Considering PBM

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  • nosurrender
    nosurrender Member Posts: 2,019
    edited October 2007

    "Silly"??? NO WAY!

    This is serious stuff. And as I said to Carrie once, I am glad that she caught a break in that she found hers while it was still small enough to get RID OF completely!

    If we all could only have been given that gift.

    My first cancer was dx'd in 2001. It was ductal and it started out as DCIS then broke out of the duct and became invasive. So chemo and rads for me.

    My second cancer is Lobular. That is a sneaky cancer because it is SO HARD to find. And usually when you do find it the tumor is very large.

    So if you have the chance to stop it in its tracks you should do everything you can.

    GOOD LUCK to everyone here!!!

    Love you Carrie!

  • Peaches70
    Peaches70 Member Posts: 210
    edited November 2007

    Saw my BS today. She was pretty definite that she sees me as a very high risk, and that she would agree that PBMs are a good idea.

    So, assuming that everything goes okay with my next mammo (Feb) and I don't have to do anything at that time, I may be doing this next summer. In the meantime, I guess I need to find a plastic surgeon who does I-GAP and who is in my network and geographic area.

    Anne

  • ophelia
    ophelia Member Posts: 337
    edited November 2007

    Hi Anne, I have a similar dx to yours and my bs has also said to me that she feels my best option is a proph. bilat mast.  I have met w/ Dr. Robert Allen in NY and am waiting for a surgical date to do I-Gap.  They're telling me they might get me in for the 2nd week of Jan.  Dr. Allen has offices in NY, New Orl., and S. Carolina.  He pioneered the DIEP procedure and than the Gap procedures. There are only a few others that will do a simultaneous I-Gap.  Dr. Delacroce and Dr. Sullivan at the Breast center in New Orls. and Dr. Craigie and Dr. Kline in S. Carolina.  These 2 are affliated w/ Dr. Allen.  There is alot of info on these procedures on Dr. Allen's website diepflap.com. I live in Mass so NY is not too far for me to travel but I was prepared to travel to S. Carolina if I had to.  Most women who have done these procedures have had to travel.   

    There is a lady that I've spoken to on the breast reconstruction section. She had the procedure done w/ Dr. Allen and she's very happy with her results. Her name is Felicia,she's a sweatheart, I'm sure if you post there she'll respond. 

    Hope this helps.    Take care...

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    it's interesting how different surgeons have such different opinions on how to best treat LCIS.  My surgeon (along with my onc, gyn, and pcp) felt BPMs were much too drastic for my situation (LCIS and family history) and recommended tamoxifen and close monitoring. (which I've been doing for 4 years, so far, so good).

  • ophelia
    ophelia Member Posts: 337
    edited November 2007

    Hi awb,

    My dx in 05 was ADH borderline DCIS, 2 biopsies to get that dx. In 2007 dx  two more biopsies and dx w/ LCIS and ALH.  I have very dense breasts which make it difficult to rely on mamo.  I've  had 2 ultrasounds because of density issues, mamo's every 6 months, (even though they are virtually useless for me), and I've been on tamoxifin for 2 years.  Drs not really sure if it's helping.  My options are PBM or watchful waiting w/ MRI's.   I'm going w/ my gut that eventually if I choose to do the waiting game I'll be dx w/ something invasive.  I asked my bs, who I respect and trust, if she was faced w/ my dx would she be considering PBM and her response is most definetly.  I believe this is my best option. God willing, I'd rather try to prevent it now than treat it later and hope that it was caught early enough. I have met w/ other bs  for 2nd opinion and was given the same advise. My Onc. feels that either  option is reasonable the decision is up to me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    maria---these decisions are so difficult and so very personal.  I'm sending prayers for both you and peaches.  I'm in the same situation and will probably come to you two and others for support someday.  I know if any invasive is ever found, I will optfor bilat. mastectomies and DIEP recon; I just can't seem to wrap my mind around the idea of BPMs at this time in my life.  Fortunately, I don't have breast density, the radiologist said my mammos are clear and easy to read, so that's a plus for early detection.

  • angelaw
    angelaw Member Posts: 44
    edited November 2007

    Hi: I had a spot that felt funny on my left breast that we were watching especially because i was high risk (at the time just family history).  Kept a close eye and nothing showed on the mamo or numerous ultra sounds.  Then I found out I was brca2 and had pbm in July 07. The biopsy showed lcis in the spot i could feel that didn't show up on tests.  It bothers me to have "something" (precancer, precurser, or whatever!) growing that can't be seen on our testing proceedures.  The pbm was very easy compared to my sister's experience (stage II found at her YEARLY exam). I have no regrets and feel my choice was right for me. good luck.

  • Peaches70
    Peaches70 Member Posts: 210
    edited November 2007

    I checked with Dr. Allen and Levine's office about insurance and found that it would be out-of-network. For me, that means paying 20% of the fees, which I am sure would be substantial. I'm not at all sure that I can afford that. Anybody know how much that might entail?

  • angelaw
    angelaw Member Posts: 44
    edited November 2007

    Hi: My surgeries (double masectomy and reconstruction) ran about $150,000.  It was in-network so the out-of-pocket was $1,750.00.  good luck.

  • Peaches70
    Peaches70 Member Posts: 210
    edited November 2007

    Phew! 20% of 150,000 would be $30,000! No way can I afford that! I don't know if I can do this now. I really don't want implants, and I don't have enough belly fat for two breasts.

    Thanks for the info anyway.

    Maria, did you get an estimate of your surgery expenses?

  • ophelia
    ophelia Member Posts: 337
    edited November 2007

    Peaches, I have an HMO and I only have an office co-pay $20 per office visit. No co-pay for hospital/surgery. I had to battle with them a bit because they don't like to go out of plan but because there is no doctor qualified to do simultaneous I-Gap in my area, they allowed me to go out of plan with the same coverage as in plan. I don't know what the expenses are because the surgeon is contracting directly with Ins. carrier.  I'm sure I'll find out eventually.  You may want to speak w/ Dr's office  again and ask what  their fees are. Also If they understand that you'll be paying out of pocket maybe they can suggest payment arrangements. I found Dr. Allen's S. Carolina staff to be more helpful than New York.  I don't know where you are from but is New Orleans or S. Carolina also out of plan for you?

    Don't give in until you've made some more phone calls maybe there's a way.   Good Luck!!!!   

  • csp
    csp Member Posts: 2,765
    edited December 2007

    I'm glad I read this thread. I just started on Evista 2 weeks ago

    and was feeling a little more confident that i was doing something besides worry, 6mo. mammo and biopsy. No one is on board about me wanting a PBM not my surgeon or the onc or some of my family.

      My GP, who's wife died of BC  is the only one that felt like I do.

    I backed down. They made me feel like I was over reacting. I had a

    MRI and it came back good. For some reason I was thinking no more scary junk was going to be found again.

     Carrie

  • Peaches70
    Peaches70 Member Posts: 210
    edited December 2007

    I was reviewing this thread and realized that on my initial post, I left out one of the bigger reasons I am considering this -- the dread I feel about the pain of the mammos and biopsies. Both of them hurt not only my poor girls, but also my neck, which has arthritis and degenerative disks. The MRIs are not so bad,but I have chronic sinus congestion, which means that by the end, I can barely breathe and my face blows up like a balloon. When I factor this in and consider going through this every six months for the rest of my life, it makes the surgery seem much more bearable.

    Thanks, Ophelia/Maria, for your tips. I will pursue the approval to go to Drs. Allen and Levine in NY. (I'm in NJ)

    Anne

  • mamaotis
    mamaotis Member Posts: 14
    edited December 2007

    Hi all~

    I've been on the emotional roller coaster alot of you have been talking about~  In the last four months, I've had an abnormal mammogram (grade 4/probably malignant--stereotactic bx came back benign). Then after experiencing persistent spontaneous bloody nipple discharge I was referred to a breast oncologist who scheduled me for a duct excision.  Prior to that she wanted me to have an MRI to see if anything else was going on (MRI showed a mass with a washout/kinetic curve suggesting malignancy) u/s guided core needle bx was ordered--although almost not done, as there were so many cysts that they couldn't be sure they were getting the right one--path came back benign.  She proceeded with the ductal excision and the path showed ALH and LCIS.  I am currently awaiting genetic testing results; I decided to proceed with them as much of the hx on both sides of my parents is unknown; however my mom died at 45 from cancer..."something female" is all I know.

    My current plan is the five year plan/tamoxifen (which I just started this week), CBE every six months, alternating MRI and mammogram every six months. 

    I am seriously contemplating BPM as I told my breast oncologist/surgeon that I did NOT like the possibility of reliving the last four months over and over the rest of my life~ She admitted it was a real possibility too, as she said "I will not be sitting on anything the least bit suspicious".

    It is SO great to have found this forum; to see that I'm not alone in my thoughts, concerns.  I've already heard all the same thinking you have...it's not "really cancer"...."why would you have a mastectomy if you don't have to?"  etc., etc....

    I just feel like I'm waiting on the other shoe to drop!  I know LCIS is not that common, and again to have found this forum is wonderful!  I wish the best to ALL of us~

    Nancy

  • leaf
    leaf Member Posts: 8,188
    edited December 2007

    Welcome to the forum, Nancy.



    I know what you mean about having the support you need. My gyn is very supportive, but she wouldn't be the one doing the surgery. My breast surgeon is 'not interested in doing any more surgery on me.'



    When I told my GP I was suspicious of my radiologists, he replied, 'Its really hard at diagnosing bc.' Well, yes, I know that. But if your experience with breast radiologists was:





    a) Having a wire insertion with a pain score of at least 8, and they told you not to move a muscle, and if you told them you were in pain you would cry, and if you cried you would move, and this went on for at least 1 hour. He never asked if I was in pain. At the next biopsy, I pulled out of the mammo because I had been so traumatized.



    b) After 3 consecutive ultrasounds, and 2 mammos, I was told they may have 'mislabeled' the ultrasound as scar tissue. I also had 2 visits to the breast surgeon who did the breast excision in question. So I could have had totally obvious ILC seen under ultrasound for 9 months. The biopsy was read as benign, but NO ONE ever said 'I'm sorry.' or even 'I'm sorry you are in this situation', which is NOT admitting guilt. I NEVER want to go through that kind of scare again.



    c) On my last mammo (Sept 2007), the radiologist says "to put you back on track I recommend next mammos next Sept (2008.)" Well that would be 18 months for my R breast.



    When I was first diagnosed, a person handed me a flyer for a support group for DCIS. Well, I don't have DCIS, and I know there are too few women out there with LCIS for there to be an in-person support group in my area. I am SO glad we have our own forum.



    I know there was one woman with stage IIIb bc,with small children, who said of PBM, that "If she knew then what she knows now, she would have them off in a heartbeat." Best of luck to all of us!

    leaf

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2007

    Nancy----I just sent you a PM. I've been living with high risk from LCIS and famly history for over 4 years now (I'm on tamoxifen and am very closely monitored by breast exams, mammos alternating with MRIs every 6 months, and recently had US as well for follow up to MRI findings which the rad/onc/gyn all agreed are false findings.), so I know the "roller coaster" of emotions well. Sometimes I feel that I am "waiting for the other shoe to drop"; I've decided while living my life in the meantime, I've got to try to put on the shoe and dance! (in other words, just try not to worry and go out and enjoy life). It's not easy, but I'm really trying.

    Anne 

  • jacki45
    jacki45 Member Posts: 4
    edited December 2007

    Hi there!

    I had a mastectomy for Invasive Lobular Breast Cancer in March. Two small tumours and lots of LCIS. No lymph node spread so no chemo or rads. Am on Tamoxifen and Zoladex inj.

    My remaining breast is full of LCIS and although a recent mammogram showed that it had not worsened since original diagnosis in Feb, still at high risk of another tumour.

    I have opted for a prophylactic mastectomy on my right breast. I'm finding it hard to deal with some people thinking I'm mad to go through major surgery again if there's 'no need'! But I want to give myself the best chance I can and not wait until I'm much old and less healthy before I need to have a mastectomy -- if at all.

    Plus I feel all lop-sided now and hate wearing my prosthesis and don't want recon.

    Although my decision is perhaps easier than those of you who haven't been diagnosed with bc and HAVE to have an op, I say do what makes YOU feel most comfortable. Your breasts, your life!!!!

    Thinking of you --

    Jacki xx

  • Lolita
    Lolita Member Posts: 231
    edited December 2007

    Hello:

    I had LCIS and opted for a prophylactic mastectomy on my right breast as well as the breast where there was invasive cancer. One of the reasons I did so is what Jacki wrote-I wanted to have the operation now, at 42, when I am healthy and in shape, rather than several years down the road when it would be much harder. Also, I didn't believe that they would find new invasive cancers in time. At this point, I've been able to forgo radiation and chemotherapy, but that may not have been the case next time.



    I don't think that you ever stop worrying though. At this point, I'm worried about my results on the genetic tests and whether I have ovarian cancer. I have to figure out how to take some time out from all this intense decision making and all these health issues. I've made more decisions about my body in the last month and a half than in previous 41 years.

  • ophelia
    ophelia Member Posts: 337
    edited December 2007

    Hi Lolita, I'm scheduled for PBM on Jan. 14. I was so certain that I was making the right decision a few months back.  But now I find that I am second guessing myself.  I think it's the fear getting to me. I've had 4 biopsies in 2 years several ultrasounds and MRI. DX with ADH borderline DCIS, LCIS, ALH, and extremely dense breasts. My surgeon has suggested the PBM. Onc. says she'll support either surgery or watchful waiting. I'am 43 and my mom was diagnosed at 69.  I hope by having this surgery I'll be able to avoid an invasive cancer which I fear would not be found early enough for treatments to help. It is just so hard to make this decision when your not being told you have to do it because of a dx.  I'm glad to hear others have done it and don't have regrets.  I'll be glad to have it behind me.
    Best of luck with your genetic testing. 

    Take care.

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