Friday, September 20, 2013


I have better things to do with my time than get riled up but if we, as advocates, don't take the opportunity to speak out, we are not being very effective and we are allowing the myths to perpetrate.  I SWORE, I promised myself, this year, my October campaign would be my own brand of awareness.  I don't care about ribbons.  I don't care about pink.  Love it, hate it... it makes NO difference.  I don't care about war metaphors.  Love 'em, hate 'em... again, it makes no difference.  Pink products?  If the products are being sold with transparency and you are comfortable with the company whose products you purchase (and you are also fully aware of who is benefitting from the donation), again... it makes no difference.

Yes, I have plenty of opinions, but they are just that.  Opinions.  My feelings.  My feelings aren't more right than anyone else's.

I've come to embrace my own words.

There's no right way to do cancer.  There's only the way that works best for each of us.

We may not all agree on the choices of others, but that doesn't give us the right to sit in judgement.  What happens when we do this?  We divide a community.  We get nowhere fast.  It's time to realize, together we are stronger.  We, and by we I mean those of us in the breast cancer community, are already looked upon as the fair haired children in Cancerland.

If I am to be totally honest, this hurts me.  "So much money goes to breast cancer." "More women die of other diseases." "Breast cancer gets all the attention."  ALL of this is true.  But let's stop right there.

The very bottom line in cancer, all cancer, across all types, is DEATH.  And this is why it hurts to hear those words.  To listen to those statements.  Is breast cancer really getting money to prevent death from the disease?  Are those living with metastatic disease getting all the attention?  No... and No.

Yesterday morning, someone sent me what I initially thought was an irresponsible headline.  Turns out, it wasn't just the headline.  It was an entire piece of journalism that was filled with untruths.  In about ten minutes, I "scooped" the piece. Not important to understand what that means, but here's the link if it matters and you must understand what it means to "Scoop It."

The title of the article?  Don't Be Afraid-Breast Cancer Is Curable.  YES, that appeared in the Just 4 Women section of TBN Weekly e-edition.  After I read the thing, and I got my blood pressure back from "you are going to have a stroke level," I began to write.  What appears in bold is verbatim from the article.  My comments follow each item I found to be a problem.

Unfortunately, the entire article save a paragraph or two was replete with half-truths, mistruths or long proven otherwise information.  The fact that Cliff Leaf sent this tweet, lets me know I wasn't so far off base with my observations.  Yes, I'm name dropping (and those who know me well enough, know I'm NOT a name dropper... I really don't like that but.......) It's validating to know that someone who did such extensive research on his stellar book, The Truth In Small Doses, thinks enough of my observations to take a moment from his life to encourage me with a vote of confidence.


Again.. this is from my little newspaper.  From the article... In Bold.  The rest... Me.

     "Not only is the headline the most irresponsible thing I've ever read, the CONTENT of the article follows suite.  We don't use the word "curable" in the world of breast cancer advocacy.  Those of us with close ties to the metastatic community are acutely aware that 30% of us, with early stage disease, will go on to develop distant, FATAL recurrences.  I don't know if something was lost in translation between the doctor and the author of the article, but the whole thing is extremely troubling.

The most egregious of a very poor piece of journalism:

We’ve come a long way in the fight against breast cancer, and additional progress is made each year to better understand the enemy.
(ME.. no, we haven't come a long way, we are barely beyond the starting blocks.  My treatment in 2006 was nearly identical to my mom's in 1987)

While there’s still much work to be done, the good news is breast cancer is curable, if caught early enough.
(ME.... see comment above regarding the word cure)

Doctor John West, medical director with the Tampa Bay Oncology Center in Largo, said about 90 percent of breast cancer cases are curable when found in the early stages.
(ME.... ditto above)

Even better news is that fewer women are being diagnosed with advanced stages of breast cancer these days, which West credits to aggressive education campaigns about the importance of breast self-exams and mammograms.
(ME..... read the REAL stats.  Number of deaths per 100,000 women which is really the only way to measure the success with advances disease, is barely changed.  On my blog...)

West has 30 years of experience as a radiation oncologist. An oncologist is a physician who studies all cancers and specializes in different areas of treatment – radiation, surgery and chemotherapy. In some cases, treatment is coordinated between all three.
(ME.... in all cases, treatment determination should be made by consulting all of these doctors: surgical, medical and radiation oncologists)

“It can be a team effort,” he said.
(ME.... "can be"  .... NO, it MUST BE a team effort)

Women who are diagnosed in the early – curable – stage will first consult with their doctor to decide if they should have a mastectomy or not. West said the vast majority of women prefer lump removal, lumpectomy, followed by radiation therapy, if there has been no spread of the cancer.
(ME..... Show me the data.... seems like someone may be pushing an agenda... but I'm so annoyed right now, I'm not thinking clearly... so, just show me the data)

He said radiation therapy is time consuming, but it allows women to preserve their breasts – the contour, shape and texture. He said the results of the biopsy, which determines the type of tumor, most often determines the best treatment method.
(ME..... radiated skin can be a problem and all lumpectomy affects contour, shape and texture.... very few walk away with NO noticeable changes in appearance)

Women who are diagnosed with advanced stages of breast cancer, when the tumor has grown too big or the cancer has spread into the skin, lymph nodes or other parts of the body, are harder to cure, and doctors may not be able to cure them. These women are most likely to receive attention from all three specialties.
(ME.... women dx'd with advanced stages aren't "harder to cure" ... they are terminal.  They will NEVER be "cured" best, they will be chronic and ONLY if the research advances to help them....)

West said women with advanced stage cancer likely would be treated with chemotherapy to shrink the tumor before having surgery or radiation therapy. The goal of this “palliative care” is to extend life and improve the quality of life. He gave an example of radiation therapy being used on a patient whose cancer had spread to the bone. He said radiation could be used to kill only the cancer cells in the bone to help alleviate the pain and let the bone heal.
(ME...... if "advanced stage" means beyond the breast, in most cases, surgical removal of tumor has not been done.  They are researching this NOW)

He said while many advances in treatment have been made, “there still was a critical need for research,” especially for treatment methods for advanced stages and women who relapse after their cancer has been cured.
(ME.... YAY on need for research... NAY on the part about "relapsing after cured" .... WE ARE NOT CURED)

Researchers are continuing to understand hereditary breast cancer and to identify those genes that put women at high risk. He said the percentage of women who carry the gene for hereditary cancer is very low, although he suspects the number is probably “higher than we know.” More work also is needed to develop testing methods, which West said are “tremendously complex.”
(ME.... a YAY, not much wrong with this)

“Eighty-five percent of cancers are the garden variety caused by a random mutation,” he said.
(ME... yes that's statistically correct.  Use the "big words" .... I'm tired of hearing "garden variety" as if this is no big damn deal.  It's caused "invasive ductal carcinoma"  ... and no one is sure of all of the factors that cause ANY cancer.... could be more than just a random mutation... maybe environmental??)

But breast cancer tends to run in families. So discussing your family’s medical history with your doctor is very important.
(ME... WTF???? MOST CANCERS occur in women with NO FAMILY HISTORY)

“It’s an enormously complicated field,” West said. “I’m always learning.”
(ME.. .leaving that alone...)

Radiation therapy has been refined about as much as possible, he said. But other treatment methods, including hormonal therapy and targeted therapies, are being used and studied.
(ME... ditto above)

“We’re not quite there yet,” he said. “But someday we’ll find that silver bullet.”
(ME... let's hope)

West said the most important thing women need to remember is “don’t be afraid.”
(ME... right.. become EDUCATED and empowered)

“Early detection is so important, 90 percent of early stages can be cured – that’s the progress that’s been made,” he said. “The tragedy is when they hide the tumor and don’t seek help until it may be too late.”
(ME... early detection is important but it's not nearly as important as once thought to be.... it's about the tumor biology.... the biggest tumors can be relatively easy to treat and some of the smallest specks are biologically aggressive.  Size matters, but sometimes, not so much)

He said breast cancer was “great shining example” of the progress being made in the fight against all cancers.
(ME... NO SHINING EXAMPLE... the end game is prevent death when "fighting cancers."  We've not succeeded in the area that matters most)

West said he’s seen a change in the perception of patients in the 30 years he’s been an oncologist.
(ME... the perception has HARMED those with metastatic disease.....  they are seen as the failures, those who did something wrong.... they are the stain on the ribbon)

“When I started practicing, there was such a negative attitude about cancer and people would come in with advanced cases. They would almost be in denial,” he said. “But thanks to public awareness, that’s changed.”
(ME... I'm done with the commentary)

End of Scoop It.  End of Rant.  I had to refrain from adding commentary to the commentary.  In reading this again, I see there IS plenty more I would add, but I think I've made my point.  And I'm sure these points will come up during Chemobrain: In The Fog The 31 Days of Awareness ..ooops, I mean Education.

Happy Friday.

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  1. We're fed this rubbish every day over here in Italy, Anne Marie. Today I followed a webinar about "advanced breast cancer" (stages III and IV) during which a famous oncologist said that the disease even at those stages is perfectly curable and that things have improved so much in the last ten years. I felt so angry and sad. I just wanted to cry. I just wanted you to be there and tell them to shut up and stop selling their lies to women.

    1. Much love your way, Grazie....

      We **will** have global alliance to educate and share TRUTHS. This article made me so sad. People turn to journalists and expect they are getting reliable, accurate information.

      Obviously, we have much work to do...


  2. Well said, AnneMarie! I'm already getting anxiety as "month 'o pink" approaches. I'm so grateful for people like you who are out there truly educating! And we're hoping to get a MBC project on Consano soon...

    1. When the right one comes along, I'm sure it will find its way to Consano. Thanks, Molly... your support is ALWAYS appreciated.

      Sending love....



  3. Ye gods, I'm glad he's not my doctor. What a maroon.

    1. :) I don't know who to blame.... the doctor or the journalist. Or likely, both.....


  4. All I can say is bravo! Nicely done.

    1. Thank YOU, Dr. A!

      Your vote of confidence means the world to me, but then, I suspect you already know that!

  5. WOW. Thank you for dissecting that man's article (notice I didn't use the more respectable term, doctor) piece by piece, lambasting and correcting as you went along. Brilliant, my friend.

    1. Thanks, Renn...

      I'm finding the older I get, the less patience I seem to have. I always thought that was supposed to work in reverse?? Maybe we need to do a study about that!

  6. **standing ovation to you AnneMarie**

    The statements made by the author of that article absolutely stun me.

    I've always said... it's one thing to speak falsehoods but it's quite another to speak falsehoods "with a microphone in your hand". That's dangerous!

    The cancer community is fortunate there's a "microphone" in YOUR hand, my dear. With a powerful amplifier connected to it!

    God bless you... God bless your advocacy work... God bless your willing spirit~ Andrea

    1. <>

      Thanks so much Andrea.... Those words are mighty supportive of everything I hope to do. I can't begin to express how much it means to read what you have written.


  7. oh, Anne Marie,

    thank goodness you got wind of this insane article - and SCOOPED it, took him and his ignorant words to task, and told the TRUTH! thank you so much for this post and for all the time and effort you so generously give to advocate for us. hopefully, some how either this man (I align with Renn, refuse to address him with "doctor") and the media outlet that was also so irresponsible will read your scoop and become more educated.

    sending big love along with huge amounts of gratitude, XXXXXXXOOOOOOO


    1. Ahhh.. Karen,

      Thank you for taking the time to let me know you saw this and that I'm not the one going off the rails when I get fired up! See notes above re: patience!!!!

      LOVE to you, my friend... Much love...hope you are continuing to heal on every level.



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