Tomixifen and Surveillance vs. Double Masectomy

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Debbie903
Debbie903 Member Posts: 1

Hello ladies,

I was diagnosed this past Dec. wiith LCIS and so have to decide what to do now.

I've been looking for statistics to tell me what gives me better odds at living a long life.

Surveillance and tomixifen (which also includes the possibility of later being diagnosed

with cancer and the ensuing treatment) or double masectomy which also does not

preclude a subsequent diagnosis of breast cancer.  Any info would be so appreciated.

Debbie903

Comments

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

    Debbie-----I was diagnosed almost 5 and a half years ago. I had a lumpectomy and took tamoxifen for 5 years, fortunately I tolerated it very well with minmal SEs.  I am closely monitored with digital mammos alternating every 6 months with MRI, breast exams every 6 months on the opposite schedule, so I'm essentially "seen" every 3 months by some method. All my doctors felt BPMs were too drastic for my particular situation, even with family history (mom had ILC).  I think it boils down to personal choice--whatever choice you make  has to be right for your own situation. There is a lot of controversy with LCIS, but one thing that is for certain, is there is no rush since it is non-invasive, you can take your time doing your research, getting 2nd opinions if you want, and making decisions. I revisit my options from time to time, but basically I'm OK living with the high risk on a day to day basis. Test time is a bit stressful, yet it also offers a sense a comfort that I'm being watched closely and if anything does develop, it will be caught and treated early. PM me if you'd like to talk at all.

    Anne

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited March 2009

    Debbie,

    I was dx with LCIS in Nov 08 and couldn't deal with the stress on all the testing and the meds. so I had a PBM. with direct implants and 7 weeks later feel great.  I also had many calcifications and the dr's said that they might not see a cancer in one of them.

     It's a very hard choice since it's not "real" cancer. But, it was real enough for me.  Feel free to email me at Stonebrook108@aol.com.

    Awb, glad to hear that your doing well.

    Take care ladies,

    Ann

  • ritabook
    ritabook Member Posts: 1
    edited March 2009

    I had breast reduction surgery on Feb. 12 and SOP is to send it to pathology.  Well, I found out on Friday they found LCIS.  How did you all find the LCIS?  If it doesn't show up on a mammogram, how did you get diagnosed?  I guess I feel lucky that they found it by happenstance, but now I'm not quite sure what's next.  I'm on a quest for information here so I'd appreciate any info on websites with good information.  Thanks everyone!
    Rita

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

    rita--mine was first discovered by suspicious microcalcifications on mammo, then diagnosed by stereotactic core biopsy, then confirmed by wide excisional biopsy (lumpectomy).  I was lucky it was seen, as it generally isn't on mammo, US or MRI; it's usually an incidental finding  like in your situation. If you google LCIS, a bunch of different websites will come up---be prepared for a lot of controversy, even among the well known and respected agencies. (ACS, NHI, NCCN, etc....) You can read above what my journey has been or feel free to PM me if you'd like. Now that I'm done with tamoxifen, I've started on Evista for further prevention.

    Anne

  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    Yes, awb is right.  There is hardly anything that is NOT controversial about LCIS - even the name is controversial.

    While several women here have been recommended to get PBMs, my breast surgeon refused to do PBMs on me.  When I went to a Major Institution, they also did not recommend PBMs.  They also advised not to follow me with MRIs because 'I had too much scar tissue' from my solitary excision.

    It is also controversial how much LCIS puts you at risk for breast cancer.  I have been quoted figures that range from 10%to 85%.  Probably an average is  30 or 40%.  I do not think we know whether or not a bad family history of breast cancer adds to this risk.  The LCIS risk is almost certainly less than if you are BRCA1 or BRCA2 positive.

    I think that before, say the early 1990s, it was routine to give PBMs to women with LCIS.  Many breast surgeons stopped doing this after they found they could treat early breast cancer with lumpectomy and radiation.

    It took me a few years to figure out how little we know about breast cancer risk - even for the normal, everyday woman without any history of breast cancer.

    Here are some websites

    http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

    http://caonline.amcancersoc.org/cgi/content/full/57/2/75

    Here is a recent abstract with more numbers. http://www.ncbi.nlm.nih.gov/pubmed/19213563

    In this recent study, they found LCIS and/or atypia did NOT increase the risk of breast cancer in  women >= 70 years old. http://www.ncbi.nlm.nih.gov/pubmed/18979140

  • aquariusgi
    aquariusgi Member Posts: 26
    edited March 2009

    Rita,

    Much like yourself, I found my LCIS by chance. My doctor thought I was anxious about the BC subject since my mother had passed from it. She mostly thought I was paranoid. Via Mammogram and Ultra sound then biopsy on the same day....I was told I should consult with an oncologist. I would say take out what should be there, at least then you feel like your restarting the clock. I hated the feeling og having something inside me that wasn't suppose to be there and I didn't know how fast it was growing. 

  • taraleec
    taraleec Member Posts: 236
    edited March 2009

    Hi Debbie903, I sent you a Private Message.

  • GALNXDOR222
    GALNXDOR222 Member Posts: 3
    edited March 2009

    Debbie I am sitting right where you are right now.  I have been diagnosed with LCIS back in Dec after a mass was removed from my breast. After seeing the surgeon and the Oncologist I was faced with a decision.  Do nothing but monitor, take tamoxifin or have a PB.  I had my appt yesterday and he looked shocked that I picked PB.  He tried to gently change my mind but not coming out and doing so.  He said I had a better chance getting diabetes (I'm 200 lbs) then I have getting cancer.  He believes I should take Tamox. He now wants me to see another Oncologist.  I just want it done and over with.  I've had enough sleepless nights over this.  If you want to talk about this further send me a private message

  • taraleec
    taraleec Member Posts: 236
    edited March 2009

    GALNXDOR222, I sent you a private message. Thanks

  • boyzbeebs
    boyzbeebs Member Posts: 17
    edited March 2009

    I was diagnosed on 8/25/08 with lobular in the left breast and was told it had to come off by my breast surgeon.  They found it through a steriotatic biopsy.  I decided to have the right one off as well.  I know have expanders in and will be getting them out next week.  Yeah.  I also had to have chemo b/c my tumor was 2 inches.  My oncologist wants to put me on Tamoxifen, but I am not sure if I want them.

    Any suggestions about Tamoxifen?  Please send a personal e-mail.

    Thanks,

    Nancy

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Debbie - Like Stonebrook I opted for a BM w/ the LCIS dx plus other risk factors. Like Leaf I have heard risk factors ranging from 30% to 85%. There are no guarantees in life. It is all about how you want to live your life. For me it was a no brainer to get a BM and my oncologist concurred. For others it is the opposite. You have to go w/ your gut. Sometimes I think having a choice makes it more difficult. Best wishes. - Jean

  • CAZ
    CAZ Member Posts: 678
    edited March 2009

    My reasons for having PBM for LCIS included:

    • The waiting for test results every 3 months would make me crazy/depressed/postal
    • I'm relatively young (44 at DX) and in good shape for surgery
    • I have good insurance at the moment
    • I'm scared witless about chemo and radiation
    • I had fibrocystic lumpy breasts, so each new lump would make me c/d/p (see above)

     It's a very personal choice.  I felt I was strong enough to be a cancer avoider, but didn't know if I was strong enough to be a cancer survivor.  Wishing you peace in whatever you choose.

    Carol(AZ)

  • chris38
    chris38 Member Posts: 32
    edited March 2009

    Hi Debbie,

    My name is Christine.  I was diagnosed in Jan 08 with LCIS.  I am in the same situation.  Please let me know if you came up with anything.  I am 38 and do not want to remove my breasts.  I was told at sloan to do PBM or close montioing.  I dont get the montioring if LCIS is not picked up by mammos and mris.  Please share anything you have.

    Thanks,

    Christine

  • chris38
    chris38 Member Posts: 32
    edited March 2009

    Hi Carol,

    Can you share some good and bad points about PBM.  I am 38 and have LCIS.  I cant stand knowing i have a window of opputuinty to do something before it becomes invasive.  I am just scared.  My PS told me two do tissue expanders with implants.  I am scared about the numbess and the whole experience.  Can you help me.

    Christine

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Chris - My heart goes out to you. This is a tough decision and particularly so since you are so young. I can tell you that the PBMs are doable and not really that difficult if you chose that route. But LCIS does not always move on to invasive bc, so you can usually chose the close monitoring plus tamoxofin route as well.

    Some of the pluses of the PBMs are:

    You don't have to worry anymore (risk drops significantly, but does not go away entirely)

    You don't have to go in every three months for close monitoring

    You don't have to have mammo's and MRI's every six months (alternating)

    You don't have to take tamoxofin

    You can move on from this dx

    You can chose your ultimate breast size :)

    Some of the minues are:

    You have to undergo major surgery

    You lose your ability to nurse a child

    You lose nipple sensation

    Your chest area is numb

    You cannot change your mind later

    The reconstruction takes a while to complete

    So... it is a mix either way. You have to decide which is best for you. For me it was a no brainer, but I am 54 and had other situations to consider. Good luck w/ your decision. Remember there is no wrong decision.

  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    As Mykidsmom said, there is no right answer for everyone.

    There is no huge rush to make a decision.   The 'usual figures' for LCIS risk are 30-40% LIFETIME, not 30-40% in the next 2 years, particularly if they have had an excision which found nothing worse.

    Most of the risk for LCIS women is NOT thought to be at the LCIS found at the core biopsy.  Once you have found LCIS in a biopsy, most of the risk is to BOTH breasts, even if there are no other spots of LCIS.  They don't know what causes most of the risk.  Its a strange condition.

    There is no evidence that women who have LCIS and nothing worse have more risk if they find more spots of LCIS.  So, as far as I know, it doesn't matter if they can't detect more LCIS.

    **If** an LCIS woman does get breast cancer, then most of the time she will get DCIS or IDC.  There is about a 40% chance she will get ILC.  This is a larger chance than if she didn't have LCIS and nothing worse.  For the general population, about 10-15% of breast cancers will be ILC.

    Each facility seems to monitor LCIS differently.  Many LCIS women  who have not had PBMs on this board get MRIs.  I was not offered that choice.  At the Major Institution where I got a consult, they said their routine screening for LCIS women was annual mammograms and biannual clinical exams.  At this institution, they are offered tamoxifen.

    I think another possible risk for having PBMs is the finite but small risk of having lymphedema.  I don't know the incidence.  I don't know if women who get PBMs choose to only have blood draws and blood pressure measurements from their legs for the rest of their life....

  • chris38
    chris38 Member Posts: 32
    edited March 2009

    Hi Again, its Christine.  Thanks for replying back.  In regrads to the numbess is it unbearable.  Does it get less.  Are you able to sleep at night.  Can you tell be more about it.

    Thanks,

    Christine

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Christine - The numbness is totally bearable, just a little wierd. And it gets less noticable over time. I think it just becomes the new "normal." I have a scar from my c-section that is also numb, but I never notice it. The chest area is much larger though, so certainly I am more aware of it. But it does not bother me too much. Usually I am not even aware that it is numb. I am very much able to sleep at night. I still have tissue expanders and they are hard, so I can't sleep on my stomach yet, but that should improve after I get my pernament implants.

    The biggest disadvantage to chosing to go w/ a BM is that you cannot reverse the decision. So you have to know it is right for you. That's the hardest part.

    Leaf - Since all I had was LCIS, I did not need my nodes bx'd. They were careful not to take my blood pressure from my arm when I was in the hospital, but I understand that my risk of lymphedema and problems w/ bp and blood draws is minimal at this point. So I can do my bp and blood draws from my arm.

     Best wishes. - Jean

  • Stonebrook108
    Stonebrook108 Member Posts: 237
    edited March 2009

    Hi Chris,

    I too had a bil mast. because of LCIS. I found out in Nov. 08 and had mine on 1/9/09 and 10 weeks later feel great. I had immedite implants put in not expanders so I'm ahead of the game.

    I do still have numbness but, it's getting better. I have no regrets with my decision. I have peace of mind knowing I don't have to worry every six months waiting for test results.

    I'ts a BIG decision so take your time. Best of luck.

    Ann 

  • leaf
    leaf Member Posts: 8,188
    edited March 2009

    Thank you for the info about the blood pressure and blood draws, Jean!!!  Because of my other issues (scleroderma), I'm actually considering BPMs, because radiation wouldn't be an option for me.

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

    Christine-----LCIS is not usually found by mammo, US or MRI, but it can be--mine was. (mammo) I'm fortunate that my breasts are not dense, so the mammos are easy to read. I do high risk surveillance--MRIs alternating with mammos every 6 months, breast exams on the opposite 6 months; and I just finished my 5 years of tamoxifen recently, which I tolerated well with very minimal SEs. So the route I've chosen is also "doable"; not for everyone, but is OK for me.

    The goal of the close monitoring is actually not to try and find more LCIS-----LCIS is known to be multifocal, multicentric and bilateral, which means if you have it, it's probably widespread throughout both breasts. (having multiple areas of it versus having only one area doesn't change the situation).  The goal is to detect any DCIS or invasive bc at its' earliest stages, when it can be treated more easily.

    The other posters are correct---there is no rush with LCIS-----you can take your time to research, get 2nd opinions if you choose, make decisions. I still revisit my options from time to time, and it's been over 5 years.  These decisions are difficult and very personal, but whatever you decide, will be the right decision for you.

    Anne

  • Mykidsmom
    Mykidsmom Member Posts: 1,637
    edited March 2009

    Leaf - I am sorry that you are considering BPM's - I have always respected and admired you and Anne for your decisions to go w/ the close monitoring. I know that you have both provided so much support and information to others trying to decide what to do w/ this darn dx. And I appreciated the fact that there were others that could speak for the close monitoring route. I am also very sorry that you have to deal w/ scleroderma! Many hugs are going your way!!!

    Anne - I still have my fingers and toes crossed for you. Best wishes for great results from your MRI.

    Stonebrook - When did you say your next surgery was? Are you listed in the April reconstruction thread? It was great meeting you and Anne over the weekend! Take care.

    Christine - As you can see, there are some of us that have chosed different paths w/ this dx. Don't let anyone rush you into a decision. Take your time, review your options (as you are doing here) and talk it over w/ your loved ones. Best wishes! - Jean

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