Tomixifen and Surveillance vs. Double Masectomy

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

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

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. 

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

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

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)

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

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....

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

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.

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