So, while it is not our fault that we got BC, it isn't fair or honest to suggest that we are powerless to reduce our risk of recurrence (i.e., to call it a "crapshoot"). Some women may find comfort in the thought that they have no control over what happens, or that a higher power holds all the cards (so to speak). Other women can sleep more easily if they know they have made choices that will reduce their risk of recurrence of their tumor.
Of course, even if we make "good" choices, there is no guarantee that a tumor won't recur, or that metastases won't develop. We simply can't control everything having to do with the behavior of BC cells. However, because we can make decisions that move the odds more in our favor, it's far from a crapshoot.
otter
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Yes, the outcome *in a certain population* can be calculated, assuming we know enough about the group.
I do not know whether recurrence is similar to the models that predict who will get breast cancer.
But there is a lot of uncertainty in the main model we have for breast cancer risk (i.e. the Gail model, or other models that include in addition factors like breast density), about the prediction value *for a particular individual*. In this 2006 academic journal editorial, they stated, 'For any given woman, the two models predict better than a coin toss-but not by much.' That is because we don't know a factor that strongly predicts breast cancer (with the possible exception of BRCA.)
They compared the Gail model with another breast cancer prediction model that included other risk factors like breast density. The models were quite accurate in predicting how many women out of the population (in this case in the city of Florence, Italy) got breast cancer.
However, when they took 2 randomly selected women, one with breast cancer, and the other without breast cancer, and looked at their model scores, the women with breast cancer got a higher value than the woman without breast cancer 59% of the time. But 41% of the time, the woman *without* breast cancer got a higher score than the woman *with breast cancer*. (This is called a concordance value.) Now, this is about at the limits of my knowledge of statistics.
Now, I don't know if they have done similar studies with recurrence, because I don't know much about recurrence. I won't bet my last dollar that they don't know, but I would be surprised if their prediction models are any better at these concordance values than these Gail and Italian models.
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Leaf,
I agree that the models used to predict the initial occurrence of BC (e.g., the Gail model and its progeny) aren't very accurate. One reason why I hold that opinion is because, 9 months ago, my own calculated risk of developing BC in the next 5 years was only slightly higher than the risk for an "average" woman. Guess what happened this past January?
That's one problem with a free-for-all discussion about risk and predictors and statistics. Few people accept and understand risk calculations when it's obvious that they fall in the minority group. The fact that I developed BC when I had a 98% probability of NOT developing it, makes me doubt the reliability of the predictor. I know that's not a valid conclusion, but I "feel" that way, nevertheless. (Please keep in mind that I'm not suggesting your criticism of the Gail model is based on your own personal numbers. I know you are citing published evidence of its weaknesses.)
Anyway, and this is sort of ironic: you've made my point. My main argument (weak as it was) was that the probability of BC recurring should not be called a "crapshoot". I did say that the likelihood of recurrence of BC could be calculated, just as the odds of a particular roll of the dice in the game of craps could be calculated. You are correct in suggesting that the methods to calculate risk of BC recurrence may be as flawed as those used to calculate the risk of BC developing in the first place.
My second point, though, was to note that, unlike a "crapshoot", we can make decisions and take actions that will modify our risk of BC recurrence. Some of those actions include undergoing radiation therapy after a lumpectomy; being treated with adjuvant chemotherapy (if applicable); completing a 1-year regimen of Herceptin (if HER2+); or taking tamoxifen or an aromatase inhibitor for 5 years (if ER+). I am not even considering other possible modifers, such as weight loss or dietary changes or alcohol consumption, which are more controversial.
Here's the irony: the Gail model, which is used to calculate our initial risk of developing BC, employs non-modifiable risk factors. This website contains a BC risk calculator based on the 1999 Gail model: http://medcalc3000.com/Gail99.htm
In other words, we can't do anything to change the variables that enter into our BC risk calculation with the Gail formula. The only variable in the Gail formula over which we have any control is the age at which we give birth to a child. So, yes, according to the factors used in the Gail model, the probability that we will, or will not, develop BC initially, is literally comparable to a "crapshoot".
otter
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Adding to the discussion, I would argue that determining the probability of recurrence is quite different than determining the probability of getting BC in the first place. There are so many known risk factors for breast cancer - probably hundreds. Some we can change (diet, some environmental factors), some we can't (genetics, other environmental factors). The problem is that we don't know which risk factors are significant for any one individual. A risk factor that is a major trigger point for one woman might not have any effect on another woman. This is why some women with no significant risk factors who do everything right are diagnosed with BC while other women with many risk factors who don't take care of themselves at all, don't get BC. It's not random but we just don't know yet how each woman is affected by each risk factor. And, just to add to the confusion (and lack of predictability), we have BC risk calculation models that only consider a small handful of the known risk factors.
Recurrence, I think, is a completely different ball game. As MarieKelly has pointed out, we know more and more about the biology of breast cancer, and with that, we are learning more and more about what specific factors increase or decrease the risk of recurrence for any one individual. Twenty years ago all women with Stage I BC who had a lumpectomy with radiation might have been told that their risk of recurrence was 12%. Today, doctors can analyse our cancers (size of tumor, grade of tumor, ER, PR, HER2 status), look at our margins (1mm vs. 10mm, for example), use an oncotype test, etc. etc. and tell one woman with Stage I BC that her recurrence risk is 18% and tell another woman with Stage I BC that her recurrence risk is 7%. And then, to otter's point, each individual woman can choose to add other treatments - chemo and hormone therapy drugs, for example, to lower her recurrence risk. (By the way, don't hold me to the 20 years or the numbers in my example; it is just an example.)
Ultimately, do any of us know if we will have a recurrence? No. But what science has been able to do is divide us into smaller and smaller groups, with more and more precision as to our risk. And this will only get better with time. So after diagnosis and treatment, rather than being told that you are one of 80,000 women diagnosed that year in the U.S. who has a 12% chance of recurrence (9,600 of these women will have a recurrence; 70,400 won't), with consideration to the specifics of your cancer and your treatment, you may be told that you are one in 5,000 women who has an 6% chance of recurrence (300 will have a recurrence; 4,700 won't). You still don't know which group you'll be in (hence the "crapshoot" element, for those who like to use that word), but the odds are being narrowed down.
One last comment. I think that so many women consider recurrence risk to be "crapshoot" because we do hear on these boards from women who had low risk but then had a recurrence. What we have to remember is that even if there is only a 1% chance of recurrence (after a mastectomy for DCIS or low grade Stage 1 BC, for example), it still means that 1 woman in 100 will have a recurrence, 10 women in 1000 will, 100 women in 10,000 will etc.. So with the number of members of this board, it's not surprising that we meet some of these women. But being that 1 woman in 100 doesn't mean that the odds (or in this case, the recurrence risk model) were wrong. It simply means that you were the unlucky 1 person.
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Added to this conversation of it being a "crap shoot", are the lovely things called genetics. Sorry gang, but my genetics suck. I was diagnosed, a second time, with a new primary, 369 days after my first diagnosis. 7 1/2 months after I ended chemo. Does chemo kill all cancer cells? In my case, who knows?? Was the second cancer lurking somewhere, and the chemo kept it from growing? Again, who knows??
Being BRCA 2+, my genes are firing at will and I am doing all I can to stay alive. I had a hyster/ooph in June to try and keep one step ahead of lil Ms C.
So...all the statistics, all the written words, all the clinical trials don't mean very much to me. I am an individual, my body is different than anyone elses, and my genetics are warped. I can either live in fear that I will get another diagnosis, or I can live each day like it's the last. I choose to seek life and all the gifts that it's brought, and continues to bring. All in all...cancer just sucks...period!!
Linda
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I still think it is a crapshoot as to which side of the stats you end up on. And when I say 'crapshoot' I mean that we still don't know enough to accurately state where an individual will end up.
There are a lot of extremely fit people who do all the 'right' things that end up recurring. There are so many variables that we aren't even aware of yet that have to be factored in. For me, genetics will dictate more than we know.
However, I do believe that I can control some of the things that we do know can statistically make a difference. As you say, what treatment we choose to do, exercise, diet, lifestyle etc. But I do not kid myself that this will be enough to survive bc without any recurrances or mets. My fingers are still crossed, and to me, that is a crapshoot.
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Seems to me it is the women who were fortunate enough to be diagnosed stage I who see more certainty in the outcome. Those are the ones who say outcome can be predicted and that the patient can decide to pursue the treatments that will give her a "cure."
That may be true for stage I folks. I think it is rational for them to be considered cured. And women with DCIS (which I think is what Christina Applegate had) are cured, if it is truly DCIS.
But for the rest of us, there is noting close to certainty. I did everything possible -- chemo, rads, tamox and eventually an AI. I exercise for 90 minutes a day. I choose to believe I will live a long life. But I have absolutely no certainty on that. I will be at risk for a recurrence for the rest of my life. Thats not a new cancer, but a recurrence of the old one. And it won't be because I somehow didn't make the right choices.
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Thinking about it, I call it a "crap shoot" because some of us will be lucky no matter what, and others will be on the wrong side of the statistics no matter what. There is a lot we can do - chemo, rads, Tamoxifen and AIs (if we are hormone positive) and Herceptin (for the HER2+ people).
Just speaking as someone who was on the wrong side of the odds herself (at 43 and no genetic risk factors, I had a 1 in 229 risk of getting BC), but found herself to be that poor schmoe who was the one in 229, while I do my best to keep a positive attitude, and I don't think about cancer every day, I know there are no guarantees. Yes, I'm one of those "lucky" people (a quote from one of the BC nurses at my hospital) who has ER/PR+ BC for which I can take Tamoxifen. And I'm lucky to be Grade II and not III. Onc told me that I have about a 90% chance of dropping dead from something not cancer. But that's no guarantee that I won't be on the wrong side of luck again. Meanwhile, some woman who is Stage III, Grade III triple-negative with lots of positive nodes might live a long and happy NED life post treatment.
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Thank you for all of your comments here. I watched two women with b/c: my mom, took hormone therapy only and survived b/c. She passed from COPD in 2005. She didn't take good care of herself....not much anyway. Then my ex-mother in law. She took extremely good care of herself, exercised, never drank, never smoked, nothing. She was the picture of health and all her brothers have lived to be in their 80s and 90s. She got b/c and had a mastectomy (about 30+ years ago). She was almost at her 5 year mark and developed liver cancer. They said the two were not linked, that this was a different kind of cancer. So I see what you are all saying about a crapshoot.
It just struck me that with the latest technology and treatment, they should be able to beat this thing. That's why I posted this in the first place.
Even though I got benign results from my two biopsies, do I feel out of the woods? No. I wish I could and just forget about it....but they want to see me in 3 months. I guess I should be thankful to be hooked up with a proactive b/c clinic that wants to stay on top of things. I was also scared because I had gone 4 years without a mammo. I didn't do it on purpose really...although I hate tests and the wait of any kind. Hate going to the Dr. period. But I cared for my mom the last two years of her life - sole caregiver - plus worked fulltime and have a young child (sandwich generation they call us). I lost track of time and thought I was one year overdue, and I hadn't been checked since 2004!!! This clinic isn't going to let me do that.
The Dr told me he wants to see me in 3 months....and they didn't wait for me to make the appointment even! I kept thinking I need to get this appt made, and I got this letter over the weekend with the time and date. They already set up mammo and ultrasounds. Rather than worry though, I will choose to be thankful that this clinic is so on top of things.
Thank you for all of your comments. Such a great group of people here.
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ps....I have another friend who was diagnosed 10 years ago. She is doing well, and has had 2 biopsies since that time, both benign. She said she just read an article the other day that said b/c is going to be so common in the near future that treatment and survival is going to be excellent. I don't remember the specifics of the study she read, but it sounded all positive.
Just thought I'd add that to this post. Thank you all again.
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Hi, everyone. If you go to the John Hopkins web site, Ask the Expert, you will see that in her Q and A session, she answers that she feels "confidently" that breast cancer will be prevented or cured when and if her daughter has to address it I figure her daughter to be about 28, the expert had cancer at 38, so not so far off. Also read that it is a chronic condition and when a disease becomes treatable and chronic, it is a prelude to cure. That is what has happened with diseases like polio, etc. Hang in. Maryix
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