Just found out I'm triple negative.....terrified

I know there are triple neg on these boards soi I am going to

BUMP

Hope60:   I know exactly how you feel - I was there myself about 10 months ago!  The triple negative diagnosis was a complete shock, felt like I'd been kicked in the gut, and I got so disturbed by everything I was finding out about it. So let me try to help...

1. Take a deep breath. A triple negative diagnosis is NOT a death sentence. Most women with BC, including triple negative, go through treatment, get better and go on with their lives.  You will too!  In fact, there are many positives about being negative.

2. One positive is that chemo is known to work especially well for us. 

3.  While recurrence rates for us are higher in the first 2-3 years than for E/P + ladies, they decline quite dramatically following that (even lower than the hormone positive ladies).  By year 6, the risk of recurrence for us is quite low.

4. A low-fat diet and regular exercise have been shown to be particuarly effective for triple negative  women.  It's our own hormone therapy... without the side effects.

There is a triple negative forum on these boards -- hop over there and introduce yourself under the Calling all TNs thread.  There are many lovely ladies over there who will give you support.   

Also, try visiting http://www.tnbcfoundation.org/ and http://hormonenegative.blogspot.com/2009/01/want-to-beat-cancer-exercise.html

Hope this helps. Fell free to PM if you want.

II'm just 17 months out (tomorrow)..but I'm feeling good!  Sometimes I still get scared but try to overcome it..I have a co-worker that is now SEVEN years out from Tri Neg and she is perfect!  Her onc told her that she has virtually NO chance of a reocurrence...Oncs don't tell you that if they don't mean it...Mine told me one year ago that he "thinks" I will be OK..I try to remember that...

Hi Hope60, I wish you the best as you and your oncologists decide what is  the best route for you to take. I agree with what everybody said above but I want to add one thing. If you have any family history of breast or ovarian cancer in your family history, ask to speak with a genetic counselor. If they believe that chances are you may be BRCA positive, please take the test. this can be very important in your decision making regarding your chemo, and possible radiation. I know this is a very personal decision. But many women with triple negative also test positive for BRCA 1 or 2. I  knew I was triple negative, but didn't get tested until i was in the middle of radiation. If I had know before my lumpectomy, I would have had a double mastectomy right away instead of having to wait a year.(I just had a double mastectomy with immediate reconstruction last week) I probably still would have had the chemo, but at least then I wouldn't have to think about getting a new cancer diagnosis. I have  friend at church who found out she had cancer and had a very strong family history of cancer.She asked if she can be tested for the BRCA mutation before the surgeries were done, and the results came back in a week! They usually come back after 3 to 4 weeks. And if you have insurance, the insurance would much rather cover this cost then covering 1 or 2 more surgeries down the road and radiation. I know this seems like a huge amound to information right now. Please write me any questions and I'll be praying for you.

"Be strong and courageous"

Carla

Hi Hope60,

I'm also triple negative, and have finished chemo, radiation, double mastectomy and eagerly awaiting exchange...which won't be for another 6 months or so because of radiation.  I encourage you to come here for support as the ladies have all been through this too.  We get it, and even though we are all different, there is a lot of wisdom here.

I sometimes just come on to play word games if I am stressing...or go over and read a prayer or two.  There are a lot of forums to peek into...just try not to get overwhelmed   Some ladies sail through...some need to take off from work.

Best advice I have read would be to let people help you, and write down your network of helpers, so everyone knows who each person is.  Don't be afraid to ask...most of your friends etc...are looking for a way to help, and it's nice for them to be able to mobilize.

Many Blessings,

Traci

 Hello Hope.   I also was just recently diagnosed as triple negative.  I had a mastectomy July 23, one month ago today.  I was going to start chemo today but just signed up to participate in a clinical trial..   It was suggested to me because of my age and the triple negative diagnosis.  So last week we decided to start on Aug 30.  I was also told by the surgeon that I would need radiation.   I had 2 lymph nodes removed with one being microscopically positive.   My oncologist wants me to go back in to have more nodes removed.   My surgeon said absolutely not.   He did not want to risk lymphodema.    Today I got a call and said I need to talk to the radiation oncologist tomorrow.   They discussed my case with the tumor board and they are still trying to decide if I need more surgery or if radiation will even help my case.  I was hoping that if there is anything still there that the chemo would kill it.   They said not necessarily.  I do not want more surgery at this point.   I had trouble with the first drain.    They said it was defective and didn't drain properly.   I got a very large, 2 cup, blood clot.  Nine days after my first surgery, they had to reopen the incision and drain it out.   They put in a bigger, more rigid drain line.  It drained but was so rigid I couldn't hardly move.   It was very painful and got infected.  After another week, it was removed.   I felt better for about 5 days when my drain hole broke open and sprung a leak.  It is still tender in that area.   Last week I had my chemo port put in.   That was the most painful surgery.  I think you can understand why I don't want another surgery. Sorry I got side tracked. Back to the clinical trial.    I was told that they have to order the drugs but that they didn't want to wait until Monday.   I was also told that I had time but now it seems to be everything in a hurry. So maybe I will be starting later this week.    Not yet sure.    I am also having genetic testing.   I have no prior family history but evidently younger people and especially people with the triple negative diagnosis have a larger chance of having the BRCA1 or BRCA2 mutation.   I feel it is important to find out.    I wish they would have put more emphasis on this before my surgery.   I would definately have done it before my surgery.   That would have made it more clear whether or not to have 1 or 2 breast removed.   My chemo will consist of AC for 4 treatments every other week and then Taxol for 12 treatments (once a week).    The new drug or placebo would be administered along with the Taxol and then for 10 treatments every 3rd week.   Total chemo 50 weeks.    Well I wish you the best in your decision making and treatments.   It is a very scary time.    

Hi Hope...

First I wanted to wish you well with all of your treatments and decisions.  I remember all too well that this is a scary time.  I did want to tell you that I had NO family history of any kind of cancer. However, I did have the genetics testing and found out I was BRCA1 positive.  Insurance paid for 100% of the test.

Wishing you all the best,

Kathy 

Hi Hope

I am in the same boat as you, very scared, terrified.  Especially that it has been 2 months now after diagnosis, and I haven't started chemotherapy yet.  Nobody seems to care, my doctors are all doing things each on their own, and there doesn't seem to be any correlation amongst them.  I think I am lost in the system.  I am tripple negative as well, got diagnosed on July 20.  They are supposed to start Chemo on Sept. 21, two months after.  I had two lumpetomies, and now am healing from an infection, in my opinion due to Surgeon errors, she did not know what she was doing, I swear.  I have the drains on me right now.  I want to heal 100% before starting chemo, but every day I think, whether cancer must have come back in 2 months.  Does anyone know whether I am safe while this 2 months is passing by?  Due to calendaring problem, the oncologists' nurse just decided to go with the Sept. 21st date, rather than thinking that I am tripple negative and that I need to do this ASAP. Only the second wonderful surgeon said to me, you need to get going with the chemo.  My God, I am so scared that it might be lodging itself somewhere.  Also, no one suggested that I do a mastectomy instead of lumpectomy.  My right breast also has some residual columnar cell hyperplasic with flat epithelial atypia extending to the surgical margin.  This is not cancer, but pre-cancer and while they took out the atypia, there still seems to be stuff at the surgical margin left.  I am freaking out.  Please someone help.  My surgeon just ignored me and said "No more surgery", with no explanation, regarding the right breast. A nurse has told me that I should do chemo first and then think of the right breast,  maybe the cells will go away.  But I want them out, not just go away.  Maybe I should consider double mastectomy after chemo finishes in December.  

Lovelyface, I'm not a doctor and don't know your particular situation, so can't really advise. I can tell you that I was Grade 3 (9/9 on nottingham scale) aggressive, 2 tumours, had a lumpectomy 4 weeks after diagnosis, had further surgery (axillary node removal) about 4 weeks after that, then started chemo 3 weeks later after recovery - so that was about 11 weeks altogether - and I am doing fine so far. My onco pointed to a study that showed no difference in outcome for women who start chemo within 12 weeks of surgery - however once you get past that, risk of recurrence rises. They did not break out results for trip negs however.  My sister  (who was not trip neg) got  a bad infection which burst her lumpectomy site, and she had to wait 13 weeks to start chemo.  The (same) onc did not want to start before she was well healed because of the risk of further infection. Nearly 3 years on, she is doing fine too.   

Hi Lovelyface,

I was trying to find the thread where someone spoke about the time window for chemo to start following sugery.  I honestly don't know if there is a standard, but I do know there seems to be an answer for every question on these boards.  Just try not to let the thread get buried due to high volume.  Bump it up if you need to.

So my personal experience was I had to wait 2 1/2 months from surgery to my first chemo start.  We had to push it back a few times due to cellulities/hospitalization, another surgery to replace my tissue expander,  and then the holidays rolled around. I sort of lost my momentum, but did get to see my family for X Mas which was priceless.

Luah gives around the same answer I remember seeing a poster give....I'll see if I can flush it out.

Yes, it is important to have no active infections prior to starting your chemo.  They will check your blood work before each round as well...which will include your WBC (white blood cell) count.  This would be elavated during infections, and is expected to drop during chemo.  The Neulasta shot helps increase your WBC's during chemo, in order to help protect against infections.  Many of us are given Neulasta the next day after our chemo infusion.

I had my drains in for quite a time after surgery, and they had to be out before my chemo started. (increased risk of infection)  We pulled it the day before chemo.

so to sum it up....my chemo was delayed, and we also knew we needed to get moving and I was still on antibiotics when I started, but there was no active infection.  Yes, this is a very scary time, and your anxiety is very normal.  My honest opinion would be to re-evaluate if you want/need any further surgery after you have had a time to decompress after chemo.

Wishing you the best, hang in there!

Traci