To excise or to not excise: the ? for newly diagnosed LCIS

First, welcome to our group!  Wish you wouldn't have to be here - I wouldn't wish LCIS/PLCIS on anyone, but this is the ONLY place I've found other LCIS/PLCIS women.

Hey- I hadn't heard about LCIS before my 'suspicious calcifications' routine mammo.   Before this routine mammo, I thought that breast cancer only happened to women who ignored their lumps.  And I'm a pharmacist. See what I knew.

Hmmmm....I am a B cup, and after my excision, there was a dimple in my breast that may have been as big as 1-2 tablespoonfulls at most, over an area of maybe 3 inches.  It completely filled in over the next 9-12 months, so now, except for the 1 inch scar (which is quite faded), it looks quite normal.  A year after my excision, I had another biopsy, and I found out the surgeon had gone ALL over my breast - I had extensive scar tissue inches away from the 'lesion of concern'.  (My LCIS was picked up as an incidental finding to 'suspicious calcifications'.) A 2nd opinion later said I had 'too much scar tissue to do an MRI'.

Your experience may differ, of course.  I think there are others here who have had larger excisions than I had.

There is controversy.  There is this thread from about 1.5 years ago. http://community.breastcancer.org/forum/95/topic/702563?page=2#idx_41

The American Cancer Society paper opined "Excision of LN is unnecessary provided that: 1) careful radiographic-pathologic correlation is performed; and 2) strict histologic criteria are adhered to when making the diagnosis. Close radiologic and clinical follow-up is adequate."http://www.ncbi.nlm.nih.gov/pubmed/18348299

Other studies can give other opinions.  The figures differ.  I think the range I've seen in various papers for finding 'something worse' after an initial core biopsy of LCIS and nothing worse ranged from about ?5-30%? (off the top of my head.)

More recently, 8% of this group found 'something worse'. http://www.ncbi.nlm.nih.gov/pubmed/18517282

This paper was 8-19% http://www.ncbi.nlm.nih.gov/pubmed/17460455

(There are lots of papers in Pubmed, at least tens, maybe hundreds on this subject. http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed)

LCIS women are more prone than average to get invasive lobular  carcinoma (ILC).  Another nickname of ILC is 'the sneaky one' because it can be difficult to diagnose or detect.  It is usually slower growing though....

As far as 2nd opinions from prominent places - well I do encourage them, but get as many as you need.  I was not happy with mine, but I'm glad I did it - the misinformation and uncertainty  did inspire me to look more at journals and learn.  (For example, my 2nd opinion at an NCI certified major university started out (nurse practitioner) with 'Here we use the Gail model for breast cancer risk.'  and I finished her sentence with 'which specifically excludes patients with LCIS.' http://www.cancer.gov/bcrisktool/)

But prediction of breast cancer is a VERY complex thing - there is a LOT of uncertainty.  http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

Do your research.  Get as many 2nd opinions as you need.  Then make your decision, and don't look back.

Oh and as far as the scar, I have 2 areas that were excised and the surgeon did a great job on my fairly small breast.  I would say about an inch in 1 area and a little less around the nipple area.  It has been since April and the areas seem to be looking much better to me.  Hope you feel better about the excisional now.

I just wanted to introduce myself on this site to get involved in the dialog.  This is the first time, I have participated in any online forum for anything--although I am on the computer all day.  I am usually too busy for that. I had an excisional biopsy for a large # of non-suspicious calcifications in August, which found LCIS. The reason I had an excision straight off was because I am so small breasted that they could not do a needle procedure.  About 10 years before that I had a biopsy which found atypical hyperplasia. The AH risks were not really explained to me in great detail, and I didn't worry too much but have alwasy gotten regular mammos etc and even self referred for a screening MRI.  This time, in part, because the dr seemed to be encouraging me to go on Tamox, I took this much more seriously, researched much on the Internet, learned a lot and totally freaked out.  My life stopped for several weeks.  I could not eat.  I learned everything about every protective drug, about the newest mastectomy techniques--everything.  I am a planner and wanted to understand all my options going forward. I have a marketing/writing business that works for medical equipment cos and do a lot of work in cancer and breast cancer arenas--so I did know a lot but also had a lot to learn.  Apparently, the LCIS must have been small because it was discovered when removed during the biopsy with clean margins.I am now in a high risk program at a large university hospital (columbia) and know my breast surgeon from business dealings.  He is considered very good and is truly a compassionate, wonderful person on the human level. i plan to go on linical trials for vitamin D (being tested for decreasing breast density) for the next year while I visit varous drs--oncs, obgyn (for their take on Tamox), surgeon to find out about skin-sparing PMB (for way in the future) and do develop an overall plan.  Being in touch with the people on this board is part of that plan.  I am now much less afraid of the diagnosis (I actually went on antidepressants, which is not something I really do or in line with my self image, but I needed help.  They worked)  I have a fairly good understanding of the "sicence" and clinical aspects of LCIS, but some of the boards confused and scared me. It seemed a lot of people were having PBM for this condition--which didn't make a lot of sense, unless i did not understand the context of their decisions.  Maybe they had had multiple biopsies, large areas of LVIS, problems getting clean margins or even cancer along with the LCIS.  FINALLY QUESTIONS:  Would a normal person in my situation even consider a PBM?  Do most LCIS sufferers take Tamox (scares me more than the surgery, i think)?  Do most people watch and wait and go on with their lives?  A major issue for me is that i have small, dense breasts with extensive calcifications that make me very hard to image thru a mammo.

Leaf, Thank you for your response.  And, yes, I would agree that other people's decisions should not drive my own. However, every every dr and medical site has their biases, and I am trying to get a sense of whether going on Tamox is protocol for a LCIS diagnosis.  that is the impression I had from my dr although he certainly was not pushing it against my will.

When I had a biopsy with atypia 10 years ago, I was told basically that this put me at a very slightly elevated risk and if I wanted to, I could see a breast specialist once a year in addition to having an annual  mammo. No one mentioned any drugs like Tamox.  This time, the Dr. told me that the LCIS was really no more risk that I had before with atypia (not sure that that is true) and said my lifetime risk of cancer was about 30 percent.  I left feeling grateful I didn't have cancer.  He advised me that I might consider Tamox, and I said I doubted I would.  Then, when I looked up information on the Internet and found these forums where this diagnosis had really changed people's lives and they had mastectomies etc., I realized that I probably didn't understand the seriousness of the condition and got overly upset. So I'm still trying to get a perspective on the situation and the implications for my life.  Time will tell for some of this--if I have a lot more biopsies, it might affect my decision.  Any way, I will be on the site and looking for and sharing information.  BTW, I also posted my inital introduction on its own string after I posted here. Thank you again.

jjp-

yes, I am in the same situation as you. LCIS in Sept. BS and onc. downplayed it, but did suggest tamox. I said I would think about it. Meanwhile, I am waiting for a second opinion appt. at Sloan. (April). I PM ed some others with similar dx-really freaked me out what measures some take. Am I not taking this seriously enough either? I am a worrier and tend to be overly anxious because I've already over obsessed about it with friends, family, colleagues, etc. They all say- "but you don't have BC and probably never will" So then I feel foolish and now I don't talk about it. Just worry to myself, read these disscusion boards etc. I like reading what leaf has to say- very calming and informative.

Hi Lori51

We are both going through very much the same thing. Did you notice that I said I had myself put on anti-depressants I was so upset, which really, really helped me. Your experience when you tell others is exactly what mine has been.  Occasionally, it is the opposite, they don't understand and think I need to be treated for breast cancer and are very upset. At this point, I think I have made my peace with the diagnosis to some extent.  But, I do plan to talk to many doctors etc and get opinions about what are my best options.  Likely I will go on Tamox or Relox during the next few years.  I also want to learn about what a mastectomy would involve and try to get comfortable with what would hopefully be my worst case scenerio only if things get a lot worse.

What are you getting a second opinion on at Sloan--what to do about LCIS or on your actual biopsy results?  I am also in the New York area I went to Columbia/ NY Presbyterian because I know the breast surgeon there.  They also seem to have a good high risk program.

This board seems to have a lot of good information, especially Leaf.

Lori--I was diagnosed with LCIS 6 years ago. I was given the standard 3 options of close monitoring, tamoxifen, or BPMs. All my docs (onc/pcp/gyn/rad/bs) felt BPMs too drastic a choice, even with my family history of bc (mom had ILC); I chose high risk surveillance which I am still doing. I have digital mammos alternating with MRIs every 6 months, breast exams on the opposite 6 months, I took tamoxifen for 5 years with minimal SEs (mostly hot flashes), and now I take Evista for further preventative measures. Recently I asked my oncologist if I was on the right track with all this---his response was "unless the worry is keeping you awake at night or it's affecting your quality of life, you could get BPMs". But it's not and it doesn't, so for now I will continue with what I'm doing. If I were to have another issue requiring biopsy, I might reconsider. But I'm not at that point yet. It's a very personal decision, one we each have to ultimately make for ourselves.Please feel free to PM me if you'd lilke to talk.

Anne

Paula---the risk of endometrial cancer from tamox is very low, less than 1%, and both tamox and evista are very good for your bones.

Mary--sometimes it takes a few months for your body to adjust to the medication. I never had any nausea or dizziness from tamox, sorry to hear that. I tolerated it very well for 5 years. Now I take evista and am doing fine on that as well. I continue with high risk surveillance of mammos and MRIs. Just got approved for genetic testing today from my insurance company.

anne

Hi Paula7

I think we can trade a lot of useful information.

To clarify, I can have and do have mammos.  However, I am too small chested to have a needle biopsy on the new "tables" they use. So any biopsy for me has to be surgical, which will be difficult and cause scarring that makes imaging less effective going forward.  I didn't really have any fear of the biopsy because I had never heard of any of these issues of denting etc.  I had a previous biopsy, but it was almost under my arm and you really could not see it.  It had little side effects.  This one is still sore about a month  1/2 later.  I see a little indent but nothing awful.  It doesn't bother me.  But I am concerned that the pain will stop.  I think it is still healing. The Dr, cut around my nipple and tunneled in so there was no scar.

The LCIS was an incidental finding and apparently had clean margens by chance.  I am guessing that they may take more tissue from you if (if) you had a needel biopsy with LCIS because they want to be sure there is no invasive cancer around it.  The only way to do that is a surgical biopsy, and most would feel you would be smart to do it.  The nipple cut is a neat trick--scaring is the rim of the nipple.

My concern with mammos is that because I am small chested, dense tissue with many calcifications, I do not image well and mammo is not a good screening tool going forward. 

Through business I am involved with medical equipment and medical associations, including one involving breast surgeons.  As a result, I know a lot about breast imaging and cancer, and I would be happy to share with you.  What you should know is that each modality is sensitive for different things.  Calcifications, for eg., that in a certain pattern suggest DCIS will show on a mammo but not on an MRI. Invasive lobular cancer,(not LCIS--invasive) will often show on a Nuc Med SPECT scan (often called Dilon for the camera brand they use). Ultrasound provides other info.  I am tall and thin--and honestly my breasts are not a big part of my identity.  Honestly, I'd be more upset to gain 30 lbs than to have dented breasts, but some people of course feel just the opposite.

Now for Dr. F  He is, in fact, my surgeon and I know him from business.  I would imagine that in his position he is very talented.  What I can tell you is that he is an amazingly caring, kind and knowledgable person.  I have also run into people (phycists and scientists), who unsolicited told me that he was one of the most talented and caring surgeons they knew.

Initally, every muscle in my body was like in lock down mode, and I couldn't eat a thing for 3 weeks. 

Personally, I would not do PMB unless I had to have multiple biopsies or I had DCIS. Initially, I said no way to Tamox but I may change my mind.  There are other chemopreventive choices. I was told that my risk was 10 % for the next 5 years.  so  ican live with that, but as I get older and risk gets higher, I may think again.  Let's keep in touch through this board.