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Topic: Invasive and Rare - Two words I wasn't ready for

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

Posted on: Aug 22, 2020 09:10AM

RockysOwner wrote:

Received the biopsy result. "Invasive Apocrine Carcinoma" it is "rare", less than 1%. It is the "rare" comment most concerning. How am I going be confident in a successful outcome? If anyone has experience in this, please share.

So Rare
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Aug 22, 2020 09:25AM - edited Aug 22, 2020 09:36AM by ShetlandPony

Hello, RockysOwner. With anything out of the ordinary, I recommend consulting at one of the NCCN (National Comprehensive Cancer Network) institutions. They are the experts who provide guidance to the rest.

That word “invasive" sounds so awful, but it simply describes cancer that is not in situ; in other words it is outside the duct or lobule in the breast. All breast cancer other than DCIS, sometimes considered a pre-cancer, or LCIS, considered only a marker of risk, gets this description.


University of Wisconsin Carbone Cancer Center
Madison, Wisconsin
608.265.1700
www.uwhealth.org/cancer

Make an appointment

Established and designated by the National Cancer Institute (NCI) as one of the original comprehensive cancer centers in 1973...

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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Aug 22, 2020 09:35AM ShetlandPony wrote:

Here is a link to the list, in case one in a neighboring state is closer to you.

https://www.nccn.org/members/network.aspx


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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Aug 22, 2020 10:07AM KMom57 wrote:

Rockys Owner.I sent you a PM.

Dx 10/2019, ILC, Left, 2cm, Stage IIIA, Grade 2, 8/11 nodes, ER+/PR+, HER2- Hormonal Therapy 11/6/2019 Femara (letrozole) Surgery 2/15/2020 Prophylactic ovary removal Surgery 5/18/2020 Lymph node removal: Left; Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 7/31/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 22, 2020 10:55AM MinusTwo wrote:

Good idea to get a second opinion at an NCI hospital.

Although we all usually recommend that you don't google, there are a few trusted sites/hospitals. Here's something from John's Hopkins. I also usually trust Mayo.

If I'm reading it right, these type of IDC tumors "are less likely to involve the lymph nodes, are more responsive to treatment, and may have a better prognosis than more common types of invasive ductal cancer." Sounds positive.

https://www.hopkinsmedicine.org/kimmel_cancer_cent...


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 22, 2020 01:56PM Beesie wrote:

"Rare" simply means that the subtype of breast cancer that you have isn't very common - it represents about 1% of all breast cancer diagnoses (although I saw up to 4% in a couple of articles).

With approximately 2 million cases of breast cancer diagnosed globally every year, even if Invasive Apocrine Carcinoma represents only 1% percent of all breast cancers, that's still 20,000 cases a year. Or 100,000 cases over 5 years, which is enough that there is an understanding about how to treat this breast cancer subtype.

"Rare" does not mean bad. In some cases a rare subtype might be associated with worse outcomes but in other cases a rare subtype might present a more favorable prognosis. As per the link MinusTwo provided, Invasive Apocrine Carcinoma appears to be more favorable that similar invasive ductal carcinomas.

So don't get hung up on the words. Focus on the specifics of the cancer - the size, the grade, the hormone status, the HER2 status, the nodal status.

Have you talked with a Medical Oncologist or do you have an appointment scheduled? Since this is a rare subtype that is usually either triple negative (ER-/PR-/HER2-) or HER2+ (ER-/PR-/HER2+), getting the entire pathology from the biopsy and consulting with an MO prior to surgery is probably advisable.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Aug 22, 2020 06:46PM RockysOwner wrote:

A big thank you to all who provided positive feedback. I have first appointment post biopsy in a few days with an Oncology Surgeon at the Froedtert & Medical College of WI located in Milwaukee. (My spouse went there for successful treatment of Esophageal Cancer 10 years ago.)

Hoping for a good outcome with my disease as well. Their Breast Cancer Program utilizes a team of specialists so I'll also be seen by a Medical Oncologist, Radiologist, and others.

I do however plan on obtaining a second opinion and will probably look to Johns Hopkins for this.

So - again thanks to all. I expect a better night's sleep tonight.

So Rare
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Aug 23, 2020 08:38AM MinusTwo wrote:

Best of luck. Please do check back in and let us know how it goes.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Aug 26, 2020 07:42AM claireinaz wrote:

I remember 48 hours after I had my excisional lumpectomy. I went to my appt with my general surgeon, who shared that my dx was "rare and aggressive". I heard those words; then the world went black and I stopped listening pretty much after that. However, after a few days of research, armed with my copy of the pathology report, I realized that ILC isn't rare, but simply less common than IDC--and that the Nottingham score added up to about a high grade 1--not aggressive. His clumsy choice of words caused unnecessary harm, as you can imagine-but doctors can be as bumbling and thoughtless in their exchanges with us as anyone else. On top of that, he was a general surgeon, and spoke out of turn as well since he wasn't specialized in oncology.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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Sep 7, 2020 07:01AM RockysOwner wrote:

I now know I have triple-negative; invasive apocrine carcinoma; 1.8 centimetres; grade 3, stage one. I have met with Surgeon and Medical Oncologist who upon clinical examination, do not feel lymph node involvement. Only surgery will confirm.

In preparation I've visited dentist for teeth cleaning and received the flu immunization. As of now, my treatment plan is to start with surgery; then follow-up with chemo therapy.

I am awaiting results of genetic testing; and a second opinion...both in process.

Hoping to finalize treatment plan and set date fur surgery at next appointment September 15th.

FYI: I am 70 years old; in good health; and continue to follow scientific and medical advice regarding COVID 19 avoidance.



So Rare
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Sep 7, 2020 06:09PM MinusTwo wrote:

Rocky'sOwner - so sorry for the diagnosis. Glad you've met with a BS and an MO and are getting "housekeeping" things taken care of. I had my BMX at at 67 and my ALND surgery at 69. Although I do have some issues, it's been 8 years. I'm walking 4 miles every morning & basically doing whatever I want (aside from Covid). Wishing you the best.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014

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