Waiting, new LCIS after Reduction

babycakes82

It seems like we wait and wait.  That is the hardest part!  I had BR in March. I feel very blessed that I found this out as a result of the surgery, otherwise I would not have known.   I just had oncology appointment and have a 58% chance of developing BC.  MRI and mammo have been ok, which is wonderful news. The BS said 40% of patients with LCIS in her practice do PBM.   I can't get in tot he PS until August to see what my options are.  I am  leaning toward BPM at this time.  Since this is not BC I have had a hard time making a definative decision.  I also have an autoimmune disease and no doctor can tell what roll that plays in risk.  I do know that I get more sick and take longer to get over things.  I have had 6 surgeries over the last 5 years and other hospitalizations, mainly for dehydration.  Since I had a reduction, there are no markers, area defined. There were calcifications in both breast. I think about if I do get BC, how will my body handle the treatment...Of course these are all things I think about. Would love to hear from all of you and the process of decisions and reconstruction if you chose that. 

leaf

Hi there babycakes!  I didn't have PBMs (at least not yet.)  My BS said 'she didn't want to do any further surgery on me' and was the only BS in my network.  No matter what anyone else thinks, you're not going to have surgery if a surgeon won't do the surgery.  I wanted to do something, so I'll be finishing up my 5 years of tamoxifen this fall.

I do have several other issues.  After my classic  LCIS diagnosis in 2006,  I faithfully got a new diagnosis of something or other every 3-6 months for the next 3-4 years, for an additional 5 more surgeries, and around 9 new diagnoses including my LCIS. Luckily, that finally paused about 2 years ago.   I now have umm 3 autoimmune diseases,  all luckily mild (so far).

So I kind of landed where I am largely by 'default'.

babycakes82

You sure did!  Thank you for the info.  My BS did offer to do the surgery.  She has made it clear what the choices are, and they are very personal.  It would be nice to have a lettered mail Fed Ex to tell you what is in the future, but that won't happen.LOL.  She did say the 40% of her patients with LCIS decide on the PBM. I thought that was a high number. The good news is, I do have time to research, see what is out there and make the best choice for me.  I thank you so much for sharing and for all the women who posts.  It makes going through all this easier. I feel very blessed to have this "heads up" from my reduction surgery. Even though it can be frustrating at times.  I would much rather be able to make an educated decision.

Doreenanne

Babycakes82:  I had a breast reduction 9/10.  Found out from pathology report, have ALH.  Had to go see oncologist, he prescribed tamoxifen.  Started taking it mid Oct.  Told to alternate mamo and breast mri.  Went for breast mri end of december. it showed to suspicious areas.  Had to have 2 bioposies. Biopsies came back LCIS.  Well I was not happy about that.   My breast dr. suggested PBM.  Went for 2nd opionion in Mahattan. Dr. there also suggested PBM, 35% chance of getting cancer.  I decided to do it. My fear was that if  I did get cancer, would it be seen early enough because I am also extremely dense.  I have the surgery 4/18/11.  I feel great.  A lot of women on this forum told me the surgery is not as bad as you think and they were right.  Today I have piece of mind. I am very happy I dont have to think about having mamos and mri and have to worry every time i went for those tests.  I know the surgery is not for everyone, but it was the right thing for me.  Take your time to decide what you want to do.  Feel free to PM if you want to talk more.

Joanie207

Three years ago I began my journey with LCIS, ALH and ADH. I blogged along the way at www.breastcancermom.blogspot.com. I was one of those who wanted to take control and reduce my risk of breast cancer so I chose the PBM with DIEP reconstruction route. This was the right choice for me after months of research. Today I feel better than ever! I wish you the best as you move forward on your journey.

Joanie

babycakes82

Doreenanne,  thanks so much for the encouragement. This has certainly been a rollar coaster.  It is definatley interesting how a family can be divided about what to do. My husband and children are very supportive and say the decision is mine, while other family members think the surgery is too big a risk; I could die from surgery. I have not been able to get any doctor so far to say what they would or would not do, so I am glad you were able to get that advice for you.  I found out I am going to be a grandma at the end of December and this has made it even harder for me.  I won't be able to pick up the baby if I decide to go ahead with the surgery.  I would love all of it to be over before that time, but it would be a stretch. I am also an organizer, get it done kind of girl, so I want everything taken care of.  I love all my "ducks in a row". I do think about having all these tests and having my body exposed to more radiation.  Did you decide to do breast reconstruction and if so what did you choose?  I know I have time to make a decision.  It seems many women that have opted for this surgery come out with bc in the path report. I certainly think about that as well.  Thank you again so much and blessings to you.

babycakes82

Joanie, I went to your blog and it is phenomenal!  Thank you for putting so much info out there.  Of course I haven't had time to go through everything, but I will get that done.  The blog must have really taken quite a bit of time. I love the down to earth talk of what you were going through.  Easy enough for people who do not understand medical.  A journey it is and no two are alike.  We all have to put our big girl panties on and go forth!mLOL.  I know the DIEP had to be a very hard recovery for you.  I can't imagine being asleep for that many hours and then have the recovery.  I admire everyone for choosing the route best for them.

wolfe33

Hello, I too had a reduction...and then found LCIS.  I am so grateful that I had the reduction done!  I would have not known for years!  I was diag in Dec of '09 and am now 37.  The first mammo would have been a long way off for me.  Things happen for a reason I guess.

I did have BMX with immediate DIEP on June 1st of this year.  It has been 5 weeks today and I feel pretty good.  I am thrilled with the decision and it was not near as bad as I thought it would be...but it is serious.  It was 9 hour surgery and a good 3 weeks of real recovery time (not doing much and needing lots of help)...but now I feel free!  Everyone needs to do what feels right for them.  We are all different and I know for me.....I couldn't handle the watch and wait approach.  

Doreenanne

 babycakes82:  I had TE put in.  I'm having my exchange surgery 8/5/11 to silicone implants.