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09-28-2011, 01:10 PM
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#1
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Senior Member
Join Date: Oct 2007
Posts: 18,946
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October Breast Cancer Awareness Hits The White House
Every week the White House features a 'Champion of Change' and with October Breast Cancer Awareness Month fast approaching The White House has chosen Anne Marie Murphy, Ph.D. who was named the Executive Director of the Metropolitan Chicago Breast Cancer Task Force in April 2010 and has more than twenty years experience in healthcare reform. Dr...
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09-28-2011, 03:12 PM
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#2
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: October Breast Cancer Awareness Hits The White House
i know the right thing is to leave this alone. but that i cant do. see the warnings on the ad? things u should look for ??? to make sure u don't get breast cancer etc? do we just shut up and pretend they are true? I have read the polls on this site. i have read everyone's stories and comments. do we just let the white house and everywhere else tell these false things? the truth is all ages of women get breast cancer and early detection is simply not in place for most of us. (see the poll on this site). most of us were unable to spot the cancer early as it silently lines the ducts for years before it forms lumps and when u find it (mostly yourself or your partner) you are already in stage three.
i realize people raising money for b.c. have to feel they are taking charge of their health and helping others do so. with Her2 b.c. you simply cannot always find it in stage one.
ok. i shut up now.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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09-28-2011, 03:27 PM
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#3
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: October Breast Cancer Awareness Hits The White House
ok. i was peremptory. i went back and reread more. the thing i was objecting to was this:
Aside from having regular screenings and being generally aware of breast health, other factors that women should be aware of include :
Post menopausal weight gain
Family history of the disease
Getting Yearly Mammograms after the age of 40
when i went back and read the whole thing, aside from the above, the rest was more realistic. better than the above.
Here is my point. We should not be happy with the above "standard advice" . We should rebel. we should speak out. Telling people that they only need worry if they are chubby and post menopausal with a family history of the disease and telling them to put faith in yearly mammograms without knowing if they have dense breasts, etc (mammograms did not serve the majority of women on this site according to our poll...my mammogram, and many other mammograms were false negative for breast cancer)...is not right because it is not true. Read the threads consisting of dozens of posts by young women on here. definitely not post menopausal.
Billions of dollars donated over the years should mean we demand really good results. At least a few billion of some of the billions donated to breast cancer need to be set aside for replacing mammography with the latest state of the art machine that detects cancer in those with dense breasts.
I had a bad mammo and a follow up mammo. The follow up was false negative for b.c.
Advice in a fundraising campaign tends to put the onus on the individual woman and what she, alone, can do to make this a less rough road once it gets diagnosed. but catching it early is, from what I have seen on these boards, not the lot of the individual woman. It is the lot of the men and women who decide how the billions get spent: a reliable machine that detects cancer in dense breasted women, for example. there are billions of us out there in all countries wanting the right machine, and wanting the money spent correctly.
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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09-28-2011, 04:52 PM
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#4
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Senior Member
Join Date: May 2009
Posts: 510
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Re: October Breast Cancer Awareness Hits The White House
Go Nora!!!! Yeah, I agree with all of your points. I was one of the women who fell through the cracks. Found a swollen lymph node in July 2008 and was told in 3 subsequent office visits that I had nothing to worry about, my breasts were just going through "breastfeeding changes" or were "fibrocystic".
I had a negative biopsy right before being diagnosed in February 2009 (my biopsy came even before a mammogram/MRI was offered to me because of my age) and the doctor had trouble putting the needle through because of my dense breasts (dense with dense breast tissue and the giant tumor that the doctors let grow on me because they were not willing to test me).
And don't get me started on all the stress/diet/exercise/weight/blahblahblah links to breast cancer. I was running 3 miles a day and eating a healthy diet when I was diagnosed. I breastfed each of my kids until they were 2 to give them the benefits of breast milk and protect myself from cancer. The fact is the risk exists for all of us - some more than others. Not much is known on the factors that lead one woman to have it and the other not.
I hear you!!
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
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09-30-2011, 06:42 AM
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#5
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Senior Member
Join Date: Jul 2011
Location: ottawa canada
Posts: 367
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Re: October Breast Cancer Awareness Hits The White House
Bejuce, thank you so much for this. I really appreciate it.
For breast Cancer Awareness Month I would love it if all those who do not fit the chubby, post menopausal, history of b.c. blah blah stereotupe...whose mammograms were either useless or failed them due to whatever reason...dense breasts, fibrocystic . . . who discovered the breast cancer later than stage one, for example. (we have learned on this site that HER2 Breast Cancer (b.c.) mostly first appears as stage three or more, after lining the ducts for years, unable to be detected) those of us who want to can rewrite the advice to women. those who fit the stereotype (i do actually) can also contribute.
http://her2support.org/vbulletin/showthread.php?t=51572
__________________
fall 2008: mammo of rt breast worrisome so am asked to redo mammo and have ultrasound of rt breast.I delay it til january 2009 and the results are "no cancer in rt breast. phew."
found plum sized lump in right breast the day before my dad died: April 17th 2011. saw it in mirror, while i was wearing a top, examining my figure after losing 10 lbs on dr. bernstein diet.
diagnosed may 10 2011
mast/lymphectomy: june 7 2011, 5/20 cancerous nodes. stage 3a before radiation oncologist during our first mtg on july 15th says he found cancer on the lymph node of my breast bone. Now stage 3b.
her2+++, EN-, PN-. Rt brst tumors:3 at onset, 4.5 cm was the big one
chemos: 3fec's followed by 3 taxotere, total of 18 wks chemo. sept: halfway thru chemo the mastectomy scar decides to open and ooze pus. (not healed before chemo) eventually with canasten powder sent by friend in ny (illegal in canada) it heals.
radiations:although scheduled to begin 25 january 2012, I am so terrified by it (rads cause other cancers) I don't start til february, miss a bunch, reschedule them all and finally finish 35 rads mid april. reason for 7 extra atop the 28 scheduled is that when i first met my rads oncologist he said he saw a tumor on the lymph node of my breastbone. extra 7 are special kind of beam used for that lymphnode. rads onc tells me nobody ever took so long to do rads so he cannot speak for effectiveness. trials had been done only on consecutive days so......we'll see.....
10 mos of herceptin started 6 wks into chemo. canadian onc says 10 mos is just as effective as the full yr recommended by dr. slamon......so we'll see..completed july 2012.
Sept 18 2012: reconstruction and 3 drains. fails. i wear antibiotic pouch on my job for two months and have 60 consecutive days visiting a nursing centre where they apply burn victims' silver paper and clean the oozing infection daily. silicone leaks out daily. plastic surgeon in caribbean. emergency dept wont remove "his" work. He finally appears and orders me in into an emergency removal of implant. I make him promise no drains and I get my way. No infection as a result. Chest looks like a map of Brazil. Had a perfectly good left breast on Sept 17th but surgeon wanted to "save another woman an operation" ? so he had crashed two operations together on my left breast, foregoing the intermediary operation where you install an expander. the first surgeon a year earlier had flat out refused to waste five hours on his feet taking both boobs. flat out refusal. between the canadian health system saving money and both these asses, I got screwed. who knows when i can next get enough time off work (i work for myself and have no substitute when my husband is on contract) to get boobs again. arrrgh.
I have a blog where I document this trip and vent.
www.nora'scancerblog.blogspot.com . I stopped the blog before radiation. I think the steroids made me more angry and depressed and i just hated reading it anymore
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