Finding Little Comfort in the Statistics of Survival

[Cal-Gal]

Amen,
Lets write our own book on stats!!!

[Andrea Barnett Budin]

When I was first dx w/bc I was stunned. Humbled by this looming thing people used to speak of only in whispers as I grew up.

I've since learned that canser isn't our worst enemy. Fear is humanity's greatest foe!

I've also come to realize that courage is not the absence of fear, but moving forward to do what must be done anyway.

Tack on the enlightenment of seeing the joy of being in The Now, in this moment, full of love and gratitude for the beauty and blessings that surrounds us -- you're way ahead of the game. Learning to live, not fearing you're dying, is something not all get to experience. It is a hugely evolved way of being. Full of awesome feelings that feel divine.

I've learned to find serenity along with joy, even in the midst of my horror story. I have found that we each have the power to consciously choose to become The Witness, or The Observer. Most especially at moment when we're embroiled in trauma and drama. It releases us. Seeing from above, we gain a kind of control over ourselves. It is both liberating and empowering.

These Awarenesses are what I wish for you all, with all my heart.

I REFUSE TO ALLOW FEAR-DRIVEN CONCEPTS TO MANIPULATE ME AND PLAY GAMES WITH MY LIFE AND WELL-BEING. (I have that message, blown up in uber large print, by my desk, to look at each day.) We all slip and forget from time to time. We need reminders. YES, I CAN DO THIS! I BELIEVE... is another I have in my face, framed in the kitchen. That and LOVE MUCH.

Andi

[LoisLane]

You are a great bunch of wise women.....thanks for all you give.Lois

[norkdo]

wow. i was looking for a thread like this and here it is. Debbie and Amy esp: thank you.

[norkdo]

http://www.barbaraehrenreich.com/cancerland.htm

some quotes from the above:

note: below are ehrenbach's words not mine folks:

But in the seamless world of breast-cancer culture, where one website links to another -- from personal narratives and grassroots endeavors to the glitzy level of corporate sponsors and celebrity spokespeople -- cheerfulness is more or less mandatory, dissent a kind of treason. Within this tightly knit world, attitudes are subtly adjusted, doubters gently brought back to the fold. In The First Year of the Rest of Your Life, for example, each personal narrative is followed by a study question or tip designed to counter the slightest hint of negativity -- and they are very slight hints indeed, since the collection includes no harridans, whiners, or feminist militants:

Have you given yourself permission to acknowledge you have some anxiety or "blocs" and to ask for help for your emotional well-being?

Is there an area in your life of unresolved internal conflict? Is there an area where you think you might want to do some "healthy mourning"?

Try keeping a list of the things you find "good about today."

As an experiment, I post a statement on the Komen.org message board, under the subject line "angry," briefly listing my own heartfelt complaints about debilitating treatments, recalcitrant insurance companies, environmental carcinogens, and, most daringly, "sappy pink ribbons." I receive a few words of encouragement in my fight with the insurance company, which has taken the position that my biopsy was a kind of optional indulgence, but mostly a chorus of rebukes. "Suzy" writes to say, "I really dislike saying you have a bad attitude towards all of this, but you do, and it's not going to help you in the least." "Mary" is a bit more tolerant, writing, "Barb, at this time in your life, it's so important to put all your energies toward a peaceful, if not happy, existence. Cancer is a rotten thing to have happen and there are no answers for any of us as to why. But to live your life, whether you have one more year or 51, in anger and bitterness is such a waste . . . I hope you can find some peace. You deserve it. We all do. God bless you and keep you in His loving care. Your sister, Mary."

"Kitty," however, thinks I've gone around the bend: "You need to run, not walk, to some counseling . . . Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest."

I do get some reinforcement from "Gerri," who has been through all the treatments and now finds herself in terminal condition: "I am also angry. All the money that is raised, all the smiling faces of survivors who make it sound like it is o.k. to have breast cancer. IT IS NOT O.K.!" But Gerri's message, like the others on the message board, is posted under the mocking heading "What does it mean to be a breast cancer survivor?"




These interventions do not constitute a "cure" or anything close, which is why the death rate from breast cancer has changed very little since the 1930s, when mastectomy was the only treatment available. Chemotherapy, which became a routine part of breast-cancer treatment in the eighties, does not confer anywhere near as decisive an advantage as patients are often led to believe, especially in postmenopausal women like myself -- a two or three percentage point difference in ten year survival rates,1 according to America's best-known breast-cancer surgeon, Dr. Susan Love. I know these bleak facts, or sort of know them, but in the fog of anesthesia that hangs over those first few weeks, I seem to lose my capacity for self-defense.






The ultrafeminine theme of the breast-cancer "marketplace" -- the prominence, for example, of cosmetics and jewelry -- could be understood as a response to the treatments' disastrous effects on one's looks. But the infantilizing trope is a little harder to account for, and teddy bears are not its only manifestation. A tote bag distributed to breast cancer patients by the Libby Ross Foundation (through places such as the Columbia Presbyterian Medical Center) contains, among other items, a tube of Estee Lauder Perfumed Body Crème, a hot-pink satin pillowcase, an audiotape "Meditation to Help You with Chemotherapy," a small tin of peppermint pastilles, a set of three small inexpensive rhinestone bracelets, a pink-striped "journal and sketch book," and -- somewhat jarringly -- a small box of crayons. Marla Willner, one of the founders of the Libby Ross Foundation, told me that the crayons "go with the journal -- for people to express different moods, different thoughts. . ." though she admitted she has never tried to write with crayons herself. Possibly the idea is that regression to a state of childlike dependency puts one in the best frame of mind with which to endure the prolonged and toxic treatments. Or it may be that, in some versions of the prevailing gender ideology, femininity is by its nature incompatible with full adulthood -- a state of arrested development. Certainly men diagnosed with prostate cancer do not receive gifts of Matchbox cars.

[hutchibk]

I love each and every perspective here. I adhere to principles from all. I know Andi and I have shared in the past, as well as Debbie and I have shared in the past... I continue to learn a little every day. And my mantra from the start has been, and continues to be: "I would rather be anecdotally alive than statistically dead." It's what I strive for daily.

[PinkGirl]

My oncologist, your oncologist, Dennis Slamon, Santa Claus, FauxGypsy - no one can tell us if we are going to recur. No one. Stats like 50/50 or 80/20 do not tell us which side we will be in.

I do not make light of anyone's fears. I've been there. I still think that mosquito bites are skin mets. But I've given cancer the finger ... told it to screw off. I will not let fear take over my life. If I recur in 5 years or if I don't recur in 5 years, it doesn't change right NOW.

Every day I see this streetperson guy stumbling down the sidewalk, drunk.
He didn't get cancer, I did. And I don't think this guy is drinking green tea.
I have stopped trying to figure everything out ... I will not drive myself crazy looking for answers that no one has.

Bejuce, if you want to watch your kids grow up, they are growing up right NOW ... we are all doing different things for ourselves ... just do your best.

[Ellie F]

I was recently watching a tv program when a Harvard professor of biology said that human beings were innately programmed to look for answers and explanations for problems.I suspect that when we get ill we look to understand the reason and find a solution. Unfortunately at the moment we don't have those answers for bc even though I wish with all my heart that we did.I suspect that in years to come we will be able to identify a mosaic of causes that differ between individuals.
The most reassuring thing my onc ever said to me was that it is impossible to predict with certainty how the course of any bc will go as every bc is individual and every immune system responds differently. True there are trends and some patterns but as we are not at the stage of personal tumour biology or immune function assessment we are at best in my opinion making guesses about outcomes!
Ellie

[Andrea Barnett Budin]

Oh, Brenda! I WOULD RATHER BE ANECDOTALLY ALIVE THAN STATISITICALLY DEAD. I am officially adopting that line to feed to my brain daily. Thank you! So nice to hear from you again! You have always rocked my world...

[Mtngrl]

@nordko--Thanks for posting Barbara Ehrenreich. She's one of my heroes!

[PinkGirl]

Ellie, I agree that humans are programmed to find answers and
solutions to problems. In our case, I think we're looking for a specific
answer ... we want to be told that we're going to be okay. I think it's more
than wanting to understand our cancers - we want to hear 'good' news.

[Ellie F]

Pink girl,I totally agree! I think uncertainty is very hard to handle especially when it feels like the clock is already ticking. Before bc I only fleetingly thought about my mortality as if it wasn't really going to happen to me (or at least anytime soon!) but since diagnosis that peace of mine no longer exists and learning to live in the now became the new task.
Hugs
Ellie

[norkdo]

pink girl: re
My oncologist, your oncologist, Dennis Slamon, Santa Claus, FauxGypsy - no one can tell us if we are going to recur. No one. Stats like 50/50 or 80/20 do not tell us which side we will be in.

I do not make light of anyone's fears. I've been there. I still think that mosquito bites are skin mets. But I've given cancer the finger ... told it to screw off. I will not let fear take over my life. If I recur in 5 years or if I don't recur in 5 years, it doesn't change right NOW.

Every day I see this streetperson guy stumbling down the sidewalk, drunk.
He didn't get cancer, I did. And I don't think this guy is drinking green tea.
I have stopped trying to figure everything out ... I will not drive myself crazy looking for answers that no one has.

Bejuce, if you want to watch your kids grow up, they are growing up right NOW ... we are all doing different things for ourselves ... just do your best.
you are inside my head!!
omg. i just can't believe reading your message how
another person could possibly, without having read my latest blog,
captured so exquisitely, exactly the feelings i have. it is positively
other worldly to read this note of yours. it is exactly the type of language i used on a recent blog post of mine (dont read it cos i am embarrassed of myself in there) about how no guru, no statistical research, no certainty-clinging of any kind is, first of all, correct (every corpse defies the pollyannas; every woman alive and well with HER2 defies the pessimists like me) and secondly, how lonely is our struggle.
i feel lonely when a woman with HER2 or just a nice friend or nice person, corrects my pessimism. I feel lonely when I am 'forced' to be optimistic cos a friend can't bear to lose me so she makes me consider myself 'normal' in lifespan despite the stats; I feel lonely when the opposite situation comes up too.
Hmmmm...maybe i will start a thread called "I feel lonely, as an HER2 woman when..." I get comfort from reading a brief, succinct post such as the one u just posted, and all the posts in this thread, actually, cos they say what I feel.
How wonderful is the invention of the internet. I do not feel alone when I read things like this.
You have hit the nail on the head.
We are forced into a weird, unwilling kind of heroism, in a way, ...considering we have these grim prognoses, yet are still alive.
what was it Van Morrison sang...No guru, no buddha, no teacher..?

[norkdo]

to all the women who have posted on this thread: a heartfelt thanks.
I have reread this thread six times already...every single post i read twice before the next. i feel like i am in a room with you, and you are beaming that note right at me to save my depressed soul...thank you so very very much.

[norkdo]

by the way under my above post for ehrenbach i think some people thought those were my words.....no...they are the words of writer barbara ehrenbach....i bolded that just now to clarify....

[Andrea Barnett Budin]

From my perspective -- your Soul is never depressed. It is a piece of sacred energy from our Creator. It is divine and full of extraordinary love, wisdom and power.

It is the voice in our heads that makes us feel depressed, angry, wounded, lost and alone.

When we begin to identify ourSelves as a radiant, holy Spirit, we start to see others as kindred Spirits. We respond to others with more compassion, more caring, gentleness and forgiveness. We begin to feel full of joy and awe (finding the sublime in the ordinary). We feel more like our True Selves. We feel elevated. We become our Higher Selves. Full of love and gratitude for the simplest of gifts.

We can walk, and talk, feed and clothe ourselves. Bathe ourselves. Converse with others!! How blessed we are.

And we can consciously choose to fill our thoughts with ideas and mantras, images and passionate desires that evoke happy, serene feelings.

As I become One with All That Is, I align mySelf with my Soul, and see the world through its eyes.

I Know the voice in my head is ego speaking. A primal phase of my beingness. It whines and complains, it criticizes and reprimands, belittles and demands. I consciously choose to reject its whimperings and taunts. I will not allow its voice to be heard over the voice of my Spirit.

And, I've learned all this since my dx in '95. My evolution accelerated in '98 w/my recurrence. It all had to happen, to bring me to where I am today.

I'm just saying...

Maybe my words will help lift up some other Souls on this site. That is my prayer...

Love much,

Andi

[Andrea Barnett Budin]

Are you thinking of:
No Guru, No Method, No Teacher...?

It's the sixteenth album by Northern Irish singer-songwriter Van Morrison (son of Jim), released in 1986 on Mercury.

[Jackie07]

The abstracts below show stable/improvement in all areas of breast cancer survival. (The reason why those 'Textbook' statistics are so scary/depressing is because of the time lag in publication. We used to have a saying in library school that 'anything that's been published is old'. Books - especially textbooks - usually contain dated information. This link in Wikipedia may provide a glimpse of the process: http://en.wikipedia.org/wiki/Publishing )

CA Cancer J Clin. 2011 Oct 3. doi: 10.3322/caac.20134. [Epub ahead of print]
Breast cancer statistics, 2011.
Desantis C, Siegel R, Bandi P, Jemal A.
Source
Epidemiologist, Surveillance Research, American Cancer Society, Atlanta, GA. carol.desantis@<font face="Arial">cancer</font><fon...l">.org</font>.
Abstract
In this article, the American Cancer Society provides an overview of female breast cancer statistics in the United States, including trends in incidence, mortality, survival, and screening. Approximately 230,480 new cases of invasive breast cancer and 39,520 breast cancer deaths are expected to occur among US women in 2011. Breast cancer incidence rates were stable among all racial/ethnic groups from 2004 to 2008. Breast cancer death rates have been declining since the early 1990s for all women except American Indians/Alaska Natives, among whom rates have remained stable. Disparities in breast cancer death rates are evident by state, socioeconomic status, and race/ethnicity. While significant declines in mortality rates were observed for 36 states and the District of Columbia over the past 10 years, rates for 14 states remained level. Analyses by county-level poverty rates showed that the decrease in mortality rates began later and was slower among women residing in poor areas. As a result, the highest breast cancer death rates shifted from the affluent areas to the poor areas in the early 1990s. Screening rates continue to be lower in poor women compared with non-poor women, despite much progress in increasing mammography utilization. In 2008, 51.4% of poor women had undergone a screening mammogram in the past 2 years compared with 72.8% of non-poor women. Encouraging patients aged 40 years and older to have annual mammography and a clinical breast examination is the single most important step that clinicians can take to reduce suffering and death from breast cancer. Clinicians should also ensure that patients at high risk of breast cancer are identified and offered appropriate screening and follow-up. Continued progress in the control of breast cancer will require sustained and increased efforts to provide high-quality screening, diagnosis, and treatment to all segments of the population. CA Cancer J Clin 2011;. © 2011 American Cancer Society.
Copyright © 2011 American Cancer Society, Inc.


Ann Oncol. 2011 Oct 14. [Epub ahead of print]
Long-term (37 years) clinical outcome of older women with early operable primary breast cancer managed in a dedicated clinic.
Syed BM, Johnston SJ, Wong DW, Green AR, Winterbottom L, Kennedy H, Simpson N, Morgan DA, Ellis IO, Cheung KL.
Source
Divisions of Breast Surgery.
Abstract
BACKGROUND:
A dedicated clinic for older women with early primary breast cancer, established in 1973, has recently evolved into a combined surgical/oncology facility. This study aimed to compare the clinical outcome across these periods.
METHODS:
From 1973 to 2010, 1758 women were managed. Analysis was carried out based on retrospective review and continued update of patient records.
RESULTS:
In the recent decade, 56.3% had surgery, followed by primary endocrine therapy (PET; 41.1%) and primary radiotherapy (1.5%). Before 1999, 42.8%, 55.6% and 1% of patients had surgery, PET and primary radiotherapy, respectively. The use of adjuvant endocrine therapy and radiotherapy has increased from 33.6% to 54.9% and 5.8% to 34.6%, respectively. A significant improvement was seen in the annual rates of local (2.2% versus 0.5%, P < 0.001), regional (1.8% versus 0.4%, P < 0.001) and distant (2.9% versus 1.9%, P = 0.002) recurrences. Similarly, the 5-year breast cancer-specific and overall survival rates showed improvement [81% versus 91% (P < 0.001) and 56% versus 71% (P < 0.001), respectively].
CONCLUSIONS:
In the recent decade, while surgery became the predominant treatment, a significant proportion of patients had non-operative therapies, selection of which was based on multidisciplinary assessment in the clinic. This management approach appears to produce excellent clinical outcome, which is significantly better than that in earlier period.

[CarolineC]

I love this site for the thought-provoking and uplifting conversations. I have just been diagnosed with a sternal lesion and in my first post I hope I didn't give the impression that I will back down. In the last 2 years I have done as much as I can to make my body as strong as possible and when I am tired and need direction I ask for and get it. I am not particularly religious (although I do pray to God) as I am spiritual and I know I'm being protected because I am given signs. Keep the faith, as Bonnie says, and just try to do the best you can everyday.
When I get mad or down,I put on my IPOD, go for a walk and play all my inspirational songs, look at the beautiful scenery, and am thankful for every moment. I will also get mad at cancer and that makes me walk with more of a purpose.Sometimes days go all wrong but I feel that we must sometimes go through the bad to get to the good. I have been on Youtube watching music videos lately and like the words in the Keep Your Head Up song by Andy Grammer, 'only rainbows after rain", or Invincible by Hedley (maybe listen to the lyrics version before you watch the one with P. Reign.) The message is abit like Katy Perry's Firework.
This whole journey has not been entirely negative; I have found many great friends and have learned that sometimes you have to take each minute by minute, but you will make it through. I am rolling up my sleeves, so to speak, again.
Caroline

[NEDenise]

Caroline,
Good for you! You sound like you have it all in perspective! Keep it up!
Stay strong!
Denise