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Newly Diagnosed TNBC with BRCA

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hamaldonado View Drop Down
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    Posted: Aug 26 2021 at 1:45pm
Hello!  I was just diagnosed with TNBC.  I felt a lump in my breast while on vacation in late July.  When I got home, I went to doc and it has been a whirlwind since then.

Diagnosis:
  • 3 cm x 1 cm x 1.1 cm tumor in left breast (some disagreement whether it is movable or not)  Biopsy results diagnose this as Triple Negative Invasive Breast Carcinoma  Grade 3 (9/9)
  • "highly suspiscious" node in underarm.  Biopsy was negative but radiologist and surgeon say that is "discordant" and suspect the node to be problematic
  • BRCA mutations present in a report I obtained via sequencing.com this past year but doctors want to confirm with their better tests whether these are real or not.
  • Still waiting on full body PET scan and breast MRI but they are saying tentatively stage 2.
Treatment Plan:
  • Port placement happens 9/8 and chemo starts 9/9
  • Chemo first (neoadjuvant) 
    • 4 rounds of AC every two weeks (1st 8 week course)
    • interim check with radiology to see if there is shrinkage.  If not we skip second set.
    • 4 rounds of Taxol every two weeks with Carboplatin (2nd 8 week course)
  • Single Mastectomy (double will be done if they confirm the BRCA mutations)
  • radiation on lymph nodes may be needed depending on how lymphnodes that they remove look
  • We still need full body pet scan and breast mri which they are trying to rush through with the insurance.  Chemo starts regardless on 9/9.
I have already been living with a chronic illness for all of my adult life.  I have Mixed Connective Tissue Disorder, so pain and fatigue are not new to me.  I am incredibly worried that, given my baseline is already achey and tired that I will be completely floored by this treatment.  

Any help and advice is greatly appreciated.  
  • What do you do to keep your energy up?  
  • Which days are the worst after AC and which are the best?  I have two kids and a hubby and would like to try and have weekends "feel good" days if possible.  Same question for Toxil and Carboplatin
  • What things should I ask for from my doctors?  
  • How much can you go out while on chemo...can I go out to dinner sometimes?  Can I go to church?
  • Any foods to add and/or avoid to help with chemo side effects?
  • Can I exercise while on chemo?
I have so many questions.  I am having a little bit of a hard time navigating the site but I am sure I will figure it out.
Thank you!
Heather



Edited by hamaldonado - Aug 26 2021 at 1:53pm
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Vivian View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2021 at 11:44pm
Hello Heather, I have some personal experience to share with you. 

I had the same chemo as yours: 4 AC followed by 4 Taxol. I also had an ultrasound after AC before Taxol. The worst days after each infusion were the 2nd and 3rd day. The best days were right before the next round of chemo. I would eat more to be ready for the next round of down time.

During these 16 weeks, I went out for walking as long as I had the energy. Otherwise, I did some home exercise. It made me feel better, and was recommended by my oncologist. If I was feeling complete down (days right after infusion), I would forgive myself not doing anything except lying in bed. 

I didn't dine out during my chemo as it was during Covid, also because chemo made food taste awful, especially during AC. I started to go to restaurants after my mouth and appetite recovered from chemo. I found steamed food most acceptable during chemo. I couldn't eat any spicy, dry (like cookies) or tangy food. I liked sweets a lot which was unusual of me but I followed my appetite. I didn't eat anything special to help with chemo side effects. My weight did not change during the treatment. 

I didn't work during my treatment. I felt it was necessary for me with the dose-dense regimen. 

Hope you will have a smooth journey. It's worth the hardship. Stay strong!

Vivian


Dx 12-27-2019 TN,Stg 1, Grade 3 Ultrasound 1.5cm/MRI 1.8cm, node-,BRAC-.
DD AC x 4, ultrasound cCR;
DD T x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR.
Radiation: 20x
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kirby View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2021 at 8:16pm
I did acupuncture thru chemo and swear it gave me energy. I didn't start the acupuncture until a couple days after my first chemo. So long ago I don't remember precisely. After that I was able to book acupuncture an hour or so after my infusions. The difference in energy levels between the first infusion and the remaining when I did acupuncture right after were quite noticeable. After the first infusion I was quite lethargic and content to lay and do nothing which isn't like me at all. With the remaining infusions with acupuncture after I was able to do things and had the desire to do so. I would time what I was doing...gardening, housework etc. so I wouldn't overdo. 
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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Alishan View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Alishan	Quote  Post ReplyReply Direct Link To This Post Posted: Sep 30 2021 at 3:45pm
I was diagnosed with triple negative breast cancer and after a year of treatment followed by 6 monthly checks I was discharged. About 3 months ago I felt a tenderness in my right breast and when I undressed I noticed a red area (about 1 diameter) to the side of my nipple and one of the spots surrounding the nipple was filled with a white fluid.  This disappeared following a shower and the red area gradually disappeared over the next few days. Dunno what to do. Waiting for doctor to respond.

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Rubytuesday View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rubytuesday Quote  Post ReplyReply Direct Link To This Post Posted: Oct 03 2021 at 12:36pm
I too have been through a whirlwind since I was diagnosed on my Birthday in June with stage 3 TNBC. (Oh Happy Birthday) I never felt a lump. It was my nipple pulling to the right and inverting on my right breast. One lymph node is suspect.  In one day I had my MRI CT and bone scan. the following week started AC/Pacitaxol treatments. My last treatment is tomorrow. I have weathered it well only really having changes to may nails and mild neuropathy when I started the taxol (post second treatment) I have tried to stay active. Getting out to see my customers at least once a week in between treatments (every two weeks). I have been waiting to have genetic testing for the BRACA gene to confirm bilateral surgery, then onto radiology. I had no testing in between. Its all been lumped into the following week. I was thrown a bit of a curveball when the oncologist mentioned that I could have additional chemo afterward? I  seriously hope not, but will ride it out if that is what my path is. Is this typical?  

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