Pleomorphic LCIS

cindala

The link to the Swedish study is http://www.nature.com/bjc/journal/v92/n1/full/6602250a.html.

The Italian study by V. Eusebi, et al is quoted in an article written in 2004 by Michael A. Cohen, MD MSKCC "Cancer Upgrades at Excisional Biopsy after Diagnosis of Atypical Lobular Hyperplasia or LCIS at Core-Needle Biopsy:Some Reasons Why   http://radiology.rsna.org/content/231/3/617.full

Hopefully helpful in the decision making process, Maria

maria63

So here is my latest news:

I had my lumpectomy on July  28; my BS went away on vaction and came back on August 17. I met with him on that date, and he told me that I have pleomorphic invasive lobular carcinoma (PILC) and upgraded my dx to Stage I. He said that the right breast could not be saved and highly recommended a mastectomy and reconstruction. And due to the nature of ILC of putting the other breast at risk, he also recommended to remove the left breast. After 5 months of tests and waiting for results and knowing that I cannot go through this again, I took his advise and scheduled a double mastectomy for August 25th at MSKCC.  I just want it out of my body and hope against hope that it has not spread to the lymph nodes. He will also perform a sentinel node biopsy on the day of my mastecomy.  

I know the days ahead will be quite difficult, but I must try all I can to kick cancer out of my body and life! I wish I didn't have to travel this road, but since I'm here, I might as well fight the fight and do my best, and leave the rest is in God's hands!

Thank you all for the information and sharing your experience! May God bless you all!

KellyMaryland

Maria, I'm so sorry for this diagnosis. Know that I will be thinking of you often as you prepare for surgery this week.  I'm happy to answer any questions you might still have about it.  You can do this!

All the best,

Kelly

leaf

I wish you didn't have to travel this road either.  You didn't ask for this, but you can get through this.  I haven't had mastectomies, so I can't help you in that regard, but please know I am thinking of you and hoping the best possible outcome. 

cindala

Dear Maria,

Believe you are in very good hands; MSKCC and the Creator.  I will be thinking of you and wish you a successful, easy surgery and smooth recovery. 

All the very best to you,

Cindala

maria63

Thank you Cindala, Leaf, and Kelly for your prayers and encouraging words! Until next time....

trudymae

Hi I am very very new at this -  I have found this thread to be extremely informative.  I have not been able to find anything like it in Australia,  I was recently diagnosed with PLCIS after a hook wire biopsy two weeks ago.  My BS tells me that this is "frontier" stuff.  My initial response was to agree with the suggested "off with them both" surgery but have had a rethink as I want "the girls" to be there for my 60th - in three months time!  I am meeting with my GP tomorrow to set in place a monitoring regime until I can come to terms with a double mastectomy (and reconstruction).  I have had a love/hate relationship with my rightie for over 30 years and it has been multilated due to a number of lumpectomies way back then. Having read through all the posts on this thread I do not feel alone with this decision.  Thank you.

cindala

Dear Trudymae,

So glad you found this site.  It took me about 10 months to make my decision to have BMX for PLCIS, Dr's said I could take my time.  But got there in the end, so it is up to you and of course your Dr. to decide.  Please stay in touch, whatever you decide.

KellyMaryland

Welcome Trudy!  Sorry that you are now dealing with this.  Enjoy your 60th birthday! With this diagnosis you likely have time to weigh your options.  All the best, Kelly

Anonymous

Trudy------since it is non-invasive, you can take your time to make decisions, research, get 2nd opinions if you want, or just let it sink in a bit. Enjoy your birthday!

Anne 

Cherr

Hello. I am 45 and this is my first post on the discussion board.  I had a lumpectomy and sentinel node biopsy in late July and the surgery went well. I had clear margins and the nodes were negative. My concern is that the pathology reports from the stereotactic biopsy and the lumpectomy were different.  After the stereotactic breast biopsy I was diagnosed with DCIS but after lumpectomy I was diagnosed with PLCIS and LCIS.  The doctors (BS and RO) want to treat the PLCIS like DCIS and are recommending radiation and then taking Tamoxifen for five years.  Has anyone with PLCIS had radiation and/or taken Tamoxifen?   Any information you could give me would be appreciated. 

beacon800

Cheer, I read a paper by a doctor who recommended treating plcis like DCIS, which included lumpectomy, radiation and tamoxifen. However I do not think this is standard and some doctors might just do the tamoxifen along with close monitoring. I had a bilateral MX but that is cause I had many other risk factors including poor family history. With plcis everything is very muddy and controversial. Sorry not to have a clear answer for you. Btw, DCIS can look very similar to plcis or LCIS on pathology, however there are ways to be definitive about the diagnosis. Do you actually have all three cell types? In that case radiation and tamoxifen is appropriate.

KellyMaryland

Cherr,

sorry you find yourself in this position.  if i'm not mistaken, in europe plcis is treated like dcis with lumpectomy and radiation. keep us posted.

kelly

Cherr

Beacon and Kelly, thank you both for your comments.

Beacon, I am not sure about the DCIS diagnosis but the PLCIS and LCIS diagnosis appear to be accurate. The pathology report from the stereotactic biopsy indicated high-grade DCIS with luminal necrosis but did not mention LCIS or PLCIS or that an E-Cadherin stain was used. The pathology report for the lumpectomy indicated that an E-Cadherin stain was used to confirm the PLCIS diagnosis; this report also mentioned that I had LCIS, classical type. 

Kelly, I will keep you posted.  I will likely go ahead with radiation therapy to make sure that any remaining abnormal cells in my breast whether they are PLCIS or DCIS are destroyed. I am not sure if radiation would have any effect on the LCIS, classical type.  I am hoping this is the right decision and that everything goes well.

Thanks again.

maria63

Update from Maria63

I had my lumpectomy on July 28th; met with my BS at MSKCC on August 17th. He advised me that I had invasive pleomorphic lobular carcinoma and PLCIS and the right breast cannot be saved and recommended a double mastectomy. He said most likely there is something going on in the left breast too. I followed his advice and had a double mastectomy on August 25th and started reconstruction immediately. Did not wait a moment longer to get the cancer out of my body.

The surgery went well and thank God there was no sentinel lymph nodes involvement. Also I had nipple and skin sparing mastectomy which I truly hope will not increase a chance of a recurrence. The drainage tubes were removed a week later, and oh my Lord, but when the nurse pulled out the right one, the pain was so immense; I was in tears. No trouble with the left one though at all.

I've had two fills so far and the feeling after is quite uncomfortable. Last Sunday, I began to have lots of pain in the chest wall. Massage and a warm shower help a lot in alleviating the pain. Today, it's a different location: under my arms. The expanders seem to be pulling on my pectorais major muscles and the skin where the nerves and blood vessels are awakening. Again, massaging help and getting busy with every day chores. It's when I sit or lie down, that I feel it the most.

In the meantime, I'm wating for the Oncotype DX test results and have a meeting with a medical oncologist on September 28 to determine whether I need chemo and/or tamoxifen. I'm praying that my score will be low and will not have to worry about a recurrence any time soon. Boy, I thought with the mastectomy I wouldn't have to do either, but was I mistaken.

I have read somewhere on the net that chemo benefits only 10% of patients so I'm not sure if I would want to go through with it.  

Revised Diagnosis 8/17/11: Stage I ILC and PLCIS; no evidence of lymphovascular invasion

(extensive PLCIS w/ intermediate to high nuclear grade nuclei)
Diagnosis: 6/21/2011, LCIS, 6cm+, Stage 0, Grade 2, ER+/PR+

Sherry57

I had been dx with pyeomorphic lobular carcinoma and had a lumpectomy with another surgery to make sure the margins were clear, which was confirmed. I had chemo and hormonal therapy. But they are pushing the radiation. Which I am afraid to do due to a possible secondary cancer. Not sure if I should do it or just wait and see. My onc says I have a 25% chance of getting it again without radiation. I am so sick of having to think about this crap all the time. I just want to forget about and go on with my life. But how can you. I feel deep down inside that I should not do the radiation. But I have had 5 friends and family (3 have just died within the last 3 months) One just died tonight. Feeling very down and afraid.

Crescent5

Oh Sherry {{{hugs}}} This crap really sucks, doesn't it? I am so sorry for your losses.

cindala

Dear Sherry,

This is a very hard time for you, in so many ways.  Was your pleormorphic Lobular in situ or invasive?  And you mention a possible seconday cancer...Perhaps you need a second opinion, esp since pleomorphic is quite rare.  

Wishing you sunnier days ahead.

Cindala

Sherry57

My dx was invasive. I may have passed the time period for the radiation. But I feel I made the right decision. It may come back and bite in the rearend. This is tuff.

KellyMaryland

Hi everyone.  It seems like eons ago that I was diagnosed with PLCIS.  Today I am exactly one year out following a PBM.  Just wanted to send a big thank you to you all for seeing me through a very dark time.

All the best,

Kelly

Crescent5

Kelly, I thought of you on the 26th. If it weren't for you, I'd never have made it through these past few months.

I thought I should post something about my experience in this thread. My intent isn't to scare anyone, but since this is an info gathering thread abour PLCIS, I should let you girls know. I had my PBM 2 weeks ago, and 2 small invasive spots were found. My gutt told me that PLCIS was nothing to fool around with. Both tiny tumors (<cm) were missed. Neither were in the area of concern that was biopsied, but they were in the same breast as it.

What I'm taking away from this cannot be stressed enough: Go with your gutt.

I did not have high odds. I did not have family history. I could very well have gone along with close monitoring. But the P in PLCIS really bothered me. I did not want this surgery, but I felt I needed to get it done. I waited a year to be sure. I don't know when those 2 spots would have been seen had I not gone through with the surgery. I had very dense breast tissue, so it who knows? I'm really bummed that I had ILC, but I am really glad it's gone. Lymph nodes clear thank Goodness.

Trust your instincts, ladies.

beacon800

So glad you are feeling well Kelly! It is quite a journey isn't it?



Crescent your story is amazing. Agree with you 100% - they don't really have a handle on PLCIS and "go with your gut" is extremely good advice!! Glad your active approach saved you from any worse outcome.

Minnesota

I' ve been away from this thread a long time and thought I'd check back. Crescent, what can I say? So glad the surgery is behind u now. And Cindalla and Kelly, hi! And Sherry and Maria, I hope you're doing better now. Hi to Beacon and Cher. Anxious to hear how everyone is doing now with the decisions you made. I continue to be happy with mine and so grateful for the support of all on this board. Don't know where I.d be without you guys!

KellyMaryland

Hi Minnesota!  Doing well here.  I also feel great and continue to be really happy with my decision.  All the best, Kelly

grandmaof4

Hello Ladies. I've been away from the Boards for awhile, just sort of muddling through all the mammos, ultrasounds & MRIs. Oncologoist thinks Evista must be doing it's job since I haven't had to have further biopsies in a year. Have next round of mammos later in May. I have a question though, that I wondered if any of you might know the answer to. In the area where I had my lumpectomy (w/o clean margins), I've developed a tenderness, almost feels like bruising. There's no pain and it doesn't actually radiate out under the armpit but it does tend to follow that line. Wondering if I should be concerned. In some ways, I think I'm almost ready to consider the bilateral mast just to get it all behind me. I'm such a wuss though!

Anonymous

grandma---my lumpectomy spot has never quite felt normal, and I think that is normal! The meds must be working for me too, I haven't had to have any further biopsies in over 8.5 years! (took tamox for 5 years, have been on evista for about 3 years; that reminds me,. I need to refill my script..

anne 

grandmaof4

Wow, that's enouraging! Thanks.

I've never been able to find anyone else in my geographical area (central Illinois) with this or even doctors who have treated it. Would love that connection.

Kelly49

I am so confused. I have been dx LCIS just 2 weeks ago. The doctors and nurses act like its going to be so easy to treat and that I have the best chance of a good prognosis. It sounds more like I have to accept that there's a good chance this could turn into something really bad sometime over the next 10 - 15 years. Sometimes I just want it to be over - have the BM and move on but I am told that it's too drastic.

dobie

Oh Kelly, I feel your pain. This is such a confusing diagnosis and likely you will get a wide variety of opinions in what to do. I think the important thing to remember is not to hurry in making any decisions about surgery. It may be hard to live with the idea of this risk but still your risk may be manageable. The general statistics I have read is 1% chance per year of developing invasive cancer or 30% overall. That is still a 70% of not getting it. Some people can live with this, but some cannot. Risk may be different for you based on your specific pathology. Get as much information as you can about your diagnosis and get copies of all your pathology reports. Talk to your medical team about monitoring that includes MRI. I used my dx as a wake up call and motivation to look at my life style and decreased alcohol intake and upped my exercise, lost weight and increaed my veggie/ fruit intake. Best wishes and peace to you as you come to terms with this new reality.

bluepearl

P;eomorphic lobular tends to be more aggressive and is treated like high grade IDC...so it is good that yours is still non-invasive!