LCIS and Prophylactic Mastectomy

I am happy I did it. It isn't that painful. I just thought the whole time I was recovering how much worse it would be if I had cancer. I agree with Ann that drugs are more invasive. That is just my opinion. You won't need a lymph node dissection with LCIS only and I have heard that is the worst part. The drains were so easily removed I didn't feel a thing. PM me if you have any questions. I had ALH. One pathologist during my many biopsy's called it LCIS. I still am not convinced there is a difference.

Ann - I am totally there with all the responses you have received. I also was dx w/ LCIS and ALH. I am also not clear that there is much difference between the two, for me it seemed to be a different pathologist, not a different result. Anyhow, I had a BM on December 16 w/ placement of  tissue expanders and have not been sorry. The drains are more a pain in the neck than anything else, and I had mine removed pretty quickly (8 days post-op). I would definitely discuss having an on-Q - it takes the edge off the first two days and really reduces the use of narcotics. There are a number of threads going on what to do/take w/ you to the hospital. Best pieces of advice I received were: stool softener/laxitive (for the narcotics), ear plugs and eye shades (for the noice and activity) and cell phone and doctor's phone numbers (just in case). The surgery is not that bad and the TE's are kind of interesting - you get to watch your foobs grow all over again. Good luck and PM me if you want to "talk." - Jean

Ann- I am confused? If you only have LCIS and that is not cancer, only a precursor, why do the lymph node biopsy?

Karen, you're right about the axillary dissection causing the extra pain, and it does carry a risk for lymphedema. The sentinel node biopsy is to make sure the cancer hasn't spread to the lymph nodes. Usually if it's negative, the cancer has not spread, but sometimes that's not the case. I was one of the "lucky" ones with a false negative. 

I did find some research http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=314428on LCIS and ALH and and there is some difference in the lobular lesions upon pathology. They are not cancer or even considered precancer, they are "A non-obligate precursor for subsequent development of invasive cancer." Both are considered Lobular Neoplasm. I understand that different pathologists can have different opinions.

I was diagnosed with LCIS, ALH and ADH in November '08. Had expected to do a PBM in 2009. However yesterday I met with a doc at Dana-Farber for a second opinion and she very clearly told me that was not recommended. She spent alot of time telling me all the different things I could die from that are not cancer. She emphasized that LCIS is not cancer and will never be cancer, just a marker for cancer. She told me to go home and wait and see. I felt bullied by her. She would not listen to me. When I mentioned some research that came out in October '08 about LCIS possibly being a precursor to invasive lobular cancer she told me to get off the internet. She also said that she had never seen a patient with LCIS who had chosen to do a PBM.

Well, I cried. More from frustration than anything else. I couldn't believe just how rude she was. She certainly has a bias and only wants to see patients with cancer. I just don't want to be one of them if I can help it. I had wrapped my mind around the PBM and was feeling prepared for that. I was still a bit uncertain about the reconstruction since the PS in my area do reconstruction more as a side to their enhancement plastic surgery and not as a full-time job. In the end she did give me the name and number of a PS in Boston who does reconstruction regularly, so I guess the abuse and belittling was worth it. Although I wish I had passed on this appt and just called to get a recommendation for a PS.

Sorry to vent here, but I thought you all might understand.

 Here's more:

She told me that "carcinoma" in LCIS was 'just a word'. She wouldn't give me a percentage for my risk. She said it was about 30% based on LCIS and that my family history, no births, ALH, ADH, etc were insignificant once you have LCIS. I guess I am still fuming......

Karen - I think the reason they would want to do a SNB when a mastectomy is done is that sometimes cancers show up in the removed tissues - cancers that they didn't know were there. It is difficult, if not impossible, to do the SNB after mastectomy.

There are women here on this site who have gone through mastectomies for DCIS only to find micro-invasions once pathology is done.  I have even read of women who had breast reductions and cancer was found in the tissue.

I have had partial mastectomies/lumpectomies for both DCIS and LCIS (there was the nodule where it was found that they could remove).  The DCIS is all gone, the LCIS and ALH is probably still there as there is no way of knowing if what was removed was it or if there's more. Research says there's probably more and it's bi-lateral. It upped my risk of invasive to the point that I will be on Tamoxifen for 5 years and will have stepped-up screening for years to come. I'm holding off any and all thoughts of mastectomy for as long as humanly possible.

China - the oncologist I am seeing now has a special interest in risk.  She has been wonderful (the onc I saw after DCIS wasn't so hot & I refused to go back & let things slide til summer & teh new dx). She went through my path reports for LCIS and ALH, discussed the outcomes, and what my risk levels are and will be through time.  I specifically asked the radiologist who had done all of my biopsies who/where she recommended. My main concern was that I would be ignored because I wasn't in the throes of heavy-duty cancer. Fortunately, it has all worked out.  My surgeon also knows her and says she's great.  

I hope you are able to find a new doctor, one who listens and wants to take care of you and your medical issues. Ask around, look at the websites for all of the doctors, and don't feel like you have to stay with someone you don't respect and who doesn't respect you.

take care..Pam 

Hi Ann,

Sounds like you made a decision based on a lot of research that you have done.  Your thoughts definitely follow mine when I made the decision to do PBM and like I have said I don't regret it for a minute.  If that's your decision- you go girl!  I wake up every morning knowing that I have less of a risk for breast cancer than the average female.  It's a great feeling knowing that I reduced my breast cancer odds by about 97%.  Let us know how you are doing and I will keep you in my prayers.

Jezza- what a blessing you had when you decided to do your PBM.  My oncology surgeon said she ought to do a study on those of us that decided for ourselves to do PBM instead of taking tamoxifen and waiting because she said every time she has a patient that comes in and wants to do PBM for LCIS that the pathology comes back confirming that the PBM should have been done due to other findings in the tissue.  

Lois 

I have a friend I work with who was diagnose with DCIS about a year ago. She was given the 3 options we have been talking about and she refuses to even talk about a mastectomy or Tamox. I respect that. At first I was kinda trying to convince her to have one because her risk is rather high with a family history and very large breasts (Who knows whats lurking in the rest of her tissue) but I could tell she was very uncomfortable about the thought of it. It isn't for everyone. Maybe something is telling her that she would have too many complications. Maybe she will just decide one day to do it. I knew right away and there was no doubt this was what I wanted to do. I was very fortunate that I knew my surgeon well and she wanted me to do it. I asked her what she would do and she said she will have one the first abnormal mammogram she gets. I wouldn't go to a surgeon who tried to talk me out of or into anything. I don't think that is their job (unless they know you very well)

Hi Chinamom - your consult sounds like mine in July 2007 at a major NCI certified cancer center (not Dana-Farber).  You can see how I felt from the thread http://community.breastcancer.org/forum/47/topic/653988?page=1#idx_28  .  (Bc.org didn't have an LCIS forum at that time.)  They also lost all record of this consult that I paid several hundred dollars out of pocket. 

I ended up going to my local oncologist.

As Pam said, I think if you are going to see a doc for some time, its important to get somebody that makes you feel comfortable.  You want to carefully select the docs who are on 'Your Team'.  I've 'fired' several who I don't want on My Team.

Chinamom - I chose the PBM and had my surgery 2 1/2 weeks ago. My oncologist strongly suggested it in my situation. I say go for another opinion if you are not comfortable w/ the one you have received. Your doctors should listen to you. LCIS is not to be taking lightly. Tamoxofin and close monitoring are not offered for all women. Good luck. - Jean

62192----I was diagnosed with LCIS in Sept 2003 by suspicious microcalcifications on mammo, then confirmed by lumpectomy. I am followed by high risk surveillance--digital mammos alternating every 6 months with MRIs, US when needed and frequent breast exams--and I just finished my 5 years of tamoxifen a few months ago.  Fortunately, my SEs were mild and very manageable, mostly hot flashes. My oncologist didn't push the tamox, he left the decision up to me; actually it was my breast surgeon that was really pushing for it and had said the BPMs were too drastic  for my situation. (and my oncologist, gyn and pcp all agreed).  That was even with a family history of ILC--my mom--and a lifetime risk of invasive bc of at least 37%. (it most likely is more like 55% for me, but no one truly knows the exact risk level with LCIS). Fortunately, I've done very well and haven't had  to undergo any more breast biopsies or surgeries (despite a few suspicious MRI findings).  I may be facing mastectomies sometime in my life, but like you, am not ready to go there yet without a very compelling reason to do so!!!!!  PBMs and tamox are both very personal decisions, ones we all have to make for ourselves (hopefully with our medical teams help and support) and be able to live with comfortably. Just be sure to have a yearly transvaginal US to monitor both the uterine lining and the ovaries if you go on tamox. PM me if you'd like with questions, I've been dealing with this a long time!

Anne

I, too, have been struggling with the decision.  I have been having biopsies and bad mammos since I was 25 - I am now 44.  The last year has been especially bad with the diagnosis of LCIS and various other things not quite as "bad", and a lumpectomy,  a seroma,  tamoxifen, and most recently a TORTUROUS needle localization and surgical biopsy.  And I am NOT a wimp.  I am extremely dense and my mammos are hard to read.  I have an MRI coming up in Feb.  If this one calls for another biopsy, I am pretty sure I will elect to have PBM's.  The tamoxifen is very tolerable for me, but the stress of monitoring is horrible.  Not to mention, it is very hard to explain to people who do not understand that much about breast cancer.  How do you explain it? 

 ChinaMom - my new oncologist told me the same thing - "we are watching you so carefully that if something invasive does pop up, it will be early, so you will be treated and cured".  I don't want to be "treated and cured"!!! I watched my mother and my sister go through all of that.  You also said you haven't given birth (I suspect by your username that you are an adoptive mother) - We have adopted two beautiful children after undergoing years of treatment - HORMONES.   Combined with my strong immediate family history, including a maternal aunt, and my above mentioned sister (age 46) and mother, (although I tested negative for the gene) and a host of other risk factors, I feel sure I will get breast cancer (because apparently lobular-"carcinoma"-in-situ is not cancer....)  I DO NOT want CANCER to make the decision for me to remove my breast(s).  I WANT THAT DECISION TO BE MADE BY ME.  And if I can do that in a preventative way, then so be it.  Some people may see it as extreme, but I can't help it.  I had a spot on my leg removed that had all the characteristics of melanoma, however it was perfectly round.  A dermatologist recommended a wide excision to be sure.  So I have a huge chunk out of my leg, but I have no cancer.  Breasts are just fat and tissue, right?  Wouldn't you remove another part of your body if it threatened to turn into a "worse" cancer?

After my lumpectomy turned out to have clear margins, my surgeon said to me "so, does this convince you to hang onto your girls for a little while longer???"  and I cannot get that  "little while longer" part out of my head.....

Just my two cents ladies.  XO

Kimber 

ChinaMom and Kimber,

My insurance company found my risk high enough to pay for PBM after my DX of LCIS in the left breast.  They ended up finding LCIS and ALH in both.  My 2nd opinion with a BS at Mayo was wonderful.  He objectively covered the options, and patiently answered my questions.  There was no hesitation when I opted for PBM, but they did want me to meet with the PS first.  That only makes sense.

I wish you both all the fortitude and peace you can muster.

Carol(AZ)