new LCIS dx

Misty, we have talked so much and our paths seem to be the same (FEA) that my heart is aching for you and I can so understand your fears. Your husband is reacting the only way he knows how. All he knows is you don't have the big "C" cancer. He doesn't understand LCIS/DCIS/IDC/ILC or any other terms we have come to learn here. All he can see is that you have issues with your boobs, had tests, surgery and got a non cancer benign diagnosis. It is not that simple because LCIS is something and it isn't really benign. Now I don't have LCIS so I can't speak from experience but I know you will get some awesome feedback from the girls here. I hope your husband will go with you to the MRI or have someone else take you so you can get "calming" drugs before it. I didn't and it is doable w/out drugs but why not have them if you can. RIGHT?  You have my email so please feel free to email me whenever you need to.

Good luck on Friday and Good luck with JHU. When I started down this path my husband said he would send me there if I felt I needed to be seen by them. With Moffitt Cancer Center right down the road I didn't see a need but in your shoes I would go for it. Maybe you will meet Lillie Shockley,she works there and does their expert  board.

Keep me posted.

Karen 

Misty,

Yes, ask for some "calming meds" to help with the MRI. Also, I agree with Karen, your husband doesn't really know how to react. I always say our husbands don't like it when we are sick (even with a cold). We are the strong ones and they need us that way. LCIS is a very tricky diagnosis, and I hope that is the extent of it for you! If you do go on tamoxifen, I can tell you I am one of the lucky ones, I have minimal SE's. I think I actually feel better on it!!



Let us know how the MRI goes, and I will be sending out good thoughts for no further findings!

Kimber

Hi Misty,

I am new to this LCIS/ADH thing too.  I am 41 with two kids and have not had any other health issues until now.  It all started last April 07 and I had 5 MRI's and a biopsy which lead to my lumpectomy in Jan 08.  My Surgeon and ONC both wanted me to go on tamoxifen which I have been on since Feb.  So far the only SE have been no periods, and night sweats.  The only other issue I have now is a large complex cyst that will be removed in June.  Both my GYN and ONC says it is not from the tamoxifen.

I have been obsessed with this diagnosis in the back of my mind wondering if it will ever turn into something more.  

I hope you get the answers you need.  Do a lot of reading, but don't worry too much.  Just take everyday in stride.

Holly 

Misty,

To answer your question about hormone status, mine was not on my path report, but I am told it should be. My onc told me LCIS is almost always ER+, hence the tamoxifen.



The only side effect I have had on tamox is no real period since starting it in Feb. with the exception of a few days of spotting in April. No night sweats or hot flashes for me and no depression. If anything, I am in a better mood. I feel more "evened out" and DO NOT miss the swollen sore boobs once a month. I wear the same size bra all month!



If you are claustrophobic, ask your doctor for valium or something. It helped me get through both the MRI and the MRI guided core needle biopsy AND wire guided excisional (was compressed in mammogram for 1 hour straight). The MRI isn't bad at all. Take yourself to your "happy place"!



Let me know how you are doing!

Kimber

Hi Misty



I am pretty new to LCIS myself. I was right where you are a few months ago. I had a boob reduction on Jan 28th and they found LCIS when they biopsied all the tissue they took out. Luckily it was in a small spot but for weeks I was freaking out!! My husband too is a great guy and has been very understanding but sometimes I really feel he just doesn't get it. I do not have any BC in my family but I am 47 years old and 3 kids under the age of 13. It still just makes me sick with worry when I think about the possibility of getting BC. I have seen 2 Oncologist, breast surgeon and they want to to go on Tomox, but I am still freaked out about it and haven't had the courage to do it yet. I really paranoid about the SE. I just had my 3 month check up with my Oncologist and he wants me to do another Mammorgram in early July. Basically since I had a reduction he wants to start back with a Mammogram because I have to start with a new baseline. I am still sore from the reduction/lipo, I can't imagine how it is giong to feel doing a mammo in a month. Let us know how your test goes

Misty,

Yes, I shared my diagnosis. I had to. My mother (passed on) and sister both had it, so it is not new to our family. I felt weird discussing my boob with my 3 brothers and my 85 yr old father......but eventually it just became tissue and I got over it.



You are probably right that you are waiting for your MRI results. Also it is very hard to just tell people you have bc when you don't look like you are battling it - you have all of your hair, etc.... I was also very much not like myself. I think I lived outside of my body for about 4 months. My family was concerned because I was very matter of fact, and normally I freak out a little bit! I think something takes over and you do what you do in order to get through it.



Best wishes and keep us posted on MRI results!

Kimber

Hi Misty,

Sorry I did not make my note clear.  My cyst is on my right ovary and I will be having it removed in two weeks.  I've never had them before, if I have I did not know it.  As for my ER +, my onc had the pathologist go back to find out what my status was from my lumpectomy.  They had enough tissue to find out.  He wanted to make sure before I did the Tamoxifen route.  My onc also said that if my gyn removes both ovaries due to this cyst, then I wont' need Tamoxifen anymore.  I had mixed feelings about that, somehow I think I'm doing some good taking it.

Holly    

Misty3,

First - the MRI experience: While the anxiety about what might or might not be found is great, the actual experience will depend on whether you are claustrophobic or not. You will lay face down with one or both arms over your head and your girl(s) sticking through the one or two holes (depending on the equipment) in the table. They usually slide your table into the machine foot first, and, since you are face down, you can only tell because it gets darker. You will have headphones through which the technician will direct you and through which some music will play - but you really won't be able to hear the music. The noise is annoying, bordering on scary, but it stops and starts as different shots are being taken. I actually went to sleep the second time. The worst part for me was that my nose filled up and my face swelled while lying in that position. The second time, I took decongestants and used a nasal spray. That really helped. So, do what you have to do to be comfortable.

Second - your husband: Yeah, they have a hard time understanding. Mine said, "Tell me when I should be worried." He wants to be supportive, but doesn't really want to talk about it too much. That's why you come here. I was told to bring him to appointments, etc., but after taking him to one appointment and one biopsy in the office, I decided to spare him as much as possible. I needed him for the two excisionals, but I figure that for now I am okay with appointments by myself. Insist on having the results as soon as possible - a phone call home preferably. That way, if you NEED to have him with you at the appointment, you will know. Otherwise, he won't need to come.

Finally - your membership in club LCIS: It will get easier. I think all of us felt more disturbed, more anxious at first. It has taken me over a year to reach a point where I am able to not think about it every day. Continue to read what you can until you are comfortable with your action plan. Tamoxifen is one route. (I am taking Evista instead, which does not reduce LCIS, but has been shown to prevent INVASIVE breast cancer.) Side effects will depend on your own body, but usually improve after about 6 months. Frequent monitoring without medication is another route. And, yes, there is the route of bilateral prophylactic mastectomies. It all depends on your specific risk factors, your level of anxiety, your ability to tolerate side effects, etc. Don't let it make you crazy.

Anne

There isn't much of an LCIS 101. The problem is that there is controversy about just about every aspect of LCIS, from its name on. A large part of this is because, although there are more known cases now than in the past, we don't know how many women are walking around with LCIS and nothing worse and don't know it. That's because normally (not ALWAYS, but normally), LCIS is not visible on mammo, ultrasound, or by clinical exam, or (I think) MRI (not completely sure of the MRI.) So we don't know the true incidence of LCIS, the numbers are so small that its hard to do studies on them.



The NCI site http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

opines it is better termed lobular neoplasia. Here's one opinion about incidence http://www.ncbi.nlm.nih.gov/pubmed/12353815



Here's one of the earlier studies that opines that LCIS in a LOW but unknown number of incidences may be a nonobligate precursor of bc. http://www.ncbi.nlm.nih.gov/pubmed/16604564 ,

http://www3.interscience.wiley.com/cgi-bin/fulltext/112579964/PDFSTART



I don't have time right now to look for studies, but I've seen studies that say that even for BRCA women (which have a MUCH higher risk for bc than LCIS from the numbers I've seen), most BRCA women (who do not yet have breast cancer) do NOT get prophylactic bilateral mastectomies. I think I've seen papers that say that most high risk women opt not to do tamoxifen. On the other hand, I don't think tamoxifen works really well with BRCA women. But the population of LCIS women is so small, and their risk is so much lower than BRCA women (or at least women with an intense family history) that it isn't studied very much.



As far as I know, there is no way to know if your LCIS is 'responding' to hormones.

Here's some threads http://community.breastcancer.org/topic /47/conversation/653988?page=1#idx_25 , http://community.breastcancer.org/topic/47/ conversation/692321?page=1#idx_8 , http://www.springerlink.com/content/p755k56248g052n7/



The name LCIS was made in the 1940s by prominent pathologists.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1187082



You can try Pubmed searches. http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed



Gotta get my zzzzs. Maybe more later.

Hi Everyone,

Thank you for the information and the reassurance that it's OK to take my time with decisions.  My surgeon seems to think that if the MRI comes back clean, all I need are annual mammos and regular BSE.  I already know I'm not comfortable with that, I was being seen more often than that before this dx.  Honestly, my main concern right now is how to talk to my friends about this.  Most of them will be fine with it, but one or two will freak out (one of my best friends started crying when I finally told her I was having a biopsy).  From what I've learned so far, it seems like a rather annoying "maintenance" situation that will hopefully go no further, but it's up to me to be vigilant.  Is that a fair assessment?

Leaf, I'm curious, I've been lurking around here for a few weeks now and see your posts frequently on several threads and you always seem so knowledgeable.  I'm not really sure how this works.  Are you a moderator for these forums or just really well informed and active on this site?  I'm especially impressed with the links you provide to research papers, etc.  Thanks to you and everyone else for being so willing to share information.

-Tonya

Hi Misty

If you had to ride this roller coaster, at least you're in good company. This site is a reality check.  I've opted for bilateral prophylactic mastectomy for My LCIS for 3 reasons.  I have fibrocystic breasts that seem to palpate differently each month.  I'd be a wreck about each new bump.  Secondly, I like the thought of cutting my chances of having to go through chemo and radiation by 95%.  Finally, I have very good insurance now but don't want to be a slave to my job for the insurance.  Good luck in all your thought processes.   This site has been a great sounding board. Carol

Actually, I'm scheduled for June 11th.  Minimal presurgical anxiety thanks to this board and keeping busy right up to the day.  I'll let you know after-the-fact.  Carol