Mastectomy after lumpectomy

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breastcancerbites
breastcancerbites Member Posts: 6

Hi Ladies,

I was diagnosed with breast cancer only over 2 weeks ago, and had a lumpectomy a little over a week ago.  It all happened so fast that my head was just spinning!  But now that I've had a little more time to think about it, I'm wondering if I should go back and get a double lop-off--and if insurance will even allow me to do that? It was 2cm large, negative nodes, hornone receptive. 

I just turned 37 years old, and my younger sister was also diagnosed about 6 weeks before I was.  So we're on this journey together.  So considering these circumstances, I'm wondering if I'd have more peace of mind to do mastectomy, as well as less possibility of recurrence locally.  I'm aware that long-term survival is about the same--but I'm concerned about being permanently cured for the next 50 years!  

Anyone willing to weigh in?  Thank you so much!

Michelle

Comments

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009
    That's what I did and haven't regretted it for a second! Laughing
  • PS73
    PS73 Member Posts: 469
    edited November 2009

    Hi Michelle, so sorry to hear of you and your sisters dx.  I had a lumpectomy and after careful consideration, have decided to do a bmx.  Well, lets say Im 97% certain.  My Onc and BS said that the recurrance rate may be similar between bmx and lump/rads however every year, an added 1% risk is put into your risk factor for a new breast cancer.  For me, at dx of 35 that means I have an additional 25% chance of getting a new breast cancer by the time Im 60.  This isnt always cut and dry.  After seeing the study that otter posted regarding young breast tissue being dense having a higher recurrance is what brought my decision from 80% to 95%.  The remainder 5% is a. I don't want to lose my breasts. b. if i did careful breast care (not a lot around but I do belive in the iodine aspect) and very regular follow ups, maybe it won't happen to me. ..but if it does, Ive heard many women say they would do mx then.  Im just cutting to the chase.  It is such a personal decision.  I for one do not want to lose my breasts but the surgery pictures the strong women have posted have made me more assured of the decision, so Im in the 97% aspect.

    I asked about if I recur and wouldn't it be better to have more breast tissue so the cancer has somewhere to go vs my chest wall/bones/lungs/spine.  He thought I was stupid, nice right?  He said having a bmx does NOT increase my chances of Mets.  I wasn't really going in that direction with my question but I had to ask it.

    You mentioned insurance.  I asked my BS (who supports my decisions either way) about this and she said and I quote, its less expensive for the insurance companies to do a bmx than for them to do a lifetime of scans - I still need to confirm with my insurance.

    Good luck.  Keep me posted, we may be going thru surgery at the same time and can compare notes.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009

    Your question about having breast tissue if there was a recurrence was brilliant! I got goose bumps reading it. What an idiot doctor. It made perfect sense to me. If I left some tissue and got a recurrence it would take over the remaining tissue rather than invade muscle and bone. You get my vote for a great question. I think you just took him by surprise.

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Insurances will most likely cover BMX. Have you and your sister been tested for BRCA gene mutation? If not, please consider that test right away. If you are positive, then a BMX is strongly recommended.  If you are negative, that's still something you could ask for. Also know that with ER/PR+ cancer you have such excellent prognosis that doctors may advise against BMX.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009

    Actually, the ER/PR+ isn't as good as being HER2+. Herceptin right now seems to be the wonder drug.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Have either you or your sister considered  being genetically tested? It might go a long way in helping you make all these difficult decisions.

    anne

  • Marple
    Marple Member Posts: 19,143
    edited November 2009

    Barbe, are you on anything for your ER+ status?

  • bklyn123
    bklyn123 Member Posts: 1
    edited November 2009

    Hi Michelle,

    I'm 38, with a similar diagnosis (and date of dx close to yours), have significant family history and am BRCA-.  I'm having a great deal of difficulty deciding on lumpectomy vs. bilateral Mx, but am lately leaning toward Mx.   With prophylactic mx, especially when a lumpectomy would work this round, and not having been through full treatment, I find it so difficult to be the one to decide.  Although I guess choice is better than no choice...

    Also, a family member had a recurrence on mastectomy scar and new positive nodes- I'm confused about the question someone related earlier about best to have tissue or not for recurrence...

    Good luck on your decision,

    Melanie 

  • Marple
    Marple Member Posts: 19,143
    edited November 2009

    I am also wondering the same as you Melanie, about leaving tissue behind..........I (perhaps ignorantly) assumed the less tissue left the better.

  • breastcancerbites
    breastcancerbites Member Posts: 6
    edited November 2009

    Thanks ladies,

    You bring up some good food for thought, as well as good questions for me to ask my own oncologist this coming week.

     Just some for info:  my margins from the lump. came back nice and clear, so that's encouraging.  And I do plan to ask about genetic testing due to my family history. Perhaps that will help me make a more informed decision.

    Part of it is peace of mind, too.  I'm worried that I'm going to wonder about every lump and bump in my breasts for the rest of my life.  And if my body already knows how to make cancer in my breasts, perhaps they need to go!  And my research leads me to believe that if I do have radiation and then later recur, it's a little more dicey trying to do reconstruction in the radiated breast.  

    I know it's a very personal decision and I hate that I even have to think about these things.  Thank you for your willingness to share your thoughts with me.  Thankfully, I don't have to make this decision immediately, but I will say I'm leaning towards having it done since I have so much time ahead of me in life to worry/recur/be exposed to estrogen!  

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009

    Now....I did the double mast to avoid worrying, BUT....I now have two different masses in either side of my chest. I am STILL worried! They are certainly easier to find and feel without dense breast tissue, and I do know that the mast makes no difference for survival rate...but I thought it might help recurrence rate! So, these may just be fat necrosis (though I didn't have rads) or scar tissue (though they aren't on the scar lines) or just an infection somewhere else in my body affecting the nodes under my arm. I don't know at this point, but I now have to go through all the same testing I did last year at this time.

    So, my point is....don't do it just to avoid worry. I'm sure it helps, but I still checked just a feverishly as if I still had breasts. This is just my first year out so I've been nervous but have promised myself if these masses check out okay that I'm going to forget that I ever had breast cancer! Laughing (except for my flat chest of course...hehehehehe)

  • PS73
    PS73 Member Posts: 469
    edited November 2009

    Barbe, sorry to hear about it.  I hope your testing goes ok.  What types of tests do you need to do with a bmx?  Do you have follow up scans yearly as well?

    ..what I was referring to earlier regarding my question to my onc, basically - if you are going to recur are you going to recur regardless of bmx/lump+rads.  His response was the bmx does NOT increase your chance of mets.  ..so basically if I had a lumpectomy and had some cancerous tissue around, yes it would be easier to get a recurrance in the breast but if I didn't have the breast it would not jump to my bones bc I had no tissue in the breast. 

    thank you for validating my question barbe, he didn't need to be a jerk about it.  He told me I ask too many questions.  Oh I could go on but Im really trying to channel my energy towards positive health these days.

    xo

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009

    My one appointment with an onc that I demanded and finally got SEVEN months after my surgery sent a report back to my PCP saying "a very curious patient asking a lot of very good questions". Duh, yah!

    I didn't get any follow-up at all. Just been checking along my scars and under my arms. That's how I found these masses. Now bone scan, ultra sound and CT scan coming up. Hope it's just fat....like the rest of me...sigh. (Can fat be hard?) Because I didn't get radiation, it can't be fat necrosis. 

  • PS73
    PS73 Member Posts: 469
    edited November 2009

    ..sigh, I hear you!  Oh it's been said so many times that many people spend more time researching a new car than their cancer care but I think with all of the research outlets available to patients these days, more questions are being asked.  I had heard my onc was a 'patient and caring' dr, but it's times like these when individuals ask them questions and if they feel compromised, how they respond is a testament of their character.  I wouldn't say he is patient by any means.  ..a very good dr, yes, which is why I put up with him. 

    -My last scare was a calc and so of course they biopsied it. It was leftover sugery tissue.  Could be hopefully a similar situation for you since they thought originally thought it would be fat necrosis but it was from my surgery which was in May this year.  Maybe scar tissue? Good luck!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2009

    But why would it show up NOW? Waaaaaaa Cry I'm over 11 months out!

  • lexislove
    lexislove Member Posts: 2,645
    edited November 2009

    Hi ladies,

    I was diagnosed at 30, 32 now. I had a mastectomy on the cancer side...BUT I have decided NOT to get a mast on my healthy breast. This is my reasoning: even with a mastectomy breast tissue is still left so if cancer is gonna grow..its gonna grow. I don't have dense breast tissue, so I feel self exams would pick up something (it picked up my original BC).Im ER+, so taking Tamoxifen and probably an AI for years after, reduces the recurrence greatly. I have also adopted a more healthy lifestyle to help reduce my recurrence chances

    This of course is just me. We all have to do what feels comfortable.

    If I had the BRCA gene or was Triple negative? I would do a bilateral in a hearbeat. I asked my onc about my chances of developing a new BC in my healthy breast. He said 25-30% lifetime risk. Lifetime....I see that as 75-80% I won't.

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