DX ADH & LCIS

[RITZGAL]

Had stereotactic biopsy that showed ADH.  Excisional biopsy shows LCIS. Spoke to Dr briefly about results tonight.  Will discuss in detail in visit next week, but Dr. said it was not cancer.  Why is it called Lobular CARCINOMA in situ then?  Doc says I need only to have mammogram yearly and do not need additional surgery.  But I have a feeling there is more to this than he wished to discuss over the phone.  Isn't this the condition that women sometimes decide to have mastectomies so as not to get cancer?  How does one make this decision.  Are there degrees of this condition?  Should I ask dr. to run genetic tests?  I would like to know what questions to ask.

[RITZGAL]

You are a riot.  Gilles IS better..more mature, but he wasn't on tv at the time.  My sons are older than him.  I'll talk to you next week.  Right now I'm going to google.

[ncmichigan]

I saw that risk assessment tool (I think it's called "Halls") on another site and there was a lot of discussion back and forth on how accurate it really is. In fact, I think you
and a gal who went by "leaf", discussed it quite a bit. I actually planned to email you
there, based on zouzi's suggestion that you might not be on this site any more, and
then you replied to me here! I'm so glad you did---you've been really helpful.
Like I said to Sue, I should have a lot better handle on things soon, starting with my PCP and then the oncologist.
You're right about distractions---they can be a real "sanity-saver" for us! I LOVE Mario
Lopez, with or without his shirt! I love Dancing with the Stars and I think Gilles Marini
may have beaten Mario out in the looks department! I'm old enough to be his mother,
but he's a real hunk. Google his name for some great photos that'll definitely distract you! ; )

[ncmichigan]

Hi, SueYoung55,
Wow, you've really been through the wringer, girl! I can only hope you're doing well at this point---I wish you the best! And I do appreciate all the information I can get.
From what I understand, LCIS is not visible on mammo---it's always an incidental finding when something else is checked out. In my case, it was microcalcifications
that came from the adenosis, according to my surgeon. I had two areas of microcalcs and adenosis, but only one showed the LCIS. Some women wonder "why get mammos?" if it doesn't show up, but from what I understand, if LCIS leads to cancer, it's most often invasive ductal, not invasive lobular. I'm sure a few show up as ILC
but most don't. If I'm wrong in my understanding, I hope someone will let me know.
After my appointment with my PCP, I'm definitely going to ask for an oncology consult. It just makes sense that an onc would have to know more than an internist.
I absolutely plan to be hypervigilent! I think it's Lynn Redgrave who does that commercial where she says something like "I know I have to die of something, but it won't be breast cancer, if I have anything to do with it!"
Thanks again, and you hang in there!

[SueYoung55]

i'm not an expert on LCIS but had invasive lobular carcinoma, 10 cm mass, 2 nodes. I've had chemo, mastectomy, more chemo, radiation, another mastectomy, DIEP reconstruction.... yada yada yada :)

What is stunning to me is that ILC is not visible on a mammogram. I would ask if LCIS is visible on a mammogram. I would really want to know that!

I can only tell you that if it were me I'd be hypervigilant in my surveillance. They (always wondered who they is) say LCIS doesn't normally become cancer. That may be true. But when you've got ILC you can't help but wonder?

Best wishes to you both!

[RITZGAL]

I think management depends on your personal circumstance and your md.  You know my circumstances and my surgeon said annual mams plus chemoprevention.  Then onc said first mam s/b 6 mos. and if clear next in 12 mos with visits to PCP, GYN, ONC every yr plus chemoprevention should do it.  I'm sure there is a standard of care for your situation.  Also there are risk assessments you can take on the internet to get your risk, but LCIS is not factored in.  There is one that does factor in LCIS.  I will try to find.  But if you see the right doc, he/she should be able to tell you your risk.  Good luck to you too. I'm getting distracted watching Ellen.  Mario Lopez took off his shirt.  I guess your never too old to appreciate the finer things in life.  Distractions are a good thing.

[ncmichigan]

Hi, Ritzgal,
Thanks for your prompt response---I really do appreciate it. In all my rambling I forgot to ask you if you found any concensus on just what the surveillance should be for high
risk women with LCIS? I'm thinking an annual mammo wouldn't be enough for me, if
that's what is recommended for the average woman. I've seen reports of an annual
mammo alternating with anual MRI and semi-annual clinical breast exams so there's some kind of checking every three months. But then others say just continue routine mammos! Is there any standard of care? Maybe my PCP will know this and let me know next week, but I'd like to be prepared when I see her.
I'm also confused about all my risk factors (proliferative changes, family history, late
menopause, never pregnant, multiple biopsies) and LCIS on top of each other. I don't know how to calculate my total risk and there doesn't seem to be any concensus on that either. Hopefully, more and more research will give us some answers! I'm near Ann Arbor-the medical mecca of the MIdwest- and I think I'd be willing to participate in some studies if it would help provide answers for others diagnosed with this. The other pro to being in this area is that second opinions are always close by.
Good luck to you and thanks, again!

[RITZGAL]

Hi nc,  My surgeon was the same way. The onc was kind, but I'm not so confident in her.  I sometimes feel that I know more about lcis than she does.  My gyny said to go to someone who specializes in breast diseases at a breast center for my peace of mind.  I am in the Chicagoland area, so I am going to Rush Presb Med Center.  I am going to ask about MRI as well as mams.  I do not have relatives with breast cancer, but due to ADH, LCIS, columnar cell changes, and a great amount of hyperplasia, and the fact that I was on Prempro so long, my risk is high enough to be concerned.  I am also going to ask about molecular imaging.  This is something new and not yet ready for prime time because it still delivers too much radiation.   (I do a lot of reading too).  But I figure Rush would know about it.  From what I read, the imaging is precise.  And I know what you are referring to regarding LCIS being suspected of actually developing into invasive in a small number of cases.  This new imaging technique seems like it would pick up any changes at a much earlier stage than feeling any lump or seeing any calcifications would.  So there is always hope for better tools.  I'll keep you posted with what I learn too.  I aways come back here for updates.  It is a great place.  You just have to verify what you learn here.  Especially with lcis, as it has been called a cancer here, and now that has changed.  I think it should be the opposite.  That a few yrs ago, it was not.  Now there are studies that say some lcis may progress to other forms of breast cancer.  There is much to learn.

[ncmichigan]

Hi,
Zouzi sent me a message saying you might not even be on this site any more, so I'm VERY happy for your reply!
I saw my surgeon yesterday and he is very nonchalant about the LCIS. He's a good guy, but not the best bedside manner. I think docs specialize in surgery because maybe they don't really want to deal with people, just anesthetized bodies. In any case, he said, "You're fine, just get your mammograms and call me if you have a problem". I have an appointment with my PCP next week and I have a LONG list of questions for her. I have every confidence she'll take the time to listen to me and explain what I need to know.  But because LCIS is so "gray" (I much prefer "black or white"!) I'm just not sure I'll be asking everything I need to, or if my healthcare system knows all it should about this condition. I do plan to ask for an oncologist consult and
will probably ask for a second opinion on my slides.
I think this site is great and it seems like there's a lot of smart women here who are willing to share their experiences and information. I just want to be as pro-active about my own care as I can possibly be, without turning into a huge "worrywort" or hypochondriac! The anxiety and conflicting information is the worst to me---even the American Cancer Society site says LCI is "sometimes classified as a type of non-invasive breast cancer" then elsewhere on the same site it says "it is not cancer". It's the same with the HealthWorld.org site. That's confusing to me as a healthcare professional, so I can imagine what it does for the average Jane or Joe.
Enough of my rambling on---thanks, again, for your reply and for whatever additional information you can give! Wishing you all the best on your second opinion!

[RITZGAL]

Sorry I didn't see this until today, and I'm sure you've already been to dr.  What was the outcome?  My thoughts are with you.  I have decided after all this time to seek a second opinion with my slides....to make sure it is truly lcis and not dcis.  Also, to see if management is best for my situation.  Most of my questions didn't arise until after the diagnosis, as I never heard of lcis before.  Let us know how it went today.

[ncmichigan]

I am currently feeling exactly as you were back in March. I just had my biopsies a week ago for two areas of microcalcification found on mammo. I have also had two prior biopsies that found fibroadenomas, slerosing adenosis and radial scar, all within the last 5 years-I'm 61. My sister died of breast cancer at age 50 in 1997
and my maternal grandmother also died of it. I have my follow up appointment Tuesday. Did you learn anything more about what I should be asking? I'm feeling a lot of anxiety based on all the various information I've read. I'm also a retired nurse and feel I should know more than I do about this diagnosis, but I've been out of clinical practice for about 20 years! Any information you can give me will be very much appreciated.

[RITZGAL]

Thank you Connie78.  At the very least I will have close follow up. I'll be trying to learn about LCIS before my Dr visit next Wed.

[Connie78]

Hi, to my limited knowledge, LCIS is really better than DCIS. Your doctor should be right. But you should definitely have close follow up - yearly mammogram is a must.