Topic: Looking for Members Stories!

Forum: Triple-Negative Breast Cancer — Share with others who have ER-/PR-/HER2- breast cancer.

Posted on: May 4, 2016 05:29PM

Posted on: May 4, 2016 05:29PM

moderators wrote:

Hello, everyone!

We're looking for Triple Negative members who would be willing to share their stories with us for our Acknowledging Our Community section. We'd like to hear from you about what you've found difficult, surprising, inspirational, helpful, etc. What are some things you've learned that you wish you knew when you were diagnosed? What would you like to share with other members who find themselves facing a triple neg diagnosis? Your words and stories are so inspirational and valuable, we'd love to hear them!

If you'd be interested in telling us your story, feel free to post here, or send it to us via private message. We also ask that you include a picture to use with your story (or, if you'd rather not, that's ok too!). Thank you for all you do to keep this community thriving, we appreciate each and every one of you!

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May 8, 2020 09:18PM Etam168 wrote:

Thank you for sharing, Suveekay. I am new on this organizational site. I am 47 and newly diagnosed with triple negative, stage 2B, grade 3. Pet scan was negative for any metastases. Currently on chemotherapy (taxol and carboplatin) x 12 weeks then (adriamycin and cytoxan) x 8 weeks to be given every 2 weeks, then surgery. Since this is so new (diagnosed 3 weeks ago), I have been having anxiety and sleepless nights. And fear of outcomes. Chemo has been well, I am up and about. When I read triple negative CA, it scares me when it says it is most aggressive breast CA. I am glad to read a post of recovery of 10 years. That's amazing. Immunotherapy is being offered to me but I am not sure...Anyone had this treatment recently? Any thoughts or input would be greatly appreciated.

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May 9, 2020 10:11AM santabarbarian wrote:

Etam, this thread is not as active as "Calling All TNs" - maybe you can also post there?

Yes, it is scary to read about TNBC.... but the silver lining of its aggressiveness i that it responds much better to chemo than poky, indolent cancers do. If you can get rid of it and stay clear for 3-5 years, you will be very likely never to see it again. Hormone positive cancers can recur many years later.

Many Oncologists give Ativan for anxiety and some people find it really helpful.

Immunotherapy or anything else that boosts efficacy of chemo should be strongly considered. Be aggressive and knock it out right now!!

Good luck to you!! If you want to see my story it is on page 6 of this thread. I had a huge tumor and 3 cm lymph node at diagnosis and got a GREAT response to chemo.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/11/2019 Whole breast: Breast, Lymph nodes
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Feb 10, 2021 09:40PM justducky1 wrote:

Hi~my name is Barbara. Here is my story~warning it's a long one. It began in Jan 2020. At that time I was very active, swimming laps & generally enjoying life. Sometime in Jan I noticed that I was having difficulty swimming the 60 laps I normally did. Within 2 wks I was down to 10 laps & I was very breathless. I thought it was my exercise asthma so I didn't think much about it. I went into the city & I found that I could not even walk a block without stopping to rest. It was horrible but I managed to get home ok. The next day I had a cardiologist appt. He did an echo and found that I had a massive blood clot in my right lung that was bulged out and putting pressure on my heart. This threw me into heart failure and I had ARDS. I was admitted to the hospital where I stayed for 4 days. I left having to take blood thinners for the rest of my life. Then Covid hit & I was not able to follow up on a Birad 3 growth. Covid delayed the appt till June when it was determined that the original lesion was nothing but they discovered a small suspicious growth very deep in the left breast. Nobody could feel it but it showed up on the mamo & soon. Upon biopsy, it was determined that it was an invasive stage 1, grade 3 DCIS, about 1 cm & there was a smaller growth near it. All TNBC. additionally, upon further biopsy, there was LCIS scattered throughout the area. It was decided that I would have a lumpectomy, followed by chemo & radiation. I had to have a n ICV filter inserted because of the blood clot issue. This was removed shortly before I began chemo. So 2 additional operations. The day of the surgery there was a power failure so that added to my anxiety. Also because nobody could feel the tumor I had to have a needle localization which involved a ride in an ambulance to get to the facility that could do this. I had to ride back to the hospital with what looked like 2 large knitting needles sticking out of my breast. It was horrible. Finally had the surgery & that is when they found the LCIS so the margins are small but clear. Sentinel node was clear. So I began chemo which was Taxotere & Cytoxin IN every 3 wks. I began in Sept & it ended the end of Nov. It was so toxic they had tocut it down 20% & it still was too much for me. I had and still have horrible fluid retention in my entire body. At 1 point I could not even bend over at the wait. I have not been able to wear my sneakers fro Sept till last week.It also attacked my muscles so walking was really painful & very difficult. Just this wk I can finally go up & down the stairs in the house. I really felt like I was dying.Things are getting better but super slowly. NowI am doing radiation. In the scheme of things it's not too bad. my breast is sort of burned but it's tolerable. I have 6 sessions left. Though all of this I wonder why nobody let me know that the blood clots were a warning that there was cancer somewhere. I had to ask a friend whose friend works at Johns Hopkins to tell me this.So I guess in the scheme of things I was pretty luck. It was found early and I think I got good care throughout this journey. If anyone has any questions please feel free to ask!
Radiation Therapy 1/20/2020 Whole breast: Breast Dx 7/9/2020, ILC/IDC, Left, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Surgery 8/13/2020 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 9/1/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Feb 12, 2021 08:45AM santabarbarian wrote:

Wow I have never heard of the cancer-blood clot connection! Glad your cancer was caught fast

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy; Lumpectomy (Left) Radiation Therapy 2/11/2019 Whole breast: Breast, Lymph nodes
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Mar 10, 2021 06:55PM - edited Mar 10, 2021 06:57PM by Nardina

Has anyone considered not having chemo?

dx: pt1b n0 m0

surgically excised with +2mm margins

6mm tumor (found by mammogram)

grade 3


Recently diagnosed and I do not want to have chemo

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Mar 10, 2021 07:42PM wrote:

Nardina, I just replied to our other post where you asked the same question. What I suggested is that you should start your own thread. I'd suggested the Just Diagnosed forum because you didn't mention in that post that you are TN. If you prefer you could start your own post here in the Triple Negative forum - pick the forum you prefer. Just click the box near the top of the page where it says "Start a new Topic".

You'll get much more attention to your question in your own thread.

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Oct 14, 2021 11:38PM Calee wrote:

I promised myself that I would come back here if I survived TNBC. I was diagnosed at 32 with a little toddler that I was afraid of dying and leaving him in this world without a mother. But here I am... 9 years later. The toddler is now 11 and has a 5 year old sister!!! It was so hard being upbeat when all you saw was the sadness and sat in fear everyday. But .... time slowly heals. Hair grows back.. strength comes back.. and your heart starts to begin to think about future possibilities instead of thinking of death and dying 24/7. The trauma and the fear never completely go away... but you begin to live life again and find even more joy because of what you lived through. I hope that this gives even one person hope.

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Oct 15, 2021 07:49AM moderators wrote:

Dear Calee, welcome to and thank you so much for sharing your story of hope and recovery with all of us. It's so inspiring!

We hope you will stay connected here, and we would love to hear more from you. So please, keep us all posted as to how things go for you.

Best wishes,

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