BRCA 1 and TNBC - Anyone out there?

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  • journey4life
    journey4life Member Posts: 517
    edited January 2014

    thanks JJ. Had the PET today and of course, I don't know anything. I hope to hear something tomorrow.  The waiting is the hardest part...well, on second thought, there's nothing about cancer that's easy.

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2014

    Journey4life - didn't they find your OvCA during your prophylactic salpingo-ooph?  Wasn't it microscopic, only found during post-surgical pathology?  Hard to believe it would "be back?"  I hope the heck NOT!

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  • journey4life
    journey4life Member Posts: 517
    edited January 2014

    Hey Kam - scan came back clear of "metabolic intake" so that's a relief!  I have some new findings since my last scan: a small amount of ascites in abdomen and pelvis & mild right-sided hydronephrosis of my kidney. Do you know whether they are side effects from chemo? I've done a little reading & cancer and/or tumor is mentioned often but I don't think I've seen chemo. 

    How have you been doing? What kind of follow ups do you have?

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited January 2014

    Journey - I have no idea.  Maybe you should PM Lelala?  I know she still posts here and reads her PMs.  She may also direct you to another source for an answer to your question.  She's had both BC and OvCa too.

    I'm 2 years out from BMX.  From my research, with my oncotype score, year 2-5 are critical.  I was reading one study that  those with Ki67 over 50% (mine is 60%), 77 of 78 who had recurrence before year 5 and 60 of those 77 recurred from years 2 to 5.  One person recurred after year 5.  Here we go!

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  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    Hi ladies,

    CA125 is now up to 220 (last month it was 125) so its a damn good chance that its OvCa recurrence. I hope to talk to one or both of my oncs tomorrow to find out where we go from here.

    I can feel major fear and depression creeping in...I REALLY HATE CANCER

    Lisa

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2014

    Lisa -  that just makes no sense to me since you caught that OvCa in it's infancy!  I'm so sorry for the stress this is putting you through. Please keep us posted.  xxo

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  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    Yea I know. It's hard to believe my gyn/onc told me last November that my prognosis was excellent. It doesn't feel so excellent now. I hope one of my docs calls today with a plan.

    Even though I've had a few months to "prepare," it has really rocked my world. I don't want cancer to win...

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2014

    Lisa - keep us posted.  I do remember that CA-125 gives false positives and false negatives (or many one or the other).  It's not that reliable.

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  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    thanks, Kam! I didn't hear anything but hopefully I will today. I think I'll be less anxious once I know where we're headed and what's ahead. Xoxo

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  • Yayme
    Yayme Member Posts: 107
    edited February 2014

    Hi Lisa

    I am so sorry about what's going on....I am survivor of OC and TNBC...I want you to know my heart and prayers are with you...but on a positive note, this could very well a false elevation as CA125 can fluctuate due to many many reasons, none being cancer. I also had a scare, but it turned out ok...so I am wishing for you the same outcome...I was wondering if you had an entire hysterectomy or BSO?

    Feel free to PM me anytime if you have any questions...

    Lisa :) 

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  • journey4life
    journey4life Member Posts: 517
    edited February 2014

    Lelela - your words are encouraging and very much appreciated.  I hope to hear from the GynOnc today...I had a BSO...at the time of surgery, we didn't know cancer was already there. It was strictly prophylactic. Why do you ask?

    What did your scare end up being? How did you find out it wasnt a recurrence? You can PM me if you want. 

    Lisa 

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited February 2014

    Lisa

    http://ovariancancer.jhmi.edu/ca125qa.cfm

    I just saw this on a brca Facebook group page.  I think there is some good info there for you.  Any word from your GynOnc??

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  • Yayme
    Yayme Member Posts: 107
    edited March 2014

    Lisa...so sorry for the delay in answering, as my hubby has been in the hospital and I am with him most of the day...but I wanted to get back to you...

    First, have you heard anything from your GYN? In my case, the false inflation was due they think to an infection I had, and had taken meds for...sometimes even supplements can cause a false high as well..

    My aunt had the same thing too happen to her..they actually did a second look they used to call it, to take samples..but they don't typically do that much anymore...

    I had a complete hysterectomy, which is why I asked you what you had out...they took my ovaries, my uterus and my Omentum, which is the lining of the abdomen....they did this as a precautionary measure as I was more advanced than you, and they did this to make sure no cells escaped the ovaries and went to the peritoneal areas... For the most part, a BSO is recommended when performing a Prophy surgery...so that's why they took out just the ovaries..makes sense...

    I can tell you that 6 months ago mine shot up a bit, for no reason..then came down again,...there are so many things that cam effect the lab values...

    Let me know, if you have any specific questions, I will check in from the hospital from time to time and get back to you..hang in there girl... You got this!!! 

    Lisa 

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  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    Lisa - I'm sorry to hear your hubby's in the hospital. I hope his recovery goes well. 

    I talked to the gyn/onc who told me conferred with my MO and they both agreed to give it another month and retest. They continue to think the elevated level is coming from the liver inflammation and when those #s drop to a more normal, the CA-125 should also come down. When I asked him what would be the plan if it's up again next month, he said we'd talk about it then. He said any inflammation in the peritoneal cavity can cause an increase. Part of my concern is that OvCa cells were found in the fluid from the peritoneal washing after BSO and my CA-125 is going up cause those little suckers are multiplying. I need to somehow get that thought out of my head...

    I have an appointment with my MO on Monday. I can't wait to ask him some questions! 

    Thanks for the encouragement - I hope you know how much it helps.

    Take care, Lisa

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  • Time4life
    Time4life Member Posts: 73
    edited March 2014

    Hi Lisa,

    First, thanks for the concern a little while back about the cervical Ca. I could not have surgery, it was stage 2b which is beyond surgical. So I had low dose Cisplatin with 5 weeks chemo and 3 Brachytherapies. 

    I am 1 week post final treatment. I see my Rad Onc Apr 8th for a follow up, then later an MRI. So far he said it has really shrunk down, so hoping all went well.

    I am sorry to hear your past couple of months have not been great either. But I will pray it all works out and everything is negative. 

    I am so grateful to still look healthy and on the (knock on wood) winning side, but am really done with this.

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  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    Hey time - its good to "see" you! I'm sorry you had to go through chemo again...do your doctors have a good feeling that it's gone? I hope the news you get is positive!

    Yep, it hasn't been the best few months for me, that's for sure. I have an outpatient procedure on Thursday which will hopefully resolve my kidney hydrophrenosis. I'm scheduled to have a full set of labs on monday to follow up on the rising CA125. Well I got to thinking...the gyn/onc says that any inflammation in the peritoneal cavity can cause an increase in CA125...what kind of effect would this surgery have on it? So, for my peace of mind, I had it drawn today, just the CA125 and I should have the results tomorrow. I'll still go on Monday...it'll be interesting to see how they compare and whether the surgery made a difference. 

    My MO said if there's an increase this month, I'll more than likely have a CT scan to see if anything is showing up. I don't know what the plan is if nothing shows...

    Keep me posted on how you are. Take care, Lisa 

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  • Allydp
    Allydp Member Posts: 520
    edited March 2014

    Hi ladies, I'm 33 years old and was diagnosed stage IIA TNBC back in January of this year and just found out this week that I'm BRCA2+. I'm coming up on my 3rd round of ACT and will do a BMX in August. My doctors are saying no rads because I'm node negative, but my tumor is near the chest wall, so I think I might push for it just to be safe. 

    I have a sit down with both my onc and genetic counselor tomorrow morning to find out exactly what having the gene means for me and my family. I'm anxious to get all the facts and start making some decisions. 

    My paternal aunt is a 2 x survivor of TNBC and is 71 years old today! She gives me great hope that once I have a BMX and BOS (or hyster…still deciding), and kick this cancer, I'll be good to go! 

    Lisa - you are in my prayers for a good CA-125 result next month. 

    ETA: Sorry…just realized this was calling for BRCA1!

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  • Sandydoc
    Sandydoc Member Posts: 14
    edited March 2014

    Hello members of the club! 

     I'm new to the forum, new dx, TNBC, BRCA1 +,  post LX on my first round of AC chemo, to be followed by taxol, then planning BMX/BOoph after chemo.  I'm a family doctor, 55 and athletic, and usually bopping around laughing, and trying to bring some light and joy to those around me.   Now, I am feel so uprooted.  I'm trying to roll with mild yucky side effects, of chemo and exploring how to balance living.  I've mostly been upbeat, and rarely have an emotional response to the wrenching shift of life plans and physical changes.  The usual response from folks that I share with is an immediate 'you'll do great' and 'I know so and so who had this and did great and is wonderful and......'

    I really appreciate the gift of reexamining and appreciating my life.

    I just crave truly compassionate listening, really understanding the anxiety that accompanies the accumulation of losses, small and large, that come life in this territory.

    Thank you for taking the moments to read this, most appreciated,

    Sandy

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  • JJ62
    JJ62 Member Posts: 65
    edited March 2014

    Hi Sandy,

    The club no one wanted to join!  The support and knowledge shared through this website is a blessing.  Know you are not alone!  Best wishes!

    J.J.

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  • HappyDay17
    HappyDay17 Member Posts: 8
    edited March 2014

    Hi - my mom was diagnosed with TNBC (stage 1) in August of last year at age 65.  At the time of her lumpectomy in her right breast (8/30/13) we didn't know her BRCA status.  Post-surgery, we got back the results, which surprised all of her doctors, that she was BRCA1+.  She recently finished chemo (CMF, 8 treatments, three weeks apart) and is currently trying to decide whether to proceed with radiation therapy on her right breast or just get a bilateral mastecomy.  Her risk of recurrence in either breast right now is 40% and if she decides to have RT on the right breast, it would be reduced by an uncertain percentage (since all the reliable studies on radiation therapy don't have targeted data on TNBC populations) and her left breast risk would remain at 40%.  Is there anyone out there who is BRCA1+ and TNBC and did NOT do a BMX?  The more we read about radiation therapy and the potential for error, etc., the more my mom is leaning towards a BMX, despite her relatively advanced age.

    Thanks everyone for reading and thanks in advance for your thoughts/feedback.

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  • Time4life
    Time4life Member Posts: 73
    edited April 2014

    Journey4life;   Just wondering how you have been doing, what's the latest with the OVC?

    I have finished treatments, the tumor is no longer visible or palpable, so in June I have an MRI to confirm.

    My radiated lower bowels are not very happy, and the neuropathy in my feet is back with a vengeance. 

    Anyhow, Lisa, give me a shout.

    Des

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  • jennybg
    jennybg Member Posts: 4
    edited January 2015


    Hello everyone and a Happy new year!

    I think this is a good start of the year- olaparaib has been approved by FDA and the European Commission !

    http://www.medscape.com/viewarticle/836859

    http://www.esmo.org/Oncology-News/FDA-Approves-Olaparib-for-BRCA-Mutated-Patients-with-Heavily-Pretreated-Advanced-Ovarian-Cancer

     

    Have some of you been on a Parp trial?

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  • SA8PG
    SA8PG Member Posts: 371
    edited March 2015

    Question:

    Has everyone who is tnbc and brca 1 gotten either a oopherectomy or hysterectomy? If so, how are you handling the side effects of menopause? Quality of life?

    thank you for your input.

    Blessings

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  • SoulShine1969
    SoulShine1969 Member Posts: 3,047
    edited March 2015

    SA8PG

    I had a salpingo oophorectomy a few years back. It was the first prophylactic surgery I had, after I found out that I have the BRCA1 mutation. I was put on a low dose hormone replacement ( Prempro) but I only took it for a few months because I was concerned about taking a HRT with my BRCA status. I had some hot flashes, night sweats, dry skin. Not too bad. Fast forward to November 2014: Dexa bone scan revealed early onset osteopenia. So, for me, the hot flashes, etc. aren't the concern, it's the bone loss.

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  • SA8PG
    SA8PG Member Posts: 371
    edited April 2015

    rebecca

    Thank you so much for the insight. What made you get a bone scan? Did you notice anything different with your bones? I don't see on your stats if you had chemo yet?

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  • Peabrain
    Peabrain Member Posts: 268
    edited June 2015

    Hello,

    Anyone else with any feedback on the induced menopause? This is one of my main worries

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    Hello!

    Any other BRCA1 positive Triple Negatives wandering around out there this year?

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  • Brightsideplease
    Brightsideplease Member Posts: 34
    edited July 2015

    Hi Peabrain,

    That would be me. Just lurking and learning tonight, I just got my BRCA1+ results this afternoon. Already doing chemo and thinking maybe this will be ok, maybe I can keep these cute little boobs, but the universe has other plans. Hasta La Vista boobies.

    Thank you all for your posts, and sharing your fight. ((Hugs))

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  • Peabrain
    Peabrain Member Posts: 268
    edited July 2015

    hello there and thank you for answering my small little call!

    I am sorry to hear that your results did not go as hoped and you and your boobs have some serious talking to do.

    What chemo regimen are they giving you? Are you in SoCal?

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  • Brightsideplease
    Brightsideplease Member Posts: 34
    edited July 2015

    Hi again,

    My cocktail is Adriamycin and Cytoxan 4 cycles, then Taxol 4 cycles. (I was handling like a champ until a mouth sore popped up, ouch!!) I see we're both recently diagnosed. Mine was 5/21 and i feel like I've been running a cancer marathon ever since.

    Sorry I'm not closer, I love S Cal, but I'm north, I live between SF and Sacramento.

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