BRACA 1 Question

MRDRN

I am going to a genectic counselor hopefully next week, but....

We are wondering, I have a 7mm Lobular and Ductal, and don't know Grade or Nodes, If I get a 

(assume a grade/node for example)

lumpectomy/radiation what is the chance of recurrance ?

double mastectomy what is the chance of recurrance?

Thanks for your help.  My world has completely changed this week (  The Plastic Surgeon said I was lucky to catch this so early!

Carlatap

Dear MRDRM, I understand your feeling of your world being turned upside down. It is such a total body shock to get all this news and then trying to process it all. Its good that you are going to a genetic counselor. He/She can tell you your chances of testing positive for the BRACA+ 1or 2 mutation. Based on your family history, they will do the testing. If it comes back positive, then your chances of getting new primary breast or ovarian cancer is higher. If it comes back negative, then your chances of new primary showing up is much lower. About recurrence, it can depend on the stage of cancer, and the grade of the tumor-and you don't know that yet. It also can depend on if your cancer is hormornal responsive or not. There are medications to take depending on the type of cancer you have. If your cancer is triple negative, then most likely you will have chemo b/c triple negative responds well to chemo, and there is no medicine to take as a follow up.  There are still a lot facts regarding your cancer that you need to gather before these questions of recurrence can be answered. Without knowing I was BRACA+2, I had a lumpectomy followed by radiation in March of 02. In 09, I had a new primary in the other breast, so I had a lumpectomy followed by chemo, and radiation. During the process I was tested for the BRACA, and it came back positive. So now this summer I am having a double mastectomy. Is there any way you can be tested before you have your surgeries? That can definately help you decide whether to have a lumpectomy or mastectomy.

MRDRN

Thanks Carla!  I am sorry, I should have said that I did get BRCA tested and was positive (I had a 50/50 chance of having it)  My sister and cousin are BRCA 1 as well.  I do realize all you have posted  and that is why I am leaning towards the double Mastectomy vs the the Lumpectomy.  We were looking for numbers, and I have to pull out the papers i was given a few months ago I guess. Plus I am looking forward to skipping radiation.  I was surprised to find out that my ER/PR was positive as most BRca1 are usually negative ER/PR....from what I remember.   

****I would like to hear from more BRCA folks who made decisions and are possibly finished and recovered now?   Please PM me or post and thanks in advance.  

MRDRN

Issymom

MRDRN - When I was initially diagnosed with Triple Neg Stage I BC, I was going to have an lumpectomy.  I was sure about that decision.  My BS recommended the genetic testing because it was TN and grade 3.  I was fortunate that he could collect the sample in the office that day and I got my results a week later.  It was an emotional decision but I knew I didn't want to go through this again. I am BRCA1+ and my chance of a NEW primary would have been well over 50%.  I had the bi-lat mastectomy a few weeks later.  If I had not tested positive, I would have continued with the lumpectomy decision.

 Good luck to you.  Hopefully, you will test negative and not have to worry about the increased risk.

MRDRN

Hi lssymom!

Thanks for your reply!   I am BRCA1 (see my profile)  and that is why I got a MRI vs another mamo.  Thank God, because I was able to pick up the smallest BC!   It has both lobular and ductal components.  I am really leaning towards the Bi Lat.   What is TN?

MRDRN

nevermind just found the abb thread silly me  of course Tumor Marker

THIS WHOLE SITE SITE IS SAVING MY LIFE THIS WEEK....very quick helpful and commassionate real people experiencing real bc.  THANKS to all who started/maintain it.  I feel empowered in one week! 

Cydz

TN is triple negative. Which means the tumor is negative for estrogen, progesterone and her2.

MRDRN

 Now I just went to this site:

http://www.breastsurgeons.org/educational/2010PrelimProg.pdf  

and pray that I am making the right decisions for me...we are all on a personal journey but it helps to get as much information on "quality" people you are paying!  As BRCA folks, we have a unique situation that justifies the PBM which is what I was thinking about before that abnormal MRI (first ever screning) popped up in April!  My PMD family doc said follow up in a month!!!! I KNEW THIS WAS WRONG!  I was asking her for genetic screening for the past year!!!

The Breast Center worked me up quite quickly and I am truly grateful...but now I am focused on the best possible outcome of surgery.  I am hearing of recurrance, even WITH Mast so it is something to not take lightly. (Recurrance in the scar/sternum)  I want to speak to someone who had the surgeon before now. PRAYERS/KARMA/VIBES...please send them my way  Meanwhile I am dealing with a TEEN who is being a teen, and a husband with a VERY busy job.

I guess I should be grateful for the PR positive receptors but I only found that out because I was proactive to ask the question!  The Breast Surgeon I met with didn't answer the statistic questions and was non-commital as to which to do.  The Radiologis couldn't give me a grade with the core biopsy??   She did say upon first meeting her that she was surprised that so many are choosing the BPM, when they have spent years trying to conserve women's breasts.

The Radiologist doing the core bx mentioned how surprising it was that some folks even do PBM WITHOUT a known gene but a strong family history!   I noticed on the BRCA Umbrella web site that many are younger and choosing this option without hesitation.  I met ladies who were survivors doing great, and had eventual Bi Lat Mast working in the Breast Clinic living healthy lives.  BUT  I am facing the first ever dx so do I want to go through this again someday if I only do Lump/Radiation?  My surgeon wanted me to see a genetic coun. but still haven't gotten there.....this has only come up in the past two weeks!!!!!   Do I want to face fears every 6 months and end up someday with Bi Mast anyway?  It seems so easy to do the lump and avoid plastic surgery at 49!  BUT the longterm results.....

AnacortesGirl

I agree with you that it's a tough decision.  When I had my original biopsy the surgeon took out a 1.8cm tumor.  If it had been clear margins, If it had been the only tumor  and If I didn't subsequently find out I was BRCA + then I would have been very happy with the lumpectomy.  But the wasn't the case and the recommendation all the docs have given is for a mast of the left breast.  On top of that, I'm also told no reconstruction for the next year.  So when I list the reasons for a proph on the right, the scales tipped to a "yes".  I've seen what BC can do in my family, I have the gene, I'm already losing the right, I don't want to go through chemo again and if they take the right now then there won't be any disruption with the lymph nodes so I know I'll have one arm with no lymphedema.

Maybe if you sit down with a genetics counselor and write down the pros/cons then the answer will take shape. 

I've also seen posts of women who've gone the lumpectomy route but didn't get clear margins the first time so they had to go back for a second lumpectomy.  There is an advantage to having the lumpectomy and getting more conclusive info about the tumor and the pathology.  You could always do the mast (or bilat) at a later date.

I'm 51 but I have a very supportive hubby who just wants the best prognosis for me.  He is very much in favor of the bilat and really doesn't care about reconstruction.  I'll figure that out at a later time.   

BTW - I, too, am surprised how many women are comfortable going with a PBM with much, much lower risks.  I am the opposite.  I need to have a compelling reason to remove tissue that is healthy.  But I can live with the surveillance and handle the fear.  That's just me.

MRDRN

I found my BRCA1 mutation which is c61G, and found in two other family members.  This mutation gives a 60-80% cumulative lifetime risk of primary breast cancer, compared to 12.5% of invasive cancer risk for the general population.  It also gives a 50-60% risk by age 70 of second primary cancer, 30-45% chance of ovary caner (which I had my ovaries taken out March 5,2010) , 10-15% chance of Colon Cancer (which I had screening colonoscopy in 2004 and 2009----MY IDEA---not my PMD!)  Pancreas 2-3% chance (I requested a PET scan which is not ordered for your typical early stage breast cancer patient). 

If I have learned one thing...be proactive and be your own best advocate.

katsie

Hi.  I am new to this, so I hope you will all be patient with me.  I just got my BRACA test back today.  The Test Results and Interpretation say that I am positive for a deleterious mutation, and that I am BRACA 1.  It says that the test analysis are consistent with germline BRACA 1 mutation E1250X, resulting in premature truncation of the BRACA 1 protein at amino acid position 1250.  Although the exact risk of breast and ovarian cancer conferred by this specific mutation has not been determined, studies in high-risk families indicate that deleterious mutations in BRACA1 may confer as much as 87% risk of breast cancer and 44% risk of ovarian cancer by age 70 in women.  It says a lot more, but I will spare you all.

My gyne has me scheduled for a hyster on June 8, 2010, and genetic counseling in the next two weeks.  

I am going to be 58 this September, but two years ago in November, 2008, I had a bilateral mastectomy.  The oncologist said that it was a 'garden variety' type of breast cancer, but it occurred in the right breast...the opposite breast that I had already had medularry (sp.) type cancer tumor in, fifteen years ago.  At that time, 15 yrs. ago, I had a lumpectomy, radiation, and took Tamoxifen (sp.) for four years.  My oncologist told me, at that time, that recurrence was less than 3%.

Fifteen years later, it came back, different type, in the other breast.  I decided to be proactive and opted for the bilateral mastectomy.  A few weeks ago, I was tested for the BRACA gene, and it came back positive, as above, but the really strange thing is that the only person who had breast cancer, on both sides of my family, going back almost one hundred years,...was a second cousin.

She passed away when I was only five years old.  I barely remember her, or the funeral.  She was almost 40, and had two children.  Her sisters both, later on in life, developed ovarian cancer, and survived,..they never married.

It's so hard for me to reconcile this, since I didn't even really know her, or her family.  We didn't live in the same town, etc.  My Mom, and her brother, were her first cousins, yet nobody else, except me, has developed cancer of any kind!  I know the doctors keep saying it does not matter, but I still cannot understand why me?  Her own daughter, and granddaughters are healthy,...it just makes no sense.

I called my aunt, my Mom's brother's wife,..they are both gone now, and we figured out who the relative was.  I did a lot of research on both sides, and she is the only one it could be.  Anyway, I told my Aunt to tell her grown children about my test results, because they are also this woman's second cousins.  I just hope I did the right thing.  

I have a daughter who is 27, has one child, but she is developing migraines, like I did.  I had them for twenty-seven years, after my children were born, and her migraines started right after she delivered her son.  My gyne told me, yesterday, that they are hormone related.  Both of my tumors were hormone related.  

Anyway, I am so afraid to talk to my daughter.  She has been through a lot lately, work, and fighting for custody of her child,...too much stress, and these horrible headaches.  I did tell her to contact my gyne, for help with the migraines, thereby help with the hormones, I hope, but I don't know how to tell her, or if I should wait until I go to counseling before alarming her, unnecessarily.  

My son is 29, and I told him already.  He is willing to take the blood test for the gene,..thankfully, but it's my daughter I am worried about.  My gyne wants me to take both of my children with me to the genetic counseling, but I am really afraid to tell her.  I know having the gene does not mean that you will get it.  You can be a carrier, and never develop cancer, but I know I will have to tell her sooner, or later,... but, if I don't have enough information, I am afraid I will only make her life worse!

Should I wait until I go to counseling and know more?  Or should I just tell her, and take her with me to counseling?  

I really feel awful about this.  I know it's not my fault, or anybody's fault, but I have chronic myelogenous leukemia, Sjogren's syndrome, fibromyalgia, asthma,...which I already passed the asthma gene to them both,...I feel like a curse on my children,...I can't help it.

All I have done is cry since the doctor told me,..not for myself, but for them.  I feel like I am bad luck,  and I feel so guilty for being such a genetic mess.  I realize that sounds silly, but I cannot help it.  I feel so bad about all of this stuff I have saddled them with,...it's hard being a mom knowing you are so ill,...and that your poor kids could be in the cross hairs,...it upsets me a lot.  

I don't know what to say to her.  I hope somebody will be able to advise me on what to do.  I am so confused.  I really could use some help.  Thank you for reading this, and God Bless you.  Kathy.

MRDRN

Kathy,

Thanks for posting this as it is helpful to the many other BRCA folks who are reading but may not be posting.   I personally think you should go to the counseling first, by yourself.  They will guide you as to what to do next.   When I found out, they would not give me the results or do the test until they sat down and gave me information, and I had already had my sis and cousin in the system so they knew that I could ask them for support.  I actually had to drive two hours away but it was worth it as they already knew my family and the centers closer to home just gave me the run around.  

You are very lucky that you were proactive with the Bi Lat Mx!!!!  Best of luck with your your appt and let us know how you are doing.   

MRDRN

AnacortesGirl

Everybody is different but I'll tell you about my mom and I.  We got tested together.  She has had 2 bouts of BC, both very early stage, and my sister passed away from BC a few years ago. 

 When we both came back positive it was a double edge sword.  On one hand we felt relief that we finally knew why we've had so much BC and BC-related cancer in our family.  Now we know the monster that we face.  But on the other hand my mom started telling me how guilty she felt that she passed this on to me and probably to my sister (she was never tested).  I just didn't want to hear that.

Yes, this was a crappy gene that she passed on and she probably passed on other genes that aren't stellar.  But she couldn't pick her genes let alone decide which ones to pass on.  What she could control, however, was how she raised me and the love that she passed on to me.  That is way more important than any gene.  For her love and her thoughtfulness I will be forever grateful.   She has taught me so much - she is the one who taught me to be supportive for my own kids and to be tolerant of others.  She's the one who's brought me back to reality when I get off on a tangent.  I love my mother dearly and I will never, never think of her as having handing me anything that I couldn't deal with.  She's the one who taught me how to deal with life. 

Please don't feel guilty.  You've given your kids love and that trumps any gene.

MRDRN

Kathy,

I agree with Anacortes Girl.   You are here for your children, and that is the important thing.  My mom began getting sick when I was a senior in High School....I remember how sad she was for us and always talked about "not wanting to be a burden" but when she passed away ten years later, it was very sad and I still miss her to this day.   All we can do for our families is the best we can with what we have.   {{{{{Hugs}}}}}}   Keep on, keeping on and let us know how the appt goes.

kittycat

I was dx last year with DCIS, ER/PR negative.  The HER2 was not on my path report.  I tested positive for the BRCA1 gene mutuation.  I had a bilateral mastectomy with reconstruction.  I was planning on having a hysterectomy and oophorectomy this month.  However, I was just dx last week with breast cancer again.  I don't know if it has any hormone receptors.  I'll find that out hopefully tomorrow when I see my BS.  I do know that the bc is IDC, grade 3 (hasn't been staged yet).  I also have DCIS that's multifocal.  I had widely negative margins on my path report from my bmx, so this is a shock.  I found the lumps doing a self exam 2 weeks ago. 

I am still very happy that I got a bmx.  It could have been much worse if I hadn't got the surgery.  I would make sure being BRCA positive to follow up and be your own advocate.  My sister is also BRCA1 + and had a scare 2 months ago. 

kittycat

I tried to edit my post....  my sister ended up getting good news - no cancer!  Yahoo!!!

MRDRN

Kittycat,

As I pm'd you, I am sorry to hear about your recent find after your Bi Mx.  Very scary!  It does suck!

Thank goodness, though, that you did find it and followed up asap.   We are lucky to have such early Diagnosis and treatment compared to what our mothers/grandmothers had available.   Great news about your sis too. 

So are you going to stick with the Hysterectomy Date?  Surgical Menopause is no fun with hot flashes but at least it is behind me.  Since I turned up ER+ I guess that is good that the ovaries are out and I didn't take post op hormones.   I wish I was you with the Bi Mx behind me but by the end of the year, it will be most likely. 

Thanks for being brave enough to share your story.

MRDRN

tibet

kittycat

After you had BLM and reconstruction, how did you detect the IDC this time? Were they scans available and can detect new primary for BLM and reconstructed breasts? What kind of reconstruction did you do? I am also BRCA1 positive without any family history so it is such a shock. I had BLM and Lattissum reconstruction. They say with prophilactic mastectomy, the risk of developing new BC is less than the general population, less than 5%.

MRDRN

Carlatap

Well I FINALLY found out my grade yesterday!   It came almost four weeks later after I had gotten another opinon and the second Doctor reqested the slides.   It just makes me wonder why they couldn't tell me the grade at the frist place with the bx?  I only asked the question many many times, to the Doc, the NP, the Secretary, the Nurse Navigator, who else, the surviver who called me?  If anyone rushes you to make a decision you have to slow down the process and make sure you have all the data you need (YOU decide what is YOUR surgery).........but now that I know I am stage 1 and grade 1, it gives me some time!  

The BRCA gene is a very complicating factor to consider (I was told that BRCA 1 is worse than 2 and is usually TN)  I feel like I caught this early, thanks to insisting on a Breast MRI via my PMD and from a center that has dedicated BREAST MRI Center, in my insurance network.  The insurance company can be helpful!   In the end, you may end up with huge bills!  My insurance doesn't cover MRI's at the University Hospital but does cover them at another center, and CD's can be taken there very easily.    I will have three very good healthcare facilities to choose at the end of next week, thank goodness.   To be honest I think it will be hard to decide!     (My state is the highest rate of BC in the country...wonder if they are just so good at early dx)   I am just so grateful that I have these resources, but it takes time and energy on my part. 

When the nurse nav called me yesterday and she said "Oh we weren't worried but your PET is negative"..."you just had some back bone pain" I just had to let that flow over me as I was glad she finally got around to calling me (they probably have sicker patients than me, but still).......I have more than that bone pain...but I also picked up the report MYSELF 24 hrs after it was done when she could not see the report for whatever reason.  There is a time crunch here and I have decisions to make that are INDIVIDUAL for me!  

Three Doctors, I have seen this year, have gone on conferences out of town during my critical period of needing them...I don't want to be a bother.  But I want and need a good medical outcome.  March/April is conference season and July starts new Doctor season....and the community Docs are the REAL DEAL but there are other factors to consider....  No center should care about you seeking another opinion if they are confident in their own system.   This board was more helpful than any of the one hour visits with a Doctor, because the time to take in making decisons should be done in a careful time frame with people who have been therre.  Depending on who you ask, you make have a different MEDICAL opinion.  The studies here are in black and white and written with a very good down to earth side bar....

Bottomline Carlatap...yes I was tested BRCA before my surgeries and it has helped, and I am now Grade 1, Stage 1 and ER/PR positive...so I have an appt to discuss the Bi Mx with Deip this week at Mercy (already discussed it at Hopkins but told that they prefer to put the expanders in for their scheduling purposes and for me it gives time to loose weight, and also gives time to get any other therapies I may need but I shouldn't need any?)  I guess they will decide who wants to me, and I will decide where to go.  I also am meeting a PS today who is in my insurance network if I go with the Implants at AAMC.   I can look back and say that I did my homework ))) 

THANKS to all who care to share their BRCA story here.  It is bound to help someone.  Now if any of you have had a Hysterectomy in the past month, please let know!  These Hot Flashes are killing me

kittycat

I found the lumps myself.  They had to have grown fast because I just had my exchange surgery in December.  They did an ultrasound and an excisional biopsy.  In just one week, I was dx with BC again.  This time it was IDC (and parts of DCIS). 

Carlatap

Dear MRDRN 

I am so glad that you are getting answers even if they are coming a little later. It is amazing how different Dr.s and cancer centers work so differently and have different protocols. But it is soooo good that your tumor grade is 1, and your stage is 1. Yes! You did catch it early. Its so great that your Pet scan was clear. That is such a relief. I am very happy for you! Have they talked about hormone therapy yet?

Very hopeful for you,

 Carla

Carlatap

Kittycat, 

I am thinking about you and praying for you. You sound very strong. It so good, though, that you are being screened so well, and they found it soon. Stay strong!!

Carla 

MRDRN

Carla,

I met with three BS in my area.  All of them said that I should wait until after my surgery to get the hormore therapy.  I am dealing with very strong hot flashes being a month after a total hysterectomy so that is helpful, and my GYN Oncologist, said to not take hormones for now.  (Good call

kittycat

Carla - Thank you!  I'm just taking this one day at a time!  I see you are also Triple Negative.  My onco said that's pretty normal with the BRCA1 gene. 

Carlatap

MRDRN,

I am having crazy hot flashes too. I practically begged my onc to give me even the minimum of estrogen, but he refused. What he did instead was prescribe citalopram 10 mg. Its an anti-depressant and anxiety medication. It takes the intensity away from hot flashes cuz you aren't so emotionally up and down. At first, it made my stomach feel unsettled, but I stuck with it. After a couple of weeks, I started taking one in the morning, and one in the evening. Because the hot flashes were making me awake so much at night, I take 5mg of Ambien at night too. I don't have trouble falling asleep, but these keep me sleeping. You just have to make sure that you are going to sleep at least 8 hours, other wise you have a headache in the morning.  So, I still have the hot flashes but they are not quite as often and not as intense. Maybe you can look into this.

Yes Kittycat, I had triple negative. But I'm actually BRCA2. I didn't expect to have this, cuz I had heard that it more common to have the BRCA1 with TN. It sure has changed my life, and my sister's life. And I just found out this past week that my older brother had another cancerous area surgically removed from his face. He was diagnosed with Milanoma last year and had a malignant mole removed from his back. For me knowing that my family and friends are always there and are praying really help me a lot. Like you, I take one day at a time. Try to remain positive!

Carla 

MRDRN

lssymon, 

How is it going for you now?  It must feel good to know your surgery is behind you?
You seem very informed about the gene, and if I didn't have the gene, I would have done the lump/radiation too.  Thanks for the response.

Carla, 

Thanks for the information...something to look into.  A friend told me yesterday that she takes effexor along with many others she knows, for natural menopause hot flashes and it has the added benefit of weight control.  I have never been on any of these but am considering it.  I hate to take more meds than I need.

I am now in waiting mode...feels good to be at a decision!  Surgery is scheduled and thanks for your posts and sharing any other information. 

As an aside, my neice said she didn't want to get tested because (my brother is her father and is disceased) "men don't carry the BRCA gene"....I  gently told her that she is misinformed, and may want to consider testing.  

MRDRN

Carlatap

MRDRN,

evidently the insurance companies think the same way about the BRCA gene and men. My brother, although he has gone through cancer twice, was denied coverage for the genetic testing. They told him to concentrate on his daughters. My question to him was, ...but I thought his daughters cannot get tested unless he gets tested and tests positive.  But maybe I'm wrong. Maybe they would cover testing for his daughters because their 2 aunts and cousin have tested positive. I don't know...

Thanks,

Carla 

MRDRN

The test is only $350 from Myriad.  That is without the genetic counselling. The daughters who are young, like my niece, should be tested.   I am sorry to hear about your brother, one of my brother's has had cancer and was not tested either.  I think the focus is on early detention and screening? 

I feel so much better now that I am a month after DX and have a plan.  If people educate themselves when they are "previvor" it will be easier to be a "survivor".  But you don't know if you are a "previvor" unless you get tested.  Then again, sometimes they just don't want to know and it is a personal decision, having nothing to do with insurance.   Oh well...all I could do is inform my niece that she is misinformed and that men can carry the gene.

Carlatap

Yes, I feel much better too, when I can know what is ahead as much as possible-and have a plan, like you said. And you are doing the right thing about talking to your niece, then she can choose having more information to process with.

I've had to make a decision in the past four weeks regarding the trial med that I was on. Bottom line, it's Boniva. Its being tested along with 2 other meds to see if it will keep the cancer from recurrence to the bones. My onc wanted me to try it b/c with triple negative, there is only chemo and no other meds after treatment. When I was given the information about side effects it looked very do-able. I would maybe have some bone pain in legs and arms. I took a 50mg tablet every morning and then had to wait before eating or drinking anything for a half hour. I started back in September. As the months progressed my body was slowly becoming more and more sore, with pain just about everywhere-back, legs, fingers, feet, headaches, wrists. When I would get out of a chair I would feel like I was 75 years old. I kept reporting this every month to the trial nurse, and then when I started having more severe headaches I got scared of brain mets. My onc finally suggested that I get off the trial med for 3 weeks and see what happens. I got on the internet and looked up headaches and boniva. I couldn't believe what I saw. Women and men who were taking this med for osterperosis(sp?) were taking 150 mg once a month and were writing about having to stay in bed b/c of pain even if they had been runners and marathon-like athletes before. So, I was taking 50mg every morning and they were taking it once a month and feeling like that! Anyway......I decided I cannot live with this type of pain. It not only hurts,  over the counter drugs do not touch the pain, but all the pain was really making me scared of mets. So, now my pain has lessened considerably but it may take a long while before it gets compeletely out of my system. I also have more energy now, and don't need to sleep as much.  But, now I feel like I can move on, and not be frightened every day that the cancer is back and that I don't know what the pain is from.

Thank you for listening. If I tell my family any of this, they get more frightened. And how can I expect them to understand what I am going through if I don't really understand myself? 

Have a great Saturday, and I will continue to pray for you while you are in waiting mode.

Carla 

MRDRN

Thanks Carla!

MRDRN