1. < Breast Cancer

Invasive ductal carcinoma (IDC): Anyone else?

Posted by 6750 @6750, Mar 2, 2019

I have rec’d 4 chemo + 16 radiation treatments for invasive. Has lumpectomie 1st....then one week later...
Dissection 17 lymph nodes & 3 tumors removed tumors
Got clean margin.

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anjalima | @anjalima | Sep 30, 2022
In reply to @jussnunu "Hello everyone . Thank you so much for all the support . I was seen by..." + (show)
@jussnunu

Hello everyone . Thank you so much for all the support . I was seen by a surgeon oncologist today . She said I am at Stage 1 , and she doesnt think that it has spread yet. She ordered an MRI and we will decide on surgery from the report . She gave me 2 options:
Segmental mastectomy + radiation + med or Total mastectomy - radiation + med . As for chemo , she think I might not need it only if it has spread to lymph nodes then yes.

I am only in my 30s and I really dont want a total mastectomy so I lean towards segmental mastectomy but since I have breast implants, she suggest that I have to take it out due to radiation will cause capsular contracture and maybe rupture as well. Im really sad about this too.

I really want kids and taking tamoxifen I cannot have kids and taking meds for 5 years is too long. I am planning to discuss with my medical oncologist to see if i can just have surgery + radiation and try to get pregnant right away and after that can i take meds.

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I hope the MRI puts any further diagnostic questions to rest. Sounds like a good plan. There is also the possibility of harvesting eggs which is an option for some women if medication cannot be postponed long term. Is the tumor estrogen positive?
Hoping for The best outcome for you. Keep this group in mind if you need to run some concepts by those of us who have “ been there” and “ are here” in the journey with you. Hugs

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polianad22 | @polianad22 | Oct 1, 2022

@6750 Ductal carcinoma in situ, invasive, HER2 negative, ER positive. I have two tumors in my left breast under 2cm. My surgeon shared that most likely I have it my lymph nodes.

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1 reply
polianad22 | @polianad22 | Oct 1, 2022
In reply to @terryflys4 "invasive ductal carcinoma left breast stage 2, grade 1. Surgeon concerned about right breast and thought..." + (show)
@terryflys4

invasive ductal carcinoma left breast stage 2, grade 1. Surgeon concerned about right breast and thought there might be more growth in left. I have 90 minute one way drive to best area to get help-so decided against getting MRI, went ahead with double mastectomy. Post op yesterday she said my instincts were right and that I’m a conundrum. Instead of another lump in left breast I have many tumors so small they would not show on MRI, also in right breast. I could not take anastrazole due to debilitating side affects (I’m 77 with spine degeneration but otherwise good health). My tumor is not following normal staging and they are doing more advanced tests. She recommends radiation on both breasts, then tamoxifen that apparently strengthens bones as well. I live alone and quality and independence are everything to me at this point. I’m concerned about heart and lung damage from 4 weeks of radiation, have same driving distance issues and would have to spend nights in hotel. Im concerned about destroying my white blood cells in the middle of a pandemic. Am just starting researching and will be interviewing 3 radiation oncologists. At the moment, considering the challenges I’m thinking of taking a chance on just the tamoxifen.

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@terryflys4

When you do radiotherapy, radiation please stay on your belly. I just saw this video that explains how to avoid heart or lungs damage: https://youtu.be/syUlIvOoZsU

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kathyomaha55 | @kathyomaha55 | Oct 1, 2022
In reply to @jussnunu "Hello everyone . Thank you so much for all the support . I was seen by..." + (show)
@jussnunu

Hello everyone . Thank you so much for all the support . I was seen by a surgeon oncologist today . She said I am at Stage 1 , and she doesnt think that it has spread yet. She ordered an MRI and we will decide on surgery from the report . She gave me 2 options:
Segmental mastectomy + radiation + med or Total mastectomy - radiation + med . As for chemo , she think I might not need it only if it has spread to lymph nodes then yes.

I am only in my 30s and I really dont want a total mastectomy so I lean towards segmental mastectomy but since I have breast implants, she suggest that I have to take it out due to radiation will cause capsular contracture and maybe rupture as well. Im really sad about this too.

I really want kids and taking tamoxifen I cannot have kids and taking meds for 5 years is too long. I am planning to discuss with my medical oncologist to see if i can just have surgery + radiation and try to get pregnant right away and after that can i take meds.

Jump to this post

Is it ER and PR+? I assume so if they are suggesting tamoxifen. Wow - I was 62 when diagnosed, so I don't have much advice for you. I had a lumpectomy and radiation. Make sure you get the Oncotype DX test - a test on the tumor removed (from the biopsy). That tells you the likely hood of a reoccurrence. If it's high - you will need chemo, to lower the risk of reoccurrence. Are you getting a genetic study? I really recommend it. I recently met a woman that had BRAC1 & BRAC2 genes and is in her 30's and now has metastatic cancer in her bones. She had a complete hysterectomy. Make sure you trust the oncologist you have - you have to have confidence in the info she gives & trust her treatment recommendations. I had a team of doctors - surgical, oncologist, and radiation & saw all 3 for several years. They met & together decided on the recommended treatment. I still see the oncologist 2 times a year (for 5 years). Good luck in your decisions.

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anjalima | @anjalima | Oct 2, 2022
In reply to @polianad22 "@6750 Ductal carcinoma in situ, invasive, HER2 negative, ER positive. I have two tumors in my..." + (show)
@polianad22

@6750 Ductal carcinoma in situ, invasive, HER2 negative, ER positive. I have two tumors in my left breast under 2cm. My surgeon shared that most likely I have it my lymph nodes.

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So you are Hormone Positive ( ER/PR) HER 2negative. I was also and had 2 tumors ( undetected by mammo and ultrasound 3 mos before my diagnosis!) thought yo be 1-2 cm but were 3 and 4cm.

BE AWARE: do not take any anti hormone medication known as AI’s which are aromatase inhibitors ( which will likely be recommended for you ) until you get the tumors typed by ONCOTYPE. It has come up that the taking of AI’s before biopsy or surgical samples can eliminate the chance of having an ONCOTYPE test performed on the tissue. The ONCOTYPE is THE diagnostic tool to determine whether chemo is needed. In my case, it was not.

Age and pre/post menopause has a lot to do with the chemo calculation. Generally a Score of 25 and up to 100 suggests chemo for post meno. . Score of 18 and up for pre-meno. There are unique variations.

I am 71 and athlete body type (had a few extra pounds ) and menopausal for 20 years but somehow my estrogen production capabilities never got the memo!

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1 reply
polianad22 | @polianad22 | Oct 2, 2022
In reply to @anjalima "So you are Hormone Positive ( ER/PR) HER 2negative. I was also and had 2 tumors..." + (show)
@anjalima

So you are Hormone Positive ( ER/PR) HER 2negative. I was also and had 2 tumors ( undetected by mammo and ultrasound 3 mos before my diagnosis!) thought yo be 1-2 cm but were 3 and 4cm.

BE AWARE: do not take any anti hormone medication known as AI’s which are aromatase inhibitors ( which will likely be recommended for you ) until you get the tumors typed by ONCOTYPE. It has come up that the taking of AI’s before biopsy or surgical samples can eliminate the chance of having an ONCOTYPE test performed on the tissue. The ONCOTYPE is THE diagnostic tool to determine whether chemo is needed. In my case, it was not.

Age and pre/post menopause has a lot to do with the chemo calculation. Generally a Score of 25 and up to 100 suggests chemo for post meno. . Score of 18 and up for pre-meno. There are unique variations.

I am 71 and athlete body type (had a few extra pounds ) and menopausal for 20 years but somehow my estrogen production capabilities never got the memo!

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100 rounds of chemotherapy? Did you do lumpectomy or mastectomy?

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2 replies
polianad22 | @polianad22 | Oct 2, 2022
In reply to @anjalima "Jussnunu, hi, and I’m very sorry to hear of your diagnosis. I too was diagnosed with..." + (show)
@anjalima

Jussnunu, hi, and I’m very sorry to hear of your diagnosis.

I too was diagnosed with IDC in January; right breast. I had two tumors ( much bigger than yours) so the placement eliminated any possibility for a lumpectomy, but it may possible for you. I had a unilateral mastectomy with 8 nodes dissected ( removed). I did not need chemotherapy based on a typing called ONCOTYPE.

I was terrified when I got the diagnosis and can easily relate to how you feel right now and I too assumed chemotherapy and hair loss ( 5 months before my daughters wedding) was in my immediate future. But as it turned out it wasn’t!

So, the advice I offer, until you have more information, is that you understand that there are lots of variables and no one plan fits all. Allow all the fears and anger and incredulity to have their time to be expressed and then Take a deep breath and step back into Gentle Warrior Mode.

You must educate yourself so that you can self advocate. And pull in a trusted support person who can help you sort through the information and help you make decisions… you will need to make decisions.

Based on the biopsy some information is available but some needs further analysis ( likely requested) . So, are you waiting for any test results now?

Most important is to get the earliest possible appointment with an oncologist. Also of note, IF you are hormone positive you will likely be taking a hormone blocking med. I encourage you to ask your oncologist if you are a candidate for an ONCOTYPE analysis . If you are a candidate there are concerns about starting the hormone blocker before an adequate tissue sample is taken. It may negate the ability for ONCOTYPE analysis.

Questions to ask :
-Stage of cancer?
-Grade?
-Hormone positive or negative?
-HER 2 Positive or Negative?
-genetic based gene mutation?
-Node involvement ?
-am I a candidate for ONCOTYPE DX?

So many factors determine treatment. The good news ( in the not good news) is that treatments have improved greatly over the years and are being tailored to individual situations.

If you are physically close to a major Breast Cancer Center like MEMORIAL SLOAN KETTERING, MAYO CLINIC, MD ANDERSON, Montclair Breast Center etc. these are GREAT OPTIONS. Many large hospitals have cancer centers with Breast Cancer specialists too.

Lots of great information at SusanGKomen .org.

This is tough and web are here for you!

Please keep us posted. 🌸

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Thank you for the info

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anjalima | @anjalima | Oct 2, 2022
In reply to @polianad22 "100 rounds of chemotherapy? Did you do lumpectomy or mastectomy?" + (show)
@polianad22

100 rounds of chemotherapy? Did you do lumpectomy or mastectomy?

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Unilateral right breast mastectomy. No chemo. ONCOTYPE 14 and 20. After a ton of research and the fact that I qualified for the TAILOR RT clinical trial ( AI only or AI plus standard fraction radiation) I declined radiation am doing AI only . 6 mos on Aromatase Inhibitor ( Anastrozole) and tolerating well . Unknown possible side effects will emerge over time ( inc. cholesterol and/or reduced bone mineral density).

What is your age? Did you get the ONCOTYPE scheduled ?

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2 replies
polianad22 | @polianad22 | Oct 2, 2022
In reply to @anjalima "Unilateral right breast mastectomy. No chemo. ONCOTYPE 14 and 20. After a ton of research and..." + (show)
@anjalima

Unilateral right breast mastectomy. No chemo. ONCOTYPE 14 and 20. After a ton of research and the fact that I qualified for the TAILOR RT clinical trial ( AI only or AI plus standard fraction radiation) I declined radiation am doing AI only . 6 mos on Aromatase Inhibitor ( Anastrozole) and tolerating well . Unknown possible side effects will emerge over time ( inc. cholesterol and/or reduced bone mineral density).

What is your age? Did you get the ONCOTYPE scheduled ?

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I am 47 years old next Saturday.

Here is my history:

8/15 - Had a random mammogram. Didn't do one since 2016
8/17 - They called me to come back for another mammogram and ultrasound
8/23 - A second mammogram was performed + ultrasound. The radiologist told me that I have three masses in my left breast, one is cancerous. It was the hardest day (days) in my life.
9/7 - Had a biopsy at Mount Sinai
9/9 - Received the report that said: two cancerous masses in my left breast: Ductal Carcinoma in Situ, invasive, Her2 - negative, ER - positive. Tumor sizes under 2.5cm one and the other under 1.5cm
9/21 - Met with the surgeon Dr. Elisa Port from Mount Sinai. She is a good surgeon, but I would like to see Dr. Alexandra H.
10/13 - Meeting with Dr. Alexandra H. - Memorial Sloan Kettering. It feels right to meet her for a second opinion. I might choose her as a surgeon.

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1 reply
polianad22 | @polianad22 | Oct 2, 2022

When do I have to schedule the Oncotype DX test ?

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