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
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formykids Joined: Mar 2009 Posts: 73 |
Oct 28, 2009 02:07 pm
formykids wrote:
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 Diagnosis: 7/8/2009, LCIS, Stage 0, 0/0 nodes |
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Oct 28, 2009 04:23 pm, edited Oct 28, 2009 04:37 PM
by OmahaGirl
OmahaGirl wrote:
This Post was deleted by OmahaGirl.
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leaf Joined: Dec 2005 Posts: 5,944 |
Oct 28, 2009 04:47 pm, edited Oct 28, 2009 05:00 PM
by leaf
leaf wrote:
This Post was deleted by leaf.
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Oct 30, 2009 06:18 pm
OmahaGirl wrote:
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? Linda ( add bilateral LCIS to my diagnosis)
Diagnosis: 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR-, HER2- |
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macksix6 Joined: Apr 2009 Posts: 74 |
Oct 30, 2009 09:06 pm
macksix6 wrote:
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. |
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trishm01254
Joined: Jul 2009 Posts: 8 |
Nov 5, 2009 08:08 pm
trishm01254 wrote:
do you think my type b dx would qualify? Diagnosis: 7/29/2009, LCIS, 1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2+ |
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Minnesota Joined: Mar 2009 Posts: 178 |
Nov 7, 2009 12:35 am
Minnesota wrote:
Hi Linda! Just back from New Orleans. Count me in! I've PM'ed you. Eve Diagnosis: 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- |
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Nov 7, 2009 09:04 pm
OmahaGirl wrote:
Trish, sorry I don't know what type B is? Can you give me a definition and I will ask? Linda ( add bilateral LCIS to my diagnosis)
Diagnosis: 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR-, HER2- |
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Nov 9, 2009 08:42 pm
OmahaGirl wrote:
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 Linda ( add bilateral LCIS to my diagnosis)
Diagnosis: 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR-, HER2- |
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Minnesota Joined: Mar 2009 Posts: 178 |
Nov 12, 2009 01:23 am
Minnesota wrote:
Linda, Thanks so much for letting us know about this study and keeping us updated! Eve Diagnosis: 5/2006, LCIS, 4cm, Stage 0, 0/1 nodes, ER+/PR+, HER2- |
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awb Joined: Aug 2005 Posts: 2,764 |
Nov 13, 2009 11:17 am
awb wrote:
Linda---could you please ask the doctor doing the study if she will be including any subjects with classic LCIS. Thanks anne "I don't know what the future holds, but I know who holds the future"
Diagnosis: 9/5/2003, LCIS, Stage 0, 0/0 nodes |
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trishm01254
Joined: Jul 2009 Posts: 8 |
Nov 13, 2009 04:57 pm
trishm01254 wrote:
I think Type B is somewhere between Classic LCIS and Pleomorphic. Leaf or AWB, do you have any info on type B? Diagnosis: 7/29/2009, LCIS, 1cm, Stage 0, 0/0 nodes, ER+/PR+, HER2+ |
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leaf Joined: Dec 2005 Posts: 5,944 |
Nov 13, 2009 05:35 pm
leaf wrote:
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/ If you're going through hell, keep going-Winston Churchill
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Nov 15, 2009 07:05 pm
OmahaGirl wrote:
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. Linda ( 5-09 Bilateral Pleomorphic LCIS)
Diagnosis: 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR-, HER2- |
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cornellalum
Joined: Nov 2009 Posts: 3 |
Nov 19, 2009 04:37 pm
cornellalum wrote:
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. |
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OmahaGirl Joined: Jul 2008 Posts: 348 |
Nov 19, 2009 09:24 pm
OmahaGirl wrote:
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. Linda ( 5-09 Bilateral Pleomorphic LCIS)
Diagnosis: 5/30/2008, IDC, <1cm, Stage Ia, Grade 1, 0/4 nodes, ER+/PR-, HER2- |
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formykids Joined: Mar 2009 Posts: 73 |
Nov 20, 2009 07:52 am
formykids wrote:
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 Diagnosis: 7/8/2009, LCIS, Stage 0, 0/0 nodes |
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covertanjou
Joined: Jun 2009 Posts: 153 |
Nov 20, 2009 04:33 pm
covertanjou wrote:
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 Mary
Diagnosis: LCIS, Stage 0 |
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formykids Joined: Mar 2009 Posts: 73 |
21 hours ago
formykids wrote:
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 Diagnosis: 7/8/2009, LCIS, Stage 0, 0/0 nodes |
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covertanjou
Joined: Jun 2009 Posts: 153 |
5 hours ago, edited 5 hours ago
by covertanjou
covertanjou wrote:
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. Mary
Diagnosis: LCIS, Stage 0 |
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