Hormone Receptors

Hi Nlunn,

Sorry that you have to be here. I have the same type of cancer. My heart goes out to you as the period of going through those scans was easily the most terrifying in my life. I had 8 biopsies and every scan you can imagine and they just kept finding more cancer each time. The PET scan to find out if it has spread elsewhere was so scary, I got through the waiting by surrounding myself with the people I care about and doing things that take my mind off it like watching TV and playing video games. We celebrated when I was told that it hasn't gone anywhere else (although it's in a bunch of lymph nodes). It gets much easier once you really know exactly what you're dealing with and what the treatment is going to be.

Like you I am young (36) and breast cancer had never crossed my mind. I am too young for mammograms and my tumors could not be felt in a clinical exam. After 5 months of flaky (painless) skin on my nipple I was lucky to find a dermatologist that didn't dismiss me because I am young and actually did a biopsy. Probably saved my life.

I am halfway through neoadjuvant chemo. My oncologist says that for this type of cancer (high grade, HER+), chemo is EXTREMELY effective. She says she's never seen this type of cancer not respond either completely or "almost" completely before surgery. Chemo targets cells that are dividing rapidly so it works best with aggressive cancers. Herceptin and Perjeta have also made HER+ cancer one of the most treatable types. To my mind the main worry is whether it will come back after treatment, that fear never quite leaves me.

My chemo is 5 months total. 4 rounds of Adriamycin/Cytoxan every 2 weeks, then 12 rounds of Taxol/Herceptin/Perjeta every week. Side effects depend on what drugs you get. On the AC, had about 4 days in bed with bone pain, fatigue, digestive issues (controlled with meds) followed by 10 days of feeling near normal each time. Just started Taxol and I'm finding it more tiring, but no digestive problems. Other side effects, hair loss and constant hot flashes from chemo induced menopause.

Fingers crossed for you that you get good news from the PET scan

Hi Nlunn27:

My understanding is you had an incisional biopsy only and no biopsy of underarm lymph nodes yet. Is that correct?

I read your pathology report here:

https://community.breastcancer.org/forum/5/topics/...

Presumably, you have also received a supplementary report containing the test results for ER, PR and HER2 status only.

Unless there is more to the pathology report (part of report not posted), or another report referring to skin involvement, or you have visually evident or palpable involvement of the skin, I do not read anything in the report content that you have posted that would suggest to me either evidence of skin involvement or lymph node involvement.

I am a layperson only. However, the reference to the sections showing "skin with underlying fibrofatty breast tissue" seems to me to be just a gross description of the tissue removed (two types: skin and breast). It is not a statement of skin involvement.

It goes on to say "Breast tissue contained a tumor . . ." This implies to me as a layperson that the tumor is in the fibrofatty breast tissue.

I would understand "desmoplastic stromal reaction" to be a growth of fibrous tissue in breast stroma around the tumor, not a reference to skin.

As I noted in the other thread, it appears that you had an incisional biopsy of breast tissue only. I see no indication of "possible lymph node involvement". Instead, what was observed was "lymphatic invasion by tumour", based on the observation that "Lymphatic channels contained foci of tumour." In my layperson's understanding, this is not an indication of any regional node involvement (which remains to be assessed by sentinel node biopsy). Instead it indicates some local vascular or lymphatic system invasion, also referred to as "lymphovascular invasion" or "LVI" (in this case, of lymph channels). You can find a brief explanation of it here, where it is clearly stated that it is not a finding of lymph node involvement:

http://www.breastcancer.org/symptoms/diagnosis/vas...

Perhaps you have received more information than you have posted that establishes that cancer has migrated to the skin? But unless you have another pathology report clearly stating skin involvement, clinically evident involvement, and/or your medical providers told you that you have skin involvement or are estimated stage III, please do not assume it based on the pathology report content that you have posted.

To obtain expert and definitive advice on point, please do not hesitate to call your doctor's office and request a call-back for an explanation of whether there is any evidence or possible suspicion of skin involvement (e.g., suspicion based on margins of the IDC), either clinically or based on pathology findings.

Best,

BarredOwl

does anyone know if it is bad to have negative progesterone ? is it something that needs to be supplemented? my surgeon orrdeed a oncotype that showed score of 18 and estrogen at 10.1 positive and progesterone 5.1 negative and Her2 9.4 negative .

Hi april1964:

Those sound like the individual ER, PR, and HER2 scores from the Oncotype test for invasive disease. See Page 3 of 3, "Quantitative Single Gene Report" on the sample Oncotype report here:

http://breast-cancer.oncotypedx.com/en-US/Professi...

The values for each individual score that are considered "negative" or "positive" are printed in the orange and green bars for each range, and differ for ER, PR and HER2.

Generally, you should look to your surgical pathology report for an understanding of your ER, PR, and HER2 status.

ER and PR as determined by IHC (immunohistochemistry) by the pathologist on surgical samples are typically used to determine ER and PR status for the purpose of endocrine therapy, because IHC is more sensitive than the RT-PCR method of Onctoype. The standard pathology methods and the RT-PCR method of the Oncotype test are quite different, so the results cannot be directly compared.

Similarly, the individual HER2 Oncotype score has only limited applicability. The individual Oncotype DX HER2 score (by RT-PCR) may yield false-negatives for HER2 status, and should not be relied upon as a sole method of determining HER2 status. Your HER2 status should have been determined by another validated method, such as IHC or FISH, and should be reported on the surgical pathology report as well.

If you do not have a copy of your complete pathology report, describing the size of the tumor, node status determined from sentinel node biopsy, ER and PR status by IHC, and HER2 (e.g., by IHC or FISH),surgical margins, etc., please request a complete copy of the report, including all addenda or supplements, and confirm that each of ER, PR and HER2 were all determined using a test other than Oncotype.

BarredOwl

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Sample references re concerns about use of individual Oncotype HER2 score:

http://onlinelibrary.wiley.com/doi/10.3322/caac.21...

FDA document, pp. 14 -15: http://www.fda.gov/downloads/AboutFDA/ReportsManua...

Note that the concern about false-negatives is limited to use of the individual HER2 score. It does not affect the Oncotype DX multi-gene Recurrence Score ("RS"), which is the central output of the Oncotype test for HER2-negative patients (whose HER2-negative status has been appropriately determined by IHC and/or FISH).

Hi april1964:

The numbers won't be the same (because the tests are not directly comparable), but hopefully it will say ER-positive and HER2-negative (which makes one eligible for the Oncotype test). It is very important to obtain the surgical pathology report and confirm its contents on these receptors (and nodal status and margins). Don't hesitate to ask more questions, if something is unclear.

BarredOwl