BRCA 1 and TNBC - Anyone out there?
Comments
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Am going in for genetic testing the end of July. What is BMX? Thanks!
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Bilateral Mastectomy.
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I have a deletion of exons 13-15 on my BRCA1 gene, and I'm Triple Negative. My mother had breast cancer twice (once in 1993 and once in 2005), and her doctors gave her the BRCA test back in 2007. The problem was that they only tested the first level, not the second, and her results came back with a negative result. So my sisters and I thought we were in the clear, at least for that particular gene.
Well, when I was diagnosed back in May, the genetic counselor suggested that I should have the test anyway, and made sure they ran the second level as well. And of course, the deletion shows up on the second level. Here's an article that sums up the total scam the company who "owns" the test is running...so horrible! http://www.cnn.com/2011/10/27/health/brca-genetic-testing-ep/index.html
Anyway, just had my BMX on June 15th and will be meeting with an oncologist soon to discuss follow-up treatments. It's expected I will have chemo, but probably not radiation. I will also be getting a hysterectomy at some point, most likely around age 40 (I'm 34 right now). I want to get as much health benefit from my ovaries as possible before their removal.
Good luck to all you ladies!!
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Some things to consider: your ovaries might shut down with chemo and not recover. A hysterectomy is a major surgery, and can have long term physical effects. The uterus is also not a higher risk for cancer. The ovaries and tubes are the risk, and can easily be removed through small holes instead of large incisions. There is less complications.
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So, I'm about to start my chemo and was wondering what, if any, chemo regimens you other BRCA+ Triple Negative gals have done? I chose the 4xAC (every other week) followed by 12 weekly Taxol treatments. My other option was 6xTC (every three weeks). I read somewhere that AC works better on BRCA positive TN's? But I also read that MD Anderson has been starting with Taxol and ending with AC on TN's since 2009...when I asked if I could do that, my oncologist nearly had a heart attack with her negative reaction! I thought that was a little weird, considering MD Anderson is considered pretty knowledgable with all this stuff. I like doctors to be open to knew research, but I think Kaiser plays by the book, period
Other than that I love them.
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Hello everyone, I am new to this posting and have only read a few posts. I also had 4 AC and 12 weekly taxol. This is also what my ONC suggested. I in turn also had a total hyst. 6 mo. lafter treatment finished. If anyone else is thinking of doing this you need to check into having it done robotically. It involved 4 tiny incisions and I was out of the hospital under 24 hours. Two days later I was doing normal things and was only a little sore. This is definitely the way to go.
Good luck, Kelly
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Nice to know...is there a specifica name of this sort of "robotic" hysterectomy?
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Hello everyone, My name is Michelle I am 47 (almost 48 next week) anyway. I was diagnosed with Breast Cancer in April, had biopsy and then lumpectomy in May. Started chemo in June. When I went for my followup from lumpectomy dr informed me that she would have recommended double mastectomy vs lumpectomy but did not talk to me about it because when I saw the genetic councilor I stated that I did not want to have a mastectomy. The main reason was the breast dr kept saying all along knowing my family history the tumor was small, it was caught early I would only need a lumpectomy. She also went on to tell me that if it was not in my lympnodes or spread which it was not then I would only need radiation. I kind of lost faith in this dr. anyway now I am 1/2 way done my chemo and need to make a decision on mastectomy? Did any of you who are brca1 positive, have chemo first and then a double mastectomy. I just feel like I need someone to talk to me to help make the right decision. I do not want it to come back but that is major surgery and right now my body can not take it - I am having a really hard time with chemo.
My sister died from breast cancer at age 41, my mom died from ovarian cancer at age 48. I did have a total hystectomy in 2008 for unrelated issues I had fibroids and no cancer was found. My sis had a double mast. and reconstruction surgery and cancer returned within a year so that is another thing that scares me about the surgery.
Sorry to ramble , trying to get my thoughts out there. I do plan to have a second opinion after I see surgeon again for her to explain why and what type of surgery I should do.
Thank you,
Michelle
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Hi maa764
Firstly my total sympathy for what you are going through right now. It sounds, like me, you have a strong family history (my mum had ovarian, her sister had BC and her brother had pancreatic cancer). I was diagnosed with Basal TN IDC in 2009 and had a lumpectomy on Jan 2010 following nil response to neoadjuvant chemo. My Oncologist was keen that I should have BOTH breast removed but my surgeon was optimistic 'we've caught it early and you'll be fine now'. My Oncologist tested me for the BRCA mutation and I was found to have a mutation in BRCA1 of 'unknown significance' so no formal medical reason to have both breast removed. As the tumour was the size it was, I just had the lumpectomy and that was that. I had my first annual mammo in Jan 2011 (we have annual mammos in the UK). It was clean. By summer 2011 I felt a pain in my other breast which I thought might be coming from my ribs. I lay on my bed with a silky nightie on and my fingers could then run easily over the area that hurt. Sure enough - a raised area. I waited to check for changes and it got bigger in that time. I called the surgeon and had a mammo and ultrasound and they were CLEAR. I was told it was NOTHING and that the pain was a GOOD sign! As I had a cancer diagnosis before, they reluctatnly carried out a biospy. To cut a long story short they found 4cm of grade three DCIS (they knew this after the breast was removed as it was invisible to scans). They told me that 20% of BC is invisible to scans and it is often the 'fast moving' cancers with little / no calcifications. I have since found out that there is a 25% chance of contralateral BC (cancer in other breast) if you have a BRCA1 mutation. My mutation is of unknown significance of course, but my Oncologist said they are now treating me as BRCA1. Please be aware that if you have a strong family history / BRCA mutation then you are at high risk of BC in the other breast. I caught this cancer early and as it was invisible to scans - I probably saved my own life. In my case, the original Oncologist back in 2009 was correct and I should have had a bilateral mast then. Hindsight is a wonderful thing!! That same surgeon who, in Dec 2009 said it was folly to have both my breasts removed was urging me in Oct 2011 to have the operation. He said that my breast tissue had just 'gone bad' and that 'it seem that it will just keep coming back'. So, if you are just going to settle for the lumpectomy PLEASE be vigilent! Know your own body and detect any changes early. Most importantly do NOT think that just because you have had a clean mammo and ultrasound that you are O.K. I have now had both my breasts removed (without reconstruction) and I am totally happy with that decision. I figured that life is so much more important than my boobs - even though they were nice and perky! Good luck in whatever decision you make maa764 and I hope my story helps in some way. By that way, I did not tolerate chemo well at all so the fact that my second diagnosis was DCIS was a real blessing.
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dusterella- not sure if it has another name but it is definitely something anyone needing a hysto. should look into.
maa764- when I saw my 1st surgeon he said I only needed a lumpectomy and raidiation. this was a local dr and not a breast specialist so my PCP strongly suggested seeing someone who specialized in breast surgery. I am so thankful that I did. As it turned out I chose a dbl mast. I had one positive node and path said TN. She said this meant chemo as my only option. I made all these decisions rather easily because I have 2 daughters that I WILL be around for. I also did not do well on chemo but would not change my choices for anything. Good luck with your decisions.
To everyone else out there hope you are staying cool- 101 here today and no sight of rain.
Kelly
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maa764 - I'm so sorry for all you have been through
If it were me, I'd let my body heal from the chemo then go in for the double mastectomy afterwards. I just won't let my boobs stand in the way of my health. And fear of it coming back in the other breast caused me to make the BMX decision for myself. I have lots of life left, I don't want to spend any significant portion of it in fear.
I also have a question...did your sister do adjuvant (post-surgical) chemo after her BMX and reconstruction?
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Hello.....I don't post often anymore. However, I found this topic hit close to home for me. I was diagnosed at age 34 in 2009 with TNBC & BRCA 1+. I had BMX, 4TC every 3weeks, 40 rads, oopherectomy. My question is what has been the protocol for follow treatment, scans etc for others with similiar diagnosis? I am now on my 6mth check ups. However, they don't do any scans, bloodwork or anything and this concerns me. Is this normal? Would love to hear some feedback.
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Tiffany-
I am BRCA 1 + as well as TN. I had BMX with ADRO/Taxol for my chemo. I finished treatment Sept. 2010. I only have blood work every 4-6 mo. but had chest x-ray at 1yr. Had to do follow up Chest CT because of a "spot" but it looks fine- will redo that test in 4 mo.
Good luck to you ,
Kelly
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Tiffany and Kelly,
Apparently my MO follows the same protocol as yours do. I am TN and BRCA 1. I had a BMX on Jan. 31 and had 4 DD A/C followed by 4 DD Taxol which ended on June 20. I am now in the middle of rads (33 in all). My onc tells me the followup plan for me is office visits every 3 months, with bloodwork. When I asked him about scans, he says "the literature" doesn't routinely call for them. Basically he said that scans would be done if I were symptomatic. I don't want to be symptomatic in order to get a scan! He reluctantly said that he might do a CA 15-3 blood test but the rate of false positives is so frequent, the anxiety the results produced outweighed the results themselves.
I'm at the stage that I want to know if what I've done (surgery, chemo and now rads) has been successful and I am cancer free!
I plan to have an oopherectomy 2 months after I finish rads.
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Hey, can anyone give me a ballpark figure of what BRCA testing costs? I have Anthem blue cross insurance, but have been told that insurance does not cover this test.
I had dcis and invasive carcinoma in my right breast. Had a lumpectomy in February, followed by 4 treatments of chemo. I begin radiation this week.
I had every test imaginable done before my surgery, except for BRCA testing. My maternal grandmother had breast cancer ( at 80), and my sister had endometrial cancer. Now I am wondering if I should have BRCA testing done.
God Bless you all and keep you strong!
Melissa
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Melissa- I was fortunate and my insurance covered the test for me otherwise I was told it would cost around $2,000. Now that i have tested positive if my daughters or my siblings want to be tested it would cost around 200 because they have already pinpointed what area to look for from my test. Hope this helps. I did have BCBS when I was tested- but not Anthem.
Kelly
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Melissa,
I have Anthem BCBS and my test was covered 100%. If I remember correctly, the cost was just under $3,000. My mom was diagnosed with BC 2 years before I was and my maternal aunt had ovarian cancer. Since then, my mom was tested (I think it cost somewhere around $300) and she too is BRCA 1 positive. One of my sisters should find out her results tomorrow.
Keep fighting to get tested and to have insurance pay for it! Your treatment choices may change if you're BRCA +. Best of luck to you and please keep us posted.
Lisa
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Technically I should not be posting here: I don't have breast cancer. My mom is a breast cancer survivor (10 years NED)
I was diagnosed with ovarian cancer 3 months ago (May 3, 2012). At the time of diagnosis it has already metastasized. I had 4 rounds of chemo so far and now am waiting for surgery.
Due to my age (44) and family history I was sent to the genetic counsellor. A month later I was confirmed BRCA1 positive and had my 18-year-old daughter tested. Today her test came back: NEGATIVE!!! Best news ever, this mutation stops with me.
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i-z-z-i,
I don't know about anyone else but i am glad you posted. It is fantastic that your daughter is -!!!! My girls are only 14 and 7 and so I have the constant thought about their status!! I have been trying to talk my sister and brother into being tested but they just do not see why--- very frustrating!!
Kelly
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izzi - I am so glad you posted here. Us BRCA+ ladies face different challenges than our - sisters do, with or without BC. I'm thrilled your daughter's negative!! My sister found out last week that she too is negative! She told me that her counselor warned her about "survivor's guilt" and that is exactly what she's feeling. Hopefully, I convinced her that she shouldn't feel that way. If you don't mind answering, what type of surgery are you going to have?
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Tiffany,
I also am BRCA 1+ and TNBC. I had a lumpectomy,chemo & radiation in 2005. Went 6 &1/2 years then was diagnosed w/new CA in other breast. Decided to have Bilateral mastectomy, LD recon w/TE , silicone implants in 2011. My oncologist has release me from his care, I am followed every 6 months by my Surgeon, plastic surgeon and Gyne. No scans or blood work, just clinical exams. Continue w/self exams especially around the implant edges and your scars. It has been 1 year and I can honestly say that I would do it again. There are always some side effects such as numbness,itching , heaviness of the implants & tightness. It all gets better over time . Actually I just think I got use to feeling this way. Good luck to you.
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Posted this in the August 2012 chemo group but thought you gals may appreciate it too. My sister hasn't been tested for the gene yet - I think she's either scared or doesn't want to find out she's negative because she will feel guilty that it was me not her (she's older). Anyway, she's supporting me while my hair is gone by shaving her head too, as is my friend. It was a great day: http://vimeo.com/m/47747116
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i-z-z-i
Welcome. So glad to hear your daughter is negative. Also, of course you are welcome to post! Besides, breast cancer and ovarian are linked with the same genetic mutation.
I am TNBC and BRCA +
I had bilateral mastectomy, ovaries & tubes removed. One day my boys will need testing, but not right now. My Mom would not get tested, so I do not know if it is mother or fathers side.i figure it doesn't matter anyhow (for my family situation)
Enjoy this long weekend folks.... -
Hi Lisa - How are you doing? My name is Precy (52) and also was diagnosed with tri-neg and BRCA 1 positive mutation. I just had my 3rd infusion of AC last week. My 4th and last AC is on Sep 20 to be followed with 4 sessions of Taxol.. We are still researching on Taxol since it is fairly a new drug before we commit to it. My BMX will be done after the chemo. God Bless...
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Hi Precy - welcome! I'm glad you found our little group but hate that you have to be here at all. I finished my AC and Taxol and completed 33 rads. Now I'm in a holding pattern, I guess waiting to see what, if anything, comes next.
I think Taxol is a fairly standard chemo drug - I've found many other women whose tx regimen included it. How's the AC going for you? I hope you have minimal SEs. One of the most prevalent SEs for me was overwhelming fatigue. During tx, I worked as much as I could and there were plenty of days that I wish I could've gone home to take a nap!
Are you considering reconstruction after your BMX surgery?
Give in to what your body tells you during chemo tx. Take good care of you, Lisa
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I too have BRCA1 and triple negative breast cancer.Had bmx Aug27th .will start 4 rounds of chemo taxol and cytoxan .Very scared
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Hi anamerty - I know exactly how scared you must be. I am probably in the minority because I dreaded the BMX more than chemo - I hated losing my breasts even though I knew it was the smartest thing to do.
I had 4 dose dense rounds of Adriamycin and Cytoxan followed by 4 dose dense rounds of Taxol. Here's some advice women gave to me when I started: these 3 drugs can cause your white blood cell count to plummet so they may give you a Neulasta shot the day after your treatment. It has been know to give women bone pain because it kicks your bone marrow into overdrive to make more white cells. I found that taking a Claritin 24 hour (the generic is what I took) a day or two before tx and several days after tx helped. Only after I'd had a couple of Taxol did I feel some pain but it wasn't anything I couldn't handle.
Drink plenty of fluids before, during and after tx. It'll flush the chemo out of your body more quickly.
If your mouth/tongue gets sore (or develops sores), get Biotene mouthwash and/or toothpaste. It does help and doesn't irritate or sting your mouth like regular mouthwash or toothpaste might. Also, if you feel soreness coming on, ask your MO about a prescription mouthwash. It worked for me.
Whatever you feel like eating, eat. This is not the time to watch your weight. If you want ice cream, have some!
Before you start tx, ask your MO to prescribe an anti-nausea drug. I took one whether I thought I was going to need it or not. My bouts of nausea, while unpleasant, were tolerable.
Probably the most important thing - give in to what your body wants to do. I went through periods of fatigue and curled up in the bed or on the couch and slept as long as I could. When I wasn't sleepy but had no energy, I gave into it and when I could, sat and read, watched tv or did puzzle books. I guess the bottom line is not to force yourself to do things your body has no energy to do.
Hope this helps. I was anxious and emotional when the first tx started. You may be too. Bring someone with you and talk to them about how you're feeling. Having someone with me gave me courage.
(((hugs))) and good thoughts being sent your way. When is your first tx?
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Good day ladies.
I'm new here. I'm dealing with some sort of survivor depression. I have no idea what this is. I was diagnosed the day before my 31st birthday. My son was born a few hours before being notified. Talk about shitty timing... Maybe they could have waited 2 days to break the news... My sons bday would then not be my D day. And not do it the next day to spare my own bday from such tragic association. Is what it is I suppose.
I was 31 ( 2003) turns out it was 1.3 cm, triple neg. Did the lumpectomy with nodal dissection. There was one node out of all affected. I did FAC (I don't exactly recall) for all required sessions except the last one. I quit that day and didn't take it. I was told to do radiation but I declined. About a year later I learned I was brca 1 positive.
In 2005 I had the oophorectomy/ hyst done. And in 2007 BMX with reconstruction.
I just had my 9th year of whatever this can be called? Hell? I've had no recurrence, which I'm thankful for. However, each passing year feels more like a countdown. I never feel grateful or proud or any positive affiliation with surviving this ordeal. I have 4 first degree cousins between 25 and 40 all brca1, and they seem so much more celebratory. Doing the ca*#cer walks, parties etc... 3 of the four have all had early onset bc, all with similar experiences to me. They're very proud of their status. Where I am very ashamed? I don't know what this is. My mother is the only person in our family who was taken by this disease at 49. She survived Bc at 43, then ovarian was detected at 46.
I don't know where I'm going with this. I have noticed over the past year that my mood has become progressively darker. I've quit my career that took 10 years of schooling to achieve. I've quit on my family. I obsess over recurrences and every pinch or pain throws me into days of anxiety. I feel stalked by ca; like it's just a matter of time...I'd be a fool to carry on happy and hopeful.
I don't do any follow up. Nothing. My cousins do MRI's annually as well as ca125. It takes an ambush to get me into a doctor or hospital. I'm sure if I did screenings and saw the clean reports it might boost my spirits. My doctor doesn't believe in doing them. She insists my risks are now that of the average woman and all the screening isn't necessary. I say phew to that. I don't think I could do it anyway.
I guess my question is this... For any younger women with many years of no recurrence, why am I so miserable?
Thank you so much if anyone has some thoughts on this.
All the best ladies. -
Well, Dus, keep in mind that having your ovaries taken out and losing your mother at an early age can together cause a lot of emotions. My mother died after battling with breast cancer at age 53. I was only 25. I had a baby, was going through a divorce, starting a new relationship, and an exhausting job. It was just too much to handle. I had to think of my child and so I saw a therapist who put me on antidepressant/anxiety medication. I should have been on them years before, but just could never get myself to give in like that. But it was best decision I could have made. I was more involved with my son and happier and more helpful around the house and at work. I thought more clearly.
I really encourage you to see a therapist. Even if you don't want medication like that, just talking with a professional can do wonders.
ps..I just had BMX last week. 2 drainage tubes were just removed today. I plan on getting my ovaries removed in the next few years, too. But I was told to wait with that because there are negative side effects if ovaries are removed at a young age. I need to be closer to menopause age.
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Hey guys, I was diagnosed with TNBC BRCA1 at 31. Just had my ovaries removed last week. Been a little down since then. Really wanted to have more kids, but felt like my clock was ticking. I've had 2 aunts that passed away of ovarian cancer that were diagnosed in their 30s. Any others have depression after oopherectomy? Does it get better? I'm usually a pretty upbeat person.
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