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Metastatic Breast Cancer and Nancy Brinker
Thursday, October 13 was "National Metastatic Breast Cancer Awareness Day." Of the many essays and blog posts that I have seen in connection with the persistent lack of understanding of metastatic breast cancer that gave rise to the desire to set aside one day to focus on Stage 4, this open letter to Nancy Brinker, the founder of Susan B. Komen for the Cure Foundation, is my favorite: http://healthychange4you.blogspot.co...letter-to.html
Hope won't fix this. A positive attitude won't fix it. Elizabeth Edwards had hope, good medical care, and a positive attitude. She died three years after her breast cancer was found to have metastasized.
I do all I can to take care of my body, mind and spirit. I did that before I was diagnosed. I would like to think that doing more of that, or adding something else--another supplement, another spiritual practice, another kind of exercise--will put me in the 2 to 3% of people who achieve permanent remission after hitting Stage IV, but that is, essentially, magical thinking.
Stage IV breast cancer is incurable. Staging is an outmoded concept. Early detection is not really saving lives, it's just skewing the five year survival rate. We need a cure. An organization that has trademarked the phrase "for the cure," and has actually sued to enforce its ownership of that phrase, should be on the forefront of searching deliberately, systematically, and scientifically for understanding metastasis and learning how to stop it. Nancy Brinker recently said in an interview that she didn't think the cure would come from a laboratory. Huh?
She has a huge megaphone, and, for all the good she has done, she nevertheless misuses her position to create misconceptions and to promote both false complacency and false fear. It isn't deliberate. It's just an inevitable consequence of "cause marketing" and "activity based philanthropy." In a market-driven approach to solving public health problems, messages inevitably get distorted to serve the interests of the corporate sponsors. Sponsors want happy, celebratory, feel-good events and stories, so the mainstream version of "awareness" is false. Fewer women are going to get breast cancer than most people think, but far more women who do get it will die from it than most people realize.
I think this letter strikes a graceful balance between gratitude and confrontation. Demonizing Susan B. Komen for the Cure is counterproductive, but we can't let them have the last word on this either.
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Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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