LCIS

123penelope

I had a core needle biopsy-diagnosis ADH. Then I had to have an excisional biopsy.and was diagnosed with stage 0 LCIS breast cancer. Have read up on this and the more I read about this the more confusing it get's.  I do not like the medical oncologist that I saw.  Am thinking about getting a second opinion.

KellyMaryland

Hi Penelope. Sorry that you've gotten this diagnosis. Yes, it is all very confusing as not much is clear about LCIS. I'd agree with getting another opinion- I think it's important to feel confidence in the team overseeing your care. We're happy to answer any questions you have. If you have time to read through some of the LCIS threads it may help.  Thinking of you!

Kelly

Anonymous

Penelope---It has been over 7.5 years since my diagnosis of LCIS. I had suspicious microcalcifications on mammo; LCIS was confirmed during my lumpectomy. I was given the 3 standard options: 1) close monitoring 2) close monitoring with tamoxifen 3) BPMs. I had been watched pretty closely already due to my mom's bc (ILC), and all my docs felt bilat masts too drastic for my situation, so I went with high risk surveillance and meds. I took tamox for 5 years, continue with alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, and have been taking evista now for over 2 years. It is a difficult choice between  surgery and monitoring/meds, but it is a very personal one, which only you can decide. But since LCIS is non-invasive, there is no rush--you can take whatever time you need to research, get 2nd opionions, and to just let it all sink in. You want to make sure that the decisions you make out of knowledge, not fear. PM me if you'd like to talk more.

Anne

123penelope

I am going for a 2nd opinion. Then I will decide what to do, I won't keep going for opinion after opinion, right now I am taking tamoxifen. Wth all of the risk's, is that even right for me. This is still all so confusing to me.  Should just stop reading up on LCIS, the articles I've read are so different and the doctor's can't even agree.

leaf

I think its important that you make your decisions in your own time and own way.  It sounds like you're thoroughly looking at all your choices.  I hope you can find a doc that makes you feel comfortable, to help with the uncertainties that come with this diagnosis.  Sometimes we can't have the 100% best doctor, but I hope you find a doctor that is 'good enough'.

123penelope

Just wanted to say Glad I went for a 2nd opinion at the cancer treatment center, I know it was the right decision for me because making sure I'm doing everything that can be done.and traveling a little farther is worth it to me.

fight_now

Hi 123,

Last Monday (May 2, 2011) I underwent a bilateral mastectomy for LCIS found in right breast.  End of Feb was the first mammogram with microcalcifications.  Then 2nd mammogram, 10 days later, core needle biopsy with ALH dx.  10 days after that surgical biopsy with upgrade to LCIS.  May 2nd, just a week ago, nipple sparing bi-mastectomy with immediate reconstruction with tissue expanders.

I chose not to live with the uncertainty or to take chemopreventive drugs.  I am 46 and in good health, so I figured now was the time to attack it, before it attacked me.  By no means am I suggesting you do what I did, the treatment you choose has to be right for you.

I left the hospital using only ibuprofen for pain--mainly because the other meds made me soooo sick.  My breasts are actually the same size as before the surgery.  My husband wondered if they had even removed them--believe me, they did, I feel it.  Nipples are in good health.  No invasive cancer found, but more areas in the R breast had LCIS with lobular and ductal involvement. Left breast was clear.

The majority of my 'trauma' was from NOT knowing what to do and waiting for answers that weren't there or waiting for results.  Healing from the mastectomy right now seems like the 'easy' part.  Right now I feel such a relief.  I do not feel like I lost my breasts, thanks to my excellent surgeons.  I do not have to go through that emotional trauma.  I just have to now get these pesky drains out!!  I should have them out by Friday!

For me, the hardest part was everything BEFORE the mastectomy, now it is time to heal and move forward.  

Like I said, this might not be for you.  I've had great support from family and friends and a great BS and PS. 

Stay positive and be proactive.  I spent so much time looking up LCIS my head was spinning.  I did get in contact with another woman who has a blog who helped me so much through everything.  I don't know what I would have done without her. www.arleneflick.blogspot.com

Since she did so much to help me, I would be happy to pay it back and answer any of your questions, or you can read her blog and get some insight or contact her.

My thoughts are with you.  You'll find a way--I know it.

123penelope

Thanks for your responses. Am glad I went to where I am now. It was the right decision, Have in the past just felt so rushed, go here go there, LCIS is still so confusing to me, Now I am waiting to hear from the doctor this week, sound's like no more surgery. Am still taking tamoxifen-those side effects still worry me.

vmudrow

fight_now - I checked out that blog - it was great.  A year ago on May 6 I had bilateral masectomies for ALH, nothing else was found - but I too was tired of the worry and didn't want to take Tamoxifen.  Glad you are feeling ok. 

123penelope - good luck with your decisions!!

MWS

Hi there... I did the same thing you did... but my surgery was not nipple sparring... and so that is another surgery I will do that this summer.... I think the bilateral was the best thing that i did... the drains are awful... but when they come out, you will feel better....I am 41 and felt the way you did... nice to hear your story!

cathwarner

I have recently been diagnosed with LCIS, doctor discussed putting me on meds and 6 to 12 monthly mammograms. I am not sure but I feel that at present a bilateral masectomy may be an option for me I too don't know if I can just wait and see, feel very worried about just being monitored think I would feel more at ease with them removed, then again things could be fine and I may never develop cancer what a decission to have to make HELP

Cath

vmudrow

cathwarner - it is a hard decision - it kind of depends on your personality and your risk.  Because of my risk (genetic counselor figured it was  40%) and I am a worrier and I didn't want to take Tamoxifen, my surgeon agreed that she thought a bilateral masectomy was a good decision.  I didn't have LCIS, but ALH, a step below ALH.  If you are seriously thinking about it ask about a nipple/skin sparing masectomy with expanders.  It has been a year since my surgery and my risk has dropped to less than 5%, the surgery wasn't too bad and I have been very happy with the whole process.  If you have any questions I would be happy to help.  Good luck and explore all your options - hugs, Valerie

KellyMaryland

Hey Cath. Sorry that you've got this decision before you.  Some have suggested that this diagnosis can get easier to deal with over time and I'm sure they will come along soon and answer any questions you may have.  I chose the surgical route and am happy to talk with you about it or just listen in general.  I found that I needed to talk about it ALOT and sometimes friends and family tire of hearing it...so please feel free to use this forum to vent, cry, ask, etc.  We're all here for you.

Kelly

Anonymous

Cath----I was diagnosed with LCIS nearly 8 years ago and I also have family history of bc (mom had ILC). I do high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months, took tamoxifen for 5 years and have been taking evista for over 2 years now for further preventative measures--tolerate both meds with minimal SEs. It's not the choice for everybody, but works for me. That's the thing---it's a very personal decision and has to be right for YOU. There is no rush with LCIS since it is non-invasive, so you can take your time to make decisions, get 2nd opinions if you want, or just to let it all sink in.

Anne 

Doreenanne

Cath:  I had a breast reduction sept 10. found out i had alh.  Was put on tamoxifen and alternating mamo and mri every 6 months.  Had mri in jan. had to have 2 biopsies. Turned out to be LCIS. I am a worrier. Another concern for me was i am extremely dense. what is something was there and could not  be seen. BS suggested pbm.  My had was spinning for 6 months, since the alh diagnosis.  I cried so many times, I went through my days numb.  I had the surgery 4/18/11. For me it was the right decision.  I could not spend my days worrying and I know that is what I would have done. Take your time to think everything through.  You will know what the right thing is for you to do.  If you want to talk pm me and I will give you my number. 

Breyonna

Hello,

 I was also just diagnosed with LCIS.  Is this cancer? I don't know what to do.  The doctor only gave me one option and that was to take the tamoxifin which truly scars me.  Also He removed the lump but not all of the bad tissue.  I don't understand what he's doing and he gets frustrated when I ask questions.  I'm also having pain in both breast now. I so confused as to what to do now.

leaf

Is LCIS cancer?  Like almost everything concerning LCIS, there is controversy.  *Most* (but not all) oncologists do NOT consider LCIS a cancer. 

There is not a sharp line between normal cells and cancerous cells.  There are cells that are clearly normal, and cells that are clearly cancerous, but in between there can be a lot of controversy.  Its like looking at a line that is white on one end, and gradually becomes black on the other.  In the middle, do you call it white or black?

Cancer, by definition, means uncontrolled growth.  Many people consider cancers are able to metastasize (travel to other parts of the body).  When the pathologist looks at cells under the microscope, they are dead cells, so (s)he can't *directly* see if they are multiplying, let alone are multiplying uncontrollably.  Cancerous cells are usually more irregular looking.

If your diagnosis was nothing worse than LCIS on your biopsy, he is not doing the excision to remove the LCIS.   The surgeon is doing an excision to help verify that you don't have something worse (i.e. DCIS or invasive) going on in that area.

Even if your surgeon wanted to, (s)he couldn't 'remove all the LCIS' in your breasts.  Why?  Because LCIS usually has no signs that it is there - the only way you can tell for sure that an area has LCIS is by looking at it under the microscope.  So the surgeon doesn't know what places to remove to 'remove the LCIS '.  LCIS usually occurs in many spots in one breast, and is often in both breasts.  This doesn't change its risk though.  *If* a breast cancer occurs later, the breast cancer often is in a spot that has looked totally normal in imaging.  Even if you only have 1 spot of LCIS in 1 breast, both breasts are at increased risk for breast cancer. LCIS is a weird disease.

JanetM

I was diagnosed LCIS and ALH via stereotactic core biopsy along with moderate intraductal hyperplasia after 2 years of follow up mammographies and ultrasounds after finding a fibroadenoma.  Had a fine needle biopsy to confirm that the fibroadenoma was benign.  This year radiologist indicated that left breast was now BIRADS 4 and needed the stereotactic biopsy.  Had lumpectomy on 5/24 and now I am waiting for pathology from that. I hate all this waiting but I know that I am not alone.

leaf

Waiting is awful!  Crossing my fingers for you, Janet M.

JanetM

Thanks. Apparently the surgeon found additional calcifications during the lumpectomy,  I go back to the surgeon on Wednesday and while I a usually a positive person, I have this sick feeling in my stomach.  I'm just putting one foot in front of the other.  I read so much on the internet about LCIS and ALH that seems so contradictory in terms of how it should be treated.

vmudrow

JanetM - you can always get a second opinion  - my oncologist wanted to treat ALH only with Tamoxifen.  Hoping all goes well for you - hugs, Valerie

Anonymous

Janet----I was diagnosed with LCIS almost 8 years ago--had suspicious microcalcifications on mammo, they found more calcs during my lumpectomy, but it was just more LCIS, no invasive bc found. (In 15 to 30% they find something more serious, but that means in 70 to 85% of cases they don't! Big #s, so hold onto that thought!) I also have family history of bc (mom had ILC) which elevates my risk even higher. I took tamoxifen for 5 years , now take evista for further prevention, and continue with my high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. (so essentially I'm "seen" by some method every 3 months, which adds to my peace of mind) Praying you have nothing more found and that you get good results soon.

anne 

JanetM

Thanks for the good thoughts. I am not sure that I can deal with the constant follow up but I will wait to see the results of the pathology and advice of my surgeon who have been seeing for 2 years. 

123penelope

I will be going for my 6th month mammogram check-up the end of June.  Then see BS in July. I'm nervous, the waiting is the hardest.

JanetM

Going for my 2 month surgical follow up in 2 weeks and now I need a hysterectomy.  The fun never ends......

Anonymous

Janet--what did your pathology report say? Are you able to have the hysterectomy laproscopically?

Anne 

JanetM

Surgery is scheduled for August 10th.  Labs confirm that I am post-menopausal but I am still bleeding almost constantly.  Ultrasounds show a number of vey large fibroids and my uterus is the size of a cantaloupe.  Given the size of my uterus it has to be done abdominally.

kimber1

Hello flight! I hope you are healing well. I am seriously considering bilateral preventative mastectomies for my LCIS Dx. Saw Oncology last week and he says ARIMIDEX and also wants me to have a hysterectomy and take the ovaries, and said that PBM would be a possible option that we would discuss. The thought of the drug and all of its side effects scares me more than the PBM.

Worried about whether insurance would cover this.

Also...curious about your immediate reconstruction with tissue expanders.... so tell me more...will you have to have further surgery or procedures?? ...don't they keep expanding the tissue and then put in implants? Or was this a 'one shot deal'?  I'm small breasted so wouldnt need much, ya know?!   What is recovery time?

thank you so much for any information. I am feeling confused and overwhelmed right now and any insight would help tremendously.  

vmudrow

Kimber1 - thought I might help to answer a few of your questions.  Insurance paid for my PBM - and you are further along with LCIS than me - I had ALH (precancerous). The surgery was not bad for me and after 8 weeks I was playing tennis, waterskiing, bike riding etc, with the expanders.   I was barely an A cup before surgery and the PS put in expanders and then I had fills until I said stop - I decided to go to a B/small C - which is how I look in clothes, but my bra size is much bigger 32 DD - because the implants are wide.  Then they exchange the expanders out for implants - surgery was so easy for me.  Let me know if you have any questions - good luck.

Hugs, Valerie

KellyMaryland

Kimber- it's my understanding that most major insurers cover most of the costs of PBM for LCIS.  LCIS is a tricky thing like that....a friend of mine had DCIS and her doctors and her insurance company fought her on BM, whereas there seemed to be no issue for me when I began to think about it...and yet we're often told that it's not so serious which makes no sense. 

I had a PBM in January- mastectomy surgery and placement of TEs.  I did skin/nipple sparing and because I had alot of extra skin (read: sag), I was filled most of the way during surgery and had one fill in the PS's office about a month after surgery.  PBM surgery was, for me, a big shock- took much longer than I thought to feel somewhat normal.  I had exchange (TEs out, implants in) a month ago and that surgery was, for me, really very easy, very minimal pain and thanks to an excellent PS team, great asthetic results.  Am back to exercising, picking up the kids as normal....saving the hauling of laundry baskets up the stairs for my husband still though (may never take back that job!) 

Obviously, I must make the disclaimer here that I'm only telling about my experience and that you have to do what's best for you but I'm more than happy to share any details with you and anyone who wants to either consider PBM or scratch it off their list of options.

All the best,

Kelly

edited to add:  I forgot to say that I'm really happy with the decision to go forward with this.  Am relieved that it's done, yes, but feel very lucky to have had the option.