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View Poll Results: How was your HER2 BC first found?
By you or your partner 43 67.19%
By doctor or nurse during exam 4 6.25%
Routine, annual mammogram 15 23.44%
Ultrasound (NOT following mammogram) 1 1.56%
MRI (NOT following mammogram) 1 1.56%
Voters: 64. You may not vote on this poll

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Old 09-13-2011, 04:26 PM   #1
NEDenise
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How was your HER2 BC first found?

Hello Ladies,
In this unofficial poll...please vote for how your BC was initially found...even if it wasn't confirmed as BC until the lab results came back.
Thanks!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-13-2011, 08:24 PM   #2
norkdo
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Re: How was your HER2 BC first found?

thank you sooooo much for doing this, denise.
I had felt that I must have been in a minority of women, that it must have been cos I didn't have a family doctor, who found the breast cancer myself, and who, upon diagnosis, was already at Stage 3b. Through two polls here, I find, instead, that that is the way HER2 breast cancer is found: the majority find it themselves and are already in stage 3b. Fascinating. I had considered a lawsuit for my false negative mammogram. Can we get a poll on that, as well? "How many of us have had a false negative mammogram." also can we get one on suspected (never confirmed, mine) dense breasts ?
__________________
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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Old 09-13-2011, 08:43 PM   #3
ElaineM
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Wink Re: How was your HER2 BC first found?

An annual mammogram found the tumor. My doctor had a "hunch" that I was her2 positive !!!!!!! He followed up on his "hunch" and saved my life.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.

Last edited by ElaineM; 09-13-2011 at 08:44 PM.. Reason: addition
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Old 09-13-2011, 09:20 PM   #4
candlegranny
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Re: How was your HER2 BC first found?

my mammogram was in sept 2009 and said i was fine.. january 2010 i was stage 3C and alot of lymphe node involvement. how can this happen
__________________
Mammogram Sep 21, 2009 everything good and clear
DX jan 19,2010 Invasive Ductal Carcinoma, Grade 2 Age 56
modified radical masectomy on LEFT side 29 Jan 2010
2.7 cm 18/31 nodes
mets to just above collar bone ( 2 nodes showed in PET)
ER- PR - / Her2 +++ (IHC) Stage 111 C
ki-67 60% nottingham score 7
A/C chemo mar 22,2010 DD
herceptin & taxotere DD june 1,2010
finished taxotere july 12, 2010
finished herceptin 16 May 2011
PET Scan 9 Aug 10, cancer in neck is gone! NED
33 Rads completed 1 Oct 2010
PET/CT Scan 6 Jan 2011 NED
PET/CT Scan 3 Aug 2011
MUGA 59% 3/22/10 -63% 9/23/10 - 51% 1/4/11 - 55% 2/17/11 - 50% 8/3/11
26 Aug 2011 NED
20 Feb 2012 NED
5 Mar 2012 PORT OUT
12 July 2012 DIEP breast reconstruction
23 Aug 2012 NED
15 Nov 2012 new breast tweeked and natural breast uplifted and implant added
17 Feb 2013 NED
27 mar 2013 lipo suction to add fat cells to new breast in hopes for needed adjustment.


"Don't spend your time worrying about when or how you are going to die, spend your time figuring out how you are going to live today". ~Elizabeth Edwards.
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Old 09-13-2011, 09:55 PM   #5
AlaskaAngel
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Re: How was your HER2 BC first found?

Even people who work daily with patients who have breast cancer and who themselves have the recommended periodic mammograms are often surprised to find out they have cancer when they are personally diagnosed. When people have routinely had testing done that comes back "all clear" it is awful to find out that the types of testing that is done does not always find the cancer even when sometimes it is there.

Mammograms primarily show a few characteristics, such as variations in calcifications. Some calcification shapes and sizes as well as the density of the calcifications indicate that cancer is more likely than other calcification shapes, sizes and grouping.

Ultrasounds distinguish between fluid-filled areas and solid spaces, with solid spaces being more likely to be cancerous.

That is why often both are done before doing a biopsy to bring out tissue that is then analyzed outside the body for cancer.

These tests are not 100% perfect every time. With mammograms, if the breasts are especially dense, sometimes calcifications are indistinguishable from the dense breast tissue, or "invisible".

In the last decade there has been greater recognition that other types of monitoring may be needed as well for patients who have especially dense breasts.

I personally wonder why there hasn't been more interest in routinely ordering something like a CA 15-3 or CA 27.29 for the patients who have dense breasts, especially for those who are considered to have higher risk factors for breast cancer to begin with. To me that would make a LOT more sense than just relying on an annual mammogram. The CA 15-3 and CA 27.29 is not a perfect test either. But at least they would have one more possible indicator to help in their decision-making process.

AlaskaAngel
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 09-14-2011, 04:52 AM   #6
NEDenise
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Re: How was your HER2 BC first found?

Hi Everyone,
My surgeon told me that HER2 BC sometimes grows microscopically, along the surface of the ducts, without forming tumors for YEARS! He says that's why many of his patients are not diagnosed until they have advanced disease. The guy is a prominent researcher, as well as a surgeon...he says several cancer centers are researching ways to detect HER2 disease earlier...but didn't have any suggestions for me to pass on to my younger sister. I'm worried she'll end up like me someday. Blindsided by stage 3 disease,

Insurance will not pay for her to have MRIs instead of mammograms, and she was told that genetic testing "would never be approved". But I'm going to pass on the info AlaskaAngel shared about the two blood tests. Thanks!

Stay strong, new friends! Keep praying for that cure!
Denise

__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-14-2011, 05:12 AM   #7
norkdo
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Re: How was your HER2 BC first found?

Thank you for sharing this, denise. It is gold. absolute gold.
wow.
wow.
sending it to my sisters.
__________________
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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Old 09-14-2011, 06:58 AM   #8
jra40
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Re: How was your HER2 BC first found?

Unfortunately, I could've found it on my own earlier in the game. I actually had pain in my right breast and thought it was just PMS. Once the pain got increasingly worse over 6 months, I had my doctor check it at my routine gyno visit. I am still mad at myself for not being dilligent in doing self-exams.

Funny thing is, when I told my doctor I was having pain she immediately said that cancer does not cause pain. In my case she was dead wrong -cancer can cause pain! Should've been a red flag warning for me!
__________________
11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 09-14-2011, 07:35 AM   #9
Lisa1962
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Re: How was your HER2 BC first found?

March of 04 I had a clear mammogram - by November I had a lump which had already spread to my spine... I had some fast-growing cancer - I've always liked to excell at what I do....
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Diagnosed 2/05 as Stage IV
ER/PR and HER-2 +
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Old 09-14-2011, 08:26 AM   #10
NanaJoni
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Re: How was your HER2 BC first found?

Found a lump myself when taking my bra off to get ready for bed. Was in the dr's office at 10 am the next morning. Had mammogram/ultrasound and there were actually 2 tumors (one was er-/pr-/HER2+++ and the other was triple negative). If I'd waited for my next mammogram which was 4 months away, I'm sure I would not have been Stage 1. You can see the rest in my profile below.
__________________
Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 09-14-2011, 08:53 AM   #11
ljbm
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Re: How was your HER2 BC first found?

I,like some of you, had been told that breast pain does not indicate cancer. I had a lot of fibrocystic tissue and when my right breast began to really hurt, I thought that I really need to cut down on the caffine that I ingest. For me, caffine aggravated the fibrocystic issues. I also had a clean mamogram in May and by August when I found the lump, it was 6.2 cm. I found that interesting what someone said about HER2+ growing microscopically on the ducts before turning into a tumor. That makes so much sense in my case.
Prayers to you all.
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Old 09-14-2011, 10:07 AM   #12
shellusea
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Re: How was your HER2 BC first found?

This is a very interesting thread. Having inflammatory breast cancer (IBC), not detectable with mammogram I too found it myself, even if there is usually no lump for it, there is changes in the breast you can SEE. IBC is agressive and fast growing. It is usually found stage IIIB or C, or IV in a matter of weeks.
NEDenise, I woulk really like to know the name of your onc who talk to you about the microscopically thing. This is so interesting. Working myself in a research center, I would like to see if research are conducted in that way.
IBC does hurt, it is one of the symptoms, like if you have a bruise.
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Old 09-14-2011, 10:12 AM   #13
ljbm
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Re: How was your HER2 BC first found?

I need to correct one item. I had IDC ( Invasive Ductal Carcinoma) NOT IBC ( Inflamatory Breast Cancer)
__________________
5/07-clean mamo
8/07-found lump in right breast
9/07-diagnosed HER2+++, IDC, ER-PR-, 6.2 cm tumor, stage 3, 1/18 nodes, grade 3, modified radical mastectomy
10/07-power port installed, chemo begins
12/07-finished 4 rounds AC
1/08 began taxol/herceptin
3/08-finished taxol, herceptin only till end of 08
4/08 30 rads
12/08-last chemo I pray
1/09-port out, YEA!!!
Currently NED and pray I stay that way.
Thank God and MD Anderson!!!
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Old 09-14-2011, 10:20 AM   #14
shellusea
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Re: How was your HER2 BC first found?

I also was told younger that a pain in the breast is not cancer , and sadly it is one reason I waited to consult.

ljbm a lot of IBCers are treated at MD Anderson and they all love it like you!
p.s. I understood you had not IBC.
__________________
IBC DxJan.2009 (49yrs)
stageIIIB er-pr-Her+++
4 A/C, 12 Taxol&Herceptin
MRM clear margin, 6+/24 nodes
35 Rads with bolus
1 year Herceptin finish Sept.2010
Neratinib trial April to July 2011
Now enjoying life!
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Old 09-14-2011, 12:31 PM   #15
tricia keegan
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Re: How was your HER2 BC first found?

I found mine in the shower at a hotel when away from home attending a training course with my job!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-14-2011, 06:34 PM   #16
norkdo
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Re: How was your HER2 BC first found?

candlegranny,
wow. similar to mine but my first mammo was suspicious. i received a letter to get a follow up one. second one "all clear." Ar ar ar. I left off getting a mammo again for over two years then found a big huge round tumor in my right breast when i dieted and examiined my profile in a gym top. "what is making my right breast look like a girl half my age....high and round?" (ask a silly question, get a scary answer!!!!!!) LOL
Question:
do you happen to know, re: elizabeth edwards' quote, where I can read the stages of cancer she went through for her breast and perhaps what kind of breast cancer she had? poor poor woman.
__________________
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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Old 09-14-2011, 06:35 PM   #17
Mary Jo
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Re: How was your HER2 BC first found?

I remember one night lying in bed, early 2005...possibly March....and doing a self breast exam. All of a sudden my fingers stopped on an area that I felt something....it did feel different BUT explained away with it being scar tissue from a lumpectomy I had in that same area 12 years prior. I knew my mammogram was coming up....June...so put it off because I knew it wasn't anything anyway. I just had a mammogram a year prior and all was fine.

June came and I went to have my mammogram. I mentioned to the tech. that I had a lump in the area I a lumpectomy in 12 years prior and she noted it and put a piece of tape their. She felt it too. They did the mammogram and said "all clear.......see nothing." Because the lump could be felt they decided to do a more concentrated picture and did it again. Still......."all clear....see nothing." That afternoon they did an ultrasound and biopsy because now they DID see something. Remember, this was not seen on mammogram.....my tumor was 4 cm. in size...that is approximately 1 inch in diameter. Yikes.

So, the next day I got that dreaded phone call. Yes, breast cancer. Funny thing......the lumpectomy I had 12 years prior...no cancer BUT atypical hyperplasia cells....which means that women who have these cells often DO develop breast cancer. Makes sense what Denise said above....about it growing microscopically on the duct before becoming a tumor..... Hmmm.......interesting.

SOOOOOOOOOOOOOOOOO important to know our bodies and do those self exams. In my case, if I hadn't....God only knows..........

Love to you all, my sisters,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

15Years NED

<>< Romans 8:28

Last edited by Mary Jo; 09-14-2011 at 06:40 PM..
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Old 09-14-2011, 08:12 PM   #18
NEDenise
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Re: How was your HER2 BC first found?

Wow, Mary Jo,
Your story is soooo similar to what happened to me...scar tissue from lumpectomy a decade before...

I hope that's a "sign" that my DIEP will go as well as yours!!

Stay well! You're an inspiration to gals like me!
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. Cavett Robert
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Old 09-16-2011, 07:18 AM   #19
Henny
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Re: How was your HER2 BC first found?

There's a new scanner out called Lumagem that can see small breast cancers. It's good for women with dense breasts (about 30% of us) who's mammograms can't see tumors. It's also good for women who have a suspicious mammogram and can't have an MRI
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Henny
Dx 3/07 IDC and DCIS Her2+ ER- PR-
Stage IIb 1/15 nodes
A/C, Taxol, Herceptin
Bilateral mastectomies with recon
Zometa 2/yr for 3 yrs- finished 8/2011
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Old 09-17-2011, 07:54 PM   #20
Elizabethtx
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Re: How was your HER2 BC first found?

I too had a mammo a year and a half earlier, which they did a biopsy and found "calcifications". Not to worry, that has nothing to do with cancer. Then I had pain and a sore area. Was told no way it could be cancer then, because C doesn't cause pain. They were dead wrong! Same area as the previous biopsy and in two months of waiting the tumor grew to over 3 cm. I tell everyone now, don't believe it....go get it checked ASAP!
Interesting poll as it confirms what we survivors all know!
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Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011








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