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Topic: Survival

Forum: Triple-Negative Breast Cancer —

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

Posted on: Sep 5, 2019 02:12PM

so_chickadee wrote:

Hi everyone. I am still trying to deal with a distress from my diagnosis. BMX in September then they are planning on some "aggressive" treatment of which I dont have any details yet. But could someone please share an encouraging story/experience about long time surviving/dealing with this beast? I really need this. Thank you.

BRCA1 Positive, Interval TNBC Dx 8/2019, IDC, Right, <1cm, Stage IB, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Dx 9/2019, DCIS, Right, <1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery Prophylactic ovary removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 5, 2019 03:05PM santabarbarian wrote:

There are a lot of good stories on other threads in the TNBC forum. Hopefully people will chime in.

TNBC is scary, but there are some really important silver linings to remember 1. It can have an excellent response to chemo. As in, it can completely die from chemo and literally disappear. 2. After 3 years, the recurrence risk becomes very low. After 5 years, to drops to nearly zero. So unlike most cancers, you can defeat it, and then you can breathe a sigh of relief, and move on with your life and not be on meds for the next 10 or 20 years. These are NOT insignificant advantages!

Guessing you are early stage if doing surgery first, and that is great. I was 2B old staging and 3C new staging. And I had a complete response to chemo. I have a 90% chance of being well for the long haul, which is wonderful.

Newly diagnosed people should be aware that TNBC has 6 different subtypes which may have different treatment needs. It can be important to check the tumor's genetics, as your TNBC might respond to PDL1 therapies or EFGR therapies or other things on top of chemo. There may be some clinical trials you are qualified for giving chemo "plus." You may also want to find out AR receptor status... these results may guide treatment decisions.

Tons of complimentary practices can amplify chemo efficacy, and blunt its side effects.

I had a very good response to chemo and withstood the side effects other than anemia/major fatigue, whch is normal when you poison yourself 6 times!

Breathe deep, be healthy in every area (diet, exercise) and do the most aggressive treatment approach. You want to kill it dead in Round One!!

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
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Sep 5, 2019 03:35PM so_chickadee wrote:

Santabarbarian thank you. Could you please put some insights on the 6 subtypes of this which you mentioned? Going to ask the med. oncologist at my 1st appointment.
BRCA1 Positive, Interval TNBC Dx 8/2019, IDC, Right, <1cm, Stage IB, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Dx 9/2019, DCIS, Right, <1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery Prophylactic ovary removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 5, 2019 03:36PM so_chickadee wrote:

And I am not sure why my diagnosis does not show up in my signature.

Scared

BRCA1 Positive, Interval TNBC Dx 8/2019, IDC, Right, <1cm, Stage IB, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Dx 9/2019, DCIS, Right, <1cm, Stage 0, Grade 2, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Surgery Prophylactic ovary removal Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 5, 2019 03:46PM Moderators wrote:

Dear so_chickadee,

Welcome to the BCO community. We are sorry for your diagnosis and your upcoming treatment but so glad that you reached out here for support and information. We hope that you will benefit from the shared experiences of others in the community. Here is a link to other stories and information about Triple Negative Breast Cancer from our main site. If you go to the settings icon on the blue tool bar you can change your diagnosis and treatment information from private to public and that will allow others to view it in your signature line. Let us know if you have other questions.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 5, 2019 07:38PM santabarbarian wrote:

It is not always going to matter (with the first line treatment) what subtype you are... But in general basal or basal-like subtypes tend to respond well to carboplatin. If you are BRCA positive that probably points to basal or basal-like. The basal-like tnbcs are usually high grade. I had grade 3, so my MO assumed it was likely to be basal like. But I also had 90% AR+ which might mean it was Luminal Androgen type (LAR). The point is your MO should be thinking about what kind of TNBC you have and how to best treat it.

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
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Nov 20, 2019 02:58AM yellowdoglady wrote:

so_chickadee, and others, Take heart. TNBC is a freaking beast, BUT it is very treatable. I heard eleven years ago that I had a 29% chance of being alive and well in five years. I cried, and then I got angry and fought the beast. I won. In the words of my oncologist, we well and truly killed it. That is doable. You see, this beast has a weakness we can exploit. It is more receptive to treatment than other forms of breast cancer. It can kill us sooner, but we can kill it forever, and fairly quickly. So get on it as quickly as you can, throw the book at it, and do your level best to stay on schedule and as strong as you can through treatment. Back in my day, TNBC was TNBC. No subtypes had been identified. Science is moving on, and improving all the time. In my day I was Stage IIB, and lost 4 lymph nodes to cancer. I had six rounds of taxotare and cytoxin. Seven weeks of radiation. And I am just fine now.

As a tip to those in treatment, do not go to the grocery store when kids will be there. Avoid large crowds. Avoid Public transit if you can. It is important to avoid infection with any sort of thing. You don't want to delay your treatment, and during treatment you won't have the ability to fight off a cold or flu. So be vigilant and take precautions.

Good luck to you.

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