I have the Gene-Is Surgery the Answer?

dandee354

Hi my name is Danielle, Im 23 and just recently found out that I have the breast cancer gene. I have also already had one surgery to remove a suspicious lump that was thankfully nothing but I do not think I could or want to go through that again! My grandmother, two great aunts, my mom, and her sister have all been diagnosed with breast cancer therefore I feel I will be next. Because I feel this is such a threat I have deeply considered going for the surgery to remove my breasts and replace them in order to significantly lower my chances but because I am such a baby when it comes to any type of wound on my body I dont know if I could handle this. I am also getting married this April and my fiance is in total support of the surgery but I just dont know what exactly I am getting into. Is this worth it? I just really dont want to go through everything I saw with my mom and aunt. Any advice or guidance would be appreciated very much!

Sociologist

Hey Danielle,

I'm so sorry you have to be here but this is the best place to be for encouragement and support. I can't begin to imagine trying to wrap my head around all the questions you must have about having the gene and whether or not to have the surgery.  The best advice I can offer is to do your research about the pros and cons of the surgery and do what's best for you and your new family. The good thing is you don't have to make a decicion today or tomorrow; just take your time and do your research. I'm sure others who know more than I do about this will be along soon and be able to give you advice. Best of luck!

Margaret

Deirdre1

Hi Dandee...  First and foremost this is such a personal decision and I hope you speak to many people, many breast surgeons, many plastic surgeons and of course family and friends before you make this decision!

Now I was dx with DCIS STage 0 recently and that is the EARLIEST stage - I have family history similiar to yours but really only needed the small spot of DCIS removed.  I thought long and hard and did visit several doc's (as mentioned above) and I decided that this was a warning and that even thought I was BRCA negative I needed to look at this as if my life depended on it.  I went back and forth for about three months.  Finally my son and I had a conversation where he begged me to do something NOW so that I could be around as long as possible, that he and his family loved me and he couldn't bare to lose me now!  I was at the time thinking of just having the DCIS removed and doing constand checking.

Because of that conversation and love behind it I decided that I would do everything in my power to have cancer stay out of my life!  I finally (and believe me it took all the will I had!) decided on a bi-lateral with immediate reconstruction.  I will say that I have no regrets about the mastectomy - only that the plastic surgeon had done his job better..  So I live with, not the loss of my breasts although there was a grieving process there, but the loss of the possibility of coming out of this with good looking breasts.  Not perfect mind you, but the plastic surgeon did not do the surgery the way we had agreed so make sure if you decide to go this way that you have the BEST ps available.

Good luck and I'll be thinking about you!

Mykidsmom

Deidre1 - Oh I am so sorry, you are so young and looking forward to getting married and having to go though all this. I was recently dx'd w/ LCIS - not actually cancer at all, just a serious indicator of things to come. I too have been trying to decide what direction to take. Given my additional risk factors and the support of my husband and family, I will most likely be going in for a bilateral mastectomy in early December. But it is my personal choice. I am so much older than you, but have still found this a very trying time. I would strongly suggest that you talk to your doctors and seek support and suggestions from others, and then make your decision. Good luck. - Jean

Maryiz

Deidre1, I am sorry that you have to think of this now.  I agree with most of women who have responded; one step in the right direction would be to speak to as many people as you can who specialize in this field, you can speak to the BRCA specialist at your treatment center or go to a large teaching hospital.  I can tell you that I would not wish this disease on anyone.  Also, having said that, I saw a show on cable tv one day about a young woman like yourself whose mother passed away after many surgeries.  They both were BRCA positive.  The young girl decided to have a double mastectomy with implants.  Her results were TREMENDOUS.  For her, it was the right step.  Her mother did not survive the disease and so for her, it may have shed a different light on it.  I wouldn't want you to operate on fear, so get as much information as you can.  You can speak to young women who have chosen to do mastectomy and implants and you can speak to those who didn't and are being watched carefully before the horse is out of the barn.  You have many options.  I would say the decision will be easier once you do all of your research.  Remember you are young, you have time to research and think about it.  Take care, Maryiz

Maryiz

Deidre1, I am sorry that you have to think of this now.  I agree with most of women who have responded; one step in the right direction would be to speak to as many people as you can who specialize in this field, you can speak to the BRCA specialist at your treatment center or go to a large teaching hospital.  I can tell you that I would not wish this disease on anyone.  Also, having said that, I saw a show on cable tv one day about a young woman like yourself whose mother passed away after many surgeries.  They both were BRCA positive.  The young girl decided to have a double mastectomy with implants.  Her results were TREMENDOUS.  For her, it was the right step.  Her mother did not survive the disease and so for her, it may have shed a different light on it.  I wouldn't want you to operate on fear, so get as much information as you can.  You can speak to young women who have chosen to do mastectomy and implants and you can speak to those who didn't and are being watched carefully before the horse is out of the barn.  You have many options.  I would say the decision will be easier once you do all of your research.  Remember you are young, you have time to research and think about it.  Take care, Maryiz

Msklapkin

Please go this website

www.facingourrisk.org

It is all about the BRCA gene and you will find many with situations similar to you

Good luck

AngelaD

Hello Dannielle - 

My heart goes out to you - at the same time, I would agree with the wise advice above - take your time, talk to a wide variety of surgeons, genetic counselors, and family to help guide your decision making.  Most of all, take charge of your health care and your path through this experience.  Another site that you might find of value is the following http://www.youngsurvival.org/community/bulletin-board/

I found the more research I read and the more I knew about the procedures, percentages and survival rates helped me make the final decisions about my treatment.  Also knowing how you want to live the rest of your life is important and factors into the quality of life questions you face in the decision making process.  

The process of deciding how to handle the diagnosis was the most challenging and difficult for me emotionally.  The weeks and months of learning, evaluating and deciding meant looking deep into my heart and mind to make difficult decisions.  There is much light at the end of the tunnel as long as your decision is one that you believe in.  Guide your treatment and follow your gut-feeling about your doctors, diagnosis and plan.   

All the best to you in this journey - one step at a time. 

loracc

Danielle,

You've gotten good advice on this forum, and I agree that you should speak to genetic counselors and breast surgeons, preferably at a large cancer center.  The National Cancer Institutes has a list of designated cancer centers on their web site:  http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html 

Your family history is strong, but you don't say how old your family members were when they got breast cancer.  Unless they were very young, it is probably too soon for you to be thinking about prophylactic mastectomy.  You can be carefully monitored with regular breast exams, mammograms, and MRI's.  Another option to reduce your risk may be to take Tamoxifen or Raloxifene when you're older. 

Not all women with the gene get breast cancer, and no one knows why some do not.  Lifestyle plays a role in who gets breast cancer, and some women are able to reduce their risk by adopting healthier habits.  For information on this:  www.ReduceBreastCancerRisk.com.

Best wishes to you.  I hope you take your time and find good people to advise you.   

Jana123

Hi Danielle!  It's a shock when you find out you are BRCA +, and I found out much older than you, when I was found to have breast cancer this year, at age 41.  Yes,  I was the first diagnosed, (other than my paternal grandmother), as my FATHER was the carrier.  So, unfortunately, surgery is clearly an excellent way to reduce your risk tremendously, but it has to be the right way for you...Everyone has different comfort levels.  I chose a bilateral masectomy with immediate reconstruction.  I was caught at an early stage, so I was lucky enough to not have to do radiation or chemotherapy, based on pathology reports and additional oncotyping results.   That is hopefully the great advantage of doing a prophylactic masectomy, to never have to go through that process.   Now my sisters are being tested for the BRCA2 gene, to see if they have it also.   So, very soon they may possibly be asking the same question as you...Is surgery the answer?  ..Well, yes, for some it is, ... ( but the few people I know personally who have done it, they are thrilled that they did it....I must admit )    Hope that is helpful!  Good luck and take your time to decide....

Deirdre1

Hi again Danielle, the above is all really good advice.  My breast surgeon told me to tell my daughter to take 10 years off of my age at dx and then start her scans religiously..  I don't think it is an "absolute" rule but it seemed to hold true for me.. my father was dx'd at Stage II at approx. 63/64 and I was dx'd at Stage 0 at 50/51.. so it seems to be a good rule of thumb and if you are caught at Stage 0 or I you could then do the more sever surgery.. It is dependant (to some degree) on the age of the parent/grandparent at dx as well as the aggressiveness of the cancer itself..  Hope this adds to your knowledge in some way to help relieve your young mind..  I haven't encourage my daughter to move that time frame up, but if you are really concerned maybe take 15 years off - but see if you can also find out what kind of cancer your Mom and her sister were.  Was it estrogen/prog positive?  Was it Her2+ (that's kinda new testing so they may not know).  And finally if your Mom and Aunt don't know these things they can check where their biopsy's were done and sometime, SOMETIMES they keep the tissue for along time.  Dr. Slamon was able to check my dad's tissue approx. 9 years after the original biopsy.. for his (new at the time) Her2 test... so there are other things you can do to sort of buffer your decisions..

sarahlu2

Hi Danielle,

I sympathize with you, these decisions are hard ones!  I had bc when my daughter was 4 though and at that time I only had the lump removed, followed by chemo and radiation.  I was tested later.  I just wrapped my mind around the mastectomy and reconstruction and am home recovering from it.  I found it trully a blessing that I could have this operation.  I am happy with the results of the tram flap procecure (using tummy fat to reconstruct the breasts) and am beginning to realize what this does to my outlook on life and to my good feelings for my future.  

But I knew I was done having kids.  You are just starting your life.  In my humble opinion, of course you should listen to a few doctors, is you can be monitored (and insurance should cover it) every 6 months with alternating MRI and mammogram, as I was being monitored.  I think that is pretty much the standard now.  BUT also, never forget to check your breasts each month, after your period if possible.  I found my lump myself and since I also have a family history, I acted fast, crying in the surgeon's office to be seen.  

I am so glad to hear you are taking a proactive approach to your health.  It's scary to think about it and even scarier not to.  Enjoy that supportive husband to be!  

p.s. If you have questions about the mastectomy let me know...

whippetmom

Danielle:

What does your oncologist recommend?  I have a history just like yours - maternal grandmother, mother, maternal aunts, but negative for the BRCA gene.  I am 58 years old and was recently diagnosed and went through bilateral mastectomies with reconstruction.  I do agree with loracc that you are very young, but you are wisely asking the appropriate questions.  At what age were your maternal family members diagnosed with BC? Have you met with a breast cancer genetics counselor to discuss your risk potential? 

You are absolutely doing just what you should be doing.  Asking questions, exploring options and making every effort to ensure you come to the right decision. 

NikiC

Hi Danielle,

I love that name, it's also my daughter's name and she's about your age.  I found out that I had the BRCA2 gene after going through a biopsy that showed I had atypia (pre-cancer).  I decided to have a bilateral mastectomy with immediate reconstruction 3 weeks ago.  My main reasons were so that I didnt have to ever go throgh chemo or radiation if I ever did develop cancer.  Also if you have the surgery without cancer (profylactic) they don't have to take out any of your lymph nodes which as I hear can cause more problems like lymphadema and longer recovery time for range of motion. The surgery was a cinch (especially since no nodes were taken out) and expanders so far are not that bad either.  Since I have no cancer and no need for further treatments I can have my expanders filled as little or as much as I want and there's no timeframe which makes it really easy.  For me the decision was a no brainer since my mom and sister both had cancer and I always knew that this is what I would do if I was ever faced with this situation.  My two daughters aged 21 and 22 said it was the right thing to do and that they think they would do the same thing if they were faced with it.  You are young however and have plenty of time to really think it through and it sounds like you have a great supportive fiance.  Good luck and I hope this helps a little.

Anonymous

Hi Danielle,

You are still very young to have to worry about this, and it is definitely not an emergency situation.  The solution you are looking at is drastic...effective, but drastic, and not one that you can reverse later.  It is great that your fiance is being supportive, and knowing your risks, you may want to get genetic counseling, and maybe to think about starting your family sooner rather than later, but surgery can probably wait a few years till after you have any child(ren) that you are planning.

How old were your mother, aunts, grandmother when they were diagnosed?  That should give you a basic idea of timing for yourself.  You definitely want to make your decision at least a few years (preferably 10) before the youngest age at which a close relative was diagnosed. 

I am in a very different situation than you are.  I had invasive cancer in one breast, and pre-cancerous changes in the other.  My children are adults, and I was long done with breastfeeding. 

I had a bilateral mastectomy with immediate implants in March.  I am very happy with the results, but I still get twinges when I move too quickly and stretch too far.  I am also aware that not everyone has the kind of results that I do. 

There is a time for everything.   The time to worry about the future is still in the future.  I am one who is hopeful that by the time you (and my daughter and my niece) are old enough to need to worry about developing breast cancer there will be a cure, or even better, something easy and effective (and less drastic than mastectomy) to prevent it.  If not, you can always make the decision to have the surgery when it is right for you. 

For now, appreciate the fact that your suspicious lump was benign, enjoy your wedding, and start your new life.   

frosty2

I recently found out I was also positive for brca1.  I am 38 so my decisions may be different from yours.  I would highly recommend a genetic councelor who can talk to you about the different options and choices .   Also visit http://www.facingourrisk.org/  as they have a wonderful young "previvors" area about the BRCA gene mutation.

Good luck!

rogam

I found out that i was brca1 back in  may. I just had a bi-lateral and my a hysterctormy on Monday. I am glad that I am taking the necessary steps to minimze my risk.  I know that you will make the decision best for you.

Cheryl54

Hi Danielle.  I am 54, old enough to be your mother though I feel much younger.  I watched my own mother die from bc after having it in both breasts.  I had two other close relatives with the disease, though I tested negative for BRCA.  From age 35, I've been under the care of a high risk breast clinic at a university hospital.  Through the results of repeated fine needle aspirations, I knew I had a great deal of atypical hyperplasia.  My doctor told me that my family history and lab results, viewed together, put my lifetime bc risk at 85%.  It was hard to sleep after hearing that!   In July 2006, I had a prophylactic double mastectomy, a difficult step to take, but one that was well worth the pay off in peace of mind.  I had immediate reconstruction -- expanders followed by silicone implants then nipple reconstruction.  Although my new breasts are not the well-loved and familiar "originals," I know they will never get cancer.  Cosmetically, they look terrific, and I walk with confidence around a gym locker room knowing that no one can tell the difference.  The small scars are fading, and my friends think they look great.  I agree it's a tough decision, and the best thing to do is what everyone else has said -- talk to other women, get all the information you can, share your thoughts with those closest to you, then make a decision.  If you decide to go for the double mast, make sure you have the best plastic surgeon you can find.  They can do amazing things.  It was exactly three years ago when I first started considering the mastectomy option.  I can truthfully say now that I have not had a moment's regret.  I woke up from my surgery smiling, knowing that I gotten rid of worry, stress and the constant fear that I wasn't eating enough broccoli, drinking enough green tea or grinding my own flax seed.  My post-surgical pathology report confirmed the wisdom of my decision -- I was filled with pre-cancerous cells in both breasts, including LCIS. After reading that, I really felt like I'd "won," -- I got "it" before "it" got me.    So, I'm still smiling, and have no regrets, not a one.  Good luck with your decision making.  The women here are great and everyone is willing to answer questions.  You might want to check out the breast reconstruction forum nearby.   

jdash

danielle   i had a dbl mast due to bc dx but i was able to have nipple sparing surgery at memorial sloan kettering in nyc  doctors do it and i would recommend you ask your doctors about it     the nipples dont have any sensation but they are still there and some part that still looks familiar

the scaring is also very minimal and the implants looks better than my breasts before  if you have any questions feel free to pm me

xoxox

julia

smirks44

Another great website to check out is www.bebrightpink.org  This site was founded by a young BRCA+ woman who did opt for prophylactic mastectomy.  I think you will connect with others there who are making the same tough decisions as you are at the same point in life as you!  Good luck with your difficult decision making!

(I am 41, BRCA2+, had prophylactic mastectomy and oopherectomy last year) 

Bronwen

Hi

Ultimately, only you can decide what to do.  It's hard, really hard.  What you decide today, may change in the future (unless of course your decision is to go for the operation).

Talk to people, talk to your oncologist and plastic surgeon.  Before my profilactic masectomy I even met one of their former patients, who showed me her final result.  She hadn't tested positive to the gene, but due to family history, for her, the operation was a no brainer.  For me, it took me several years to get my head around it, and now it's done.

What happens afterwards no one can guarantee.  I'm one of the ones who suffered huge complications, a month in hospital and several operations.  My tissue expanders had to be removed and I've no idea when the second attempt at the reconstruction will take place.

But, I'm alive, and less than 6 months after getting discharged, I'm doing triathlons.  You see, life does go on.  That's why some of us have this operation, it's for a hopefully longer and healthier life.  Yes things can go wrong, but they may not go wrong. 

Talk to your partner, talk to your doctors and for now, enjoy planning your wedding. 

B