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Old 04-22-2015, 05:10 PM   #1
Join Date: Feb 2014
Posts: 15
Very, very confused

My sister was originally diagnosed with estrogen, progesterone negative, HER2+ breast cancer back in December 2013. Her course of treatment was set as chemotherapy with herceptin, double mastectomy and no radiation therapy.

She finished her chemotherapy and had a double mastectomy with reconstruction. In March one of her implants became infected and had to have surgery to have one implant removed. Herceptin stopped until she was relatively healed then she would finish her final 3 rounds of therapy.

Today, she saw her breast surgeon who asked if she was taking her tamoxifen because of being estrogen positive. She also mentioned that since there was lymph node involvement that she might need radiation therapy. No tamoxifen prescription was ever ordered.

Needless to say, we're darn confused! I was given the original biopsy pathology report which indicates that the tumor was estrogen negative and no lymph node involvement! We were given incredible news in March that there was no evidence of cancer from the breast tissue. Both doctors said that she is in remission.

Who are we to believe?
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Old 04-22-2015, 10:13 PM   #2
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Join Date: Nov 2014
Posts: 83
Re: Very, very confused

That does sound very confusing! I am learning about Her2+ cancer myself and don't have answers for you, but I will say that cancers can change. I am surprised she did not get radiation. I had 1 lymph node involvement and had to have radiation. But, I did notice that my pathology report was written up wrong....it said I was hormone positive after my BMX. My onc said it was a mistake. I don't know who to believe.
I also had implant infection and had to have it removed. I only have one now. At the time of my infection and implant removal, I asked my plastic surgeon to check for any cancer. He said there was none. Did she get a second pathology at the time of her implant removal? It sounds like the there was nothing found in the breast tissue. You should get a copy of whatever she is referring to.
I wonder if there is another way to check for ER/PR receptors? Can blood work be done? Or only on actual tissue samples? Are you saying that she has NEW lymph node involvement? But you said she is in remission.
I know, you are asking the q's and I'm asking you q's too! It would be helpful to see a signature with all the history so we can get a clearer picture. I hope I was a little helpful...Anyways, get your hands on any reports from the first biopsy to the BMX and implant removal. Her tissues may have been sampled then.
June 2013 DX Stage 3 Idc, rt breast, er/pr-, her2+++
PET/CT/Brain MRI clear
ACTHP until Dec 2013
BMX Dec 2013
28 Rads Feb 2014
Exchange surgery June 2014
Herceptin end Sept 2014
Headaches start Oct 2014
CT body clear Nov 2014
Brain MRI 4 lesions Nov 2014
SRS via LINAC in Dec 2014
Rt side infection, hospitalized, lost right implant on Jan 1, 2015
Jan 14 2015 MRI brain lesions shrinking
Jan 27 2015 Re-start herceptin every 3 weeks
Feb 2015 CT/PET Body clear
Re-start Lymphedema treatment April 2015
Breast MRI clear April 2015
Brain MRI April 2015 - shows everything stable, nothing new (whew)
CT scan June 2015 - clear
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Old 04-22-2015, 11:11 PM   #3
Join Date: Feb 2014
Posts: 15
Re: Very, very confused

I meant to say in the original post that there was no lymph node involvement in the original biopsy. I did review her original biopsy report from 2 hospitals and she was found to have ER/PR-, HER2+. All her margins were clear when they did the biopsy on the breast tissue.

I am asking tons of questions to her oncologist and staff. He recommended no radiation therapy be done after her mastectomy. The breast implant that became infected was her healthy breast and not the one with cancer. She had cancer in only one breast.
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Old 04-23-2015, 05:39 AM   #4
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Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,157
Re: Very, very confused

It is important to find out if a second pathology was done after the double masectomy and if so, you want a copy of that. Since the chemo and herceptin were given before surgery, the cancer can change in some cases. The herceptin is killing off the Her2+ cells and "life finds a way" and changes to something herceptin doesn't bother. So it might have changed to hormone positive. If so, you need to know that so tamoxifen or something else can be used.

Most likely the breast surgeon is confused. They see so many people and more bc is hormone positive so she spoke out of turn. No excuse as they should look closely at your chart. But find out for sure. Call the surgeon and ask, " you said I should be on tamoxifen but I am hormone negative. Did something change? Is there a new or different pathology report?" Ask the same to the medical onc. And go from there.

Hugs to you and your sister.
Kind regards


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 15 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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