Calling all TNs

I read that study.  It looks like it does not take in account if a women with a mastectomy has chemotherapy.  In addition, it also mentions the concept of lvi and nodes affected, in a part of the study.  With additional data that was introduced into the article, I found it hard to determine any clear conlcusion on lx having better results than an mx with chemo.

In particular this sentence brings more questions, because I thought the article (based on the title) was going to be about women without nodes affected:   "In multivariate analysis, MRM (compared with BCT), lymphovascular invasion and lymph node positivity were associated  with increased LRR".

I find for myself, I can type into the internet, the result I want.  If I want to find that mx has better survival rates than lx, I can type that in and pull up data to support that.  If I want to find that lx has better survival rates than mx, I can type that in and pull up data to support that.

The main thing is to find out from your Onc what treatment is better for your particular situation.  We all have different risk factors, and some risk factors might be elevated more and respond better to a particular treatment than that of someone else with seemingly the same diagnosis but different risk factors.

Treatment lowers risk factors, and some treatments might lower the risk factor percentage more than another treatment. So it's important to find out the % of risk reduction each treatment would bring.

October will be 3 years since I've had a period. I was 44 at DX and turned 45 just before chemo. I had a little spotting at the 2 year mark, but nothing ever came of it. Unfortunately, I still have awful hot flashes and night sweats!

I have had Dawn's (Inmate) name added to the Angels List from the Threads site.

Doreen

Hi Relocate,

I too opted for bilat mastectomy due to the triple neg numbers as well as wanting matching breasts.  I am in the process of recontruction, and am waiting for the final surgery to remove the expanders and put in implants.  Sounds like it won't be for a few months yet.   You will have lots of support during your journey from some really nice caring women on this thread.   Take Care....and Hugs to you....Lori

Debra,

My period returned about three months after my last chemo. It scared me to death at first because I had some vicious cramps and then the flow was heavy and clotted. It was pretty extreme for me when it came back so I went to my Gyno. Turned out my body was expelling the IUD I had had placed when I was diagnosed. Once I had that sucker removed, my period leveled out and became more regular.

AL Husband- we have a gal on this thread that is TN with the BRCA 2 mutation (most TNs- if they are BRCA positive are BRCA 1). I can't remember her name, but I will try to find her for you.

Ladies- does anyone know who I'm talking about?

BRAC2 has a lifetime risk lower than that of BRAC 1.  If this were me, I would change course and have a BMX as well, and enlist the most aggressive treatment possible.

Your team might suggest that you are taking the best course already, so if it is that you and your wife opt for a BMX, make sure to convey that there is no other option you want to consider at this point, so that you aren't losing treatment time by going back and forth with the doctors in a debate.

To help you with all things weighing in on your decision, I just attached a couple of links about information relating to BRCA.

I also have read information that shows some amazing great results with BRCA carriers over that of non-carriers. I remember this clearly, as the information was so strong, that I e-mailed it to my genetic counselor, concerned that the wild types (those not BRCA1/2) have a higher risk of recurrence than that of BRCA carriers, in this one study. She was aware of the study and said they are furter exploring as to why that is.  So that is very hopeful news for you and your wife. The study downloads into a PDF, but I'm attaching the link here so that you can pull it up if you'd like.  You may have to paste it into google and then click on the directly from google. 

clincancerres.aacrjournals.org/content/17/5/1082.full.pdf

http://www.cancer.gov/cancertopics/factsheet/Risk/BRCA

http://www.breastcancer.org/risk/factors/genetics

Loafer ... BIG Congrats to you!  Go celebrate!

Well the study I posted above for AlHusband, has the BRCA1/BRCA2/ and Non-Carriers in that study.  You can click on the link ( or paste it into google) and read that.  When you are not BRCA1 or 2, you are a WildType.  Most studies seem to have all types lumped together, but this one has a chart for each type, and even further classifies each subtype by additonal criteria.  It's may not be very comforting though, as in this one study, the carriers had higher success rates vs the wild type.  I asked the Genetic Counselor about this and she still thought that stats were excellent for early stage TNBC, and told me not to worry about this study too much. 

Oh Maggie, thank you so much for the info!  Funny about the 12 hr surgery comment ... ROFL!

Ladies - came across this link in another thread and wanted to pass the info on.



http://www.cornellmedicine.org/trials/cancer-and-blood-disorders/solid-tumor/breast-cancer/a-phase-2-study-of-tetrathiomolybdate-tm-in-patients-with-breast-cancer-at-moderate-to-high-risk-of-recurrence.html

Kathy - that just sucks! Sorry you have the added stress.

Hi everyone,

I've been following this thread for a while and thought I'd finally chime in since I've caught up on some of the posts and have something to contribute.



Alhusband- I'm brca 2 positive as well and had a bilateral mastectomy. Actually had the sx before i got results of genetic testing. Since I was only 40 at time of diagnosis, they gave me some ridiculously high percentage of recurrence within my lifetime. I was not comfortable with those odds and would have done bmx if I only had lumpectomy. So ultimately, your choice of treatment is gonna depend on what you are comfortable living with.



Inspired- thanks for posting those links. Interesting study. Not sure what to make of it.



Titan- the first onc that I went to talked about the acid alkaline bit so I looked it up. Cancer is suppose to thrive in an acidic environment so we want to eat things that are more alkaline. I bought a book from amazon that rated how acidic or alkaline certain foods were. General theme was sugars and carb were more acidic and fruits and vegetables more alkaline.



Kathryn - so sorry you have go through the added stress!



As an aside, I wish I would have found this thread earlier during my treatment since it seems like the only place where I felt like I "belonged" with the frustrations of tnbc.

Kathryn, thinking of you for Tuesday.  I'm glad to hear it's only a small chance of being something else.  Please report back as soon as you find out. 

I didn't mean to scare anybody to get tested for the gene. Only a small percentage actually have it. I happen to have a family history of breast cancer. (Mom passed away from bc at young age) Insurance covered it but I had to go through genetic counseling first to determine if I was at risk. Without its $3000. Interestingly I went on my own 4 yrs ago before bc and was told I was not a hi risk for the gene since only my mom had it on her side. Agreed with it and no test done. Fast forward 2-3 yrs later, dad gets prostrate cancer and 2 more paternal cousins plus me get bc. One cousin and I get tested and we match. So gene was passed on from dad not my mom.

Netter - I paid for my genetic testing. It was about $3400. They set up a payment plan - like $160 a month.

I had it done because of my family history. I was negative. If you have no family history, I'd skip it.