BRCA 1 pos--weaning--mastectomy

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krisnanbrandy123
krisnanbrandy123 Member Posts: 66
edited June 2014 in Genetic Testing

I am BRCA 1 positive and found out this summer.   Within days I had a breast MRI which came back clear and had an oophorectomy in the summer.  I have been meeting with surgeons and trying to make a decision about a DIEP or implants.   

My youngest son still nurses twice a day.  I should have weaned and was supposed to stop nursing so I could schedule my mastectomy but it is so hard for me.  Emotionally.   One surgeon told me she would do the surgery eight weeks after I stop nursing and another said it should be longer because of possible infection.  Has anyone had any experiences with this type of situation?   

In December it will be six months since my clean breast MRI so I feel I need to move ahead.  I am so scared about something happening between finding out about the BRCA and making the decision to have the mastectomy and the actual surgery.  

I have a mix of so many emotions...deep gratitude for being able to even have this information and decision, fear, loss, sadness/horror/anger for my cousin who is battling breast cancer and a brain met (she is the reason I found out about the BRCA) and sometimes total panic that I am not moving quickly enough, the impact on my young boys who will see their fun and active stay at home mom in bed and unable to care for them.  I keep circling back to gratitude but with the decisions in the air including who will take care of my boys while I recover, the impact of the surgery on my physical well being and so on and so on and so on.  

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  • LAstar
    LAstar Member Posts: 1,574
    edited December 2013

    These boards are slow during the holidays and I just wanted to send you a virtual hug! You have a lot to manage  and it must be very hard with what your cousin is going through.  I can imagine that it's hard to find the right time to schedule surgery while you are nursing - it's hard to give up that super-power!  I had to wean suddenly when my mom had a stroke, but my daughter was 2 and it was okay. She was 4 when I had my BMX, and she loved the time after surgeries when we spent lots of time reading!  She has great memories of my post-surgical recoveries because I was not worrying about work or dishes or schedules, only resting and spending time with her. She would come check on me while I was asleep. I would hear her tiptoe in and feel her rub my arm and pull up my covers.  What could be more healing?!  :)  Kids are amazing, and they are the best reminder of why we are aggressive in dealing with BC.  You will get through this, and you will all be stronger for it. I wish you the best with all of these decisions. {{{hugs!!}}}

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited December 2013

    thank you so much for this.  Your response was a real gift---I am a pretty positive person but you helped frame my recovery in such a different way than I had imagined.  All I kept focusing in on was loss.  My son is two and a half and so really ready to wean completely.  It was a relief to hear about your experience with your children during recovery.   

    Thank you for the hug.  I needed one tonight.  Right back at you :)

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  • sabihah
    sabihah Member Posts: 65
    edited December 2013

    I nursed both of my children until they were toddlers, and it was bittersweet to wean them, for sure!  I went on the "don't offer, don't refuse" plan at 12 months.  They both went on a nursing strike for a few days around 18 months of age, and I just told them that the milk was gone after that.  It was mostly painless.  They were a little upset, but not very upset.  They were willing to trade nursing time for time in the rocking chair with a book and some lullabies.

    Perhaps this could be more empowering for you if you remember that you have a choice -- you can wean him soon to move on with the mastectomy as soon as possible and stop worrying about breast cancer, or you can wean him more gradually and enjoy your last few months of breastfeeding. 

    Even with BRCA1, your chance of getting breast cancer in any one year is only a few percent, so I don't think you need to panic.  You do have control over the situation!

    Also - happy holidays!

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  • lekker
    lekker Member Posts: 594
    edited December 2013

    I might be wrong but I think that the oophorectomy alone already has cut your breast cancer risk in half, right?  Taking a bit of time to wean on your own schedule probably won't increase your risk in a significant way.  It can be quite emotional for a woman to wean in the best of circumstances, but when you know it's your last baby (and boy have you had to acknowledge that this is your last baby), it can be that much harder. Be gentle with yourself as you prepare for this surgery.  You're doing it for your boys and while it might be hard on them in the short term, they won't remember your recovery but hopefully they will get a lifetime of wonderful memories with you!

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  • LAstar
    LAstar Member Posts: 1,574
    edited December 2013

    Thanks for the hug!  I can always use a hug!

    It's hard not to focus on the loss and fear of the unknown. When my surgery was over, I experienced a huge wave of relief of having it behind me.  The recovery was easier for me to deal with than the fear of the unknown.  Thank goodness for meds too!  I realized recently that I cried many times before my BMX, but only once afterward when I was away from my family for a few days. Waiting is so hard. It must be especially hard to make this decision when you don't have cancer. I think you will have a huge weight lifted when this second surgery is done. 

    I had lots of help from friends and my husband, so I tried to enjoy my recovery time. I read cheesy books, watched fun movies, caught up with old friends on long phone calls, and tried not to worry about all the things that I couldn't get done.  It was great to return to a productive life again, and I don't complain about being busy any more! 

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  • btydragon
    btydragon Member Posts: 1
    edited December 2013

    LAstar is totally right about the nerves before the mastectomy. I was a walking, talking, shaking, wreak and I didn't have to worry about weaning.   I'm only about three weeks out of my PBMx and I'm also BRCA1 positive, on the nastier end of the mutation spectrum.  I made my choice so that I can see my babies grow up; I've also got boys.  The wonderful thing about kids is that they are adaptable.  And if your are a fit and active mama, odds are you'll be back to board games, Legos, train tracks, laundry and the like sooner than you think.  You know your baby(ies), your family, and yourself very well. Have faith in you. Whatever you decide, you can do this.

    Just don't push it too hard, and don't catch flying toddlers. (I made that mistake and OUCH!)  

    And remember chocolate is your friend; its the best source of antioxidants, or something healthy...

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited December 2013

    Thank you...I so appreciate your support and insight.   I am trying to honor my feelings about ALL of this but also being clinical and straightforward.  Sort of a "just do this".  I do not want to live my life terrorized by breast MRI's and mammos.  My decision to have the PBX is sure but have not decided on the type yet.  So, I am grappling with that decision too. 

    I also have two young boys and they are so busy and fun and all over the place...it is just so hard to envision a recovery.  But, it really helps to hear from those of you who have done it with young children.   Chocolate and no flying boys...I will certainly remember that :)

    I found out about my gene mutation when my 40 year old first cousin was diagnosed with breast cancer and tested BRCA1 positive.  There is no cancer in my family tree at all.  Actually no diseases at all.  It was suggested I be tested and here I am.   My cousin had the cancer metastasize to her brain.  She had surgery and is doing okay right now.  But, I have been in touch with her almost daily on this horrifying journey.  So, there have been many moments...usually in relation to my cousin...where I have been frantic, devastated, immobilized and completely panic stricken.   In between I try to practice gratitude and just getting in shape mentally and physically for surgery and recovery.  The kindness of strangers has helped :)

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  • josgirl
    josgirl Member Posts: 231
    edited December 2013

    Krisandbrandy123, I understand the emotional pain this is causing.  I was diagnosed while breastfeeding (found my own lump and knew it wasn't breastfeeding related) my 18 month old daughter.  I was told to immediately wean and then had surgery less than 2 weeks after that.  Weaning was so tough and I was so mad at the world.  My daughter was older so the health benefits were already transferred but the emotional part (I was a single mom) was so strong.  My daughter was MAD!  Luckily I had just gotten engaged and my fiancee put her to sleep for a week and then family visited for the surgery so looking back it wasn't so bad.  I was the one really in pain from that event (as well as all the other decisions/requirements cancer seems to give you) and my daughter -while she did notice - got through it fine. 

    But surgically speaking, I was told I had to stop breastfeeding becuase active milk ducts make for not only a messier surgery but also possible recovery complications.  But the timeframe - eight weeks - you were given doesn't make sense to me.  All the women I know who stopped immediately for one reason or another didn't continue to make milk for that long. Really conservative estimate? Also I had two opinions and had the surgery at a top research hospital.  I can't remember exactly but from weaning to surgery was at most two weeks.  My situation may have been different since I had active cancer and I assume you are doing it profalactially  (whatever that word is) so maybe the risk doesn't outweight the benefits.  And I had a lumpectomy as well.  But I had (thank G-d) the best surgery I could have and not complications from the breastfeeding. 

    This is tough and a lot of people can't or don't really understand and it took a lot in me not to be hurt or be mean in retaliation to some responses.  But out of the many things I 'mourn' about my old life - having my breastfeeding timetable dictacted by cancer is one big one.  I am certainly grateful I caught it but can't say it doesn't hurt.

    Something that helped was mentally preparing myself and really enjoying (and strangely) taking some pics of my last few feeding sessions.  That did help. 

    I really liked LAstar's response - there are other amazing ways to bond that this surgery / journey may bring that you didn't anticipate or wouldn't have done without it.  Didn't see it then but that perspective may have helped me then. 

    PM me if you want but saw your post and wanted to respond.  Happy New Year -     

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited January 2014

    josgirl...thank you for sharing your experience.  it was a great comfort to me.  

    you hit the nail on the head...I am breastfeeding but it is not for nutrition at this point.  And, when I try to distract him or deny him he gets so upset.  I know this will pass as my other son did not just choose to stop nursing but was weaned.  i am trying to just feel grateful and peaceful about my wonderful nursing experience and just know that I am doing this surgery to save myself from getting cancer.  period.  and, concentrating on the fact that knowing I am BRCA positive before a cancer diagnosis is a gift.  i have such a mix of emotions--because I know how fortunate I am but still it is hard and sad.  

    your idea of taking pictures is wonderful...i will do that....thank you.  

    i am so glad you responded and i will reach out again if that is okay when i have my surgery date.  thank you and happy new year. 

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited January 2014

    LaStar...yes...so difficult to do this knowing you do not have cancer.  removing healthy breasts that fed my babies...there is great sadness.  but, mostly i feel so grateful that I know and can do something.  my first cousin is the first person in our family to get breast cancer (she is 40 as am I).  That is how I found out I needed to be tested for BRCA gene mutation. She now has a brain metastasis.   The fact that she is going through this nightmare and she saved me from going through it is all part of the pain and anxiety I am feeling for her, for me...for my sisters who are in the process of being tested.  My cousin also pushes me very hard to have surgery ASAP and gets incredulous I have not stopped nursing.  I totally understand where she is coming from and she is very loving.  But...these interactions leave me deeply sad and panic stricken.    

    I can totally see what you mean about the before and after surgery---when it is done, I think I will feel deep relief.  Thank you for your message...so helpful and hopeful :)

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  • jenjenl
    jenjenl Member Posts: 948
    edited January 2014

    Hard situation for sure.  The information you have is so powerful.  You have to do what you feel is right.  I had a very close friend that had a PMX while I was going through my cancer dx - I was SO jealous that she wouldn't have to deal with it (rather her chances went down to 5%).  She went ahead with it after I got dx - it really seemed to resonate with her that if I got it so could she.  

    Your in the damn if you do and damn if you don't position.  I think you will sleep much better once you complete this step.  I say make your line in the sand and put this crap in your rear view mirror.

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