BRCA 1 and TNBC - Anyone out there?

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  • Karen3
    Karen3 Member Posts: 307
    edited February 2012

    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 Had neoadjuvant chemo but treatment was withdrawn after four cycles due to no / little response.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.  

  • naturalhorse
    naturalhorse Member Posts: 33
    edited February 2012

    Lisa,

    My good thoughts for healing have been with you.

    kc 

  • journey4life
    journey4life Member Posts: 517
    edited February 2012

    Hi all,

    Just a little more than 2 weeks out from surgery and wanted to post an update. Surgery went well (6 hours); hospital stay was extended an extra night (total of 3 nights) for pain management. Seems the only meds that were effective were those given by IV but they only lasted an hour!  Path report came back with mixed but good news - 2/22 nodes positive (we already knew about 1), tumor was 2.0 cm (thought it was 1.2-1.4) and my margins were clear!

    I've had 2 visits to PS, 2nd one on Tuesday this week. Drains were removed (yay!) but right breast had fluid build up that needed to be "aspirated." Luckily, I don't have much feeling where the needle was inserted so it wasn't bad at all, more pressure than anything.

    One bit of disturbing news though. PS thinks right TE may have shifted. If that's the case, I'll have to have outpatient surgery to remove the current one and put in a new one. PS assures me the surgery won't nearly be as invasive as the BMX was - thank goodness. He'll make an assessment next week when I go for my first fill.

    Finally, I have an appointment with MO next week. I guess we'll determine when chemo will start.

    Can I say - I hate Fu*king Breast Cancer!!! ? (oops, I just did!)

    Hope everyone has a fantastic day!

  • mamachick
    mamachick Member Posts: 229
    edited February 2012

    Good to hear from you, Lisa!  I hope you are more comfortable now.  TE's are the pits and even more so if they aren't working right.  I hope you don't have to go through any more surgery anytime soon.  I had to wait about 6 weeks before starting chemo, I was feeling pretty good from the surgery by then. Keep us posted, we are here through it all for you.

    Welcome, Karen!  I would say you fit here too.

  • Time4life
    Time4life Member Posts: 73
    edited February 2012

    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.

  • journey4life
    journey4life Member Posts: 517
    edited February 2012

    Welcome ladybug13 - so sorry you've joined us but glad you can be support to us and we can support you. Being BRCA positive sure changes things, doesn't it? As if TNBC weren't enough to deal with.  I too will have an ooph sometime within the next year. My doctors thought I could wait until my treatments are done. Sorry about your neuropathy - has your MO said when it will get better?

    Chemo is scheduled to start within 3 weeks once I've sufficiently healed from surgery. I now have a nasty cold - I hope it won't delay tx. I just want to get the show on the road!

    Hope you all enjoy the day.

  • mamachick
    mamachick Member Posts: 229
    edited February 2012

    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!

  • journey4life
    journey4life Member Posts: 517
    edited February 2012

    Stacey - on the off chance that you'll check in here, good luck with the DIEP. Come back as soon as you can and let us know how you are!

  • angelsaboveus
    angelsaboveus Member Posts: 298
    edited February 2012

    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.

  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    Hi Angels - glad you found us! I can imagine the decision for a prophylactic MX this time is more difficult to make. Fortunately, I knew my BRCA status before I had surgery so I really didn't have to consider whether to take the non-cancerous breast. Congratulations on the 4 year mark! That is FANTASTIC and so encouraging for us with similar dx.

    How's everyone else doing?

    On Thursday, I had a PICC port put in my upper left arm. The anxiety of the surgery was worse than the procedure itself. Now, I'm just feeling a little discomfort and have some pretty substantial bruising. I'll know next week when my chemo start date will be.

    Enjoy the weekend, ladies and I hope everyone is feeling good!

  • mamachick
    mamachick Member Posts: 229
    edited March 2012

    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!

  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    Hi Stacey, its good to hear from you! Yesterday was my first A/C DD treatment. It went well - I came home with a foggy head which has carried into this morning. Could chemo-brain start this early? I am already finding that I'm misspelling simple words (mostly like I'm dyslexic) and thoughts are coming a little slower than usual. Geez...I hope I'll be able to work without too many mistakes. How are you?

    Everyone else who's been here before - How are you and where are you? lol

  • mamachick
    mamachick Member Posts: 229
    edited March 2012

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

    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
    jennybg Member Posts: 4
    edited March 2012

    Hello! I am 34 years old and I too have  BRCA1 pos, TNBC, diagnosed august 2011.My mother was diagnosed with Ovarian cancer 3 years ago, my gradma died at the age of 45 from breast cancer. I had lumpectomy , cause at the time I didn't know that i was BRCA1. I went through chemo and now I am having rads.My results from testing came last week and currently I am wondering what to do.

    I want to ask you ladies did you onc. change your treatment once your results from the genetic testing came? what kind of treatment did you have?

  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    Stacey - glad you're healing well. Be sure not to rush things - give yourself time to fully recover.

    Hi Jennybug - welcome! After diagnosis but prior to surgery and tx, both my onc and surgeon recommended the BRCA test. My mom was diagnosed with BC 2 years ago and my maternal aunt died of ovarian-related cancer. The only thing that really changed for me was the extent of the surgery. I had a BMX in January and will have an ooph sometime after I complete tx. I'm curious to know why the test was done after all your txs were over. What is your onc saying you should do?

  • hydeskate
    hydeskate Member Posts: 297
    edited March 2012

    jennybg, I have a similar family history both mom and aunt had breast cancer in there late 20's and both died of ovarian cancer in their 50's.  My mother is the one that got the test and learned she was BRAC 1 +.  I found out a week after I was told not only that I had cancer but I was Stage IV, it scared the crap out of my cousins and aunts and uncles, (I am one of the youngester of the family_ forcing there hands to get tested. 

    Two of my cousins one male and one female tested positive, the female cousin is my double first cousin (medically speaking the doctor's consider her my sister). She doesn't have cancer but they immediately ran as they called it base line testong CT Scan, Pet Scan, MRI of both breast, blood work etc, everything was clean.  They are monitoring her every 6 months, me every 3 months.  I also had an Aunt and another cousin get dx shortly after me, Aunt had Stage IV TNBC, cousin I believe was Stage II TNBC.  I was told I need to get ooop at 35, but they way I figure genetics is telling me I got to the end of my 40's.

    Note that I am at a Research Hospital so it could be different at other hospitals. 

  • Time4life
    Time4life Member Posts: 73
    edited March 2012

    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.

  • Time4life
    Time4life Member Posts: 73
    edited April 2012

    How is everyone doing with treatments?

  • Kingram
    Kingram Member Posts: 1
    edited April 2012

    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.

  • trista13
    trista13 Member Posts: 2
    edited April 2012

    Hello. I am 22 years old and I also was diagnosed recently with Stage IIIa BC. I am also TN and BRCA1 and BRCA2 positive. I had a BMX back in November and I am now in chemotherapy-just finished my 4th cycle of AC. Next week I start my weekly Taxol. Its a been a lot to take in :( but I believe God has a plan for me. Anyone out there my age going through the same thing?

  • Time4life
    Time4life Member Posts: 73
    edited April 2012

    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.

  • journey4life
    journey4life Member Posts: 517
    edited April 2012

    Hi and welcome, Trista. It makes me so mad to see the number of women dealing with BC but even more so when I see someone your age. They have to find a cure for this F*&%^$#@ disease!

    I had A/C Tx3 on Wednesday and so far, so good. Right now, I'm feeling so tired; could lie down and take a nap! I continue to take Compazine to stay on top of nausea and Claritin for bone pain related to Neulasta shot. Although no walk in the park, I am so very thankful my SEs have been manageable.

    Hope everyone's good days outnumber the not-so-good ones! HUGS to all. 

  • birdgirl
    birdgirl Member Posts: 8
    edited May 2012

    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"

  • journey4life
    journey4life Member Posts: 517
    edited May 2012

    Hi Birdgirl - welcome to the place no one wants to be but sadly, here we are. I agree with what you said about TNBC and BRCA 1 - certainly wasn't the best news I got when the test results came in. I have two sisters that I hope will be BRCA tested. My MOs office told me that there is a much less expensive test ($300 vs. $3,000) that family members can get to test for the specific mutation I have. I hope it will be an added incentive for my sisters.

    Do you have sisters?

  • birdgirl
    birdgirl Member Posts: 8
    edited May 2012

    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.

  • Time4life
    Time4life Member Posts: 73
    edited May 2012

    Happy Mothers Day to all!

  • journey4life
    journey4life Member Posts: 517
    edited May 2012

    Happy (belated!) Mother's Day, ladies!

  • cheryltripnegbrca
    cheryltripnegbrca Member Posts: 2
    edited June 2012

    We are looking for anyone that is triple negative that also has the brca gene to join our Facebook group for support and help in finding treatments that are working. Please go to:



    Https://www.Facebook.com/groups/tnbcandbrca/

  • Krazycatlady37
    Krazycatlady37 Member Posts: 40
    edited June 2012

    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.

  • Sandlake
    Sandlake Member Posts: 211
    edited June 2012
    I received my BRCA2 positive results April 30th.  TNBC diagnosis last Oct, wish I could've qualified for the testing at that time.  I am the only one in my family (paternal and maternal) with cancer.  I have decided to have complete hysterectomy (da vinci method) August 20th and bilateral mastectomy with immediate reconstruction Sept 10th.  In the mean time I am going to enjoy my summer and celebrate being finished with chemoSmile

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