Calling all TNs

Titan, I also had a lumpectomy and my definate understanding is that the statistics are just as good for lumpectomy plus radiation, as for a masectomy. That is what my MSK surgeon told me, and what I've read.

Dispite no family history of BC or other suggestive factors for a genetic link, I did have the testing done because I have two daughters, ages 20 and 23 (amazingly insurance paid).  It was negative for the BRACA  mutations, but my Onc, who also has a Ph.D in genetics, says my daughters are still at greater risk than the general population.  He says there may be genetic links or mutations we have not yet identified. 

My heart is heavy for the poor 25 year old girl, and her parents. 

Titan:  I had bilateral mx, and am BRCA2+.  From what I understand and believe, it is a very hard decision for anyone whether to do lumpectomy vs mastectomy.  It's a personal choice, and I don't think there is necessarily a wrong or right decision.  Also, they tell me there's no difference in prognosis between the two.  However, I think being BRCA+ does have an effect on local recurrence.  In my case, I am 43 at dx, which sent up red flags to my BS and he recommended testing based on that.  I went ahead and did it because I didn't know much about my dad's side of the family, and I have a half sister with BC dx at 41.  I was shocked I came back positive, and had already decided what I would do if I was based on what I'd researched.  However, being BRCA+ doesn't mean a person will definitely get breast cancer or ovarian... it's just a marker indicating your chances are greater.  Being tested is a personal choice, and I know of many who have decided against being tested... who had only lumpectomy... and refused ooph even though their doc recommended it.  You have to do what you feel you need to do. 

That being said, I chose to have a bilateral and am glad I did it.  I didn't want to be BRCA+, but since I know I am, now I can try to encourage my daughters (who've just been tested) IF they come back positive.  I was also able to contact my half sister and inform her (she's also being tested).  I hope everyone comes back negative, but there are things they can consider if they are positive.  And at least they'll be able to keep a really close eye on things.  Me personally.. I will have the ooph.  I don't relish the thought (early menopause and all that), but I'm completely comfortable with the decision.  

Titan- you are just having a moment of self-doubt. I think we all get that from time to time and the 25 year old brought it to the surface (BTW- there's a thread in here with a Stage 4 16 year old).

Stats back up the fact that a lumpectomy with chemo & rads has as good an outcome as a mastectomy. Don't second guess yourself. If Mx was the way to go in all BC scenarios we'd all be boobless wonders.

As for the BRCA, I *did* ask and was told it wasn't necessary, especially since I did not have daughters. Like mitymuffin said, there is still so much to learn about individual gene expression and how it impacts BC. They just don't have all the information needed to accurately predict who is most likely to have a recurrance.

So, it's back to the crapshoot  odds.

Sugar77: I love that story about your friend!!!

Titan~ I had genetic testing because of my age, family history, and a second primary (DCIS) in the same breast but distal to the *big*  IDC tumor.  It was neg.  I had a bilat and an oorph anyway.    I did this for several reasons: 1. I'm neurotic; 2. I have a family history of both breast AND ovarian cancer... in fact, my aunt died of OC while I was in chemo for my BC; 3. chemo put me in menopause; 4. I didn't want radiation (it is a personal thing I have against radiation).  With all of that said, there are so many ways to go about treating TNBC.  I don't think there is any single best way.  FWIW~ My breast surgeon didn't want to do the uni-mx at my dx; he wanted me to have a lumpectomy + radiation.  However, the 2nd primary was found on MRI.  He also wouldn't do a bilat MX.  He made me wait till after chemo for the prophy side so that I was absolutely sure that's what I wanted.  But.... my onc was pro-bilat and pro-oorph from the get-go.  Soooooo.... I think you are fine with your selected Tx.  Just like I feel that MBJ and Sugar are fine with not having adria...  And I'm fine without axillary radiation...  {{{hugs}}}

hhfheidi:  Always the voice of reason with a good laugh!

Claire:  It doesn't sound like cancer to me either, but I would still get it checked out for peace of mind.

lynne: go to the under construction site when you gain access to the picture forum.  I am a Uni and I posted my entire process from the day before through until now.  There is alot they can do with reconstruction and great support if you decide to do this, or if you decide not to, there are women who have posted what they look like without.  Either way, it helped me make my surgical decisions long before I had my MX and gave me much peace of mind about what is possible.

Titan:  I sometimes worry too that I should hae done both breasts, or should have done radiation or that I am not daily doing enought to prevent recurrence.  I still feel as if the wind has been knocked out of me and I am trying to get back on my feet but I still can't stand for very long.  If they cleared the margins, you should be fine.  You did everything right forr you at the time just as all of us have.  I thought that if one other person in your family has had BC you get the test.  No one in my family has ever had BC, other cancers but not BC, and I have no children, so I didn't think a test was necessary.

Heidi - Thanks for the laughs!

Titan - I too had a lumpectomy, however I was denied chemo, so I know how you can always second guess the decisions made.  I have decided to enjoy every day that I have and hopefully there will be many many days!! 

Swiftbird - did you get chemo also?

I have gotten my results from my MRI and everything looks good - so I am once again clear (for BC) until the next round of appointments (March 2011). However, I did get the BRCA testing done (qualified by being the 3rd in my family- grandmother, great aunt, me - and a second cousin who died of ovarian cancer at 39), and I am negative for both genes.  The geneticist, however, is stilll recommending that I go to the high risk ovarian clinic in November because of the family history, so I know that I will still be kept busy between now and March!

Oh, Heidi:

Since reading your posts on this thread, I have had to double my use of Poise pads!  You make me laugh so hard sometimes, I pee!  (Excuse me please if I offended anyone).

Heidi, I have to admit, I totally glossed by your post thinking it was some self-righteous, pat-myself-on-the-back post, then I thought..hey, it's Heidi, I ought to read it and then laughed my fat butt off. j/k  Fortunately, for whatever reason, absolutely NOT planned... I didn't gain any weight through chemo, but am planning to start exercising once my stupid rad-ravaged skin heals... but in the meantime, I LOVE your posts.  We have enuf to worry about for goodness sakes!! Thanks!! 

fmakj, I SOOOOOOO had chemo.  I was fortunate to get in at the Mayo, after having some hacks trying to immediately rush me into surgery for a double MX fist.  My onc put me on chemo first.... carboplatin and taxotere.  I went from a 9.5+cm lump to a less than .5mm lump during my chemo treatment -- what they told me was a "A+++" response and "best case scenario" situation.  I LOVE the Mayo.  Love Love Love ! Just finished radiation.  My skin is a mess (I'm so SENSITIVE...but who cares) but it's done and I'm cancer free! YES!!

I think it's time for me to jump in here, I hope that's okay!

I was diagnosed with TN a little over a month ago, and I'm still dealing with the physical and psychological effects of it all.  I'm 41 with 3 young kids (9, 6, 3), and have no family history of BC.  It was a complete shock when I found the tumor.  I actually have two tumors, about the same size, and 4 known lymph nodes.  My oncologist insists I am Stage IIb, which I guess I'll accept since it has better statistics, lol.  I just finished my second neo-adjuvant AC treatment, which hit me harder than I expected, and have 2 more plus 4 Taxol. 

Has anyone not had a response to AC?  I don't feel like much is happening with my tumor, and I know response to chemo is so very important for TN.  I'm going to talk about it with my Oncologist in a week (next chemo), but was just wondering if anyone had any experience with switching chemo?

Suze35:  My onc told me I should be able to tell a difference at the end of my second cycle of AC.  And that is when I did feel a difference.  I wonder if you could get a MRI or ultrasound to check also, sometimes it is hard to tell just by feel.  Good luck!

Thank you to everyone who shared their experience about surgery with me.  It sounds like most of you are saying it wasn't too bad.  One of my friends said it was much easier than chemo.  So I am feeling more positive and ready to do it.  I hope you are also Monika! 

The Importance of Walking is very funny, I started reading thinking we were getting advice about how important exercise is and then I read further and started laughing . . .thank you H. 

I cried tears of happiness today.

I cried because it felt good to be back in a classroom  for a full day, growing minds.

I cried because everyone squeezed my boob when they hugged me and it  hurt so good. (Anyone else have trouble with this?)

I cried because the kids all waved like crazy when they saw me driving my red hot sportscar convertible.

I cried because the music I was listening to on the CD was so beautiful.

I cried because it was such a gorgeous day and the wind felt glorious zipping through my hair.

I cried because I was so happy to be alive.