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TNBC for my Birthday! Scared and Confused.

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kayceb
kayceb Member Posts: 2

I've been searching everywhere to find a peer to peer group, to maybe
find someone who has been diagnosed with my same form of breast cancer
as I figure out what treatment path to take.

I was diagnosed with TNBC on September 18th.  I have since been on a whirlwind ride of
getting doctors to respond etc.  Here are my details:

I'm 56
BRAC2+ (found out four years ago, no option for surgery, COVID times)
Been doing MRI's every year since
Routine MAMMO and MRI - last year clear, this year 3CM area (not mass) in left breast
I'm Stage II - all CT scans and bonescans show no metastasis
It seems to be contained
I have already requested a double mastectomy flat, no reconstruction
The oncologist hit me with - 5 months of an alphabet soup of chemo and
immuotherapy - 12 weeks of once a week and then 2 months of every three
weeks, then wait, do the surgery and then possibly more chemo.

I asked them if I could get the surgery first and then the chemo as it
seems logical with the side effects that I would be stronger and less
likely to get any sort of infection etc before the chemo kills
everything in my body and then to do the chemo. 
Well they came back at me with "standard of care" etc.

I asked if this was based on an average of "all" types of TNBC including
patients that were opting for a single mastectomy or lumpectomy etc.
And they said yes.

I asked what about for someone who wants them gone,
and with everything being contained, would it not make sense to do the
surgery first and then the chemo four weeks after?  That would still be
within the 120 day window of diagnosis to chemo recommendations?
They are continually telling me that this is the standard of treatment.

Is there anyone here that can reach out to me that may have had this exact
diagnosis and let me know what you chose and share your story?  I am
still so confused and not convinced chemo before is the right thing?

Comments

  • moderators
    moderators Posts: 8,219
    edited October 2023
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    Hi kayceb,

    We're really sorry you find yourself here, but hope you can get some support. And on your birthday?!!

    First, here is a few references that may interest you:

    https://www.breastcancer.org/types/triple-negative

    https://www.cancer.org/cancer/types/breast-cancer/treatment/treatment-of-triple-negative.html

    It's not uncommon to give chemo before surgery (neoadjuvant chemotherapy) by itself or with pembrolizumab (Keytruda) to shrink a large tumor and/or lymph nodes with cancer.  That said, it would be important for them to provide the reasoning other than "standard of care". Do you know the grade of the tumor? Have you had genetic testing?

    You may also want to get a second opinion, if possible. This can help you feel confident about the treatment decisions.

    We're here for you!

    Your Mods

  • smc123
    smc123 Member Posts: 38
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    Kayceb, I was triple negative and my treatment plan was chemo from Feb-July, dbl Mast surgery in August, then radiation Sep-Oct. My understanding of doing chemo first is to know how the known existing tumor responds to chemo. Also, the chemo could attack any unknown cancer cells that may have gotten passed your lymph nodes. My tumor responded very well to the chemo. My doctor could feel it shrinking with my appointments. When I had my surgery I was considered having (I forget the entire term) a complete response. Good luck, it is a long road but just take it one day at a time.

  • kayceb
    kayceb Member Posts: 2
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    Thank you for your insights…I am BRCA2+, my tumor area is 3cm, it is scattered, and I am Stage 1.5-2. I am 56 years old, post-menopausal and have high blood pressure as well as some mild aortic calcification. I have read that with early TNBC adjuvant therapy has a 52% better survival outcome than neo-adjuvant for early stage TNBC.

    Is there anyone here who went with surgery first and then chemo?

  • smc123
    smc123 Member Posts: 38
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    kayceb, a friend of mine was triple negative and had surgery first then chemo. Unfortunately, the cancer had spread to the lymph nodes and this was missed in the early scans after the initial diagnosis. She thought she was cured but six years later bone Mets were discovered after a Pet scan. She had been having unexplainable shoulder pain. She went through PT, had a MRI and finally demanded a Pet scan. She lived another five and half years but sadly died this summer. Cancer sucks and there are no guarantees. I am now seven years out and my doctor has considered me “cured”. I’m still on the message boards because every ache and pain makes me worry. It’s important to never stop being your own advocate.

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Hi @kayceb. I’ve been thinking about you and hope you are doing ok. I wish I had some helpful insight to offer, but mine was a very different cancer, with no genetic component, so I am at a loss for words. But I care and your posts touched me!!

  • brendah59
    brendah59 Member Posts: 2
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    Hi, I was about to relay my story of 6 years ago now but reading the above comments I am TOTALLY freaked out. I have a full physical in 6 days so can't come soon enough! I was diagnosed with TNBC/IDCC and my tumour had satellited 5 minis(ugh) THAT was probably the reason I had a full mastectomy 1st, where 4 of 14 nodes tested positive as well. That was followed by 3 months of Chemo every week, then the nasty one every 2 weeks for 2 months, then 29 days of radiation. After treatment was over I switched Oncologists due to her horrific bedside manner which my husband AND RN nurse daughter witnessed and advised me to change. After meeting and being examined by the new Oncologist he randomly called me at home 2 yrs later and after being at a workshop learned the benefits of Zolodronic Acid infusions for BC patients with our type of cancer. So for 2 yrs, every 3 months, I received IV infusions in a clinic setting. So I was feeling confident 6 years later but reading the comment from the gal about her friend and the shoulder pain? Coincidentally I have shoulder pain in that same surgery side. Only for 2 weeks and I'm chalking it up to bra pain( I RARELY wear one) as I've been out a fair bit for dinner etc celebrating my 65th. I will definitely chat with my doc about that. It's sporadic and after wearing a bra too. But it still is worrying me now!!!

  • moderators
    moderators Posts: 8,219
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    @brendah59 We're so sorry your fear has ramped up. Did you get a chance to discuss your concerns with your doctor?

    —The Mods

  • brendah59
    brendah59 Member Posts: 2
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    Just yesterday I saw her locum. I wished it was my gp but oh well. I'm pretty sure I have an injury from some pretty intense garden clean up, heavy duty raking but still it was timely to be examined as I have some wicked anxiety right now. My mammo is usually in Feb and I get a physical exam every 6 months. There's nothing super concerning except she's never examined me b4 and in feeling the scar tissue along my scar it felt tender for sure so yikes its worrying me. Imaging called and they can fit me in this Friday-VERY quick. I'll update when I know more.

  • moderators
    moderators Posts: 8,219
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    Thank you for sharing the update, @brendah59. We're glad that imaging was able to schedule you so quickly. Please do keep us posted on how it goes!

    The Mods

  • abbymdy
    abbymdy Member Posts: 1
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    @kayceb Hi, I'm sorry about your diagnosis. I was recently diagnosed on 12/22/23 with inductive TNBC of 5cm. My lymph node biopsy came back negative and now waiting for a full body PET scan. My oncologist said that because of the size it was stage 3 and standard of care for that is 12 weeks of chemo prior to surgery and 8 weeks after surgery. I asked for any factors that may help reduce the chimo time or avoid it and she also replied with "no, it's standard of care for TNBC". I wish there were alternative options to chemo and it was removed asap but I got the same answer as you did :(