newly diagnosed

mommaZ

newly diagnosed

mommaZ

I am new here too.

I am having difficulty understanding the difference between LCIS and DCIS.

I was diagnosed in Nov'08 after having a lumpectomy to remove a papilloma.  It was removed but the margins showed LCIS.  I had a lumpectomy done 3weeks later to make sure all the LCIS was removed and the margins were clear.  I also had an MRI to make sure there were no other spots in either breasts.

The results came back that all the cancer tissue was gone "clear margins" and that because it was all out that there was no further treatment needed.

I have not been referred to an oncologist etc. and am feeling like I need to do something pro-active as I am now at higher risk of developing BC again.

Again, the question everyone asks.  Do I have BC? Am I cured of BC?

Any advice, as I have booked an appt to see the surgeon as I feel like I have to ask more questions.

Thanks,

mommaZ

lucky32

Hi, mommaZ,

So sorry that you have to join us here, but welcome. It's a lot to take in all at once, isn't it?

LCIS stands for "lobular carcinoma in situ." The abnormal cells are located in the milk lobules of the breast, and the "in situ" part means that they are confined there and have not broken out into the surrounding tissue. DCIS stands for "ductal carcinoma in situ," and in that case, the abnormal cells are confined to the milk ducts.

As far as whether or not you have breast cancer, you probably know from your reading that opinions are divided on that. The more common answer, I think, is that LCIS is a "marker" for future risk of developing an invasive breast cancer in either breast. Most doctors don't seem to think that LCIS progresses to invasive cancer. DCIS, on the other hand, can progress to invasive, so it is normally treated with lumpectomy or mastectomy and sometimes radiation and/or hormonal therapy.

But opinions are changing about LCIS. There have been some more recent studies that seem to suggest that sometimes LCIS may progress. Leaf is our "study guru" and will probably be along soon and can give you lots of good info about that. You probably already know that LCIS is an extremely confusing diagnosis because there is such a difference of opinion about it, including whether or not it is cancer. I was diagnosed 6 years ago, and some of my doctors call it cancer and some don't. My surgeon and my oncologist's PA don't, but my insurance company, a radiologist, and my new PCP do.

As you may know, LCIS can be multi-focal. That is, there may be different areas of it in one or both breasts. So it's good that they got clean margins, but you'll still need to be watched carefully, as your risk is now higher than that of the general population. How much higher is still a question of debate, unfortunately. A clean MRI is great, though!

Many women with LCIS are offered tamoxifen. Some take it and some don't. I did for a while but it ultimately was not the right medication for me. I think you are wise to make an appointment with your surgeon. He or she can answer your questions and point you in the right direction from here. An oncologist is probably not a bad idea, but your surgeon may also be able to follow you. I didn't see an oncologist for over a year after my diagnosis; I was followed by my surgeon instead. Later, I switched because I felt that at that point, I really needed to see someone who had more experience with breast cancer. You have plenty of time to make these decisions.

An option you may want to consider is having your slides read by a second pathologist, just to get a second opinion on the diagnosis. I did this and found it quite helpful. Your surgeon should be able to help you set this up if you are interested.

Some questions you may want to ask your doctor are as follows:

1. Do you

consider t

lucky32

Hi, mommaZ,

So sorry that you have to join us here, but welcome. It's a lot to take in all at once, isn't it?

(I am sorry for the deleted comment above. We are apparently having major computer problems. It double-posted while I was still writing it, so here is what I was trying to say.) 

LCIS stands for "lobular carcinoma in situ." The abnormal cells are located in the milk lobules of the breast, and the "in situ" part means that they are confined there and have not broken out into the surrounding tissue. DCIS stands for "ductal carcinoma in situ," and in that case, the abnormal cells are confined to the milk ducts.

As far as whether or not you have breast cancer, you probably know from your reading that opinions are divided on that. The more common answer, I think, is that LCIS is a "marker" for future risk of developing an invasive breast cancer in either breast. Most doctors don't seem to think that LCIS progresses to invasive cancer. DCIS, on the other hand, can progress to invasive, so it is normally treated with lumpectomy or mastectomy and sometimes radiation and/or hormonal therapy.

But opinions are changing about LCIS. There have been some more recent studies that seem to suggest that sometimes LCIS may progress. Leaf is our "study guru" and will probably be along soon and can give you lots of good info about that. You probably already know that LCIS is an extremely confusing diagnosis because there is such a difference of opinion about it, including whether or not it is cancer. I was diagnosed 6 years ago, and some of my doctors call it cancer and some don't. My surgeon and my oncologist's PA don't, but my insurance company, a radiologist, and my new PCP do.

As you may know, LCIS can be multi-focal. That is, there may be different areas of it in one or both breasts. So it's good that they got clean margins, but you'll still need to be watched carefully, as your risk is now higher than that of the general population. How much higher is still a question of debate, unfortunately. A clean MRI is great, though!

Many women with LCIS are offered tamoxifen. Some take it and some don't. I did for a while but it ultimately was not the right medication for me. I think you are wise to make an appointment with your surgeon. He or she can answer your questions and point you in the right direction from here. An oncologist is probably not a bad idea, but your surgeon may also be able to follow you. I didn't see an oncologist for over a year after my diagnosis; I was followed by my surgeon instead. Later, I switched because I felt that at that point, I really needed to see someone who had more experience with breast cancer. You have plenty of time to make these decisions.

An option you may want to consider is having your slides read by a second pathologist, just to get a second opinion on the diagnosis. I did this and found it quite helpful. Your surgeon should be able to help you set this up if you are interested.

Many of us here have found it to be to our advantage to study and learn as much as we can about LCIS. It's not an emergency diagnosis, although it should be taken seriously. We are our own best advocates, and the more we know, the better decisions we'll be able to make. It sounds like you're on the right track. Please come here any time and ask any questions you may have--we'll try to help as much as we can. Hang in there, and please let us know how you are doing. Good luck to you!

leaf

Hi there! Welcome to the LCIS community! I decided to join bc.org when I found out how few women have LCIS and nothing worse. I knew I'd never find an in-person LCIS support group. They don't know how common an 'LCIS and nothing worse' diagnosis is, but this study was one of the few that decided to propose some actual numbers. (They rightly emphasize these numbers are very uncertain.) http://www.ncbi.nlm.nih.gov/pubmed/12353815?dopt=abstractplus





Lucky32 did a great job at describing lobules and ducts. She has better verbal skills than I do.



I think that LCIS means that there are a bunch of abnormal lobular cells in the lobules, so the lobules are all filled up with these abnormal cells, like marbles in a bag (the marbles being the abnormal lobular cells, and the bag being the 'basement membrane' of the lobule. If these abnormal cells broke through this basement membrane, then it would be called invasive.) ALH (which I have too) is, roughly, when the 'bag' is not completely full of 'marbles'. I have 'LCIS with pagetoid spread into the ducts', which, from what I understand, says that I have LCIS in the lobules, and they have also spread into the ducts. I think that lobular cells must look different than ductal cells. I have seen one poster who said she had DCIS with pagetoid spread into the lobules. It took me more than a year to find out that yes, you can have lobules right underneath the nipple.


The only thing I can think of that is NOT controversial about LCIS and nothing worse, is that I have found no articles that dispute that it was first described by prominent pathologists Foote and Stewart in 1941. (This was AFTER the description of DCIS.) http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=314428 I saw one paper that said no one challenged the name LCIS because these two pathologists had so much stature.





Everything else, from whether or not biopsies that contain LCIS without a worse diagnosis should be excised, how LCIS should be defined pathologically, how multifocal it is,what LCIS should be called, whether or not LCIS should be classified as cancer, how common LCIS is, how much added risk does LCIS give to a woman's risk of breast cancer, whether or not a significant family history of breast cancer increases an LCIS patient's risk, to how people with LCIS should be followed or treated, is controversial.





It has been a lesson to me since Dec 2005 when I was diagnosed, how absolutely little we know about LCIS. I heard that oncology is like looking with a flashlight for something in a pitch black room. We don't know the answers to a lot of things.





This is what the National Cancer Institute says about LCIS. That doesn't mean there isn't any controversy about it. http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6





When I was first diagnosed, I thought this should be easy. I will just find out my risk for breast cancer, and then make my choice. I'll just ask my oncologist when I see him. I like to think I operate a lot of my life with numbers.





Well, I've been given numbers for my lifetime risk of breast cancer from as low as 10% (the lifetime risk of an average woman in the US is normally quoted as between 10-12%) and, in one breast cancer calculator as 79%. (without tamoxifen). That's a big range.





There is the NCI breast cancer risk calculator which uses the modified Gail model to predict breast cancer. http://www.cancer.gov/bcrisktool/ which specifically EXCLUDES LCIS. I think it may also say it should NOT be used to make clinical decisions for an individual woman.





There is Dr. Hall's breast cancer model http://www.halls.md/breast/risk.htm . WARNING WARNING: DO NOT GET A HEART ATTACK if you put your numbers into this calculator. Dr. Hall SPECIFICALLY SAYS that the numbers from this calculator have NOT been peer reviewed and they have NOT been compared to populations with these risk factors. It says it should NOT be used to make clinical decisions!! This was the website that gave me the 79% risk. This risk model assumes that all your risk factors are additive. This asks the question: If I have LCIS AND a bad family history, do I have a higher risk for breast cancer than if I had LCIS alone? There are some risk factors for breast cancer that are NOT additive. We do not know the answer to this, from what I know.





I discovered this editorial last fall. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

The Gail model is far and away the most common breast cancer calculator, the next most prominent one only used for women with BRCA. This editorial says that the modified Gail model (which includes atypia but excludes LCIS) WAS better than a coin toss in predicting whether or not an individual would get breast cancer - but not by much. This is IF the Gail model could be used for LCIS (which it can't, according to the NCI website.) My GP, who obviously does not know much about LCIS, agreed that you cannot predict which woman will get breast cancer.





I have found discrepancies in what various ACS guidelines say about LCIS. I would feel better if they said "Well, we think its in the ballpark of X, but we really don't know." Instead, they often say one thing in one sentence, which contradicts the next sentence. Then pages later they say it might be something else, and the sole citation they cite says something else, and the abstract is trying to say that 0 out of 7 was different from 2 out of 7. It is, but those numbers are way too small to have any certainty about them.





You will find various women here have been given a variety of recommendations - whether or not they were excised after LCIS was found in a biopsy, whether they were told they 'had breast cancer', whether they were excised, or excised to the margins, whether they were recommended they have just screening, tamoxifen/raloxifene + screening, or prophylactic bilateral mastectomies, whether or not they are screened with MRIs.



Since my LCIS diagnosis (Dec 2005) and excision (Jan 2006), I've had 2 benign biopsies last year. I'm on tamoxifen now. I'm getting yearly mammos and biannual clinical exams. I started out with a clinical exam every 4 months.




My advice? Get 'your team' together. Get people you like and who respect you and your values and your attitude. (This may change over time.) As lucky32 said, there's no rush in making any decisions. Feel free to ask questions.

62192

Hi mommaZ



Welcome to our LCIS site. I too have felt like their have been a lot of different things said about LCIS and DCIS and sometimes it just gets very confusing. However the more you read the more you will learn about it and THAT has been very helpful.



At the end of January I had breast reduction surgery and after hemming and hawing about this for 3 years I was soo happy and believe me I still am!!! Then I got my pathology report back and it showed LCIS in 1 spot, they tested many other parts of the tissue and luckily it was not found anywhere else. Doesn't it feel so good that you know it is not in their anymore??!!! I have seen 2 Oncologists, a breast surgeon, my Plastic surgeon and GYN. My breast surgeon said really I don't necessarily need to see an Oncologist, I can just see him or see him and my GYN every 6 months alternating between the 2. The 1 Oncologist that I liked said I should be seen every 3 months and mammogram/MRI every 6. I feel more comfortable with that and will alternate seeing my Oncologist with the breast surgeon. My Oncol. suggested I go on Tomoxofican as well as check ups more often, this reduces your estrogen level which would reduce your BC chances if you are Estrogen positive. I am definately very pro-active as far as reducing my chances BUT the side effects really scare me. I do not do well on meds, sensitive tummy, headaches, joint pain (i had a bad back injury years ago and even a cold makes my joints just go crazy sometimes). However this by all means does not mean that everyone will have problems and to be honest I have not ruled it out completely. The other option they told me was that i could have a bi-lateral mastectomy. I admitted to the Dr that i tend to be a nervous person and anxious about stuff but not sure if I would or wouldn't go to that extreme. My plan at the moment is too have check ups every 3 months.



I hope some of what i said has been helpful. I think you are making a very good decision to see a Surgeon, he/she will give you suggestions from there. I too agree that you need to take some time in making the right decision, that is 1 of the many suggestions given to me and it has been very helpful.



Keep in touch

Allison

Anonymous

mommaz-----when I was first diagnosed with LCIS (over 4 and a half years ago), not only did I have trouble finding anyone else with LCIS, I couldn't even find anyone on the chat rooms or discussion boards who even knew what I was talking about! (One reason I think it is being diagnosed more often now is the new improved digital mammos).  I finally asked for our own LCIS catagory because we have our own special set of issues that are very different from those with an "official" cancer. As others here have said, there is a great deal of controversy surrounding LCIS. I have run into as many that say it is bc, as that say it isn't bc. I was given the usual 3 options: 1) close monitoring 2) tamoxifen and close monitoring or 3) BPMs.  I chose #2 as I was already watched fairly closely due to my mom's bc, my medical team all felt that BPMs were too drastic for my particular situation, and I wanted to do so something proactive  to try and prevent an invasive bc in my future. Fortunately, I tolerate tamoxifen pretty well and it appears that it's working--aside from some "false findings" on my last 2 MRIs (repeat MRI and mammo 2 weeks ago now all clear!)  I haven't had to have any other breast biopsies or surgeries. I see my oncologist every 6 months and I've been alternating mammos and MRIs every 6 months on the opposite schedule. (but that may be going back to every 12 for MRI/mammo now).

Medically, LCIS and DCIS are both "technically" in-situ breast cancer. DCIS arising in the ducts, LCIS arising in the lobules; both contained--have not broken thru into the surrounding breast tissue. As far as the difference between LCIS and DCIS goes (and this is JMO from my research; I'm a medical professional but not an oncologist)---it seems to be related to their relative potential for invasiveness.  I've seen many stats over the years saying anywhere from 30% to 60% of women with DCIS, if left untreated will go on to an invasive bc within 10 years. My surgeon quoted only 5% for LCIS, but I've seen stats as much as 17% within 10 years. So I guess since LCIS has a very low potential to become invasive over time, it is not considered an "official" cancer by many in the medical community. I personally am glad that my doctors take it seriously and watch me very closely. Feel free to PM if you  want to talk anytime.

Anne 

62192

Anne



I have a question about LCIS. As I stated on my comment I was diagnosed with it at the end of Jan after a breast reduction. Do you think I am making a mistake with not going on the Tomoxifican as well as the check ups. I still have not decided this for sure. I have been going back and forth about this for awhile trying to decide if I should be taking this med because it would reduce the risk. It is just the side effects that really bother me and then not knowing what happens after 5 years. From what I have heard their is a lot of controversy over this too. I do not have any BC in my family other than a great, great, great Aunt which the DR says is too long ago. Have you every considered the mastectomy option? Just curious, I have wondered a little bit about it but at the moment feel that this would be a little too drastic for me Thank you for any advice ahead of time.

Anonymous

allison-----I don't think there's any right or wrong with LCIS, I think  it just comes down to how much risk you can live with.  Given my high risk from the combination of LCIS and family history (my mom had ILC), I wanted to do something proactive to lessen my chances of developing an invasive bc in my future. My mom had taken tamox and tolerated it very well (she's now a survivor of over 21 years which to me says a lot!), so that factored into my decision making. Tamoxifen is generally well tolerated by most, the most common SE is hot flashes.  The more serious SEs (blood clots or endometrial cancer) are reportedly less than 1%. I would recommend that you talk with you doctor about your risks and benefits of taking tamox.  No one can tell you what is right or wrong, whatever you decide has to be right for you.

Anne 

leaf

As awb said, there is no right or wrong answer.





One option some people do is to start hormone therapy, and if they don't tolerate it well, they stop.





Mastectomies are irreversible, of course. I think most surgeons make patients wait many months to make sure they are comfortable with their choice. I think some people can have insurance issues, especially if they have a weak family history. I have a weak family history and my breast surgeon is one of those that don't believe in mastectomies for LCIS. Different doctors have different views.





Take your time to search out what will make you the most comfortable. There's no rush in the decision. You may also have different views over time as you gain perspective.

LCISgirl

Mommaz,

You're in the right place as these ladies are so helpful and know their stuff!! Sorry that you have to deal with this controversial dx. It can be so confusing to read the different reports and opinions.

I just wanted to chime in with my experience.  I was dx with LCIS only in my right breast.  The left was benign.  Since my right breast was full of it (stereotactic bx, wide excisional bx, 4 core bx in each quadrant) all the docs suggested mastectomy.  I went to 4 different surgeons and also an oncologist before deciding to go ahead with bilateral mastectomy.  I decided that I was not one who would handle the 6 months testing etc.  I just kept worrying "What if they just didn't biopsy the exact tissue where it's more than LCIS or if they didn't catch the portion that had indeed gone invasive?"  I hate to wait!!! Also, I'm 50, had my children etc...so the idea of mastectomy for me was ok.  Also, after the wide excisional bx, I had one smaller/indented looking breast anyway....I figured with bilateral mastectomy / reconstruction would give me a symmetrical outcome. After the mastectomy, the pathology came back that there was a small invasive portion.  I was glad that I went ahead with my gut feelings to have the surgery. Anyway, since your biopsy and excision showed that they got clean margins, it appears that your LCIS was found and removed at a good time.  I've heard it described as more of a thickening, lacy spider web type of appearance rather than a lump.  I'm glad that you were able to get it removed and you can now be aware and be monitored more closely. Everything I've read says that it's slow growing, so there is time to research and get opinions from your team.  With close monitoring, you'll be able to catch if there are any changes early on.  Best wishes to you as you go thru this journey.  Let me know if you have any other questions.

femme

My oncologist told me to consider LCIS as "wallpaper," an overall type of appearance on each side of my breasts.

femme

leaf

Hi femme. I'm confused. If its not too personal a question, could you talk more about the wallpaper appearance? Is (s)he talking about how your breasts look externally, or your LCIS cells internally? Not sure what a wallpaper appearance means. Thanks so much!

femme

My oncologist disscribed LCIS as an overall pattern "like wallpaper." i think she means that the LCIS is all over both breasts, right and left like wallpaper pattening.

femme

leaf

Ah, I guess this is a description of LCIS that I've read as usually being multifocal, and often bilateral?

femme

yup, it would seem a more poetic, visual way of saying the same thing, Leaf.

femme

Kimber

Wallpaper....hmmmm..... I hope it's not the gawdy kind with red velvet and little cherubs shooting arrows!



Speaking of wall coverings....I am 7 weeks out from my lumpectomy tomorrow. My seroma has gone away, but I think I am going to need some spackle.......



Oncologist appt tomorrow to draw blood - I am assuming to see if the tamoxifen is doing it's job? Is it possible she will raise my dose? I've had no side effects except insomnia (which I am prone to anyway) and no period. Considering, I'm a pretty happy camper so far.

Kimber

Anonymous

Kimber--I have blood drawn every 6 months at the oncologist; they look for tumor markers (but not all oncologists feel these tests are reliable, so not all do them) and do a CBC, and sometimes a test for liver function. What dose of tamox are you on right now? If not already at the 20mg, they would increase, otherwise you would stay at the 20mg dose. Test for tamox doing it's job? Are you referring to that test for how it's metabolized? My oncologist has never mentioned that, I only just learned about it here recently, but since I have less than 7 months to go to finish up my 5 years, I'm not going to persue that test. I'll take my clear scans (mammo/MRI/US) as a testament to the tamox doing what it should be doing! I'm glad to hear your seroma has gone away and that you're tolerating the tamox well.

I've always been curious--since LCIS is most often found to be diffuse in nature (multifocal, multicentric and bilateral), how is it that only one or 2 spots (only one in my case) would be seen on imaging? Why wouldn't many areas be seen?  Why would one area show up and not another? (I have very clear breasts, not dense at all, very easy to image per radiologist). Any ideas anyone?

Anne 

Kimber

Anne,

Thanks for the info. Tumor markers?? I assumed they would be testing my hormone levels to see if my estrogen was diminishing? Isn't that the purpose of tamoxifen? I can tell by my breasts that my estrogen has decreased - they usually swell up and are VERY sore right before my period. That first time of the month for me on tamoxifen came and went with only some cramps. I'm curious also, I see all these postings of ER+/- and PR+/- ..... how do you know that? I am on 20 mg of tamoxifen from the start.



I am assuming that the LCIS cells need to present larger to be seen on imaging. That maybe they are too microscopic to be seen until they grow? My surgeon told me that we had 100's of thousands of lobes - that's why LCIS is usually seen everywhere.



Do you find that you forget about it for a little while, then all of the sudden you go "oh yeah....." I'm a "cancer patient". Sucks.

Kimber

liveit56

who knows what is right to do....as you said you do forget for a little while and then you are ask if you have ever had cancer and it is all back again...and I don't even know what to tell anyone because I was told it is not really cancer but a marker but on my report it had on it that the consultant agreed with the findings of malignancy so I take my report with me when I go to a new doctor or the ER and they can read it for themselves and make there on conclusion.

I was taking the Evista until a few weeks ago because of possible SE but I am going to start taking it again this week to see if Evista was what really causing the problems...I had really bad restless leg symptoms and my legs had cramps and I put on about 10 lbs and couldn't even where my wedding rings.  That has all gone away so I am going to try it again to see what happens.

You are also right this does suck.

liveit

Anonymous

As far as I understand it, tamoxifen doesn't decrease your levels of estrogen (that's what the aromatase inhibitors do); it blocks the estrogen from binding to the receptors in the breast. Even having had my ovaries removed (not by choice), I still take tamox as there is still estrogen being produced by my adrenals, skin and fat (I've got plenty of that!)  My biopsy sample was supposed to be checked for estrogen/progesterone receptors, but wasn't because it was too small a sample. They said I could take tamox regardless whether it was negative or positive, as there was nothing else to offer me at the time; (now some doctors are also prescribing  Evista); and that because most LCIS is found to be positive anyway.

Anne 

leaf

Thanks femme, for the poetic description!

Hi Kimber-what my oncologist does to monitor tamoxifen for me is a CBC (aka complete blood count) and Chem12. Those tests monitor for a decreased platelet count (platelets are involved in clotting), low white cell counts, red cell counts, etc. because occasionally/rarely they drop (and they don't even know if the drops were from tamoxifen, but its easy to check.) This also checks for anemia if you are having irregular bleeding, and they do a Chem 12 because that includes liver enzymes to monitor for liver abnormalities. There are all occasional or rare side effects of tamoxifen.



The package insert states the recommended dose for women with breast cancer is 20-40mg/day. They state for DCIS they recommend 20mg/day x 5 years, and for High risk women (they include LCIS in the High Risk Group) they recommend 20mg/day x 5 years. (This is from the 2006 tamoxifen package insert.)

Kimber

Jeez, I guess I never dreamed I would need bloodwork for all of that.....I just assumed it was to test my hormone levels. I guess I'll find out tomorrow!

lucky32

Hi, girls,

We had company in and out this past week so haven't been here much. Missed you! Kimber, Anne is right about how tamoxifen works. So they are probably not testing your hormone levels. When I was on tamoxifen, I remember reading that regular blood work was suggested, but I can't remember why. Seems like maybe liver function? Someone else mentioned that above. I never had any blood work specifically because I was on tamoxifen, but I did have it (and still do) for other reasons. When you go for your appointment, they should tell you what you're having done, and you might even have to sign a consent form. If they don't tell you, be sure to ask--it's your right to know.

As far as LCIS and imaging, it has always been my understanding that LCIS does not normally show on imaging, no matter how much of it there is or how widespread. I don't think this means that it never shows, only that it is unlikely to. So Anne, you were "lucky" (yeah, right, ha ha) that some of yours did show up. Mine never showed on either U/S or mammo. We knew I had a HUGE cluster of cysts, along with who knew what else. The LCIS was found on biopsy for that. If I hadn't had the cysts, and if they hadn't grown so big as to need attention, my LCIS might not have been found.

I think the reason that LCIS doesn't ususally show up is that it doesn't tend to form anything that can easily be seen, like a lump. It's often more like a thickening, or even nothing at all that can be either seen or felt. It would be nice if they could come up with a way to image it, or to prevent it in the first place. Now THAT would be some progress!

Leaf, isn't your mammo tomorrow? I will be thinking of you and hoping for a great report. Mine is Wednesday.

Hope everyone will have a great week.

leaf

Hi all,

Yup, that's what I've read too, that normally LCIS doesn't show up on imaging. However I think that 1 or two people here have stated theirs did show up on imaging, or a thickening. Mine didn't. I know I've read papers that opine that LCIS usually doesn't show up on imaging (that's a big reason why its hard to study-we don't know how many women are running around that have it but don't know it because they've never had a biopsy to that spot).

I've also read that often LCIS is in cells that are *adjacent to* but not *at* the site of the abnormality that prompted the biopsy. In other words, they think that usually LCIS causes both breasts to be at higher risk for breast cancer, but as far as I know, they don't know why. They think in a *small* number of cases, LCIS may be a nonobligate precursor (the LCIS is NOT destined to become cancer but MAY become cancer).



Tomorrow's my mammo. Lost, then found my mammo order (in my mammo films). I have a lot of other issues going on. Good luck, lucky32. I'm thinking of you!

Peaches70

I've heard the same as leaf - that the LCIS is not what shows on the mammo, but that something in the same area is causing an aberration on the film. The microcalcifications that are frequently the cause for biopsy come from the death of cells, which may be cancer cells because of their unusual growth. Much of what I read indicates the LCIS is a coincidental finding. Lucky us.

Anne

Anonymous

Thanks everyone for the info.   Lucky and Leaf--praying that you both get clear mammos!!!!!

Anne 

leaf

Clear mammo here! Thanks again for you well-wishes!

lucky32

That's wonderful, leaf! What are you going to do to celebrate? Will it involve chocolate?

Kimber

Great news, leaf!!



I saw my oncologist today and she was thrilled that I am tolerating the tamoxifen so well. She said younger women don't tolerate it as well and have terrible hot flashes. I have had none. BTW, I'm 43, staring down 44.....



I was noticing on my "check out" slip that the insurance code was "breast cancer" and by my name it said "bc". She also talked about my "cancer". My surgeon prefers "neoplasia". Once again, LCIS = CONFUSION.



Mostly I consider myself lucky, and that is all I can say about it right now.

Best wishes to all,

Kimber

leaf

Thanks lucky and Kimber.



I'm trying to support my single friend who has (almost certainly) terminal cancer. This is the first time I've seen first hand the health care mess when it counts. (She can still walk and drive. Her pain scores have been above 7 for the last 2 months, and if its not pain its nausea.) She bounces between continuing treatment and not. I will honor whatever she chooses, of course, but its hard when she changes her mind every few minutes. I don't know if she is having trouble deciding or if she is thinking clearly. But today, she didn't talk about discontinuing treatment all day. I think she is frightened of being abandoned-this must be common. She definitely does not want to talk about what she is feeling.



Tomorrow I'll be spending almost all day with her. Between getting treatments and getting prescriptions filled, its a full time job! I'll have to go back to my regular work soon, so I won't be able to help her nearly as much.