My decision for a PBM

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Mykidsmom
Mykidsmom Member Posts: 1,637
I saw the breast oncologist today and the information he provided was great. I really liked this one! Essentially, his recommendation is for a prophylactic bilateral breast mastectomy w/ reconstruction. He suggested that I take a little time, chose the right date and time that works for
me, possibly in February (after the Holidays). He had good reasons for this as a solution for me, actually the same ones that had me already thinking of going this direction. To be honest, it felt good to find out that I wasn't simply being over-reactive. I was being totally logical. The thinking is that my risk is very high and the likelihood of the close monitoring missing something too high for comfort. Better to do this procedure when and where I want to do it, than to have it forced on me in an emergency. I accept that, and agree w/ his logic. So I will start researching the best approaches for me. Thanks for being so supportive.  As you might imagine, this is coming with mixed emotions. - Jean

Comments

  • CAZ
    CAZ Member Posts: 678
    edited September 2008

    Hi Jean,

    I made the same decision so I wouldn't feel like bc was lurking behind each rock.  I won't say it wasn't without discomfort, but the mental relief has made it worth it for me.  I'm waiting on my exchange surgery in Nov.  From what I read, that should be quite a relief.

    Good luck with your decision.

    Carol(AZ)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Jean--I just sent you a PM.

    Anne

  • Kimber
    Kimber Member Posts: 384
    edited September 2008

    I am trying so hard to make this decision right now myself.  I am only 6 months into tamoxifen and monitoring, and I am a bag of nerves.  I am sick to my stomach, weepy and grouchy.  I feel like I am just waiting for the other shoe to drop, for cancer to make the decision for me.  I am only 44 and think I can handle the surgery a lot easier now than when/if it comes back invasive and then I also may have to endure chemo.  I don't know what to do!

  • abinneb
    abinneb Member Posts: 550
    edited September 2008

    Jean and Kimber

    My heart goes out to you both.  I am much the same as Carol - I chose prophy on left because I wanted to be as free as possible from future worry.  It was just a gut feeling, but I felt I would be dealing with worse if I let it alone.  I'm only 49 and never thought to have to face the decision.  But, for me, it was the right way to go.  The recon has not been without some issues to deal with, but nothing that would make me give up.  I have NO regrets and am confident I did the right thing - for ME.   It is a tough decision and I will pray that you will find peace with any decision you make.

    Amy

  • Kimber
    Kimber Member Posts: 384
    edited September 2008

    A friend is pushing me to make an appt for a second opinion at Sloane Kettering.  Has anyone done this and if so what was your experience.  I am trying my hardest to ignore the nagging in my gut and I just can't get it to stop.

  • abinneb
    abinneb Member Posts: 550
    edited September 2008

    Kimber

    It is a good idea to get a second opinion.  In my case, I was very happy with my surgeon and PS and much of what they told me matched all my research.  But if the nagging in your gut says second opinion, definately do it.  You don't want to regret not getting it later.  Do what feels right to you.  No matter what anyone else is telling you. 

    What exactly is the nagging about?  A decision you have already made or the one you're trying to make? 

    Amy

  • mtbmom
    mtbmom Member Posts: 135
    edited September 2008

    Kimber-I can sympathize.  I don't know where you live, (we have sloane Kettering here also), but after trying being just a number at MD Anderson, I asked my Radiologist, and she recommended a doc for me with Texas Oncology.  What a difference!  Because I am considered such high risk, I am seriously considering PM.  My husband has been very supportive and is for it just to ease my worries.  Tamox made me so ill I was ready to say just take everything!  My new onc put me on Fareston, and the difference has been amazing.  Supposedly all the same benefits as Tamox, but I am not getting the terrrible side effects.  So, i figure I'll wait it out for at least two more mammos, and then decide (last mammo I had to do another biopsy, and I'm already really tired of that routine!).  That gives me about a year to decide, and my onc agrees that I don't have to hurry the decision, but keep up monitoring and make the one that is best for me.  That's all we can do!!  good luck- Denise

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited September 2008

    Ann, Amy and Carol - Thanks for all the wise words. You are the ones that know.

    Kimber - I too am considering discussing my options w/ MD's at Sloan Kettering, actually my husband thinks I should have the procedure there. I am inclined to have the procedure near home w/ the breast surgeon that I have been working w/. I am pretty much decided to have reconstruction at the same time. I think that will make it easier, but the type of reconstruction is still up in the air. My next appointments will most likely be w/ the PS. It is sort of wierd to be going "all the way" before I have actually had bc, but I do think my oncologist is correct. I have all the right conditions to allow a serious problem to be there and be undedected. It's just not worth it. All information and personal considerations are welcome. I figure I need to work my way through all this emotionally before I will be settled enough to do the surgery. Thanks for being there. Good luck to everyone else in this situation@

  • Kimber
    Kimber Member Posts: 384
    edited September 2008

    I am having a better day today.  As you know, some are better than others.  My dilemma is do I just stick with monitoring, or do I get proactive and consider PBM.  I am so afraid of an invasive cancer developing.  I feel like I am just waiting for the other shoe to drop....but what if there is no other shoe???  I'm doing ok on tamoxifen and my last mammo in Aug was clear and I have an MRI scheduled for November, so I guess we are doing all we can do right now.......

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Kimber----I had that "waiting for the other shoe to drop" feeling for quite a while; until a friend made the suggestion to me to turn that around---instead, put that shoe on and dance!  It made me realize how much time I had been wasting worrying about something that may never happen. So I continue with my high risk surveillance (breast exams, mammos alternating with MRIs, US as needed) and will finish up my 5 years of with tamox in under 3 weeks. (I just had a clear mammo and US last week.)  After a short break, I will be starting on Evista.  I've made the decision to  not let LCIS or fear of invasive bc run my life. Don't get me wrong, I still have my moments of doubt, but overall I'm a lot more at peace now.

    So glad to hear your mammo was clear and that you're doing well with the tamox.

    Anne

  • mamaotis
    mamaotis Member Posts: 14
    edited October 2008

    Here's my long and rambling experience :o)

    I debated for about a year before going ahead with PBM.  I finally decided I had had enough of imaging and biopsies.  But, just as it was definitely right for me; it is a decision that is individual for each of us.

    "Mykidsmom"      I felt exactly as you stated in a previous post~I wanted to do this when and where I wanted to do it; then to have it forced on me in an emergency!  I wanted to do it at 52 instead of 62 or 72....and hopefully without chemo/radiation.  My breast surgeon said she always listens to the reasons someone gives when they say they want a prophylactic mastectomy.  I asked her if I had convinced her that I had good reasons..........and she said I didn't have to, she knew my history!  :o)

    After abnormal imaging; during a duct excision, due too persistent bloody discharge, I was found to have LCIS.  I started on tamoxifen, and the "close surveillance" scenario.  To me, it was just too stressful to "watch and wait".  I talked to my breast surgeon about PBM...and she agreed.  I tried to put it off a little ways...but she was concerned over some ongoing issues, including the ongoing discharge and a thickening in one breast and said I should go ahead and get it on her schedule.  Interesting......right before I had made the decision, I had my "routine" mammogram....which showed nothing suspicious.  About 2 months later, I had a pre-op MRI....which showed a "grade 4" probably malignant area in my left breast.........the side that had NOT had any issues at all.  I knew in my heart then, that I was definitely making the right decision for me. 

    Due to this new discovery, my surgeon decided to do add a left sentinel lymph node biopsy to my procedure....She had already scheduled me for a right sentinel lymph node biopsy due to her concerns that I might have something invasive on that side. 

    My BPM was August 15th......... frozen pathology was clear-as well as final path-of anything invasive.!   The area that showed up on the MRI in the left breast was an area of LCIS, a couple of areas of LCIS were found in both breasts, also...among other atypical cells, and a relatively rare (in a breast anyway) benign leiomyoma.   During surgery, the lymph nodes were significantly enlarged, and she was still very suspicious about something invasive...until final path came in; and we both celebrated!

    She said she thought I had made the right decision.  I work for a surgeon (different specialty :o) and he said the same thing~he really felt I had done the right thing.  So somehow I guess it helped to know two surgeons that I respect very much, thought it was exactly what I needed to do.

    I honestly felt, as well as my breast surgeon....that I would either end up with a mastectomy "piecemeal" due to biopsies.....or I could go ahead and just get it over with. 

    I think I knew from square one, that I would end up going this route~but I won't say it wasn't a bumpy one!  It is so much easier said than done; it's a little hard to wrap yourself around the idea of losing your breasts, no matter how "right" you think it is.  I did pretty well until that MRI right before surgery that showed the potential left breast issue.  I think that's because all along I had thought of it as prophylactic, and the potential of invasiveness, and that I might have to have chemo/radiation.....scared the bejeebers out of me!   But it also cemented in my mind, that I had made the right decision for me~

    BTW........for those who want to know; I am having reconstruction, but again....a decision we each have to make!  I had expanders put in a time of surgery, and am about halfway through my fills~

    The relief after surgery was immeasurable...and I have absolutely NO regrets; I would make the same decision all over again.

     But I agree with "abinneb" that it is a tough decision, and pray that each of you will find peace with the decision you make, there are no right or wrong answers!!

    Best wishes to all of you...wherever your journey takes you~  And, please ask any questions you may have!

    Nancy

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    It is amazing how strangers that you have never met and probably never will meet can make your day. Thanks so very much Nancy! So much of what you have said is so very true for me. I think I knew the moment my surgeon told me about the bad mammo in January and the bad MRI in May, and months before we found out about the LCIS, that I SO don't want to go the bc route. A PBM was already being discussed by my husband and myself, as well as with my family (who are all in the medical field, by the way). So in August the LCIS dx just started me more seriously going that direction in my brain, and then my oncologist confirmed that I should definitely plan on getting a PBM considering all that he thinks is going on in my breasts. As he said, I am most likely not going to avoid one, it is just a matter of time. Initially I had thought I would wait until March, but now I think I will schedule it as soon as I choose my breast surgeon, PS and reconstruction technique. I am meeting w/ PS's now and should have my ducks in a row by the end of the month. Then I think I will ask them to put me on the schedule. The other major decision I made today is to take an extended medical leave of absence. I am a hard worker and have worked just about every day of my life (except for 1 1/2 years for my twins and another 1 1/2 years for my younger son) - I need a break. I need time to get over all of this both emotionally and physically. So... there you have it. Many decisions have been made and a few more to be made. Thanks for being there to listen! - Jean

  • danix5
    danix5 Member Posts: 755
    edited October 2008

    I am a DCIS girl, but I can agree on the total relief and feeling of safety after the mastectomies.  I went the extra mile and chose surgical meno instead of taking tamox.  But again that is me.

    But as many trying to make the decision, if you are like me i searched this site for help.  I got it, I decided before the dr's that bilateral was what was best for me.  They decided it too, BUT AFTER ME!!! 

    Anyway, it was the hardest decision ever, but I am happy with it still almost 9 months out.

    Good luck to all and hope you can find peace with youself no matter what decisions you make!

    Dani

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    Dani - I love your picture. That will be me someday soon. Relaxing in the sun and all this behind me. - Jean

  • danix5
    danix5 Member Posts: 755
    edited October 2008

    Yes you are right there is fun after the storm!  But this picture is actually me in August 07, two months before the storm!

    Dani

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    So... it looks like my surgey will be in early December. Gulp!

  • leaf
    leaf Member Posts: 8,188
    edited October 2008

    From what I've read, they usually wait several months after diagnosis for LCIS if they want to do PBMs.  They don't want to rush you and want to make sure you are comfortable with your decision.

    Let us know how it goes, OK?

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited October 2008

    Leaf - I will certainly let everyone know. I was going to wait until March but found that I was much too focused on the surgery and worried about it. Waiting was driving me crazy. I think it is better to get it over with, remove my risk of BC and then move on. Though... I could still decide to wait, that is always an option.

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