Just Diagnosed Triple Negative.. Scared

cc4npg

Ok, well I started reading the thread "calling all Tn's" and it's so long that I haven't finished it yet.  Here's my story thus far:

43 yr old, white, 3 kids (21, 19, 2), nursed, non-smoker, non-drinker, small breasted (maybe an A), dense breasts, 103 lbs, 5'2", size 0-1.  Baseline at 35.  Mammo at 42 after nursing was ok.  Mammo August 2010, callback, 4 microcals left breast not seen last year, question of assoc. density.  BS gave me a 90% chance of nothing, but biopsy revealed DCIS one day, then the next IDC, grade 2, lymphatic/vascular invasion absent, ER-, PR-, Her2 equivocal.  MRI last week showed rt breast ok, left has increased density at near biopsy (there is a small lump leading from the hole at biopsy but told this is normal?), also density in upper inner quadrant, and mentions "small non-specific lymph nodes in axilla".  I have yet to meet with plastic surgeon (he's on vacation).  Scheduled for surgery Oct 7, and that seems far away to me.  I wanted immediate reconstruction... am I being too vain?  I'd much rather live if you guys think I would be better to get the surgery done, let me know.

Family history... no uterine, cervical, or breast cancer in either side EXCEPT half sister... she was hormone positive, presented with lump, had unilateral mx, chemo, Tamox, and is 6 years out.

Has anyone else found their TN cancer from just microcalcifications?  Obviously I'm scared about lymph node involvement.  Our cancer care coordinator tells me breast cancer is slow growing and a couple weeks will be ok to get everything done.  Already decided if I have BRCA I will have double mx.

anna62

Hi Angelisa

My triple neg was found in my multicentric calcs in my right breast.  I opted for bilat mx with recon.  My DCIS turned out to be IDC according to the mx. tissue, but sentinel nodes were clean.    You are not being vain, you are even younger than I was at the time of my dx. you deserve to have what you want !!!  I am assuming that you have not had your nodes biopsied yet ??   I am so sorry that you have to go through all this, sending you hugs and positive energy !!

Anna 

ravdeb

I'm 5 years out since diagnosis of triple neg.

I'm older than you and have very dense breasts. did a lumpectomy. Five years ago they didn't even offer a mast. for me.

Because you are young, I think the mast with reconstruction is a good choice. I'd probably do the same. I have large breasts (though one surgeon told me that they weren't THAT big and my husband was insulted!!! LOL) and my tumor was 2cm so this is why I was told a lumpectomy would be good.

Do what makes you feel good and being vain is not even a thought when it comes to this.

cc4npg

Thanks for the replies.  I'm going to talk to the surgeon and plastic surgeon to make sure they don't feel a dmx would be advisable.  It's not that I want a double, but this is a very scary thing and I think I may be reacting like most who want to do everything possible to knock it out the first time.  However, I don't want to overreact if a dmx isn't necessary.  Since the MRI showed the right breast was fine... I wonder what the chances of getting the triple negative in the healthy breast really are? 

It seems like I'm second guessing everything and nervous about everything at the moment!  But life will go on after my surgery, and chemo... I've read tons of posts where life has gone on with no recurrence so I have to look at it that way right now to get through it.  Triple negative has the better long term outlook is what I read.  I still don't feel a lump at all.  Has anyone ever had triple negative at biopsy and then something else determined after surgery?

Luah

Angelisa:  Hopefully you'll get some good answers from your docs. Be specific with your questions.  It's natural to want to throw everything at this, but besides the emotion, look for evidence that a given treatment will really benefit your outcome.    

Julia123

Hi Angelisa,

I was initially diagnosed by microcalcifications at mammogram and told DCIS, Stage 0. At surgery, it had already spread to my lymph nodes and I became Stage 111a (but no mets). My DCIS biopsy showed HER+, but I've since been told by 3 doctors that DCIS is, for some reason, always HER+. They were, at that time, essentially doing the biopsy pathology on a different part of my tumor(s) than the IDC it turned out to be. 

I am like you in that I told myself I'd have BMX if I were BRCA positive - I have a strong maternal side family history. As it turns out, my BRCA was negative, but I was told that they believe they have probably only identified 2/3rds of heredity connections.

It's a very personal decision whether to go with the recommended lumpectomy in this case or BMX -- my first thought on diagnosis, no matter how early (and as it turns out, it wasn't early and I've not regretted it a single minute), was "I want them GONE!". In my view, now that insurance companies are required to pay for reconstruction, there is no reason to keep them and possibly have to have follow up surgeries if they don't get "clear margins", no more mammograms this way, my boobs will be an even size/shape, etc. But mostly, my feeling with my strong family history is somehow that - for whatever reason - my risk of recurrence IN the breast tissue is higher and I want almost none of it left! :-)

 As I understand it, for a diagnosis like my initial one (and probably yours), doctors don't "recommend" that you do BMX because it's not the "least invasive response", it's your decision. However, when I said I wanted it my surgeon immediately agreed and over time, literally every one of my doctors have told me it was wiser if a woman is okay with the idea of it and would make things easier on me in the long run (testing, etc.).

Good luck to you as you make your individual decision! And I will be sending positive vibes your way for NEGATIVE nodes! :-)

cc4npg

Can some of you who are BRCA 2 positive help me out??  Please??  I just found out today I'm positive for this defect... and I'm shocked all over again.

There is really no breast cancer in my family other than my half sister, who had a mastectomy 6 years ago.  My maternal grandmother had 3 brothers who all died of internal cancers, and she had skin cancer, but that's it.  My grandpa had prostate cancer very late in life.  My dad is Hungarian, and people have joked that I was of Jewish decent, but now... I don't know what to think.

And being BRCA 2 positive... I was told there "could be" a link to skin, colon, and pancreatic cancer although some studies are conflicting.  Does this mean my chances of beating this just went down the tube?  

I haven't been studying up on this defect... I didn't think I had it!  I'm completely devastated...

Shirlann

Hi sisters,  I am 75 and just finished my 12th year post treatment for TN.  I am doing fine.  Hope this info encourages some of the scared ones.  Actually, most of us do quite well, after 2 to 5 years our recurrence/met incidence just plummets, almost home free.  Other types just gradually turn down.  This is something to be glad about.

Gentle hugs, SHirlann 

Fighter_34

Shirlann your message warms my heart. Thanks. I hand my dmx on 9/23/10 and nodes were clear. Not it's time gear up for treatment.

pas

I was diagnosed with a 2.1 centimeter, node negative, grade 3 tumor, triple negative in 7/2005.  I had a lumpectomy and chemo/radiation.  Last year I decided I wanted genetic testing even though my previous oncologist said it would probably be negative.  Well, I was positive for the brca2....I opted for a bilateral mastectomy with reconstruction and I've never regretted it.  I was told that the chances of breast cancer in the other breast would have been high and also a risk of ovarian cancer.  So, I also had an oophorectomy.  I just didn't want to have to worry all the time about it.  And even though I am 5 year cancer-free, thank god, and a recurrence will always be possible, I was told my risk of recurrence now has dropped dramatically.  Hope this helps !

 hugs,

PS 

cc4npg

Yes, it all helps.  I just had a bilat mx 10/7 and doing well.  Will have ooph within several weeks.  Getting ready for 4 rounds of TC.