Wednesday, October 1, 2014

PROGRESS? NOT IN MY FAMILY......

The title speaks for itself.  Pink has undermined everything.  NO PROGRESS.

"Breast cancer is not the great success story it's hyped to be, it's just the one that's been the best marketed."

~A selfie quote

Pink sells.  It's the feel good cancer.  Unless, of course, it happens to have altered your body.  Then, not so much.

Go ahead.  Quote me a statistic.  NO PROGRESS.  Ok, I'll concede.  Some progress for some people but not the progress we need for the vast majority of the population and especially for those who are living with and dying from metastatic disease.  And how about those who are dealing with collateral damage from treatment fallout?

What?  You need to stick your hand into the wound like doubting Thomas?  Be My Guest.  And then, do me a favor?  Throw a heap of money on the table and I'll match it.  Winner take all.

As we enter the land of the pink ribbon, have we learned anything different than what we knew last year, five years ago, twenty five plus years ago.  Yes, we have new targeted therapies but has the landscape truly changed?

Surgical techniques are better but surgery is still surgery.  Imaging tests have gotten more sophisticated, but imaging doesn't stop anything.

My mom was diagnosed with her first primary cancer in October 1987.  I began chemo and was doing all sorts of post op appointments in October 2006.  If my math is correct, her initial treatment was 27 years ago.  It consisted of a wire insertion surgical biopsy.  Check.  I had one of those, too.  Then, she had a mastectomy.  Check.  I did that too, except I was able to begin simultaneous reconstruction.  Lymph nodes?  Mom had nineteen removed, four cancerous.  I was injected with radioactive dye for a sentinel node biopsy.  Only five were removed.  Where are the great advances in this scenario?  I see none.

Moving right along.  Chemotherapy.  My mom's cocktail of drugs began with a three poison combo, after which, one of the poisons was swapped out for another.  The needle was in her hand. The drugs were pushed.  Two of those drugs in round one? Methotrexate and Fluorouracil.  My cocktail of toxins, CMF, included both Methotrexate and Fluorouracil.  Mine were dripped. So the great advance in the chemotherapy was an IV pole?

Post treatment, my mom was put on tamoxifen which did cause other issues as I recall.  I bypassed tamoxifen and went directly to an aromitase inhibitor when I made the decision to remove my ovaries.  The AI's are a newer class of drugs but they do the same thing.  Suppress estrogen.  And the revolutionary advance here would be...... yeah, didn't really think so. 

You MUST be kidding me.  In the case of me and my mom, NOTHING has changed.  Like I said.  NO PROGRESS.




Thanks to my superstar, superhero, super organized and SUPER CARETAKER dad, I have every single one of mom's records from 1987 which were of immeasurable help to OUR oncologist in 2007 when they found the new cancer in her other breast.
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9 comments:

  1. It gives me shivers to read all if that. Much of the same stuff happened to me.

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    1. And then some... Sending love to you...

      xoxo

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  2. And our primary screening technology is woefully outdated & misses a ridulous number of lesions. Grr. Hugs to you, AM.

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    1. Sistah grumbler.... sooner or later it's gong to change. it just seems it's destined to be Later and that makes me angry.

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  3. such a sad, sobering, and maddening review of no progress, and that you have to confront that fact within your own family. what will it take to turn the tide? money, and lots of it, for research to get oh, so many answers to what makes breast cancers happen, to learn how to prevent them, how to stop recurrence ever being the final chapter. this year I am not subjecting myself to one iota of pink shit, no way, no how, no where. instead, I am going to read every word of Susan Loves newsletters, follow and participate with what I can in the Army of Women and HOW studies, as well as supporting Metavivor. and of course I will continue to comment to give my support to my bloggy friends who are always so astute with all they give in their writing, in their advocacy, and in sharing their stories. but I will not frequent any places where pink tides run, pink crap is sold, nor other pink venues set up on street corners, the grocers, hospital gift shops -yup, I'm hunkering down and will have to live a near hermit life for the next clusterfuck of 30 days I plan to calculate the money i'll be saving by my self imposed avoidance - for gas, a bare-bones kitchen cupboard and emergency appointments with my therapist, then donate it through the proper channels. i refuse to allow myself to be done in with angst, anger, frustration and the sheer madness of "awareness". I worry sometimes that the burdensome stress of those emotions may be fucking trying to kill me. so I am DONE. there...I said it and it feels good. thanks for giving me a chance to scream it out in your comment space, my dear Annemarie.

    much love,

    Karen xoxo

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    1. Scream on, rant on..... You know I love your rants and I love it every time you grace these pages with your words. I send you all my love, Karen. You've not had an easy run and yet, you are here, part of this community, holding us up. You are so loved.

      xoxox

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  4. Hi AnneMarie,

    I am a first-time visitor to your blog, and have already found the chemobrain info here to be both helpful and reassuring. Thank you for putting in the time and effort to do this!

    I'd wanted to comment on the "Army of Women" page but the was no room there for comments, so I thought, "Oh well, I'll just post on her latest blog post and just be off-topic." However, after reading your powerful, disturbing and thought-provoking points above, perhaps my comment isn't that far off topic at all. The gist of it is: I looked around the "Army" web site and of course agree that it's a great idea to survey as many people as possible to try to learn how and why breast cancer gets its foothold. But this part of the mission bothered me and I would like to know your thoughts:

    "To challenge the scientific community to shift the emphasis of research beyond the cure to focus on breast cancer prevention research."

    Aaack! Shifting the emphasis of research from cure to prevention would surely end up taking even more interest away from research on metastatic disease. I'd be okay if they were aiming to simply ADD to research topics, but to aim their sights on taking AWAY from curative research is too... I dunno? Unhelpful to those with the disease? Flippantly dismissive?

    Cancer -- if I have it right -- basically starts when one little cell divides and mutates during that division. With life, cells will always need to divide, so the risk of mutation and thus the germination of cancer may always be with us. Therefore, humans may always need to cure cancer, and the hope lies in creating cures that make the disease as minimal and trouble-free as possible. I'm not too familiar with breast cancer, as I have metastatic colon cancer, but am aware there are a number of types and sub-types of BC, and suspect the causes are far-flung, with genetics and environmental toxins as key contributors. These unknown factors make Dr. Love's work welcome and very important, but I would hate to see MORE suffering by patients because some research doctor or facility was swayed -- persuaded -- enticed -- paid more -- to shift from researching Stage IV disease (or any stage of it, really) to seeking preventive measures.

    Add YES, take away NO!!


    p.s. I had 5FU, Oxaliplatin and Avastin in 2007 as part of first-line treatment, and the combo helped save my life, but it was a full three years before I could write a coherent sentence without an extreme amount of effort and much re-writing, and my checkbooks from that time are a mess of scribbles and crossed-out errors, (and unnoticed errors) and forget trying to read or even follow a movie with comprehension or memory! After three years, things got noticeably better, but I still have some problems that didn't exist before all the treatments and surgeries. I cringe inside when people try to be empathetic and say "Oh, it happens to all of us; it's just normal aging!" They mean well, but (fortunately) just don't know. And my oncologist denied there was any connection... I wonder if he'd still say the same things today.

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  5. I see your point, and it is eye opening.

    But at the same time, I am living with metastatic disease (for 2 years now) and my only hope for living beyond a 5 year statistic is new meds coming out to treat the disease. And where do those meds come from? Research. And how do we fund research? I don't honestly know, but my hope is that it comes from some of the fund raisers in which I have participated, and in which I will continue to participate.

    Also, October is about much more than just supporting breast cancer research. It's also about awareness. I was not the typical breast cancer patient. I was 31 years old, had no family history, and ignored the lump I felt for more months than I care to admit. I thought it was nothing. My personal goal for breast cancer awareness month is to use my story as a cautionary tale - because I caught mine so late, I ended up being stage IIIb at the time of diagnosis and then stage IV two years later. If I can help even one young lady avoid this same fate, then I say, thank you Pink-tober.

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  6. Jennifer-I am so sorry you are living with metastatic disease. That community is the one that is closest to my heart. You are so young and yet, you are proof that no one is "too young" and that's part of what I hope will be a campaign of education this October. When they talk about "early detection" and they push that upon us, with no family history, it's the over 40 and even more, the over 50 crowd they are targeting. Everyone needs to be educated about the facts. It can happen at any age, it can happen to men. To keep pushing the same "awareness" without adding depth like what happened to you and the message is getting lost. It's up to us to change the conversation, to expand the conversation. I've heard situations where doctors have told their patients, "it's nothing, you're too young." Makes me want to scream.

    And to my anonymous friend, I'm all about prioritizing research and for me, saving lives comes first. I support the work of Dr. Love wholeheartedly in the hopes it can change things for my daughter, for the next generation. But, I've watched too many people die this year alone. We need research for the metastatic community. We need research for those who have had a primary diagnosis to stop recurrence. I have "skin in the game" on all levels. My mom is metastatic, I am presently NED and as I said, I have a daughter who I hope will never have to deal with the choices I had to make.

    Thank you both...

    AM

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