LCIS and Prophylactic Mastectomy

Mykidsmom

Congratulations Ann!!!!!!!!!!!!!!!!!!!!!1

beacon800

I am diagnosed with pleomorphic LCIS.  I underwent MRI which was negative for invasive.  I had bilateral excisional biopsies which found no invasive but a little more atypical lobular, a bunch of benign cysts, columnar cell changes.  That is all in my left breast.  My right has a prior dx of papilomatosis and the surgical biopsy on the right found nothing significant.

I am opting for PBM due to poor family history and high grade LCIS.  My only open question is whether to have sentinel node biopsy.  What is the consensus on this?  Please help!  Surgery coming soon!

Mary. 

Mykidsmom

Mary - I did not have pleomorphic LCIS, just the regular kind. And my surgeon and PS told me that, since I didn't have anything invasive, I didn't need the SNB. However, that being said, if they found something invasive, I would have been sorry. So perhaps you should, But I can't really say. What does your surgeon say?

BTW: The PBM was the best decision I ever made. I have never regretted it for a moment. Best wishes.- Jean

Anonymous

beacon800- when I was diagnosed with PLCIS from core biopsy and was given the choice for the next step,  I was told I could have lumpectomy and no SNB or if I had mastectomy they would have to do SNB.  She said that they would have to do SNB with mastectomy because once the breast is removed there is no way for them to do it after, if they were to have found invasive. So in my case they ended up finding invasive when they did the lumpectomy so now they have to do it no matter what.

Minnesota

Beacon,

I would definitely opt for the sentinel node biopsy. As MyKidsMom said, once they do the mastectomy, there's no going back, if they find something. I think that would also affect treatment - if you have positive nodes or not and how many. I think they'd then have to take all the nodes, if they can't follow the route that the sentinel node procedure would have provided. I have had this conversation with a surgeon, and their thinking is that even just a sentinel node biopsy could cause side-effects, so in the absence of confirmed cancer, it's an unnecessary risk. I had a sentinel node biopsy with no problems other than soreness, so if I have the other side done prophyactically, I will definitely have the SNB. And, for peace of mind.  

leaf

How do they know which is the sentinel node for a prophylactic mastectomy?

beacon800

Well, I a long talk with my surgeon and he felt we could go w/o sentinal node.  My work up has been quite exhaustive and I can only hope it will be ok.  I have chronic hives and I am concerned about swelling/lymphedema if we do sentinel.  I did talk to three oncologists who thought sentinel was not needed in this case. 

I am scared cause surgery is coming this week and did anyone else ever get frightened and maybe want to back out of prophalactic surgery?  I really don't want cancer, but I am also scared of surgery......angst!!

Mykidsmom

Beacon - It is totally normal to be scared and ready to back out. Just know that w/ modern pain meds and the on-Q and other treatments, the BMx is not as bad as we think. I was walking in the snow w/in three weeks after my surgery and back to doing most things by then. Hugs. - Jean

Stonebrook108

Beacon,

When I had my PBM for LCIS my BS always does a SNB. Because if their clear then your fine.I didn't notice any real pain from that area. I thought about changing my surgery to a later date but, then I thought I would have to go thru all the same emotions again. I'm glad I went thru with it as planned. The surgery isn't as bad as you think. Really no pain just a feeling of being sore and tightness. If you want send me a PM and I'll be glad to answer any questions. Best of luck

Ann

beacon800

Mykidsmom, what is an on-Q? 

Thanks for everyone's comments.  I am glad that others were also scared.  I am so glad to hear that things went well in general.  Thanks Ann for invitation for PM - I will be in touch.

Mary

Minnesota

Leaf,

You pose a very good question! Because my understanding is that they inject the cancerous area with dye and then it allows them to track back to the possibly affected nodes and test the first one. But if there is no identified cancer, which is the sentinel node?

leaf

Hi Minnesota.  I don't know if they inject the dye into whatever abnormality they find (such as calcification or abnormal architecture), even if its not suspicious. 

Of course, they can inject the dye into the area where they found LCIS (or whatever) in the LCIS breast, but unless they have found LCIS/atypia or some other abnormality via biopsy in both breasts it must be a very big guess.  It sounds like from the literature that some surgeons (at MD Anderson in this case) do recommend consideration of SNB for ILC, LCIS, or older women. http://www.ncbi.nlm.nih.gov/pubmed/16955504

In this study, they seem to say the dye was injected in the periareolar region. From April 1994 to November 1999, all patients undergoing PM had SLN biopsy after four quadrant periareolar injections of radiocolloid (450 mci) and blue dye (5 cc)...Over a 67-month period, 1,356 patients were mapped; 57 patients underwent PM in which 148 nodes (2.6 nodes per patient) were evaluated. Nodes were examined by routine H&E and CK-IHC staining. Two patients, neither of whom was found to have a cancer in the prophylactic mastectomy breast, were found to have a positive SLN by CK-IHC staining. Infiltrating carcinoma was discovered within the PM breasts of 2 additional patients. Sentinel lymph node biopsy was negative for malignancy by H&E as well as CK-IHC stains. No lymphedema has been detected in PM patients.http://www.ncbi.nlm.nih.gov/pubmed/11113434  I find it interesting that apparently between 2 and 3 nodes were removed/patient, but there was no lymphedema found.  (I don't know their followup period.)(emphasis mine).

Injecting the dye in the periareolar region seems sort of looking for a needle in a haystack.  Since they went all over my breast when they did my excision "You have extensive scar tissue", thus cutting the lymph vessels, I know that looking for a SNB in that breast for me would be a fruitless task.

upcreek

I made my decision and it is done.  Had BM's with immediate reconstruction on December 1st.

It is major surgery and yes I did have pain but I know that this was the right decision for me.

Thanks ladies for all your support and wealth of information regarding LCIS. 

Kimber

upcreek,

Really interested to hear your story and your experience.  I am doing this in January.  You can PM me if you want.  Thanks! 

Mykidsmom

Upcreek - I am so glad it is behind you!

An on-que is a device that administers local anesthetic around the area where the surgery is. My PS puts it in for thir first 48 hours and it pretty much keeps all pain at bay. After that, the initial surgery pain is already 48 hours old. It really helped me! I understand that a number of PS use the same device, but probably not all.

Best wishes ladies! - jean

beacon800

Update with good news!  I did the bilateral mx one week ago, no sentinel node removed.  I met with the surgeron yesterday and praise God, the pathology is clear - no cancer!  I was so happy I nearly wept.  

I am delaying recon, and maybe because of this I am having zero pain.  I have not even needed a Tylenol so far.  The generous posters on this forum are wonderful.  I was literally reading mail from members while in the presurgery check in area.  THank you, thank you, thank you!   I was so scared going in.  But an interesting thing happened.  The woman who was checking me into the surgery unit looked at my procedure and ask who my surgeon was.  I told her and she sid, "well, I don't usually mention my personal issues, but he did my own MX in May this year and it went perfect.  You are in the very best hands and I want you to know that."  This was so kind of her and immediately I felt calmer. 

 I am just resting an recovering now.  Will update later.

 Mary

Mykidsmom

(((Beacon)))) I am so glad that is behind you. Relax and enjoy the Holidays!

Stonebrook108

Beacon,

I'm so glad your doing so well. That was so nice of that woman to tell you her story and reassure you about the Dr.

In Jan. it will be one year ago that I had my PBM. I can't believe it. I'm still so glad I did and would not have change a thing. I was so lucky to have two fantastic Dr's who did a great job with my surgery. They made a world of differance with my recovery and I will be forever grateful to them. My BS is Dr. Marie Chen and my PS is Dr. Ron Israeli. God bless them.

I wish all of you a Happy Holiday and Happy and Healthy New Year

Ann

marie111

It's nice to be able to read your posts ! I was dx with ILC in May2009 and have since had a lumpectomy with clear margins and no node - done chemo and have now had a BMX with immediate reconstruction (TE) because of intensive LCIS found during MRI after dx. My surgery was last week and although everything went very well I can't help but feel I may have gone a little overboard with my decision - it is very drastic. It was recommended to me by my ONC and BS to have the Mx because of LCIS and strong family history (even though I tested neg. for BRCA) and also because I guess I have already developed ILC once so I followed their recommendations. But as I sit here now I feel very alone in my decision so that is why it's nice to find people who have walked the same road as me. Form reading your post you all seem very happy with your decision and that gives me hope. How long after your surgery did the tightness and numbness go away ? Are you now able to do everything you did before - no limitations ? I am a very active person and am worried this may change my life !

Thanks for your advice !

Marie

Mykidsmom

Marie - Did you just have your BMx last week, with tissue expanders? If so, then you are certainly still in the early stages of recovery. You will feel much better soon. I had my surgery a year ago and have never looked back. The relief from worry has been wonderful!!! I have no restrictions on my activity at all. That is not to say that the implants are totally the same as natural breasts. They are different, the two things that are most noticable to me are the numbness of the area and the fact that they get cold easier. I am also very active and neither of these has slowed me down. I make sure to cover up and stay warm and keep on moving. I hope you will find peace with your decision. I figure the BMx is a lot easier to deal w/ than the alternatives.

Take care and rest up. You will be back up and doing everything soon!

amybarts

Hi I had DCIS when i was 32 years old and now I just had a excisional biopsy  at 44 and they are trying to determine whether is is LCIS or DCIS. I feel so overwhelmed and this has been going on for twelve years. I really do not want to take tamoxifen because of all the side effects. I am having a breast MRI next week. The first time i had DCIS they removed the entire area and I did not do anything else. This time I am not so sure if I can do nothing again. Has anyone ever had DCIS and LCIS. Wondering if I should just consider the PBM I can't worry like this forever.

Mykidsmom

Amy - I can't help you w/ the DCIS plus LCIS, but I can tell you that I chose a PBM for LCIS and I am so glad I did. I couldn't deal w/ the worry. I am so sorry you are dealing w/ all this. Take care. - Jean

Stonebrook108

Amy,

Like Jean I too didn't want to worry about having LCIS the rest of my life so I had a PBM with one step implants. I'm so glad I did it. I have no regrets at all. Making the decision to have the surgery and then waiting to have the surgery is the worst part. After that the stress is gone and you can move forward. I had my surgery a year ago in Jan and feel great.

If you want to talk send me a private message.

Take care,

Ann

Peaches70

This is my first post in awhile. I was dx with ALH first, then LCIS in 2/2007 and have extremely dense breasts. The close monitoring resulted in another biopsy in August of that year. Originally, I thought I would go with BPMs, but since then, I've had clean tests. I'm doing 1/2 dose of Evista daily (only 1/2 due to the hot flashes). I put the whole idea of the surgery out of my head. However, my last MRI showed 2 areas of enhancement, so I will be going back in August for another. My breast surgeon seems to think that the surgery is inevitable, but isn't rushing me into it. I find myself contemplating this again, and not knowing what to do. I vacilate between denial, fear, and practicality.

Anne

Anonymous

Anne--as I'm sure you already know, MRIs tend to pick up everything. I had areas of enhancement on both of my first 2 MRIs--they recommended 6 month f/u-- they were clear on f/u US and mammo, and MRIs have been clear ever since, including my last one last month.  I'm coming up on 7 years in Sept. I finished my 5 years of tamoxifen and have been on Evista for over a year now. Praying you get good benign results soon. PM me if you'd like to chat.

anne

beacon800

Hello all,  I am updating at four months post surgery.  I am very happy with the outcome and have pretty much totally recovered.  In fact, I often forget the surgery happened til I take of my shirt!  I am very happy with my decision and can move my arms as much as before.  This forum was so supportive when I was facing that surgery and I thank you so much!

 I have a question for others who did this PBX without any sentinel node removed:  what do you guys do about blood draws and blood pressure measures?  Do you do them on your arm?  My surgeon says I could do it, but I am still scared.  What do you guys do???  I am delaying some blood work I need to do cause of my concerns.

Mykidsmom

Beacon - Okay, now I understand the question. My PS and BS told me that, since I didn't have anything done w/ my sentinel nodes or lymph glands, that I don't have to worry at all. I think we are just fine w/ bp measures and blood draws. Best wishes my dear! - Jean

mountainmom1

Hi,

I was just diagnosed with ALH in the left breast. I am concerned about more they haven't found since my breasts are so dense. I was curious if you had the lymph node biopsied or strictly the mastectomy. Also, do you think insurance would pay based on ALH as opposed to LCIS?

Thanks

Anonymous

mountainmom-- Perhaps you could ask to have an MRI due to the breast density. My old insurance  always paid for my MRIs in full, but I have higher risk due to combination of LCIS and family history of ILC; you'd have to call your insurance and check first to see if they would cover it. (actually my new insurance was only going to pay 10% until oncologist sent more medical documentation; now they are going to pay 90% of the MRI)  Are you also asking about whether or not they will cover mastectomies? (that I'm not sure about with just ALH).

Anne

leaf

It probably also varies from insurance company to insurance company.  I read one post from a woman with invasive breast cancer  undergoing chemotherapy who wanted a mastectomy, and her insurance company refused her a mastectomy.  (I don't know if it was a coding error, or what.)

At least in some states, if an insurance company pays for a mastectomy, they must also cover reconstruction, or at least some type of reconstruction.  Since this involves a lot of extra costs, some insurance companies may balk at this.

I just don't want you to have unexpected medical bills......