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Old 10-07-2011, 08:48 AM   #17
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: rewrite breast cancer awareness message the way YOU want it to read

This is a fascinating and thought-provoking thread.

One interesting thing about it is that even we, who are "experts" in a sense, do not all agree.

I read the "The Last Word on Nothing" post yesterday and reposted it on facebook. I highly recommend it for its message that the old model of breast cancer as something that starts small, gets progressively worse (at a steady rate) and is invariably fatal if not treated has been discredited. On this forum there are at least two women who were diagnosed and treated at Stage 0 and are now Stage IV. Twenty to thirty percent of people with "early" stage breast cancer will go on to Stage IV. Six to ten percent are Stage IV at diagnosis. Some breast cancers, in some women, will never metastasize and therefore will never be a threat to their lives. In some people, with some cancers, the cure is actually worse than the disease. Prostate cancer is an example. Unfortunately, with breast cancer there's no way to tell which is which. This muddy, cloudy state of facts is not as "celebratory" or romantic as the "early detection = cure" message. It takes longer to say it, and process it.

The U.S. "war on cancer" has been going on for 40 years. Some cancers with clear causes (lung and stomach) are much less prevalent now. Some others (Non-Hodgkins Lymphoma and Acute Lymphoblastic Leukemia) are more "curable" than they used to be. And although the number of people dying from breast cancer hasn't changed, the population has increased, so the percentages are going down.

Mammogram has its own risks. Radiation to the breast might actually cause cancer. There is certainly a link between radiation exposure and breast cancer. It can also lead to a false sense of security, with false negatives and to increased anxiety, expense and unnecessary risk, with false positives. Pre-menopausal women have a lower risk of contracting breast cancer and a higher rate of inaccurate results from mammograms. That is why routine annual screenings for women in their 40's is not the best use of health care resources.

Diagnostic mammograms, as opposed to routine screening, are another story. I am grateful for my diagnostic mammogram/sonogram, which I got because of some changes in my breast that I noticed first.

I know a woman who was Stage IV at diagnosis, which occurred one month after she had a "clear" mammogram. She found an enlarged lymph node under her arm. So much for "early detection."

It's extremely difficult to link environmental factors with cancer risk. It is also the case that many known carcinogens are under-regulated, possibly due to excessive industry influence on the legal process. Nowadays, too, the "job-killing regulations" meme is so pervasive you hear it on both sides of the aisle, but very few people are saying we need "life-saving regulations." I think we do. And, in fact, regulations and restrictions actually spur innovation and economic growth.

It's time that more attention was paid to the "common good" in all its dimensions. Maybe by being too focused on one kind of illness public health advocates are shooting themselves in the foot. The disparities in health care access in the US are indefensible. Maybe we could all do more overall good by working hard to remove the injustices and inequities.
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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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