Pleomorphic LCIS and Research

OG56

Pleomorphic LCIS and Research

OG56

Hello Sisters,

My BS from Sloan Kettering is interested in beginning a study on Pleomorphic LCIS. If any of you would be interested in having them study your past tissue samples, please PM me and I will discuss it with you.

When she called it scared me, until she said she called for research reasons. She did tell me that some places are now approaching this type more like DCIS. Hmmmm, I think we should all particpate if we can and have them hurry up and find out how to treat this little bi---.

Hugs,

Linda

Anonymous

Hi Omaha Girl

I was just about to post on the PLCIS thread to say I guess I am joining the club.  Yet again another club nobody wants to join.

Please count me in.  I will send you a PM

Thanks Cathy

OG56

I feel somedays (like today) that no one has an answer to any of this bulls---, and I am sick of hearing (oncologist) that they will support me in any decision I make regarding keeping boobs or not keeping them. Why the hell can't they tell me what to do??? Who the hell ever heard of Dr's leaving it up to their patients LOL A long time ago when I was a nurse in a hospital people used to come in and when they needed to sign their surgical consent forms, they would say to me " I don't know what the Doc's doin he's just fixen me up!" sometimes I wonder if stupid isn't better, ignorance is bliss? I know it really is not (don't I?).

Ummm sorry for the rant but I just feel more than a little annoyed today after my visit to the oncologist.

leaf

I would be really annoyed too.  You are going to them for their expertise.  When they don't give you even a hint of guidance when you want it, that is hard.

My oncologist is the head of his department at the hospital at which I work.  He gave a lecture which compared oncology to looking inside a dark, windowless room, with only a flashlight.  You can only understand little parts of the whole situation. It sounds like they often give patients choices because there are so many unknowns.

I'm sure its much harder when there are so few people with PLCIS, and it is a newly developed category.  So, even if many people had it, you wouldn't have had the time to see if a treatment really worked.

I'm so sorry that my sisters are in this situation.

OG56

Are there only 3 of us with pleomorphic LCIS? I guess I thought there were more. We are indeed rare aren't we. Does anyone know of any sites besides here and Komen where I might rustle up some tissue samples?

macksix6

Omahagirl I had a bilateral mastectomy as a result of extensive PLCIS. I could obtain slides/information from my doctors. PM me where to have the information sent.

trishm01254

do you think my type b dx would qualify?

Minnesota

Hi Linda!

Just back from New Orleans. Count me in! I've PM'ed you.

Eve

OG56

Trish, sorry I don't know what type B is? Can you give me a definition and I will ask?

OG56

I spoke with the Dr. today and let her know that we had between 5 and 11 women who might be candidates for her study. She will tell the powers to be this and will be awaiting permission to start a study. I will let you all know as soon as I have an answer.

Hugs

Linda

Minnesota

Linda,

Thanks so much for letting us know about this study and keeping us updated!

Eve

Anonymous

Linda---could you please ask the doctor doing the study if she will be including any subjects with classic LCIS. Thanks

anne

trishm01254

I think Type B is somewhere between Classic LCIS and Pleomorphic.  Leaf or AWB, do you have any info on type B?

leaf

Well, there's this opinion:

"The cells of classic LCIS, as described above, can also be referred to as type A cells. Type B cells are a well-recognised subtype of LCIS cells, with mildly to moderately larger nuclei showing some increase in pleomorphism. A more recently described entity is that of pleomorphic LCIS (PLCIS). The cells in this lesion show more marked pleomorphism and distinctly larger nuclei with nucleoli. Central necrosis and calcification within lobules are features of note. In a situation analogous to ALH versus LCIS, there might be some difficulty in terminology and practical differentiation between a case of LCIS with type B cells and that of PLCIS. Sneige and colleagues [15] have described type B cells as containing nuclei that are up to double the size of a lymphocyte (type A cells are 1–1.5 times larger), whereas PLCIS nuclei are typically four times larger. These subtypes might represent a spectrum of lesions, but it is possible that PLCIS has different biological behaviour and implications from those of classic LCIS. It is therefore important to recognise and document the presence of this variant." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC314428/

OG56

Hi Ann, Leaf and Trish,

I spoke with Dr. King and she is looking for Pleomorphic, she stated the LCIS study has enough tissues samples from LCIS and PILC. I hope with all these studies going on here in the U.S. and Canada that they will soon have alot more information to give us. I will be having another MRI in Jan. and I am wondering if Sloan will start putting LCIS girls in the high risk groups. 

cornellalum

I am new to this forum, since I just got my path report today after my lumpectomy (for diagnosed DCIS) and it reported both classic and pleomorphic LCIS (but no DCIS).  And yes, I would be interested in helping with a study.  I'm still trying to get a handle on where I go from here, so I'll probably be hanging around for awhile.

OG56

Cornellalum, I will add you to the list of possible donors to the research. I am waiting for her to call me and I am sure she is waiting for the approval from her board to start the project. I am glad that you had no invasive cancers.

Anonymous

Hi Cornellalum

Sorry you have found yourself here, but you have come to a great place with lots of wonderful and very knowledgeable women.

It sounds like you have also been getting different diagnosis which I know can make this very confusing. But it does help to finally know what you are dealing with doesn't it. I have just recently been diagnosed with PLCIS from MRI guided biopsy and am waiting for the results from lumpectomy.  I am curious what your surgeon has given you for treatment options? In my case I was told they have to get clear margins and if they do, my next step would be radiation, which I am really nervous about. If they don't get clear margins, either a re-excision or mastectomy.

Take Care

Cathy

covertanjou

Cathy, How was the surgery?  I hope you are doing well.  I have been thinking of you and your surgery. Sending you positive vibes.  (((((hugs))))). 

 Cornellalum, sorry you have to be here. 

Mary 

Anonymous

Hi Mary

Everything with the surgery seemed to go well as far as I know. Just a little sore now, but most anxious to get the pathology results, which won't be until November 30 unfortunately. So looks like I will be making yet another trip and back in the wait mode. ugh!!

Cathy

covertanjou

Hi Cathy,

The waiting is so awful!!   I am hoping for good results.  It is so frustrating that the treatment for LCIS seems  vary so much.  Now, with PLCIS, it is even more confusing.  Thankfully, your doctor is proactive.

I am glad you are doing okay--under the circumstances.  

cornellalum

Everyone - thanks for the warm welcome. I have actually been hanging around since my initial diagnosis of LCIS from my biopsy in July.  Then, when the second opinion came up DCIS, I jumped over to that thread.  Now, with the LCIS and PLCIS diagnosis from the lumpectomy, I'm back here.  I'm just grateful to not be over on the threads for invasive cancer, you know? 

I have not gotten the final treatment recommendation from my surgeon, since he is taking my case to the cancer board tomorrow.

His preliminary statement was that the issue of getting margins on PLCIS is an unknown, and that there is no "known" role of radiation therapy for either PLCIS or LCIS.  This comes from the head of surgical oncology at an NCI-certified hospital.

So it sounds like I am in the "land of the unknown."  Not promising.

Minnesota

Cornellalum,

Welcome to the land of the unknown where answers are as clear as mud! I had an initial diagnosis of DCIS after the needle biopsy, then DCIS and invasive after the lumpectomy, then LCIS with PLCIS after the mastectomy and they sent all to Mayo Clinic. I had gone thru all the tests in anticipation of chemo and radiation when they got the results from Mayo. A reprieve! No rads, no chemo. But now I'm wondering what to do about the other breast. Fun. We will all be very anxious to hear the opinion of your cancer board.

cornellalum

I just got a call from my doctor regarding the cancer board recommendation for the PLCIS.  He said that the discussion lasted over a half an hour, and they decided that they needed more information from the pathologist before they made a final call.  He said they wanted to understand exactly where the PLCIS was found, and how close it was to the margins.  So it will be next week before I know something.  One thing was interesting - he said that this was the first time he had seen that diagnosis on a pathology report.  So you are all correct when you say it is rare.

Hmmmmm...when I said I wanted to be different, and not like everyone else, this isn't what I had in mind..... 

Minnesota

Cornellalum,

Well my onc said he hadn't seen a case like mine in all his years of practice, and he's not young.

Which clinic are you at?

Eve

cornellalum

Minnesota - I'm in Virginia.  This waiting thing is hard.  So you had a lumpectomy and then mastectomy?  Why did you end up with the mastectomy?

I have learned that we all need to advocate for ourselves, since it does not seem that there is consensus on much in the medical world.  I have gone through major medical issues with my father and daughter, and it is way too easy to get lost in the system if you don't educate yourself.

I have been impressed with how many women on this forum have been proactive in both educating themselves and pushing their medical teams for answers.  It is nice to be able to leverage off other women's knowledge.  I was able to have a coherent, productive discussion with my doctor thanks to my research and reading these forums. 

Now if we could just get the doctors to start reading here.......

Anonymous

Hi Cornellalum

It will be very interesting to see what the cancer board come back with as a recommendation for you and for treatment.  I believe you said in an earlier post that they are not sure if radiation is beneficial, as well as the need to have clear margins. The surgical oncologist that I am seeing has already told me that if they were able to get clear margins on the lumpectomy I had Nov 13 than I should have radiation.  It is so difficult and I think very unfortunate for all of us going through this, to see such varied opinions on things.  But I suppose until they learn more about PLCIS we have to try to make our best guess as to what to do????

Hang in there and keep us posted.

Cathy

Minnesota

Cornellalum,

I really had no choice regarding the mastectomy. My surgeon recommended it because the cancerous area was so large (4.5cm X 2.5cm X 2cm) and they could not get clear margins and my breasts are relatively small. As I explained above, after going in for the lumpectomy (they initally thought the tumor was smaller) they diagnosed a combination of DCIS and invasive cancer. For both of these cancers, the protocol is to remove them. After the mastectomy, the pathologist was still so puzzled about how unusual the cancer looked that he wanted another opinion as to how much of the stuff was invasive and how much was DCIS. I was told this also might impact what type of chemo I would have and that I might not need radiation. So they sent it to Mayo Clinic, and a pathologist who specializes in breast cancer examined it and came up with the amended diagnosis of LCIS and PLCIS, and I was given the unbelievable news that I would need neither radiation nor chemo, since none of the cancer was invasive after all. I have to say that I have, since, let the question waft thru my mind  - did I really need the mastectomy? But in the intervening 3 years, after studying PLCIS and looking thru all the records of my cancer treatment (including the fascinating surgical report in which the surgeon said the extensiveness of the cancer was "striking,") I'm confident they recommended the right course of action. If it had been "only" LCIS, then the treatment could be considered by some as excessive. Now I'm worrying about the other breast - wondering if PLCIS tends toward being contralateral, like plain old LCIS. It makes total sense to me that your docs are revisiting the path report and checking the margins to make sure they were adequate.

cornellalum

One of the questions I asked my doctor on Wednesday is whether he believes that PLCIS is like LCIS in that it is usually multifocal and contralateral, since one of his comments was that you probably couldn't get clear margins on PLCIS unless you did a mastectomy.  So I'll let you know what I hear about that also.  It probably won't be until the middle of next week.

In the meantime, I will continue to enjoy my Thanksgiving holiday, and I hope you all do the same.  In the midst of all this uncertainty and worry, there is still much to be thankful for.

leaf

I was just looking at Pubmed, and saw this in an abstract about PLCIS.

Apocrine PLCIS had significantly more genomic alterations than CLCIS <classic LCIS> and nonapocrine PLCIS.http://www.ncbi.nlm.nih.gov/pubmed/19701073

I didn't realize that apparently there are different types of PLCIS - apocrine and nonapocrine.