BRCA Negative even though mom/gran had DCIS

katherella70

Dear Wonder Women,

I just received my BRCA results and was almost certain it would indicate positive.  That said, I was leaning more toward the mastectomy camp versus lumpectomy.  Now that I know I'm negative, I am starting the thinking process all over again.  I'm 38, no kids (yet!) and have many years of surveillance ahead of me ... any words from your experience that would help me proceed would be appreciated.  I'm meeting with my onc before the procedure (not yet scheduled) so she can lay out the outcomes/treatment of both procedures.

My Warmest Regards,

Kat 

giglgrl

I am in a similar boat.....I have had three aunts with bc but I tested negative for the gene. I was all set to do the double mast. and now have been second guessing. My surgery is scheduled for the 15th. I am leaning towards just continuing with the double as it leaves the least % of chace for a reoccurance. I have made another appt with the doctors to go over everything once again, just so I can get any last minute questions I have in my head answered. Maybe make an appt with your doctors to go over everything again. It would be so much easier fi they just told us what we had to do.

Good Luck

katherella70

Thank you for your messages.

Ivorymom:  Did you find the care at UCSF to be better than what you could receive locally?  I'm being treated through the AVON foundation at SF General, but both my surgeon and onc are professors at UCSF. 

Are you taking tamoxifen? 

giglgrl:  tough decision (good luck with your appt)... yes, wish it was as easy as the docs telling us what to do.  Please keep me posted on how you proceed.  I'm so on the fence and every day am changing my mind.

Best Wishes,

Kat 

sopris

So, can I ask some questions?  I just had a lumpectomy and sentinal node.  Now I need a reexcession since they didn't get enough of a margin.  Confused by that.  They tell me I need a port and 9 months of chemo.  Is that overkill with a Stage 1 tumor?  It is Grade 3 and Her2+

katherella70

ivorymom,

CONGRATULATIONS on finishing our rads today!   Fantastic news!  Good luck with your next visit.  Are you opting out of Tamoxifen for now?  

  

katherella70

ivorymom,

You look so young in your pic, isn't arimidex for post-meno women?  How do you feel about hormonal therapy? 

I'm doing as well as can be expected, just trying to have fun with friends before the serious work begins.  My 1st onc appt is this Tues, preceded by my MRI on Monday... hoping they can read results that soon (fingers crossed).  

While I have IDC, both my mom and grandmother were DCIS.  I'm curious if my chances of having DCIS are high due to the family history. Although I suppose it's possible my tumor could have originally been DCIS???  How does that work?  Plenty of questions for my onc on Tues.

Happy Weekend! 

lilith

Just a quick note about the findings of being BRCA negative and the change of heart.

Being BRCA negative simply means that the genes known to facilitate BC aren't there. However, lets remember that the studies on our genoma are only starting... 

With a strong family history, it is still possible that there is another gene that acts. Who knows. With several women in the same family going down with BC - it sounds too much of a coincidence! 

ddlatt

sopris - i had a stage 1 tumor, grade 3, (and i'm triple negative) and my surgeon got a 1mm margin, but the tumor board and my med onc said that they don't consider 1mm a clear margin; they want to see 2mm, especially with chest wall tumors like mine. so i had the option of more surgery or radiation. i knew i was having chemo already. i opted for the radiation because i felt more confident that it would eradicate whatever cancer cells were still in my chest area. 

katherella70

Hi lilith,

Thanks for your message.  You bring up a valid point.  I think that since by mom was in her early 40s when she got BC, and I'm under 40, there has to be some sort of hereditary element that exists.

How are you doing, now 2 years after your diagnosis?  Were you given a choice or did you have to opt for mastectomy with the node involvement?

My Best,

Kat 

lilith

Kat... 

I am doing great. It will be my cancerversary next week, and I am good (touch wood). My next doc appointments are in November...

My docs didn't offer the lumpectomy, even though the node positive was not known pre-op. However, I am happy that they didn't. I would have probably considered it, and in fact in that way it was a lot faster. You see, after lumpectomy radiation is strongly recommended, while I was able to skip it. Rads aren't too bad, but they delay recon by another year at least, and make simple procedures more difficult. Given the mastectomy, I chose to have the other side out as well, and the implants were easy. 11 months after the original operation I was back in a swimsuit, looking totally normal. For me, that was important as well, as I am able to keep going with my life without the daily reminder of seeing the mirror. 

katherella70

ivorymom,

Thanks for your thoughts.... today was rather frustrating, I must admit.  Not only were my MRI results not read, but my onc was the only physician today and the breast clinic was understaffed. Long story short, I'll have to wait another week since these appts are only on Tuesdays.  I even called first thing this morning to make sure the results would be ready.  At least the NP offered to call me with the MRI info before next week.

Tick tock, tick tock.   

katherella70

lilith,

Happy Cancerversary!  It's great to hear how well you're doing and that you're happy with your results...