Surgery, dense breasts, HER2+ and me

Bippy625
Bippy625 Member Posts: 890

hi all,  i have to decide surgery after chemo final round in Dec. i have at least one node involved, and a tumor in right breast. No spread to bones or organs now.  I go for genetic tests this month.

I am leaning towards BMX now, even though i may have a choice of lumpectomy. Mine is a sneaky little F**k that likes to travel and recur. If my breasts were not dense, i would perhaps lean towards lumpectomy.  A mammo did not pick this up at all, and i dread the thought of it happening again local or to other breast. I do not relish the thought,of a bmx!

I of course will discuss with onco and surgeon, but want to hear from anyone willing to share. Gathering info and want to make the best decision. Seems alot of times my dx group gets a lumpectomy, only to have it recur and end up getting BMX anyway. Thanks!

Comments

  • angelfaith456
    angelfaith456 Member Posts: 83
    edited September 2014

    Bippy,

    I too, had dense breast and lumpy girls, triple negative, no family history either...because of the aggressive type of cancer I had, I decided on BMX..I truly did not want to live in fear of a recurrence in the 'other' breast..I just had surgery Aug 19th after going through 6 months of chemo..I DO NOT want to go back through that again..So BMX was the only way for me..

    Only you can make the decision of what is best for you..

  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited September 2014

     I had a uni mast...bilateral was not offered.The next year at my mammo,I got a letter saying I had a very dense breast.That combined with the fact that my remaining breast was so large and I was uncomfortable with a prosthesis made me decide to have a proph mast. I wish I had had a bilateral originally and spared mysef the additilonal surgery.

  • CassieCat
    CassieCat Member Posts: 1,257
    edited October 2014

    Does anyone else have any comments to contribute?  I was looking for info on this too - and found bippy, who's in my chemo August 2014 group! 

  • Alicethecat
    Alicethecat Member Posts: 535
    edited October 2014

    Hello Biopsy

    I'm sorry you're going through this but the decision you make will me right for you - the decision you make with the info you have at this time.

    In case this is of help to you, I had a grade 3 tumour, HER2+, close to the chest wall and dense breasts, stage 2. I was offered a lumpectomy or mastectomy along with other treatment.

    In the UK, NICE Guidelines (just put it into Google) talk about radiation after a grade 3 tumour that's close to the chest wall but they don't insist on it.

    The breast surgeon said he would give me a mastectomy if I wanted but I could have had a lumpectomy.

    I didn't want to go for follow-ups every six months in the UK and would have worried.  Sometimes I miss my breast but mostly I get on with my life. I haven't had reconstruction yet but may do so next year.

    So I had the whole caboodle of treatment - mx, chemo, radiation and Herceptin - and am currently cancer-free.

    Is this the luck of the draw or is it due to aggressive treatment for an aggressive early stage cancer? Who knows. There is no right or wrong answer.

    This is purely my personal experience and I wish you luck and hope. This is the worst time. It gets better once you've made a decision and a treatment plan is in place.

    By the way, my friend, Horsy Girl, was triple positive and had the same treatment as me nine years ago and is getting on with her life - no cancer, no recurrence. Maybe the outcome would have been the same if she'd had a lumpectomy. Who knows?

    The most important thing is to make the right decision for you at this moment in time.

    Good luck

    Alice

     


     

  • hummingbirdlover
    hummingbirdlover Member Posts: 421
    edited October 2014

    Hello and welcome! I will be having both removed tomorrow. I also have very dense breasts, which was news to me. I have 3 tumors so far and 2 were only found by ultrasound. Right one has to come off because BS said by the time he took 3 chunks hoping to get clear margins, I wouldn't have anything left and I decided if one went, the other one was too. I don't ever want to go through this again and the fact that it took an U/S to find some of these scared me so it seemed right for me. It's a very personal decision and pros and cons on either side. Just follow your heart, do some research, talk to the wonderful ladies here and do what's best for you!! I hope everything goes well for you! 

  • rozem
    rozem Member Posts: 1,375
    edited October 2014

    bippy - as the others have said its a very personal decision - if you are a lump candidate I don't think being her2 plays in to the surgical decision as far as the MO/BS goes but it may play in to your personal decision.  Many of us talk about our dense breasts and how it was never seen (mine wasn't either on a mammo.  For me I couldn't feel confident that they would catch another one early enough and even if its early with her2 you are in for chemo AGAIN.  HOWEVER keep in mind that the percentage of reccurance  in the breast after a lump is still only under 10-12% (or close to that) and the percentage of a new BC either in that breast or on the contralateral depends on your personal history and risk factors - but again unless you are brac positive or have an extensive family history are quite low.  I think mine was double the average womens lifetime risk so I think it was about 20-24% which was too high for me but some women look at it differently,  they have almost an 80% chance that they will never see BC again

    good luck with your decision


     

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2014

    Bippy, my only comment with regard to your situation is that you have to keep in mind that while a BMX will significantly reduce (but not eliminate) your risk of a possible new cancer diagnosis in the future, with regard to your current diagnosis, it will not have any effect on your risk of a distant recurrence (i.e. mets) and it may only reduce your risk of local recurrence by a relatively small percentage.  A lumpectomy & rads, plus chemo and hormone therapy (and Herceptin, if you are HER2+) might get your local recurrence risk to a very low level.  So your risk after a MX might not be much different - a MX unfortunately will not totally eliminate your risk. Talk to your medical team to find out what they estimate your local recurrence risk to be with a lumpectomy (and all the other treatments you'll be having) vs. a MX.  

    Good luck with your decision. 

  • Bippy625
    Bippy625 Member Posts: 890
    edited October 2014

    angel carol, alice, hummingbird, rosem and beesie-thank you all for sharing. I am seeing onco Thurs. & will be asking when I can do surgical consult.   

    Hi Cassie!   

    Your input is important to me, as you have been there already and I can trust getting honest answers.....I feel at this point I will ask for a BMX, it is what I feel in my guts right now anyway. I just would worry myself ill otherwise, whether valid or not, who knows? It is all a crap shoot in the end, that is true, no matter what we try.  I always will hope for the best. At least it may buy me some piece of mind=priceless. Not sure about recon yet...will get there soon.

    Thinking of you Hummingbird, best wishes tomorrow!  Let us know how you are.

  • Akitagirl
    Akitagirl Member Posts: 142
    edited October 2014

    Hi Bippy - this is a difficult decision indeed.  Originally, I was not even considering a bilateral mastectomy.  However, I did say that if my genetics came back positive, then I would consider it.  So...I did test positive for the PTEN mutation, which puts me at a very high risk of recurrence in the other breast.  Therefore, I have decided to move forward with a BMX.  Some of the thoughts that help me feel a little better, is that I am very small to start with, I am having augmentation done, and now they will be easier to match.  That may sound silly, but it does help me cope with the thought of losing both breasts.  Another thought that puts it into perspective is that I am 42, and do not want to continue getting mammos and CBEs every few months for the rest of my life.  That does not fit in with my busy life.  

    Have you had your genetic testing?  That might help tip the scale.

    Akitagirl

  • CassieCat
    CassieCat Member Posts: 1,257
    edited October 2014

    As of this morning, my plan is a mastectomy on only the side that currently has cancer. I tested negative with my genetic testing, and I think I will be OK with doing more frequent imaging and whatnot because I live about three blocks from the breast center, the cancer center and the hospital.  My surgeon is of the mind that long-term survival rates are not improved with BMX. I've been doing some reading on it and have a few things bookmarked. Had my genetic testing been positive, it would have been a BMX and likely ovary removal as well. At this point I'm leaning toward reconstruction as well, though if I need radiation (likely) then apparently reconstruction may have to wait.  Bummer.

    It's a personal decision, for sure. I'm looking at surgery sometime in early to mid-January, so I have time still to think about it.

  • knmtwins
    knmtwins Member Posts: 598
    edited October 2014

    Bippy I read on some other post that you were doing a BMx in Dec and said we need to start a Dec. sisters page.  For me, I wanted a mastectomy from the beginning and had almost every doctor try to talk me out of it.  But too bad, that is what I wanted.  I had no idea I could have a BMx, once I started pre-surgery chemo, I found that out, from other ladies who were doing after surgery chemo.  Everyone seems to say the stats are about the same, but to me, I'm confused.  I thought if you had breast cancer your chances of getting it again were increased.  So, take as much of that tissue away as possible.  I didn't like chemo and do not want to have to do it again.  My breasts are dense too, so that is another thing that scares me.  Heck, my boobs have always been too big, now I can get smaller ones.

  • Bippy625
    Bippy625 Member Posts: 890
    edited October 2014

    Hey KNM, yes once We get our surgery dates, lets start that page! I just do not want to have to come back and do it again, and if you read these boards enough you Will find a lot of ladies had to do just that, a year or two later.  Also, sometimes they do a prophylactic BMX and guess what, it is there in the other one in microscopic form anyway, just not showing lumps yet.....I don't trust my dense tissue! And I definitely don't trust BC. My PS consult is November 10. 

    At my next to last chemo now, woohoo!   I hate this chit and am anxious to get it done.  

  • knmtwins
    knmtwins Member Posts: 598
    edited November 2014

    Bippy - how are you doing?  I'm starting to come out of my last TCHP haze from last Wed.  This one was almost as bad as the first, and of course much worse later, as this silly fatigue is so draining, the hot flashes so anoying and the neuropothy so disturbing.  

  • Bippy625
    Bippy625 Member Posts: 890
    edited November 2014

    hi knm, i'm doing okay thanks! I'm about seven days out from my next to last chemo. Only one more left to go. Looking forward to meeting with the plastic surgeon on Monday so at least I will know what the plan is to be. No date yet for surgery but I'll let you know. I think it may be mid December.

    Chemo has been extremely rough on me. This last round was almost the worst. Right now my husband is picking up a prescription for Cipro for me as my white blood cells are down. Yeah I never want to repeat this again either!  It hasn't happened yet but I anticipate going into chemo pause also anytime so maybe joining you and hot flashes soon. 

  • knmtwins
    knmtwins Member Posts: 598
    edited November 2014

    Wow, Bippy, you are getting your period on TCHP.  I had no clue that was even possible.  BTW stay on top of the constipation for round 6.  I didn't and Sunday (my chemo is on Wed) was a bear almost as bad as round 1.  I'm just so happy no more chemo.  

  • knmtwins
    knmtwins Member Posts: 598
    edited November 2014
  • Bippy625
    Bippy625 Member Posts: 890
    edited November 2014

    hi knm, see ya on the surgery board! I will invite the gals from August chemo club too.

    I am not getting my period, has a partial hysterectomy in 2010, but pre menopausal. They say chemo will hurl you right into menopause though, and if not that, the hormone drugs! Ugh, whatever. It all sucks, yes?

    I WISH for constipation, I only get the Big D! Haha, well....surgery will grant that wish, right? I meet with Ps tomorrow and am headed to your new board now. Congrats on all chemo well done!!

  • knmtwins
    knmtwins Member Posts: 598
    edited November 2014

    Bippy, gotta love the Perjeta D. I'd get constipated from the chemo and not go the first day or two, then D would kick in and I'd feel like I was going to die. I found if I 'went' on Friday, then it was just laxative d and then when D kicked in, the horrible pain like childbirth wasn't present. But yes, Perjetta d, gotta love it, I'm Cycle 6 day 12 and heading to the 'facilities' right now.

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