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Old 03-06-2015, 11:36 PM   #1
Kc786
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Join Date: Mar 2015
Posts: 4
Need help understanding Her2 - scared

Dear all. My wife who is 36 was just diagnosed with Her2 positive breast cancer. I think grade 3. She is ER - and PR -. 1 lymph node positive. PET scan showed no other areas.

She started chem taxol, carboplatin, herceptin and pertuzmab. Then she will have surgery and radiotherapy. We are two months in.

I am deeply scared. Whatever I read shows that Her2 is very aggressive and recurrence is high. It also shows that if you are lucky you can manage to fend of Her2 for maybe 10-20 years but prognosis beyond that is very poor.

I don't know how/what to think at the moment. Can someone enlighten me please of what I am dealing with. Do I really need to prepare myself for the worst and just enjoy the time we have.
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Old 03-07-2015, 06:54 AM   #2
Becky
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Location: Stockton, NJ
Posts: 4,097
Re: Need help understanding Her2 - scared

Those poor stats are old. Herceptin was a huge game changer and the Perjeta, which is even newer ups the game. Many on this regime have a complete clinical response when they have their surgery after chemo is complete. I know you are both scared and will be on pins and needles for awhile but this is normal.

I was 45 when diagnosed and there was no Herceptin for me. After chemo and radiation, it was available so I got Herceptin alone. Althoigh it works alone, statistics are much better when the first doses are combined with chemo. But I am still here at 10 and a half years.

The beginning is the worst time but you will see it will all be well.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 13 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-07-2015, 09:07 AM   #3
thinkpositive
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Join Date: May 2014
Location: San Diego
Posts: 411
Re: Need help understanding Her2 - scared

Becky is right. Those stats are old and do not reflect the impact of the newer therapies like Herceptin and Perjeta. Having HER2 breast cancer in the past had one of the worst prognosis. However, that has changed.

I was diagnosed at stage 3C (the only higher stage is 4) in Aug 2013. I responded well to treatment and have no evidence of disease. I'm doing great and so are a lot of other women who had the same initial diagnosis.

One thing that I have found when I want to search the internet for information on this disease is to use Google Scholar. If you limit your searching to this, you will know that the information comes from a reliable source.

Take Care
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 03-07-2015, 10:28 AM   #4
rhondalea
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Location: Somerset, NJ
Posts: 485
Re: Need help understanding Her2 - scared

I think what he may have found was a fairly recent study of very early stage women who did not receive Herceptin. The stats were dismal, and I'm hard put to understand why the various synopses were written with so little clarity, because they made it seem like we all were doomed.

Frankly, if I had to get breast cancer, I'm thankful that it was HER2+ at a time when we have more options than any other subtype. I fully expect to live a long time, even if I experience progression at some point in the future.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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Old 03-10-2015, 07:33 AM   #5
Kc786
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Join Date: Mar 2015
Posts: 4
Re: Need help understanding Her2 - scared

Many thanks all. I am so grateful to your response.

You are right. We are right at the beginning hence the fear. I think the thing that scared me the most was that I saw on message boards that in some cases even after taking Herceptin mico mets/mets returned.

May I ask, other than the the treatment my wife is already receiving is there anything else I should look to get? For example I have read about this GP2 vaccine which does not seem to be out yet?
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