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Topic: Before DCIS/LCIS, diagnosed with IDC today

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Sep 1, 2020 02:44PM

barbaraprevost4 wrote:

I am 46 years old. I had 2 lumpectomies as I had nipple discharge last year. DCIS was found in the first one. I had a second lumpectomy to clear the margins and more DCIS and LCIS were found. I underwent a BPMx Aug 13/2020. Today I went for the results:

Right breast: ADH.

Left breast: IDC 4mm, ER/PR +. HER -. DCIS 6 cm, grade 2, small foci or single cell necrosis.Left sentinel lymph node 1/7 positive for micrometastasis 0.3 mm.

I am referred to a MO. Should I have a Pet scan ? Will I receive chemotherpay? IV or oral ? Or what is the difference. I am in Canada. Thank you for your help !

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Sep 1, 2020 03:16PM moth wrote:

Ime we don't do PET scans often in Canada. They usually don't even do CT unless there are clinical suspicions of mets (through history, physical exam and bloodwork)

You might qualify for Oncotype dx testing - I think it depends on provincial guidelines. Btw - There is a forum for Canadians and subforums for provinces if you want to connect with peeps local to you

Seriously???? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." nevertellmetheodds2017.tumblr.... Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab)
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Sep 1, 2020 03:30PM barbaraprevost4 wrote:

Thank you Moth! I am so scared to have mets, or other cancers/ tumors in my body.


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Sep 1, 2020 03:45PM - edited Sep 1, 2020 03:48PM by Beesie

Ah, I'm so sorry your diagnosis was upgraded.

PET scan? No. Scans are not normal protocol for early stage diagnoses and I know for sure that they are not given to early stagers in Ontario.

Chemo? With a 4mm tumor and micromets, probably not. But with the micromets, you are border line. It may depend on how strongly ER and PR you are. If your cancer is highly ER/PR positive, then endocrine therapy, either Tamoxifen or ovarian suppression & an Aromatase Inhibitor, is more likely than chemo. But if the ER/PR is low, then chemo might be recommended. Some people call endocrine therapy oral chemo but I think that is a misnomer. Pretty much everyone with an ER+ invasive cancer will be recommended to have endocrine therapy.

One option would be to have an Oncotype test done, but in Ontario usually that's only done with tumors of 5mm or greater. Your tumor is just slightly smaller but with the micromets in the node, maybe your MO will make an exception and order an Oncotype test. This test looks at the genetic make up of the cancer cells (they assess 21 different factors, from ER, PR and HER2 to some pretty obscure stuff) to determine the aggressiveness of the cancer and whether, with consideration to metastatic recurrence risk, the patient would benefit from chemo + endocrine therapy, or whether endocrine therapy alone will be equally effective.

Here are two pages from the Ontario treatment guidelines. The pages are marked "in review" but I believe this is the protocol that is currently followed. You can see that you fall right on the line both on tumor size and with the micromets.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 1, 2020 03:59PM ShetlandPony wrote:

If testing and treatment can be influenced by the individual oncologist, I think she/he might consider your relatively young age/premenopausal status as an argument for Oncotype testing if there is enough tissue, and for treating a little more aggressively — perhaps ovarian suppression plus aromatase inhibitor or tamoxifen, rather then just tamoxifen.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD
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Sep 1, 2020 04:05PM barbaraprevost4 wrote:

Thank you for the ingormation and for the guidelines Beesie ! Is difficult, everytime I go for an appointement I have bad news and the news worsen each time. I feel it will never end.

Thanks for your support


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Sep 1, 2020 04:20PM barbaraprevost4 wrote:

Thank you ShetlandPony !

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Sep 1, 2020 09:18PM barbaraprevost4 wrote:

Hi Beesie,

I was reading the Ontario guidelines. You said:

You can see that you fall right on the line both on tumor size and with the micromets.

I don't understand, can you please explain this to me ? my tumor was 4mm and the microinvasion in the sentinel node is 0.3mm.

I am so scared to have mets and cancer in other parts of my body.

I forgot to mention that ER 95%positive

PgR 90%

HER2 negative

Thanks so much!


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Sep 1, 2020 10:21PM Beesie wrote:

Barbara, your high ER and PR mean that it's unlikely that chemo will be recommended. With such a high ER and PR, your tumor should be very receptive to endocrine therapy which means chemo will likely provide little if any benefit.

As for what I meant when I said you are falling right on the line, from Ontario guidelines, take a look at these considerations of chemo:

  • Lymph node positive: one or more lymph nodes with a macro-metastatic deposit (>2 mm)
  • High-risk lymph node negative tumours with T size >5 mm and another high-risk feature (see next recommendation, R5)

Well, you are technically lymph node positive, but you have micromets not macromets. And your tumor is 4mm, just a bit smaller the >5mm cut-off (greater than 5mm could be as small as 5.1mm). The R5 list referenced in the second bullet mentions LVI as a factor that might indicate chemo with a >5mm tumor. You don't have lymphovascular invasion (or you haven't mentioned it) but you do have the micromets.

And here:

Patients with the following disease characteristics may not benefit from adjuvant chemotherapy:

  • T <5 mm, lymph node negative and no other high-risk features (see R5)

You have a <5mm tumor but you aren't node-negative, so based on this, where do you stand? With a 4mm tumor that is node positive (but only micromets), you seem to fall in-between their "no chemo benefit" and "consider chemo" guidelines.

I completely understand your fear that you might have mets. That fear is normal - probably everyone diagnosed with invasive breast cancer gets hit with the same fear. So remember this - your diagnosis is more favorable than the vast majority of invasive cancer diagnoses. Tumors as small as 4mm aren't usually found - it's only because you had the DCIS that this tumor was found. And yes, you have the micromets, but a 0.3mm micromet is a hair width larger than a 0.2mm ITC (isolated tumor cells) and nodal ITC is actually considered node negative. Even micromets... in the past any nodal involvement automatically moved the staging to at least Stage II. But around 2011, a new Stage IB category was created specifically so that those with micromets could be moved into Stage I - because the research says that the prognosis is equivalent to Stage I. And in 2018, a second staging methodology came out, Pathological Prognostic Stage, which is used in addition to the traditional TNM (Tumor, Nodes, Metastasis) staging. Based on this new staging methodology, you are Stage IA. That's based on prognosis.

So yes, it's normal to be afraid that you might have mets. But the odds that you do are extremely small. Only 5%-6% of all breast cancer patients are diagnosed with Stage IV de novo (i.e. Stage IV at time of diagnosis) and I doubt there are many with a cancer as small and a diagnosis as favourable as yours.

I hope your MO appointment goes well and you are reassured by the discussion.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 1, 2020 10:37PM barbaraprevost4 wrote:

Thanks again for all your help and support Beesie!



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