Topic: Triple Positive - Losing It

Forum: Diagnosed and Waiting for Test Results — Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: May 2, 2022 12:43PM

Posted on: May 2, 2022 12:43PM

jh40 wrote:

Hi All

Found out this morning that I’m triple positive. Grade 2. Really high ki-67. And I’m absolutely terrified. I’ve spent the last 2 weeks losing my mind over the possibility of being triple negative, only to find out I was freaking out about the wrong thing.

My tumor is 1.1cm in my right. Biopsy apparently took some big bites out of it according to the path. My appointment with the breast surgeon is on Wednesday.

I’m really struggling with this and would appreciate anyone reaching out, but anyone who is also triple positive would be most welcome.

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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May 2, 2022 01:01PM moth wrote:

Triple positive is good. It gives you so many more treatment options.

you'll want to join this thread for Triple Positives https://community.breastcancer.org/forum/80/topics...


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- Surgery 12/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 2/13/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole breast: Breast Dx 2/2020, IDC, Left, 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 Hormonal Therapy 12/15/2020 Femara (letrozole) Radiation Therapy 3/2/2021 External Local Metastases 3/2/2021 Radiation therapy: Bone Targeted Therapy 1/1/2022 Trodelvy (sacituzumab govitecan-hziy) Chemotherapy 6/1/2022 Other
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May 2, 2022 03:13PM cowgirl13 wrote:

Hi jh, I was where you are today about 13 years ago. I had absolutely no idea what to do and was terrified. I will say this, If I can do it, you can do it. As moth said there are many treatment options for us triple positives (I too am triple positive). I was scared to death to meet with my surgeon so I asked my sister to go with me. Had she not been around I would have asked a friend. To my great surprise I loved my surgeon - she was so thorough and knowledgeable. When I left the appointment I said to my sister I can do this. Something that was very helpful for me was to record our visit (I asked the surgeon if that was ok and she was fine with it). So that took away a lot of stress because I woudn't have to remember everything she said. In case you are not sure about the surgeon you can always have a second opinion from another surgeon so don't stress on that. So I had no idea what to ask the surgeon-I just showed up with my sister and listened.

Again, as moth suggested - do look up the Triple Positive Thread as it's very helpful. Thinking good thoughts for you on Wednesday and do let us know how it goes.

With warm regards

Elizabeth


Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, ER+/PR+, HER2+ Surgery 6/16/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)
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May 2, 2022 04:45PM - edited May 2, 2022 05:48PM by alleycat5

Hi JH40. I'm a newly diagnosed triple positive. I had my first chemo and Herceptin treatment today. I had lumpectomy on 3/22 with reexcision on 4/1 to get clean margins and do a sentinel node biopsy (which was clean).

I understand completely what you're going through. When I had my first diagnosis and that first lumpectomy, we thought it was only DCIS. The plan then was just radiation after lumpectomy and Tamoxifen for ER/PR+. Then it came back IDC and margins weren't clear. Plus they tested then for HER2 which was positive. I suddenly had to add chemo and Herceptin into my plans which honestly freaked me out.

After talking with my oncologist though, the outlook now for us triple positives is very, very good. Herceptin and targeting drugs like that have been game changers. If you google it, try not to look at articles before about 5-10 years ago. The outlook for triple positives was not good, but again, that has changed. It does mean for me once a week treatments of chemo and Herceptin for 12 weeks followed by Herceptin for a year every three weeks, plus radiation and tamoxifen, but I think we are approaching 99 percent 5-year survivability with that.

If you want to message me, for more, feel free to do so. I know how scary this is and how you feel like it's one bad piece of news after the other, but it does settle down a bit. And do go to the triple positive page as others have said. Lots and lots of info on there, especially if you stick to some of the newer posts and not the older stuff.

Big big <<HUGS>> to you!! We can do this!

Surgery 3/22/2022 Lumpectomy (Left) Surgery 4/1/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 5/2/2022 Taxol (paclitaxel) Targeted Therapy 5/2/2022 Herceptin (trastuzumab) Radiation Therapy 8/1/2022 Whole breast: Left breast Hormonal Therapy 8/1/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC/DCIS, Left, <1, Stage IA, Grade 1, ER+/PR+, HER2+, IHC Dx DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+, IHC
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May 2, 2022 05:51PM angieb92 wrote:

Hi JH40!

I was where you were in 2019. My tumor was 2cm and the biopsy broke it apart. Triple positive BC has an answer for each of the pluses on your pathology. Once you get your plan in place, you will feel more in control. I made it through treatment and still lived my life, laughed, worked, and had fun. You can do this!!

Dx 8/8/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/6 nodes, ER+/PR+, HER2- Targeted Therapy 9/16/2019 Perjeta (pertuzumab) Targeted Therapy 9/16/2019 Herceptin (trastuzumab) Surgery 3/3/2020 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Targeted Therapy 4/9/2020 Kadcyla (T-DM1, ado-trastuzumab)
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May 2, 2022 06:17PM jh40 wrote:

moth - thank you for directing me there. Hoping to connect with others like me on that thread.

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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May 2, 2022 06:21PM jh40 wrote:

alleycat5 - wow! First chemo today? How are you feeling? I’m sure that’s a dumb question but we’re you scared? I’m scared stiff of this. Also 12 weeks with no breaks??? How is that the way? I thought it was one week and then 3 off? I’m so new to this; I didn’t realize there would be that kind of regime.

I’d love to talk with you more about this and will definitely message you.

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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May 2, 2022 06:23PM jh40 wrote:

angie92 - thank you for the kind words. that’s such good news and I really welcome it. I think my tumor broke apart because the radiologist said something like “Oh it’s destroyed.” After he took 5 samples from it. It was originally 1.1cm. Does this make a difference in whether you can get a lumpectomy?

Surgery 6/16/2022 Mastectomy (Right): Simple Chemotherapy 8/1/2022 Taxol (paclitaxel) Targeted Therapy 8/1/2022 Herceptin (trastuzumab) Dx IDC, Right, 1cm, Stage IA, Grade 3, ER+/PR+, HER2+, IHC
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May 2, 2022 07:11PM alleycat5 wrote:

jh40 - I sent you a PM, but been feeling great today after chemo (Taxol) and Herceptin. Maybe still on a steroid high, but I came home and went for a walk around the neighborhood, worked in the yard, and ate a big supper. Going to start on anti-nausea meds tonight and take through tomorrow and probably Wednesday. Have a feeling I could start feeling worse then, but hopefully not. And yes, I was scared out of my mind for chemo. But I found out today, I was letting my obsessive worrying get the best of me.

Surgery 3/22/2022 Lumpectomy (Left) Surgery 4/1/2022 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 5/2/2022 Taxol (paclitaxel) Targeted Therapy 5/2/2022 Herceptin (trastuzumab) Radiation Therapy 8/1/2022 Whole breast: Left breast Hormonal Therapy 8/1/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx IDC/DCIS, Left, <1, Stage IA, Grade 1, ER+/PR+, HER2+, IHC Dx DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2+, IHC

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