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Topic: Triple negative IDC

Forum: Triple-Negative Breast Cancer —

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

Posted on: Dec 23, 2019 10:22AM

fmdwala wrote:

Hi,

I have been diagnosed with triple negative DCIS on my right breast. I have had 3 rounds of chemotherapy with Taxol. I had a mastectomy with sentinel & axillary lymph node removal about 2 weeks ago. There is also a drainage tube attached. Drainage started with 500mL and now it is at 100mL for the past week. My surgeon suggested to remove the tube in 15 days depending on the drainage amount & rate. My oncologist wants to start chemo again in 1 week. Is it possible to start the chemo with the drainage tube attached? If not, what are the other alternatives to the drainage tube that allow me to start chemo as soon as possible. With this kind of aggressive cancer, I do not wish to wait any longer and want to start the chemo immediately. Any suggestions would be very helpful. For those people diagnosed with triple negative DCIS like me, during the chemo which drugs did they use and how many treatments did you receive?

I appreciate any and all advice on this.

Thank You

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Dec 23, 2019 11:06AM MelissaDallas wrote:

fmdwala, I am confused. You must have invasive triple negative cancer. You would not receive chemotherapy for non-invasive DCIS.

LCIS, extensive sclerosing adenosis, TAH/BSO & partial omentectomy for mucinous borderline ovarian tumor. Dx 5/20/2012, LCIS, Stage 0, 0/0 nodes
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Dec 23, 2019 11:53AM Beesie wrote:

fmdwala, to my other reply to you in the DCIS forum, you are in the right forum now.

But to Melissa's post, what might be confusing to readers is that you have identified your diagnosis as being DCIS. The fact that you will be having chemo confirms that your diagnosis is IDC, not DCIS, because chemo is never given when the diagnosis is only DCIS. When DCIS and IDC are found together, because the DCIS is the less serious condition, it's pretty much ignored and the diagnosis is considered IDC. With the IDC, the fact that you also had DCIS doesn't factor at all into your treatment plan, other than the fact that the area with DCIS did need to be surgically removed. Everything else is based on treating triple negative IDC.

Hopefully someone will come by soon to offer advice, although the site does tend to be slow around the holidays.

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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Dec 23, 2019 08:06PM fmdwala wrote:

Hi Melissa & Beesie,

Thank you for responding. I double checked my reports and it states "Ductal Carcinoma Right Breast." So, I believe you both are right? Nevertheless, my lymphatic drainage has been 100mL consistently for the past week. Is that normal and if so, when will the drainage complete? My oncologist would like to start chemo by Jan 1st, but my onco-surgeon says the tube won't come out for another 15days. Any advice is much appreciated!

Thank You and Happy Holidays!

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Dec 23, 2019 08:12PM MinusTwo wrote:

There is no "right" time when drainage ends. My drainage lasted 3 weeks with two tubes. It's definitely better to get all the fluid out first. But I don't think it's "lymphatic" drainage. It just all the bodily fluids from the surgical site. Below from a UC surgery site:

Your surgeon will usually remove the bulb when drainage is below 25 ml per day for two days in a row. On average, JP drains can continue to drain for 1 to 5 weeks.

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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Dec 23, 2019 08:17PM fmdwala wrote:

Hi MinusTwo,

Thank you for sharing! So, from the numbers you have provided, it is not alarming if the drainage is occurring slowly. On a side note, did you also get a PET scan done to check for mets? I have not received one and after doing some research online, I should get one to check for bone or other mets.

Fmdwala

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Dec 23, 2019 08:45PM Beesie wrote:

fmdwala,

Yes, DCIS is "ductal carcinoma in situ" so if your report says "ductal carcinoma" then the diagnosis is IDC.

Sorry that your drains are still going strong. Have you spoken to your Plastic Surgeon? If not, I would suggest that you do. The following study suggests that the risk of infection goes up if drains stay in too long, and that it is preferable to remove drains even if the drainage is above the recommended 30mL. I don't know if chemo can start if you have the drain, but that would be another reason to remove the drain even if the drainage hasn't reduced as much as desired. At 100mL your PS might not be prepared to remove the drains yet but perhaps the drainage doesn't have to go down to 30mL for removal. I don't know, but you should talk to your PS.

Risk of infection is associated more with drain duration than daily drainage volume in prosthesis-based breast reconstruction https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5266056/#!po=45.6522

"In summary, our study revealed that drain duration, rather than the last daily drainage volume, significantly affects the infection rate in prosthesis-based breast reconstruction. We recommend that the drain is better removed no longer than 3 weeks postoperatively and can be removed as early as postoperative day 7, even when the drainage is over 30 mL in a 24-hour period."

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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Dec 23, 2019 11:30PM MinusTwo wrote:

fmd - It would be good if you change the title of your thread to "Triple negative IDC" - which better shows the reality and would allow people to comment more accurately.

As Beesie says, you don't want to leave the drains just hanging. If your drainage is below 25ml you should definitely talk to your doc.

As for testing, every doc is different. My MO did every test before, during & after - including PETs. You probably don't want to keep searching on Google. There is lot of good information on this site and people to give you support. There is a December and a January chemo thread. That will answer your questions about what drugs are used. There are monthly or quarterly surgery threads that will have discussions about healing & drains. Those thread have women & men posting who are going through the same things you are in real time.

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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Dec 26, 2019 05:52PM Moderators wrote:

Hi again fmdwala,

We wanted to check in on you and see how you're doing and if you're getting the answers and support you need.

Also, we did edit your subject to reflect the more accurate diagnosis of IDC -- we hope this helps you get some more responses.

We look forward to hearing more from you and supporting you throughout your treatment!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Dec 28, 2019 10:36AM fmdwala wrote:

Hi,

I want to thank everyone for responding. I really appreciate your support and guidance. The drainage tube was removed and Chemo will be started by Jan 1st. My last drainage amount was 25mL, so the surgeon decided it was time to remove the tube. I will keep posting on here as much as I can, if possible.

Happy Holidays and a Happy New Year to Everyone.

Best Wishes,

Fmdwala

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Dec 28, 2019 09:10PM NinjaMeow wrote:

Late to the game but I remember being very worried about the same thing - would drainage stop enough to begin chemo. Somehow it magically just slowed, drains were removed and chemo started on time. Good luck...take it step by step and update as possible

Diagnosed at 40 Dx 10/9/2013, DCIS, Right, 1cm, Stage IA, Grade 3, 0/4 nodes, ER-/PR-, HER2- Surgery 11/20/2013 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Chemotherapy 12/16/2013 AC + T (Taxol)
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Dec 29, 2019 06:18AM - edited Dec 29, 2019 06:20AM by Martaj

I have triple negative breast cancer stage 3, T2N1 IDC with axillary node involvement and breast chain involvement. I have had 12 rounds of taxol, carboplatin, trial/placebo, and now just finished 4 rounds of adriamcyn and cytoxan along with trial/placebo. Surgery Feb 13th right partial mastectomy with reconstuction of both breasts.This was called neojunctive therapy, to shrink the tumor which it did, and lymph nodes down, Mammo and ultrasound next week, pre-op stuff end of January. tumor no longer shows on previous ultrasound. I'm feeling positive that cancer is gone. But with triple neg you never know. I'm just glad chemo is overwith. Trial drug/placebo continues for a year. Atezolizumab, or study name is B-59. 3 weeks after surgery 6 weeks of radiation

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall
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Jan 2, 2020 05:45AM Martaj wrote:

Nervous today, Mammogram and ultrasound. hope all is negative

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall
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Jan 2, 2020 08:40AM VL22 wrote:

Martaj - good luck to you today. you in are in my thoughts.

Dx 5/5/2017, IDC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 6/15/2017 Lumpectomy: Right; Lymph node removal: Sentinel Dx 6/23/2017, IDC, Right, 1cm, Stage IB, Grade 3, 1/2 nodes, ER-/PR-, HER2- Chemotherapy 8/10/2017 AC + T (Taxol) Radiation Therapy 1/11/2018 Whole-breast: Breast Hormonal Therapy 3/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 2, 2020 10:58AM santabarbarian wrote:

We can all relate to that feeling. Hoping for the best with clean scans!!

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 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jan 3, 2020 06:03AM Martaj wrote:

I am so fortunate, both mammo and ultrasound clean. I was much relieved! 4 weeks off of any treatments, surgery Feb 13

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall
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Jan 3, 2020 09:54AM - edited Jan 3, 2020 09:55AM by santabarbarian

Oh Martaj that is wonderful!

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 8/13/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/11/2019 Whole-breast: Breast, Lymph nodes
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Jan 23, 2020 06:11AM Martaj wrote:

This is me yesterday on plane from South West Florida to RI. Many people coughing and hacking. Didn't want to get sick being 3 weeks out from chemo and surgery in 2 weeks

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall
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Jan 23, 2020 07:30AM MountainMia wrote:

Martaj, I did this in April, a few days before my surgery. Flew back from Portland, OR to Iowa wearing a mask the whole time. Better safe than sorry. I also carried sanitizing hand wipes and used a lot of them!

The rain comes and the rain goes, but the mountain remains. I am the mountain.
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Feb 5, 2020 05:44AM Martaj wrote:

Today go to have LOCalizer inserted right breast in preparation for surgery next week. Not looking forward to having another invasive breast injection. But on a lighter note if it helps get all the cancer then worth it.

Dx 7/8/2019, IDC, Right, 2cm, Stage IIIB, Grade 3, ER-/PR-, HER2- (IHC) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Chemotherapy 8/9/2019 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 2/13/2020 Lymph node removal: Right, Sentinel; Mastectomy: Right; Reconstruction (left); Reconstruction (right) Surgery 2/13/2020 Lumpectomy; Lymph node removal: Sentinel; Reconstruction (left); Reconstruction (right) Radiation Therapy 3/9/2020 Breast, Lymph nodes, Chest wall

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