TNBC Stage 1

Dear Donna,


my daughter was dx with TNBC and had a quadrantectomy in August 2004.
She then found out that she has the BRCA1 mutation...she then decided to have a prophylactic bi-lateral mastectomy after undergoing 4 months of AC+TAXOL.

her tumor was 1.6 cm, 75% invasive but no nodes as per SNB..

It is now 5 years since her surgery and she is NED.

good luck to you and welcome to TNBCF.

all the best,

Steve

p.s. I also tested BRCA1+...my daughter inherited the mutation from me.
have you been advised to have genetic counseling/testing?

Hi Donna,

Hi 123Donna,

I will say that I go to M.D. Anderson ( because I live 30 miles from there) and that their standard of care
typically seems to be Taxol x 12 , then FAC / FEC x 4....

My treatment plan was exactly that.... Taxol x 12, which ended up only being 9 due to neuropathy and the onc said
she did not want to continue it in an attempt to prevent
permanent damage. So we immediately proceeded to the FAC...While on the Taxol, I continued to work 45+ hrs a week. Yes, there were days I felt fatigued, but I also tried to keep the outlook of continued mobility / exercise etc. could help with that fatigue ? I never
not one single time was nauseated nor did I ever vomit while on Taxol. We proceeded to FAC after the truncated regimen of Taxol. The FAC did make me nauseated, but never vomitted...not once. I did have to be off of work
for at least 4 days after treatment ( Fri, Sat, Sun, Mon) due to feeling flat out yucky.....nauseated, fatigued, however I believe we all experience this feeling while on just about any type of chemo. It was very "do-able"........After 1 FAC treatment I had an ultrasound which showed very substantial shrinkage of my 3.9 cm tumor. It was now measuring 1.7cm, which made me know that the efficacy of the taxol was likely very good. I just had my surgery 2 days ago and will be awaiting my pathology report next week..

I wish you the best with your treatment, and am sending
big hugzz....

Hi Donna,

Dot Lee,

It's reassuring to find out we're on the same timeline with diag and treatment.  It helps when you know others are going through the same thing as you are.  I really like this website and found the TNBC very useful.  I never heard about it until my diagnosis.  I can't believe I'm saying this but looking forward to my 3rd treatment. 

Best wishes on your treatment.

Donna

Hi, I was diagnosed in Sept 08. Stage 1, 0 nodes Lumpectomy  bilateral with reconstruction and full hyst. I am BRCA 1+. I had 4 treat. of A/C (adriamycin cytoxin) then 12 rounds of Taxol.I was very ill from the Ad/cy combo, thank goodness for the meds for nausea.The Taxol was a breeze compared to the other. I finished tx in May had the 2nd phase of recon. and doing well.All the scans have come back good.Getting ready soon for the tatooing.The neurapathy has went away.The neulasta shots did not bother me.Having hot flashes though. Good luck on the rest of your treat.

I am unusual (for TNBC) stage 1, grade 1. Also negative on both BRCA tests.

Actually it is Dawn, not Donna, who just had surgery at MD Anderson. Anyways the message is to everyone and anyone as we are all going through such similar journeys; just different stops along the way.

Donna (stage 2a)

Hi Connie. Thx so much for your reply. Yes I will have surgery at MD Anderson and will enter a clinical trial there testing the bone marrow while I am under anesthetic. This checks for "sleeping cancer cells" that may have lost their ki-67 and thus escape chemo. This happens in 30% of women; pretty close to what the reoccurrence rate is. Hence it is one more step in trying to figure out metasteses. If you are one of the 70% who do not have the cells it would be quite reassuring. Also if you are one of the 30% they recommend you be put on Zometa or a similar drug and I believe there will be clinical trials for women who are one of those 30% with sleeping cancer cells in their bone marrow. I was also told it is really good to be on any biophosphonate post treatment. At least it is something as research continues to try to figure this TNBC out. The week postop will be big for me as I wait for that pathology. I am sure so many on this blog site intimately know what I am talking about and have lived it already.
Donna Z

Yes, I am - I think you know who my oncologist is at Sunnybrook.  She suggested it and anything else she wanted me to be on I would follow post chemotherapy because I know she is involved and follows all the TNBC studies, trials, new things on the horizon. 

I am just so thrilled for you and so proud of you for not accepting 'the status quo' and empowered yourself to get the care you needed and deserved.