Triple neg + stage 3b + fairly young = lousy prognosis?

FarAway

Triple neg + stage 3b + fairly young = lousy prognosis?

FarAway

Hiya all!

I'm new to this board and just found out about triple negative being a bad thing and am somewhat confused now.

Over here where I live (Germany) hardly anyone talks about being triple negative although we too get tested for ER, PR and HER2, of course. I only knew that not being HER2 positive was considered being a good thing and that being ER and PR negative meant there would be no hormonal therapy in my case.

I've only had my diagnosis for 7 weeks, so all this is fairly new to me. I'm getting 6 x TAC neo-adjuvant  (had the first one two weeks ago and luckily hardly any se so far) and from what I've read, my tumor would be stage IIIB if I've had surgery first since it's rather large, has spread to the chest wall and ax. nodes.

Plus, I'm fairly young (39) and they say the younger you are the more aggressive your cancer tends to be.

I changed doctors right before chemo started so things have been a bit chaotic and I've learnt most of what I know from the internet.

No one has talked to my about my prognosis yet and now I sit here wondering how bad it really is since triple negative, stage IIIB, grade 3 and being young all comes together in my case.

Of course I'll ask my doc when I next see her, but I hope in the meantime you can help me with some more info.

So far I know that my cancer is fairly aggressive, can only be treated with chemo and rads and is more likely to have a recurrance and develop mets. Anything else?

I'm looking for honest answers 'cause I wanna know where I stand. Thank you.

FarAway 

ravdeb

I'm also triple neg but not as young as you are. I was diagnosed at age 50. I'm two years out.

I also don't hear much about "triple neg" here where I live but one onc who I saw as a second opinion told me to go aggressive with the chemo because of the hormone negative.

You are doing the best treatment available for triple neg from what I've heard and read recently. It changes all the time.

Don't dwell on prognoses because doctors can't say for sure what will be. They can guess but ya know...80% of the tumors found are not cancerous in women and we didn't fit into that group, so I don't put myself in any statistical group.

You need to concentrate on getting through the treatments and doing all that you can and then just LIVE! Don't dwell on what might happen but rather on what you can do today.

Good luck!

FloridaLady

Hi Farway,

I was diagnosed at 45 with very aggressive bc with 25/27 nodes positive and had touch the skin. (inflammatory) The key for you maybe like me that it will stay locally aggressive. This hard to treat but is treatable.  But less likely to jump to mets of lung, liver or bone.  Each of us never know what going to happen.  We all are different and responded to treatment different and receive different tx.  But you must live daily and try not to second guess what's next.  I know it hard to do this...but it will keep you sane.

I have been in tx for 2 years.  Had 7 chemo's and hit 24 times.  I still feel good and working 30 to 40 hours a week.  I had a life the whole time.  You need to research Germany for treatment they are 3 to 5 years ahead of US.  Their are excellant doc's in your part of the world.

Living in hope.

Fla

TINAMAE

Faraway, I too am triple neagtive and young , but my oncologist says that triple negative is all about biology and no one can tell how you will react to treatment, she said dont worry because just as many women who are estogen + have reacurrences as do -, so just keep your head up and keep thinking positive,my tumor was 4.5 cm when I started chemo and know after 4 you cant even feel it. I will be praying for you just put your faith in God and he will help you through it.

Thanks Tina

CalGal

Hi Faraway -

Another trip neg here, but despite being dx'd at 2 cm, with bi-lat lump's (invasive bc and DCIS), clear SNB, followed by 38x rad'tn, less than 1 year later, I got mets ...

One thing they don't tell us here in the US, is that bc spreads not only by the lymph system, but also the blood. 

After my mets dx, I also tested pos for BRCA1.  While 80% of BRCA1's are trip neg, it doesn't go the other way around.   Unless you have a family history of early onset bc or oc, it's not likely that you're BRCA1 ...  But, being as you also were dx'd on the younger side, you might want to consider genetic counseling and the BRCA test ... If I knew that earlier, I would have made different decisions ... 

I did lots of chemo in 2006.  I started with dose dense AC, which completely shrunk my recurr bc and my liver mets went from 4 to 2.  I then had to fight to get RFA (radio-frequency ablation) of my liver mets. 

I've done a ton of internet research and it's getting more known that "the platinums" (carboplatin and cisplatin) are good chemo options for trip negs.  I did Carboplatin & Taxotere.   But, from the RFA, the liver mets have been gone 15 mos!  Unfortunately, in July, I was dx'd with lung met(s). 

Also, with all that research, the prognosis for trip negs is not great.  But, those are statistics ... I'm not a statistic!  Plus, by the time that data gets reported, it's old ...  

I'm now on an international clinical trial for PARP inhibitors.  You have to be BRCA pos and either Stage III or IV.   It's targeted therapy, 16 pills daily ... and minimal side effects.

If you google it, use PARP inhibitors ICEBERG1.  I'll have my 8 wk CT scan in 4 more wks and am hopeful that my lung met(s) will be gone or at least reduced.  They're doing a very similar trial on oc ... and have had great results so far.

Focus on getting the best treatment you can and beating it - not the prognosis!

CalGal 

Rainenz

Hi FarAway

It is hard being newly dx, but here is my story as it may help.

I was dx with triple neg Stage 2 grade III breast cancer at the age of 42 and had 6+ nodes, I had a lumpectomy, chemo and rads. so far everything in that breast is ok...That was almost 11 years ago.

Although I was dx with a new triple neg  primary tumor in the other breast July 06 This time I had a mastectomy chemo and rads, as I had 29+ nodes making it stage 3.  

Am doing well now and plan to be around for a long time yet! 

Just focus on your treatment and take it one day at a time.  Prognosis is only a word and we are all unique so don't let the figures upset you.  There are many triple negative ladies out there still going strong 10+ yrs out from dx.

Luv 

nosurrender

Hi Faraway,

I was diagnosed with a highly aggressive grade 3 tumor that was heading for the chest wall. I did chemo and rads and had a lumpectomy. I too was told that I had the bad cancer and one that has a bad prognosis.

That was SIX YEARS AGO.

The longer you go recurrance free the more likely it is that it won't ever return.

Triple negs respond BETTER to chemo than their ER/PR+ counterparts.

And you are right, you don't want to be HER2 positive.

You are doing all the right things. Keep looking forward and moving ahead. There is a lot of research going on right now and many new drug combos for triplenegs... but you may not need anything because you are hitting it hard now and that is your best chance of beating this.

Good luck to you and please come back and let us know how you are doing.

g