BRCA 1 and TNBC - Anyone out there?

Dear all,

 I 'kind of' fit this group. I was diagnosed with Basal TN IDC on 8th Sep 2009. Had neoadjuvant chemo but treatment was withdrawn after four cycles due to no / little response. Mum had ovarian cancer, her sister had breast cancer and her brother died of pancreatic cancer just before I was diagnosed with BC. The hospital felt that I may have the BRCA mutation. I had the test and they found a mutation in BRCA 1 of unknown significance. I am taking part in BRCA research in the UK so they are following my case with interest. My Oncologist felt that given my family history, I should have both my breasts removed and ovaries. But, as my results were of 'unknown significance' I had a lumpectomy on 4th Jan 2010 followed by rads. First annual mammogram in Jan 2011 was clean. Then in summer 2011 I experienced pain in my left breast this time and found a 'ridge' which seemed to be growing / spreading. I had a mammogram and ultrasound in Aug 2011 which was clean - no abnomalities. They would have sent me away if I did not have a history of BC so they adopted the 'belt and braces' approach and did a biopsy. It's a long story - but on 16th Oct 2011 I was diagnosed with grade 3 DCIS ER-/PR- that was invisible to scans. They had no way of knowing how extensive it was or if there was any invasive elements so they recommended a BMX. It turned out I had 4cm of DCIS, grade 3, with the same pathology as my original IDC (except of course this new one was pre invasive). I feel that I caught this new one early and the BMX has saved my life. The genetics specialist at the hospital said that I should consider myself to be BRCA 1 + as I fit that profile so well. Those who carry the faulty gene have a 25% chance in a lifetime of developing BC in the other breast (contralateral BC). The hospital have sugested that I seriously consider having my ovaries removed and I have decided to have this operation next summer.  

Hi,

Was hoping to join in your discussions.

I was diagnosed Jul 2010 with BC. Single mastectomy Sep '10, chemo/rad until end of April '11. Then had testing...BRCA 1 +

Feb 9th had my ovaries and tubes out. Very quick and painless. I kept the uterus because my risk was not increased and it would cause more problems to remove, than just leaving it there.

I am booked for another mastectomy and DIEP at the end of April. Then I hope to be done with this chapter.

Lisa: I hope you are doing well

mamachick: I think I have seen your posts elsewhere. Nice to see you. We seem to be on a very similar path.

Like many of us, I have tried to be strong for my kids and husband. They have been my driving force. Now, I cannot believe it has been a year since I finished chemo. I had AC and Taxol. The most brutal time for me was the treatments. But now that part is over. I feel like I have aged 20years. I am so deconditioned and tired. My feet kill me with every step I take. But I am alive. I see my kids growing every day. After my mastectomy, people would feel bad. I would just joke....I've lured a man and had 2 kids. Don't need them anymore! lol

So far all my scans have been good. I still dread going for results. I am being followed every 3 months still. I think I am most angry about the BRCA more than anything, because it now involves my kids.

Anyhow, I am here to offer my support as well.

Welcome Ladybug- sorry you have to join us, but glad you are here!

Had the hysterectomy and ooph prior to BC and I am glad I did!  Thankful that I don't have to worry about that too.  I understand what you mean about being BRCA 1 effects my kids.  That I think gets to me a whole lot!  I have 2 girls and my sister has 3 and now we have to worry about them too!

Lisa- good luck with chemo! I started chemo about 5-6 weeks after my BMX.  It was fine with the healing.

Well, I will be off of the boards for a while.  I have my DIEP on Weds. in Charleston, so have to travel tomorrow and have appointments all day tomorrow for this and that after we get there.  Take care and I will talk to you all soon!

Ladybug- I am sorry you are still feeling worn out.  I finished chemo last March.  Going on a year.  I started feeling better about Oct.- Nov. HOpe it picks up for you!

Hi hope you don't mind me joining in on occasion....seem to go in spurts as to when I come on the boards...have been around for a little while.

Here's a little background

Dx in March of 08, had left mastectomy and AXL node dissection on April 2 , chemo FEC + Taxotere on May 8. then finished with radiation  in Sept.   It's quite a long process to get tested up where I live  for the BRCA so had to wait close to a year for results..BRCA 1+.   2010 had my ovaries and tubes removed laproscopicaly....very easy surgery.   I am still trying to get the nerve to get the other mastectomy done as for me I know this is a no brainer with the history, but it seems alot harder to get the nerve this time.  I am thinking maybe this fall.  Right now I get mammo's every 6 months until I make the descision.

Even though it is now coming up on 4 years out which is a great thing...I find the anxiety is still lingering ...maybe once I hit that 5yr mark I can relax !

Good luck to those doing chemo or recovering from a surgery.

Hello!  I am back!  Well I have been back but not on the computer much.  Feeling really good, but tire easily.

Welcome Angles!  Sorry I wasen't here to greet you sooner.  I too had a delayed result of my BRCA status, but because of my type and already had node involved I was encouraged to do the BMX right off.  I don't know if I could make the decision you are facing that would be very hard.

Lisa- have you started chemo yet? What treatment are you scheduled for?  We are here for you if you need to talk about anything.  I had chemo, but no rads.  The chemo was doable, but tiring in the end.

Hope you are all doing well! Talk to you soon!

Sprry Lisa, I haven't been getting on the computer as much these last few weeks.  I wonder why.

You will feel foggy from the chemo, don't think it is chemo brain yet, but all the meds you get during treatment will make you foggy and tired.  My first week after chemo was usually the hardest, but mainly tired.  Chemo brain does not take long to set in though and I hate to say it but it will last even after treatments.  A lot of people work during chemo, I am a stay at home mom, but we home school and I was able to do that. What kind of work do you do?  I will be thinking about you with treatments. I think the Adria was the hardest for me, but I had TAC DD x6 so it could have been any one of them.

I am feeling really good.  Getting stronger everyday!  So glad I went this route for recon.  So happy with the results already. Nice having a flat tummy too! lol

Hope everyone is doing well!

Jennybg....I had my testing after all my treatments, because it took a while to get the referral and appointment. My surgery was done urgently, so could not get it done in time. However, once the results were in, I immediately booked referrals for surgery. My treatment would not have changed my Oncologist told me.

Ovaries and tubes just came out. 5weeks to go before 2nd mastectomy with bilateral recon.

Hi all. I am new to this whole site and board. I live in norway but moved from london so it is hard to find english support groups here. I am tnbc with brca 1 mutation. Had my healthy breast removed last week and trying to figure out when to do ovaries. Everyone tells me something different and it truly life and death decisions here. Any advice welcome. I am 32. Very scary stuff and am so glad to find a group like this.

Best of luck Trista13, it is hard to believe women so young have to go through this. Sounds like you have the right attitude to beat it though! You are in my prayers.

Hi all, I am 29, BRCA 1 and pretty much TNBC (my tumor was 5% Pr+) I have finished 12 weeks of Abraxane and Avastin (clinical trial) that has reduced my tumor drastically. I have complete 2 sessions of A/C and have 2 more to go. I never heard of BRCA before I was diagnosed, wish someone had mentioned that test since my mom and her aunt both passed from ovarian.

Well a lot of things suck about BRCA 1 and TNBC, one positive is that several studies indicate that BRCA 1 carriers with TNBC have a higher survival rate than sporadic TNBC. TNBC may be the only thing in my life that has ever made me say "I am glad I have that BRCA mutation"

Fortunately my only sister and my brother with 3 daughters have both tested negative. I have one more niece who is 16 who is testing this month. Hopefully she gets the all clear. That would cover all the girls in the family at least. It is hard to deal with a genetic cancer, worry about loved ones makes my own cancer journey more difficult. Not to mention I have BRCA related PTSD from losing my mom to oc when I was a teenager. BRCA is crummy.

Was diagnosed TNBC in April. Got the BRCA test back today. Positive for the BRCA-1 mutation. Electing for ovaries and bacterial. Ugh. I was hoping to avoid major surgery.