Join Us

We are 224,301 members in 83 forums discussing 163,483 topics.

Help with Abbreviations

Topic: Here we go again...after 15 years NED

Forum: Triple-Negative Breast Cancer —

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

Posted on: May 6, 2020 11:26PM

Camama2 wrote:

I was initially diagnosed in 2005 at age 49 as TN which was discovered through annual mammogram. My mother had BC at age 70 but was stage 1, no other family members. I had lumpectomy followed by TAC and radiation. As normal for TN, I had all the worst markers but was determined to survive as my kids were 9 and 10 and were the result of 7 years of infertility and 3 rounds of IVF. All was good for 15 years...........and then a few weeks ago I felt a lump in the scar tissue of my lumpectomy. I always felt some scar tissue there but now it felt different, bigger. It was time for my annual mammogram which I hoped could convince me I was imagining things due to Covid-19 health paranoia. They said they were not doing screening mammograms but when I said I have a history of BC and felt a lump they got me in. The radiologist said there was definitely something. I hoped it was a cyst (my mom and older sister have had 7 between them, both of mine were BC, no cysts) and he said he thought it was BC. Radiologists never tell you this so I was prepared for the worst. Unfortunately I have had a confirmed diagnosis of BC again, same breast, TN again with tumor attached to scar tissue. I don't know if it has spread, I will find out tomorrow. I pray for the best but as all of many of us do I suspect the worst. I have been told most likely chemo first as the tumor "is quite large" they can't tell exactly as the tumor is attached to the scar tissue and the ultrasound bounces off of the scar tissue. I will definitely be having a mastectomy and I have chosen bilateral with reconstruction (the thought of going through this for a third time makes me want to puke). Now to pray for no mets. A second diagnosis of TNBC is never easy but right now during Covid 19 it is the worst. I am not allowed to have anyone accompany me to anything, not surgery, not chemo, and most of all not finding out if I have mets...have to face it all alone. I'm so sad and so scared. Trying to stay positive but it's SO HARD! After 15 years, REALLY??? Trying to force my inner warrior to resurface but it's really hard.

Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
Log in to post a reply

Page 1 of 1 (17 results)

Posts 1 - 17 (17 total)

Log in to post a reply

May 7, 2020 06:18AM SoulShine1969 wrote:

Laurie, I’m so sorry for your diagnosis. No one wants to go through treatment and surgeries again, especially now. You must be very scared. Did you already have a biopsy, is it TN again? You mentioned that you’ll find out more today hopefully there is some good or positive news. I’m sending strong warrior vibes and extra strong prayers your way today. You’re not alone.

Sending hugs,

Rebecca

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/29/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/3/2015 Breast, Lymph nodes, Chest wall
Log in to post a reply

May 7, 2020 06:52AM April0315 wrote:

I am so sorry Laurie. It is a tough time to go thru this again. Praying you can find some way to have some comfort as you move forward.

Dx 2/28/2019, IDC/IDC: Papillary, Right, Stage IB, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 4/12/2019 Lumpectomy: Left, Right Dx 4/18/2019, ILC, Left, 2cm, Stage IB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Chemotherapy 5/12/2019 AC + T (Taxol) Hormonal Therapy 10/15/2019 Femara (letrozole) Surgery 11/15/2019 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right)
Log in to post a reply

May 7, 2020 07:31AM - edited May 7, 2020 07:32AM by Rosiecat

Laurie, I'm so sorry that you find yourself having to go through all this again especially after so long in the clear. I hope that you have all the answers you need very quickly, despite the current crisis. All situations are different, but it might help a tiny bit for you to hear that a friend was in a similar situation a year after her lumpectomy. Her TN tumour came back along the scar line. She had a mastectomy over 4 years ago now. Her tumour hadn't spread and there's been no recurrence Good luck.


Dx 8/24/2018, Left, 2cm, Stage IIA, Grade 2, 0/7 nodes, ER-/PR-, HER2- Surgery 9/18/2018 Mastectomy: Left Chemotherapy 10/22/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel)
Log in to post a reply

May 7, 2020 10:05AM Ingerp wrote:

(((Laurie)))

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/23/2016 Lumpectomy Surgery 4/20/2016 Lumpectomy: Left Radiation Therapy 5/18/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/13/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/18/2018 Taxol (paclitaxel) Targeted Therapy 5/18/2018 Herceptin (trastuzumab) Radiation Therapy 8/20/2018 Whole-breast: Breast
Log in to post a reply

May 7, 2020 09:32PM NinjaMeow wrote:

(((Hugs)))) I am not sure what to say but you will be in my thoughts.

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)
Log in to post a reply

May 7, 2020 11:05PM OnTarget wrote:

I'm so sorry for you! I wish you the best with the BMX.

I've been thinking about this for friends, and do you think your doctors would let you have a supporter on the phone or Telemed or something so your loved ones could listen in on appointments?

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/5/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 2/14/2020 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting, Silicone implant Surgery 3/29/2020 Reconstruction (right) Surgery 11/6/2020 Reconstruction (right): Tissue expander placement Surgery 5/31/2021 Reconstruction (right): Tissue expander placement
Log in to post a reply

May 8, 2020 05:43AM Moderators wrote:

Camama, we're so sorry you are going through this again. Thinking of you and sending you ciber hugs. Please, let us know if there's something we can do for you.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

May 8, 2020 08:07AM moth wrote:

Laurie, fingers and toes crossed for your scan results. We're all in your corner.

I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

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 2/13/2018 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 3/18/2020 Tecentriq (atezolizumab) Chemotherapy 11/25/2020 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 12/8/2020 External Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Hormonal Therapy 12/15/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/2/2021 External: Bone
Log in to post a reply

May 8, 2020 08:33AM santabarbarian wrote:

I am so sorry to hear this. After 15 years, it must be quite a shock! We are here for you. Wishing you all the best with your 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 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
Log in to post a reply

May 8, 2020 12:43PM Camama2 wrote:

Thank you everyone for your kind words. This site was my savior the last go around of 15 years ago so when facing this again I turned to this site. Over the years I have talked with various other people who have been diagnosed with BC and told them how this site helped save my sanity. Here is an update. Luckily shortly before the appointment I was contacted by my doctor's office telling me that as of yesterday they changed their Covid-19 protocol and will allow one person to accompany the patient for consultations only. This was awesome news and my husband was able to accompany me. The news keeps getting better... my scans were CLEAR, hallelujah! I asked if this would be considered a recurrence because it's attached to scar tissue from the lumpectomy. She said after 15 years definitely no, it's a new cancer. Based on how aggressive TN is there is no way that it would not have surfaced and grown way before 15 years. The oncologist has decided that I need mastectomy first (bilateral by my choice) followed by 4-6 rounds of chemo (4 if no lymph node involvement, 6 if lymph). She told me that the "standard of care" chemo treatment for TN is TAC, which I had 15 years ago. Apparently there is a lifetime limit for Adriamycin because it is very damaging to the heart. She said if they were to give it to me I could have heart failure. Therefore I will only be getting Taxotere and Cyclophosphamide. Because it's not metastatic I don't qualify for immunotherapy or any other meds. Because of my prior chemo I'm not eligible for any clinical trials. She said if I could have had TAC she would have had me do chemo first but since I can't she wants surgery first. She said Taxotere and Cyclophosphamide are "wimpy" chemo when compared to Adriamycin. She also said if the plastic surgeon who will do the reconstruction can't coordinate her schedule with the surgeon performing the mastectomy I should not wait as the tumor is very aggressive and I can have reconstruction after chemo is done. So now I'm praying they can coordinate but I'm leaving it to the universe. Strangely I'm excited about having surgery. I just want this thing out of me. But even stranger, I'm anxious that maybe I'm not going to get "enough" chemo since I can't have Adriamycin. Although I'm not looking forward to chemo again I'm more concerned that the cancer can hit hard enough to be gone. So although my new breast cancer journey has just started I at least have a game plan. I slept last night the best I have since I found the lump. You all know and understand. Thank you. I'll be back to post again and this time I will be posting more in other areas to hopefully help others as well as myself.



Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
Log in to post a reply

May 8, 2020 09:35PM NinjaMeow wrote:

Excellent update! It is good to understand that this is a new cancer and not recurrence. I am super glad you have a plan forward. Keep us updated.

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)
Log in to post a reply

May 8, 2020 10:48PM santabarbarian wrote:

Ask about Carboplatin + Taxotere. That's what I had. Carboplatin has good stats with high grade TNBC.

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 2/10/2019 Whole-breast: Breast, Lymph nodes
Log in to post a reply

May 9, 2020 12:01AM Beesy_The_Other_One wrote:

Camama, I meant to answer and got distracted, but I see Santabarbarian mentioned what I was thinking. It makes complete sense to me that you've already used your lifetime limit of Adriamycin but I wonder why they are not giving you Taxotere and Carboplatin? I have read about it more and more being used for TNBC, as with HER2+ cancers.

Wishing you the best in your treatment!

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)
Log in to post a reply

May 9, 2020 07:00AM SoulShine1969 wrote:

Camama, I agree with Santabarbarian and Beesy about adding Carboplatin. I had it added on to the end of ACT, I’m so glad I did. Keep us updated.

Hugs,

Rebecca

Surgery 10/14/2012 Prophylactic mastectomy: Left, Right Surgery 12/29/2013 Reconstruction (left); Reconstruction (right) Dx 2/18/2015, IDC, Left, <1cm, Stage IIB, Grade 3, 1/14 nodes, ER-/PR-, HER2- Surgery 3/30/2015 Lumpectomy: Left Chemotherapy 5/2/2015 Adriamycin (doxorubicin), Carboplatin (Paraplatin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Radiation Therapy 11/3/2015 Breast, Lymph nodes, Chest wall
Log in to post a reply

May 13, 2020 03:33PM Puddy123 wrote:

Hi Laurie, first of all I am so sorry you are going through this... 15 years cancer free and now this - it must feel like the rug has been pulled out from under your feet.

I have done the double mastectomy and radiation (2016) and reconstruction (2017) so I may be a good support for you as you are going through this. The only thing that helped me was to focus on my health one day at a time. Your children are older now, so you may have more energy and resources for YOU than you did the first time. You are not alone! Everyone on this site is here for you, so reach out when you need to.


Log in to post a reply

May 21, 2020 08:33AM Camama2 wrote:

I am now one week post double mastectomy. Had the drains removed a couple of days ago. Pathology showed that the tumor was actually 3.6 cm. Radiologist thought it was 3.3 but said the ultrasound was bouncing off of the scar tissue. It's high grade, which I expected since it's TN. They got clean margins. Looking at myself the first time was tough for both me and my husband of 32 years. But his comment was "I don't care, I love you anyway and we're going to grow old together" that attitude definitely makes it a little easier on me. I'm still in some pain but it's getting less and less every day. I'll be starting chemo on June 3rd of 6 rounds of Taxotere and Carboplatin. Now that all decisions are made and I have a total game plan I feel much stronger and in control of my future. I'm not looking forward to chemo again but I WILL survive. Thank you for all your thoughts, suggestions, and support!

Laurie

Laurie Dx 6/24/2005, IDC, Right, 5cm, Stage IIIB, Grade 3, 2/17 nodes, ER-/PR-, HER2- Surgery 7/21/2005 Lumpectomy; Lymph node removal Dx 4/29/2020, IDC, Right, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (IHC) Surgery 5/13/2020 Mastectomy: Left, Right; Prophylactic mastectomy: Left Chemotherapy 6/3/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy TAC Radiation Therapy
Log in to post a reply

May 21, 2020 12:26PM santabarbarian wrote:

Thanks for the update. If you have no contraindications, fasting briefl before my chemos helped me a lot w Taxotere and Carbo. See "The Fasting Mimicking Diet" Dr. Valter Longo USC. I would recommend icing hands feet and head for Taxotere infusion. I got some bathing cap-type caps you could put in the freezer (for migraines) and my hair came back well.

Good luck -- I hope you sail through the chemo.

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 2/10/2019 Whole-breast: Breast, Lymph nodes

Page 1 of 1 (17 results)