anyoneTN with DCIS and microinvasion with no chemo

Ellie, it seems to me that you and I are in the same situation and are the only one's on the planet in the same situation!!  I have searched and searched and can not find any other triple negative that did not get chemo.  I also can not find anyone else that had a tumor as small as ours, mine being 2mm.  I was just told last week that I did not need chemo and was so glad to hear that, but at the same time a little nervous about it too!  Well...ok...a lot!  I believe in and understand what the Dr.s are saying, but am thinking of traveling to where ever it is that specialized in tn, just to make sure I am doing the right thing as I have three very young girls at home.  I will just tell you how my story went....

I started out with a needle biopsy and what they took out measured 2mm, this was triple negative.  Then I went to a large breast cancer center and my oncology surgeon sent me to have a MRI and it showed 2 more areas of concern that they wanted to biopsy and at that I said "no thanks get rid of the boobs and test it all when your done"  I personally could not handle going thru any more testing and waiting and didnt like the idea of radiation, because I read that they havent done long term studies on the effect of radation on young people and I was a basket case already!  I was told that I would definately have chemo after my surgery.  So, I had the mastectomy Sept. 9 and just got the results back last week that in wasnt in the lymph nodes nor were the other spots cancer and also ....which is still blowing me away ...was that there was no cancer in the area where the original spot was....they apparently got it all out with the needle biopsy!!!  What the heck, can you believe that!!  So, they also told me last week that I did not need chemo, that the bad risks of what chemo could do out weighed to good.  

 I have searched and searched and can not find any studies on this or anyone that has been in our situation.  I am totally overjoyed one minute about this and nervous as heck the next and am having nightmares that they missed something.  I am always wondering if they ever accidentally miss looking at something or mix up tissue.

Bessie, you totally amaze me with all your knowlege about breast cancer and the time that you devote to explain all this, you are the answer to so many people's prayers and I hope I will be able to help just a few people one day the way you have hundreds or more I'm sure!!

Tammy

Yes, pretty much leaving it up to me.  Because so small -- but b/c I'm young, etc. and TN is supposed to respond well to chemo two doctors have said just go ahead -- but they can't really tell me what it buys me.... vs. what it could cost me.  I need to try to change my profile as this is a local recurrence -- and may also be why they recommend but don't demand chemo.  I have heard the "gray" area so many times I want to scream!

That there isn't any good data - that shows benefit over risk of chemo.  That in most cases small tumors (T1a) do not benefit from chemo -- but again there are always people where the cancer does metasisize even when DX was T1a.

I was diagnosed in July 2010 with DCIS, High Grade.  Had mastecomy right breast with sentinal node.  Latest pathology showed Grade 3 DCIS with Microinvasion, ER, PR, HER/Neu negative with no further treatment required except recommendation to have other breast removed as well as ovaries removed.  We seem to fall into a very small category and that somewhat scares me.  I am also positive for BCRA 1.  Like to hear from other with similar story.

TSMC4 and Ellie, you are not the only ones!  I had a much larger tumor, and did not have chemo or rads due to secondary health issues.  I am now 18 plus months post lumpectomy, which is all the treatment I had.  Actually, I had a second lumpectomy one week after the first to clean up some DCIS.  There are a few of us out there....very few though!

Sugar77:  Finally someone similar to me!  Thank you so much for posting.  I'd seen you on the other TN thread here but had no idea yours was small like mine.  Seems most TN this small don't get offered chemo, so it's good to hear my onc isn't the only one.  Oh, and must comment about Mississauga!  I could be wrong, but I believe this is one of our favorite spots.  Is there a portion of beach there where the water stays shallow for what seems like forever?

Could be, but I could swear we stopped once or twice in Mississauga.  Either way, wherever that shallow water beach was, it was absolutely beautiful and my little ones (at that time) loved it!

My onc called me earlier wanting to know if I could come in tomorrow morning.  I guess she wants to get things started.  I told her I'd LOVE to come in earlier, but kinda hard to do being on the other side of the US.  At this point, I think I just want to get it started so I can get it done.  I figure with any luck, I "may" feel fairly decent for Thanksgiving, and will be somewhat adjusted to things by Christmas.  I might actually be done by around Valentines Day if we get started asap?  That doesn't sound too bad.  I've been reading the cytoxan/taxotere thread here (all 200+ pages!) so I'll be as prepared as possible.  Hope everyone has a good, pain free evening!

Well thought I'd update.  I had 3 mm IDC taken out at stereotactic biopsy and DCIS less than 1 cm left at final pathology after bilat mx.  After seeing two onc's, I decided to have TC x 4.  My last treatment was 1/31/11, so I'm 4 weeks pfc now.  I had the last of my surgeries Feb 28th (oophorectomy and exchange).  I feel I've done all I can to knock this beast outta me.  I know I was in a grey area, but both onc's I saw recommended chemo because of my age and being TN.

SusanHG:  If I were you, I'd do chemo just to know I'd done all I could.  If it comes back, will you regret not getting chemo?