Mastectomy for LCIS?
I'm hoping to get some opinions and/or suggestions! I had a very small section of DCIS removed a month ago, the pathology report indicated LCIS is present. I am waiting for the BRCA results back also before making my decision. The surgeon recommended Tamoxifin and a consultation with a radiologist for possibly radiation treatment. Lately, I have been strongly considering forgetting the Tam and radiation and going with a double mastectomy. It seems radical I guess, but I have been going through test and surgeries since January and really want to be done! I am 39, my mom passed away of BC 14 years ago. What would you do? Am I going too far in my thinking? Thank you a million times over for your help!! I love this website!
Michele
Comments
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Michele,
I found out in Nov. 08 about my LCIS dx. It's scared the hell out of me. The thought of having to take meds and having tests every 6 months was so stressfull. I chose a bil. mastectomy and I'm so glad I did. No more tests, no more biopsies, the stress is gone. The best part is when the BS said "I'll see you next year"
I also sent you a private message. Take care,
Ann
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Hi Michele,
I also had PBM in June 08 for LCIS. They found ALH and LCIS in both breasts after surgery. I did not have a strong family history, but I chose PBM because I felt it gave me peace. While it doesn't drop your risk to zero, it does lower it significantly (I was quoted 1-2%). The surgery itself wasn't as painful as I'd anticipated. I was home in 24 hours with 2 drains and an OnQ pain ball that irrigates the area with topical anesthetic for 3 days. I had tissue expanders placed at the time of surgery. The fills for the TEs where the most annoying and uncomfortable part to me, but they are over. I had exchange surgery in November and one implant replaced in April due to capsular contracture.
The fact that I'm relatively young (45), healthy, and have good insurance played a big roll in my decision process. I also have had tremendous support from family and friends. It would have been much harder without that.
Best of luck in your decision.
Carol(AZ)
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Hi penguin1 I sent you a private message.
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Michele - I am with Carol and Stonebrook, it certainly was the best route for me. But not for everyone. There are things you give up w/ a BMx. But you gain your sanity. Hugs. - Jean
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hi, just read your post and i am in a similar situation. i had br last year, lcis, and invasive lc. i now was diagnosed with lcis in other breast. i am contemplating the bilateral mastectomy also. my surgeon wants to do an excision first to see if there is any ca where the biopsy was. friends and family are supportive for the most part, but seem to be pushing me for the more conservative route. have you made a decision yet, and if you have, if you don't mind, why?
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I was diagnosd in 2005 with small LCIS in right breast.I cannot recall the exact size. However since I had had 2 prior eexcisions for non cancerous lumps it wa getting tiring. I was 71 years old and had had enough of worrying about breast cancer. I opted for a bilateral mastectomy. Both my surgeon and oncologist thought that it was not a bad idea. The onc. said that she did get some static about that at the breast conference prior to surgery but said that she would have chosen the same. As luck would have it a small LCIS showed up in the post op pathology report. Ihave beenon Arimidex since with absolutely no problems. I see my Onc. every 3 mos. and surgeon every 6 mos so feel that I am well looked after.Eileen P.S LCIS showed up in LEFT breast also!!!
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Hi Ilene-
Thank you so much for your response. What do you mean by "got some static"? Other doctors were opposed to the surgery? By small LCIS do you mean a small area of the 'abnormal' tissue? I'm still having trouble defining LCIS, even though a focal area showed up in my report. Is Armidex similar to Tamoxifin? Why do you need to be on it after the mastectomy? I truly appreciate your help and advice- the best info comes from women who have been there! Please PM if you'd like. Thank you again!
Michele
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LCIS is thought to be a marker for increased risk of breast cancer. In a small, undefined number of cases, LCIS may be a nonobligate precursor to breast cancer. (This means these spots of LCIS are not destined to become cancer.)
LCIS is a strange condition.
"Although most doctors don’t think that LCIS itself becomes breast cancer, about 25 percent of patients who have LCIS will develop breast cancer at some point in their lifetime. This increased risk applies to both breasts, regardless of which breast is affected with LCIS, and can manifest as invasive cancer in either the lobules or ducts."http://cancer.stanford.edu/breastcancer/lcis.html
It is frequently multicentric (occurs in several spots in the breast) and bilateral (occurs in both breasts). They know this because prior to about the 1990s, it was very common to treat LCIS with BPMs, so they had mastectomy specimens to examine.
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Thank you, Leaf... I just don't understand WHAT it is... is it abnormal tissue? abnormal cells? How is it abnormal- shaped differently? Why do some get it taken out and others don't feel the need? Mine was diagnosed as 'focal LCIS' in the three samples taken during an excisional surgery. The surgeon did not seem concerned, but I am. This was done at Sloan Kettering in NYC- I trust them with my life so maybe I am making more of it than I should be.
THanks again!
Michele
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Michelle,
We seem to be living parallel experiences. I am on the LCIS rollercoaster as well. Diagnosed in Nov. 08 with LCIS, ADH, ALH - have family history. Did not opt for BRCA testing - cancer not widespread - just mom and sister (who has LCIS & ALH). Decided to do vigilant follow-up until I had to have more biopsies. Well, that time has come sooner rather than later. Just had a core needle biopsy. I am still waiting for biopsy results. Because of the new need for a biopsy - after a good MRI and Mammogram (based on the reports) - I am leaning toward BM in the fall.Not my first choice, but I would rather do the BM than Tamoxifen and/or Radiation. It's a tough call.
Right after my LCIS diagnosis I went to Boston to see an oncologist in a high-risk breast center. She told me to wait until I got cancer, then she could work with me. One thing I have learned is that oncologists treat cancer and LCIS is technically not cancer. Surgeons operate and want to get it out/off. In the end, I realized that I have to do what feels right for me. The whole rollercoaster of waiting to see what might happen next is a ride I want to get off.
I am scared about having surgery and the follow-up tissue expansion, but the women on this site have been so supportive and inspirational that I know I can do it. If this biopsy comes back okay then I want to wait until Fall, when my daughter will be back in school and will have a regular schedule of activities that she will be able to focus on while I am recuperating. My 3 year old can spend a couple more days each week at daycare, which she loves. So, hopefully that choice will still be mine to make. Am waiting for my BS to get back from vacation to give me my results.
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penguin---LCIS is a stage 0, in-situ bc, which by definition means that there ARE cancerous cells contained within the lobules--they have NOT broken thru to the surrounding breast tissue.(non-invasive cancer of any other part of the body is still considered a "real cancer" by most docs, the controversy surrounding LCIS is very strange, a lot I think is just semantics----all my docs consider it breast cancer, just a non-invasive type) Most docs feel that they may never break thru (and therefore become invasive bc--my bs said very low risk, probably only 5%), so once it has been determined that there is nothing more serious in there along with the LCIS (DCIS or invasive bc), they feel it is OK to just live with it; and not necessary to "remove it all"--(which would be accomplished only by bilateral mastectomies as it is a multifocal, multicentric, bilateral disease). Many women have BPMs as they don't feel they can live with the risk and the constant monitoring and worry that can accompany it. There are others, like myself and Chinamom, that are living with it and doing high risk surveillance/ and preventative medications to try and prevent an invasive bc in the future. I was diagnosed with LCIS by microcalcifications on mammo almost 6 years ago, had wide excisional lumpectomy (to confirm the diagnosis; fortunately nothing invasive found), took tamoxifen for 5 years; I am still doing vigilant monitoring of alternating mammos with MRIs every 6 months with breast exams on the opposite 6 month schedule, so essentially am "seen" by some method every 3 months which gives me comfort that if something more serious were to happen, it would be found very early when it is more easily treated. I am now on Evista for further preventative care. This is my choice, and not a choice that everyone can live with comfortably, (I also have family history of ILC--mom) but it's a very personal decision, one we each have to make for ourselves ultimately. Fortunately, I haven't had to have any more biopsies over the past 5.5 years (despite a few suspicious findings on MRI), but I can honestly say I would probably opt for BPMS if I had to go that route all over again.
Anne
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Cancer is not a 'line in the sand' that someone can draw.
Its like calling someone 'old'. You can imagine pictures of people who are definitely old, and definitely not-old. But is someone who is 50 years old old? A 15 year old is probably old to a toddler, but not to an adult.
Some of the morphological features that say a cell is not absolutely normal include: an irregularly shaped nucleus, an irregularly shaped cell membrane. The nucleus may not be in the center of the cell. The cells are sometimes referred to as 'a bag of marbles' - the cells fill up the acini. I'm not a pathologist; there are other descriptors.
One pathologist may define a sample as LCIS and another pathologist disagree. But I think its easier to tell classical LCIS from invasive cancer - at least if the sample is big enough.
LCIS normally does not show up on mammogram, ultrasound, or clinical exam. Some people's LCIS does show up in 1 or more of these, but usually it doesn't. It may show up on MRI, but again, sometimes it doesn't.
So if the surgeon is doing surgery, (s)he can't tell where the LCIS spots are, so (s)he doesn't know what spots to remove.
Even if (s)he could see the LCIS spots, it doesn't really matter. Why? Because they think that if an LCIS woman develops invasive breast cancer, she usually doesn't develop it at the LCIS spot. Even when LCIS is unilateral (in one breast only), both breasts are at risk.
So if you get diagnosed with LCIS after an excisional biopsy, you don't need to get re-excised. If you get diagnosed with LCIS after a fine needle biopsy or a core biopsy, they often excise the area - not to remove the LCIS - but to help make sure there isn't something else going on in the breast (i.e. DCIS or invasive). When LCIS is found on biopsy, its often not at but is often adjacent to the lesion that prompted the biopsy.
LCIS is a weird disease.
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Just wanted to say that I was diagnosed in 2002 with LCIS when I had a lumpectomy for DCIS and so far, I'm doing just fine.
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Hey Chinamom,
I sent you a pm... we are on the same roller coaster I think.
Michele
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I just want to post this information to you all who don't know....just because you have a mastectomy doesn't mean that your cancer isn't going to come back. Mastectomy is not a cure for your cancer. I was diagnosed in 2000 and dealing with it every single year since then actually at times multiple times within the year.
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I was diagnosed with LCIS in the fall after a excisional biopsy. I have seen two surgeons who both recommend the wait and see plan, where I will have MRI and mammogram every six months. I don't want to go on Tamoxifen, and have been struggling with the decision about a bilateral mastectomy, just to ease my mind a bit. Both doctors said that it's my choice, and my body, of course, but it was not their recommendation to do the MBX. Any advice? Please?
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Unfortunately, almost everything about LCIS is controversial, to some degree or another.
One poster here said her breast surgeon told her that now the treatment of choice for LCIS is PBMs.
Other objective factors that may influence your decision include: if you have classical or pleomorphic LCIS (from your pathology report), and if you have a significant family history of breast or ovarian cancer, or a male with breast cancer. Pleomorphic LCIS is usually considered to be in a more aggressive category than classic LCIS. If you do have a BRCA mutation, or perhaps other unidentified breast cancer mutations, these mutations can contribute more to your breast cancer risk than LCIS. http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical
The NCI states re LCIS:Bilateral prophylactic mastectomy is sometimes considered an alternative approach for women at high risk for breast cancer. Many breast surgeons, however, now consider this to be an overly aggressive approach. Axillary lymph node dissection is not necessary in the management of LCIS.http://www.cancer.gov/cancertopics/pdq/treatment/breast/healthprofessional/page5
My breast surgeon, and my 2nd opinion at an NCI- certified cancer center did NOT recommend PBMs for me (in 2006 and 2007). I now have other unrelated medical conditions which may affect my risk for adverse effects of surgery and radiation (should I develop breast cancer in the future.)
Then, of course, there is the emotional aspect. No one but you can decide what the loss of breasts might mean to you, nor can they tell you whan relief from anxiety you may get from a PBM. No one but you can decide what a diagnosis of breast cancer would mean for you. If you are like this group of LCIS patients, less than half of them got breast cancer at any point in their life. http://jco.ascopubs.org/content/23/24/5534.long
I am NOT trying to tell you what to do. I would only hope you would consider all of your options carefully, and act not from impulse but from what your heart and head say is right for you. Look at both the risks and benefits of each choice. It is a difficult choice because there is limited data.
However, it is a much easier situation than, say, a person who has an aggressive invasive cancer who also has big risk factors for adverse effects of a proposed treatment, or who, for whatever reason, cannot get the recommended treatment. You do have choices, and, depending on your circumstances, one may be better or worse for you.
I would NOT make my choice on the basis of how many women who post here who have made one choice or another. LCIS is an unusual condition, and it is known that people who make more aggressive choices or have more emotional baggage tend to post more. If you got satisfactory service from a store, would you be very apt to post your experience of that store? You would probably be more likely to post your experience if you had a very good or very bad experience.
You want this decision to be right for YOU, not right for anyone else. It is YOU who will be living with your decision. There is not a 'right' or 'wrong' choice in the matter.
I know this is difficult. No matter which choice you make, you will find support, at least from me.
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Coco,
One suggestion I have is if you have a breast center at your hospital, schedule an appointment with the nurse navigator. I had 2 breast surgeons and 1 medical oncologist agree what the best course of action was for me, but I got caught up in opinions and comments from others. The nurse navigator helped me sift through all of the info and just allowed me to talk through everything. Everybody's case is different and it's important to listen to your doctors, get as much information as possible, and then come to the decision that's best for you. The RN I met with had no vested interest in the outcome. She just wanted to help me do what was best for me.
Best wishes to you on this journey. -
cocoriley, my advice may be a little surprising to some, but here it is. Unless you have a medical issue that contraindicates Tamox, I think you should give it a try. I was adament that I would not take that crap and decided on PBM. I don't regret the PBM for one second, but due to cicrumstances, I ended up with tamoxifen anyway. Found I have a clotting gene mutuation that's beng addressed w/daily aspirin, but other than that, I've had no problems at all on tamoxifen (it's been almost a month, so that's not to say I won't get slammed later).
So if you're on the fence, why not give tamox a try? You can always stop.
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cocoriley-------I would agree with Crescent, why not give tamox a try and see how you do----you may tolerate it very well. (many actually do, you just hear the negative reports here because this is where people come for support (as they should!). Scroll up and read my old post (of 5/09)----I did tamox for 5 years and now take evista and tolerate both well with very minimal SEs.
anne
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Leaf- I truly respect and admire your articulate and reasonable advise. Thanks for your input.
I now find myself in this medical quagmire. In 2007 I was dx with dcis and had lumpectomy which revealed small ILC with PLCIS in margins. I suspect the orginal path report misdx and had PLCIS which was commonly IDed as DCIS 5 yrs ago. and it was more common 5 yrs ago just to wait and see with LCIS, so I consider myself lucky it was IDed as DCIS. Anyway, Had rads and opted out of tamoxifen. Now, after suspicious mammo found PLCIS in biopsy, same breast. Tumor board and several opinions later recommend Mx. Of course, it is up to me, incisional biopsy, single mx, or BMX, since the experts don't have a clue as to what is the best course of action. I am in the medical field and it just astounds me how clueless they are to this condition. But the technology has only allowed them to accurately identify this in just the last few years. I go back and forth almost daily as to what I should do. I have scheduled a single mx for 5/17/12 and will probably do the tamoxifen this time. But it just feels like a toss of the dice. Sigh. -
There isn't hardly any data concerning people with LCIS *plus* other more serious breast cancers (DCIS + ILC), but for at least for LCIS (probably classic LCIS), they do know the breast cancer risk is bilateral. Several authors opine, at least for LCIS alone, that the monitoring or treatment should be bilateral. You may have very important individual circumstances that lead you to a unilateral treatment. I would encourage you to choose the treatment that is best for YOU and YOUR circumstances.
This Li et al study found the subsequent bc risk between the two breasts is not equal but substantial, 7.3/1000 vs 5.2/1000 http://onlinelibrary.wiley.com/doi/10.1002/cncr.21864/full whereas the Chuba et al study found 56% vs 46% between the two breasts. http://www.ncbi.nlm.nih.gov/pubmed?term=Chuba LCIS
These are difficult decisions, and I understand completely that you go back and forth almost daily what to do. Thinking of you. It is a difficult decision what to do when, to start with, there isn't much data.
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Leaf- thanks again for your most articulate response to my previous post and also for your thoughts.
p>Breast oncologist quoted my risk of contra lateral BC at about 33% or a 67% chance of not getting it. Frankly, they dont know, if i do get it then it is 100%, right ? But anyway, taking the tamoxifen is the management to lower that risk. So I don't look at this a unilateral treatment. Just a different way to manage risk in each breast. I totally understand why many do not want to deal with the risk, the worry, the biopsies, etc. and go with the BMX. I am not a worrier and generally a minimalist especially when it comes to medicine. But i am also a practical person so if lefty starts giving me trouble off she comes. But for now each time I run through my choices ,the UMX feels like the right course for me. At this point I have no evidence that I have invasive disease but since most experts agree that Pleomorphic LCIS should be treated like DCIS and I have already had rads 5 yrs ago in this breast, righty goes. Of course,there is always a chance that post surgical path reports may change this story but I dont worry about that now. I have learned that 90% of everything we worry about never happens. I will save my energy for more positive thoughts.
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Leaf, you have done your homework, and you are so right about the research. I had LCIS extending to the ducts 15 years ago and decided to have bilateral w/ immediate TRAM reconstruction. One free flap and the other tunneled. I got alot of negative input from some MD's but I had a great docs who supported my decision. I have never looked back. You are so right it is YOUR decision and not for everyone. It was a difficult call but it was right for ME.
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"since most experts agree that Pleomorphic LCIS should be treated like DCIS "
Where have you seen/heard this? Experts don't agree with anything LCIS, so imagine how controversial PLCIS is. I was never told to treat it like DCIS. Never read that anywhere either. Actually, maybe once, but certainly no consensus.
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Agree with Crescent here. I have never heard of radiation as a standard of care for PLCIS as it would be in DCIS. I only read a paper from one (and only one) doctor who speculated that radiation might be appropriate and he had no studies to back that up.
If you are making a decision based on this alone, I would get a second opinion. (((hugs)))
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I had 4 suspicious spots in my "good" breast, one spot that my BS was really concerned aboutn (I think he knew it was LCIS). I didn't even have it biopsied. He recommended BMX… prior to that he talked me out of the BMX but once he saw something on the MRI he recommended removing both. It ended up being a small amount of LCIS.
I'm not saying you should get a BMX but I would get another opinion and understand the rational if the other BS for BMX or MX.
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There is some research that LCIS concurrent with DCIS substantially increases the risk of recurrence. http://onlinelibrary.wiley.com/doi/10.1002/cncr.24166/pdf.
I had both LCIS and DCIS - a 7 cm area of DCIS. I went to four different doctors and received an even split on whether to have the BMX. The articles on the risk with both LCIS and DCIS helped me decide. Had a BMX a year ago and no regrets. It may not be 100 percent that I won't get bc again, but 98-99 percent chance it won't recur is a lot better than the other alternatives.
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I had a PBMX with 600 cc alloderm implants nipple sparring. I was diagnosed with ALH. I had my PBMX age 44. I had my surgery 4 months after my younger sister died of mets BC 2/14/2011. She was 42. I do not regret my decision and my right breast was scarred from a biopsy anyways. I also had dense breasts that are very high RISKfor BC.
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I just joined this morning and I have never participated in a chat room/blog before today. So, I'm new at this. However, I think it is SO important to have these discussions. Knowledge is power, right?
My annual mammogram showed microcalcifications on left side, needle-core biopsy showed ALH. I had the ALH excised and then, after 2 1/2 months of research, I decided to have the skin-sparing BMX (didn't keep the nipples because some tissue is left with the nipples). That's when they found the LCIS and more ALH on the left (we thought the excision got it all) and ALH with ductular extension on the right, which we didn't know was there prior to the BMX pathology reports. Because we caught it early, I do not have to do chemo/radiation/meds. I am really glad that I did the BMX.
What I liked most about my BS and PS was that it was all about me and what I wanted. The breast health navigator, who was wonderful, said having control of the disease is important for some people (me!). I just wanted to do all that I could do to prevent invasive cancer and have as much peace as possible. I was blasted by several friends for being too extreme for even thinking about the BMX, but I am totally convinced I did the right thing for me. My oncologist said that he thought I would have ended up with BC on both sides. However, it is definitely a personal decision.
I've talked to several women, who have had a single MX and they have indicated that they wished they had gone ahead and done a BMX. My cousin (79) had the same thing that I did, but she waited and it turned invasive. She then had a single MX without reconstruction. She said it's annoying to have just one breast--it's weird to go without a bra with only one breast still there. She wishes she had taken them both off for her comfort and peace of mind, too.
If you choose a single MX with reconstruction, they will be able to make your other breast look similar, though not perfect. With me doing a BMX the reconstructed breasts look pretty much the same. I wish you the best.
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