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Topic: Occult Triple-Negative Breast Cancer

Forum: Triple-Negative Breast Cancer —

Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 30, 2019 04:28AM

BCBBadour1 wrote:

Hello is there anyone out there who have been diagnosed with Occult Triple-Negative Breast Cancer? I was just diagnosed with occult TNBC. This means they cannot find the primary cancer.

Back in 2000 I had been diagnosed with ER/PR + breast cancer and underwent a radical mastectomy, port placement, chemo, radiation and finally 10 years of Aromatase inhibitors. So now I have a new cancer totally unrelated to the first cancer. What are the chances??? I'm still in shock and trying to wrap my brain around this. At least the first bout of cancer has not come back.

I live in Phoenix and just retired about a year ago. My husband and I planned on spending summers at our lake house in Michigan, but it looks like we will remain in Phoenix getting treatment at Mayo Clinic. Don't get me wrong I am so grateful to have Mayo here, but I sure would like to enjoy a long life in the retirement we saved and planned for. So here is my what they have found so far.

In January 2019 I was found to have a right axillary abnormality. I underwent mammography in January 2019 which reportedly demonstrated a 7 mm group of linear calcifications in the right axilla. I was advised to have 6 month follow-up imaging but due to scheduling requirements I underwent repeat ultrasound on 05/06/19. The calcifications were again noted in the right axillary lymph node and ultrasound guided biopsy was recommended.

Right axillary node needle biopsy obtained on 05/08/19 revealed the following:

Right axillary lymph node, biopsy:
High grade carcinoma with extensive necrosis, meaning it is fast growing.

On May 24th I was given a PET/CT scan and no cancer was found in my body other than in the right axilla. As soon as they can schedule me, I will be treated with chemo once a week for 12 weeks with Carboplatin (trade name Paraplatin) and Paclitaxel (Trade names Taxol, Onxal).

My oncologist visit was very positive and I felt much better after discussing our plan of attack. Is there anyone out there who can share their story with me. I'm so glad that I found this site and other women going thru similar situations. God Bless us all.

Thank you...

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May 30, 2019 05:01AM santabarbarian wrote:

Question-- is there any way it could be a morphed recurrence of the first cancer? Doesn't the cancer sometimes change form?

The good news is high grade TNBC is very responsive to chemo! Glad you caught it fast and good luck!!!!

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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May 30, 2019 06:16AM Beesie wrote:

I agree with SantaBarbarian, this could be a morphed recurrence of your earlier breast cancer. Hormone status does sometimes change when a cancer recurs and/or spreads. Is the cancer in the nodes on the same side as the previous diagnosis, or the contralateral side?

That said, to your question, "What are the chances?", in fact for any of us diagnosed with breast cancer one time, our risk to be diagnosed with a new unrelated primary is actually quite high. At the time of my first diagnosis, my oncologist told me that my risk to be diagnosed with breast cancer (again) was approx. double that of an average woman of the same age. I've seen studies that put the risk even higher than that. So for me, my risk was at least 20%, and with extremely dense breasts, probably higher than that. Additionally, as with all women, our risk to develop breast cancer is highest in our 60s and 70s. So it's not the number of years since the previous diagnosis that matters, but the fact that we are getting older and like all women, face our highest risk of breast cancer during those two decades of life.

For those diagnosed previously, a second primary breast cancer might have the same characteristics as the first cancer, or it could be completely different. Having been on this board for over 13 years, I've seen many women return with new primaries, and often it is a different type of cancer or has a different hormone status.

So sorry that you are going through this again!

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
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May 30, 2019 08:47AM Beesy_The_Other_One wrote:

BCB, I'm truly sorry you're going through this again but hopeful with you that you'll beat this just as you have before. I took the same drugs as you will and it was on this site that I first read of women icing their hands and feet to prevent neuropathy from the taxanes. It worked for me and I noticed someone recently compiled a bunch of our recommendations into one thread, here:

Boy, Beesie, my breast surgeon tried to talk me out of a BMX saying the stats don't show that a new unrelated primary is common (this very surgeon had removed half a breast because of a Cystosarcoma Phyllodes tumor twenty-two years ago in the right breast and now I had IDC in the left--and like you, had very dense breasts). He stopped himself, realizing who he was talking to and never argued the point again. I have often wondered if I had done the BMX in 1997 with the Phyllodes tumor whether I could have developed IDC if I no longer had ducts? I understand that my BMX did not remove all my breast tissue and so there is the possibility of recurrence, but wouldn't IDC have to start in ducts? Obviously, I can't go back, but I've just wondered.

The statistic I find most alarming is that having dense breast tissue doesn't just hide cancer (as it did with me--3D mammography missed it) but it also raises a woman's risk of developing breast cancer by four to five times!

~The other Beesy :-)

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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May 30, 2019 09:40AM BCBBadour1 wrote:

Hello Santabarbarain,

Thank you for replying. They are telling me that this is a totally new cancer. My first cancer was in my left breast and left side node. This is in my right axillary node. They said I was a very rare case, but it does happen.

God Bless.

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May 30, 2019 09:53AM GlobalGal wrote:

Dear BCB,

I am very sorry to hear about your occult triple negative breast cancer. I am in a similar occult situation, but with de novo metastatic breast cancer, which was recently found in my 3 central neck lymph nodes after a complete thyroidectomy for papillary thyroid cancer in March 2019. Apparently, this is very rare.

Numerous diagnostic tests have revealed NO primary breast cancer (PET scan, ultrasounds, breast MRI, MRI-guided breast biopsy, 12 years of annual mammograms, etc.). 

I also have dense breasts.

The lack of corroboration makes me wonder if my surgical lymph node tissue was mislabeled or contaminated. However, the entire issue of is it mine or not will forever remain a mystery due to lymph tissue scarcity. There was enough to run basic staining tests (ER +, PGR +, but  not enough left to determine HER2 status (which was equivocal) via FISH testing or determine any mutations.

So, they are not recommending any surgery or radiation, just AI medication (Anastrozole).

Wishing you the best as you navigate your new diagnosis and new plan of treatment.


2019, de novo stage IV metastatic breast cancer to 3 central lymph nodes in neck following thyroidectomy for papillary thyroid cancer WITH NO PRIMARY BREAST CANCER IDENTIFIED. 10/2021, multiple multifocal liver and bone mets identified on PET scan. Dx 3/20/2019, Stage IV, metastasized to bone/liver/other, ER+/PR+ Hormonal Therapy 6/4/2019
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May 30, 2019 11:09AM Beesie wrote:

Beesy, most doctors quote numbers like 4% or 7%, in terms of the odds of someone with breast cancer being diagnosed a second time. If those numbers are correct, then it would be true that it's uncommon to develop a new primary. But there is a lot of inconsistency in the data, and after doing quite a bit of digging around on the subject, I've come to the conclusion that those numbers are simply not accurate.

Here's one study that all on it's own perfectly highlights the data inconsistencies: Second Primary Breast Cancer Occurrence According to Hormone Receptor Status

The very first line of the article states that "Contralateral second primary breast cancers occur in 4% of female breast cancer survivors". Well, that's certainly a low risk. But Oops!, the analysis then goes on to conclude that:

"Women who had survived HR-positive (i.e. ER+ and/or PR+) breast cancers had more than a twofold increased risk of a second primary tumor, and women who had survived HR- breast cancers had nearly a fourfold increased risk, compared with the age-, race-, and year-adjusted general population.".

So the report tells us that 1 in 25 (4%) breast cancer survivors will develop a contralateral breast cancer, but then explains that the risk is at least double that of the general population. As we know, the breast cancer risk for the general population is 1 in 8 (12.5%). Huh?

I believe the disconnect in the figures is due to the fact that: 1) most studies that evaluate the rate of contralateral breast cancer cover a relatively short time period, 5 years or at most 10 years; 2) most studies don't account for the fact that approx. 30% of breast cancer survivors have a BMX at the time of their first diagnosis, bringing their risk level down to just 1%-2%; 3) some studies look only at contralateral cancers and don't include new primaries that occur in the same breast as the original cancer; and 4) most studies don't factor in the mortality rate of breast cancer patients from other causes.

As more women are being diagnosed at a younger age, as more women are surviving their first diagnosis, as more women are living longer, and as more women have been taking endocrine therapy which offers a degree of contralateral protection for 7 - 8 years (based on 5 years of Tamoxifen or an AI), I believe we are starting to see a much higher rate of new primaries among breast cancer survivors who are 8+ years out, including many who are even 20+ years out. I know the women on this board are not a representative sample, but most of the second primary breast cancers I recall seeing over the past few years have occurred well beyond the time frame of most of the studies that have found such low contralateral breast cancer rates. So most of the women here would not even be included in the count. And all of the factors I mentioned would raise the rate of new primaries to well above 4% and more into the range of 'double the risk' of the average woman. And that's what the study actually found.

BCBB, my apologies for taking your thread off onto a tangent.

Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole

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