Pleomorphic ILC
Comments
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Hi Ann,
We are elite indeed. I read your post with maximum interest; our cancers seem so much alike, except I am PR negative. You are right, worrying doesn't help. I've stopped badgering my caregivers for stats they just can't give me and are meaningless anyway. I was diagnosed 3 years ago. I'm on Femara, dealing with all the pain in joints and muscles; it's a constant reminder. Each day I breathe in deeply and appreciate the fact that I am alive. I can do that now. I've been slow in recovering emotionally and physically.
Each time someone posts here on the pleomorphic ILC thread it's like I've found a cyber sister. I will be thinking of you all and checking back. I hope any survivors out there will post and give us some inspiration and hope.
Thanks for posting, Ann. I hope you'll come back again and again.
Gitane -
Hello All,
keep learning little bits and pieces about my diagnosis, mostly from things I read on these boards. So today, I called my onc. and found out that my BC is pleomorphic. I also have a slight auto-immune issue and asked if there was a correlation between that and getting cancer, or cancer recurrence or the pleomorphic thing. It is all speculation, but the auto-immune thing certainly does not help. I have my last round of chemo on May 16. 4 rounds of T/C. It has not been very easy. I am glad it will be over ......and have to fight the fear of recurrence and begin to live again. Thanks. Victoria
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ILC Sisters,
Pepperpot, congratulations on 2 years NED this month.
NancyNY, congratulations on being 4 years NED this month.
Victoria, I see we both turn 60 this year. Only one more week and you'll be through chemo! Hang in there. -
I too am pleomorphic ILC but am a triple negative, which is unusal. My oncol. thinks it's a genetic. He also didn't make a big deal out of being pleomorphic and just said it was aggressive and the cancer would be treated aggressively. I'm looking at a year of treatment but oncol. says "I can look forward to a positive outcome and it's curable". Just have my first infusion of chemo yesterday.
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Rovergirl, You have come to a good place. The ILC ladies here are wonderful. I hope your treatment goes well. Keep in touch, as there are so few of us pleomorphics out there, and it's nice to have someone to talk to.
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Any other ILC ladies who are triple negative?
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That's a good question. I hope others who know the answer will come on board and share. I am double negative, and there are very few of us as far as I know. In fact, my onc was so sure I was PR + he rechecked it. Triple negative, I just don't know.
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Jodian is triple negative ILC. She doesn't post on the ILC board, though, just the mets boards (she has bone mets and a new baby--diagnosed while pregnant).
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I posted the ILC question on the triple negative board maybe I'll find other ILC's there. Feeling a little lonely being one of the few triple negatives plus my clinicial trial treatment schedule is different. In reality, it is what it is I guess. Being triple negative definitely limits my treatment options but at least I have options.
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I remember my onc saying to me when I asked so many questions about my unusual form of bc, "You can't change what it is." I know I can't change it, I just want to understand what I can about it. That's just normal. I hope others post, Rovergirl, and help you fill in some of the blanks.
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Hmmmmm ....what does multifocal mean??????
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Multifocal means more than one tumor, except that the tumors all arose from the same tumor (they're not several primaries).
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Hi all. I am just new to this board, and thanks everyone for all the info posted. I had multifocal tumors (three) and had a lumpectomy first, then the 2 other tumors were discovered and a mastectomy was recommended, so had the mastectomy three weeks after the lumpectomy last December, no lymph nodes involved, and I did not have any hormone treatments as I asked if it was influenced by hormones, and was told no, and also that I didnt have her 2 ,but no one mentioned the words "triple negative" so the only treatment I had was the mastectomy and four rounds of AC chemotherapy. I was quite reluctant to have the chemo, but got told that without it I would probably be ok, but that 67% of women would survive without it and 33% would die, so I opted to have the chemo. The tumors were grade 3 and stage 2A Anyone on the boards know when statistics are used, are they based on the grade of a tumor, or type of tumor or the person's age, or what? Also I wondered about the triple negative, that I'm reading about, and if you do not get offered hormone treatments does it mean the tumors were triple negative. I just got asked if I wanted to participate in a trial with a drug which I think used to be used for arthritis and imflammation in the body, it was called something like celexob, (but cannot remember exactly).I am finished with all treatment now, and feel great, but forgot to ask my oncologist these questions, so anyone have any feedback, it would be greaatly appreciated. Thanks to all for the posts and God Bless and hugs to you all. Mary
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Hi Mary, First of all, although none of us want to be here, we welcome you with open arms and hope that we will be able to help you through all this information gathering that must be done. It is a very good prognostic sign that you had no lymph nodes involved. I am not sure how to answer your questions without knowing if your tumor(s) expressed estrogen receptors (ER), progesterone receptors (PR), and/or overexpressed Her2. Do you have that information? If not, you can call your oncologist to get it. If either ER or PR are present on your tumor, you should be treated with an endocrine therapy. If your doctors told you that hormone therapy wouldn't help, you probably don't have these receptors. If you weren't offered Herceptin, you probably are Her2 negative, which is also a good prognostic sign because it means you do not have this growth factor pathway activated in your tumor. The drug you are talking about is probably celecoxib (Celebrex) which is an NSAID. I am taking it, also. My oncologist recommended it, and I am very glad to be trying it as I have heard good things about its efficacy in fighting cancer. I don't know the specifics about your trial, or about its use in triple negative bc, so I can't help you there. Hopefully others will come along who know more than I do who can help you out there. Clinical trials are usually good because of the increased attention you get as well as the contribution you are making to bc research. Of course, you are the only one who can decide what's right for you. Since you posted here I'm assuming you have lobular breast cancer, probably pleomorphic since you chose this thread. Is that right? If so, you are part of our very small group. We will have to keep in touch. I hope you are recovering from your chemo, YUK, I remember it well. Lots of love and support to you. Write back when you can.
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Hello fellow pleomorphics. I want to share that I had the Oncotype DX test done on my tumor. This is three years after diagnosis, but Genomic Health assured me that the tissue on my core biopsy slide could be validly tested. Looking at the report, there were some things I knew and others I didn't. My ER which was "strongly positive" by IHC is only 8.3 by RT-PCR, far from being "strongly positive"! This was quite a surprise and a disappointment. OTH it may explain my good response to chemo. My PR which showed "no staining" at all on IHC showed 5.8 by RT-PCR, which is at least very mildly positive. Since mildly positive has a much better chance of responding to Femara than no PR according to the BIG 1-98 study, I was happy with this info. My Recurrence Score was 23. I expected it to be higher, actually. Still it is higher than any other pleomorphic I've read about on this discussion board. I was glad to get this information. It doesn't change anything, but I feel good about getting it.
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Gitane, thanks for sharing that. Interesting how the ER/PR measurements came out so differently. I wish the ER/PR analysis had been available when I had my Oncotype done last August (I scored an 18, BTW).
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Hi everyone I am from Brisbane Australia. I am very happy to have found this site and have read quite a bit about my Breast Lace.
I started taking HR 2 years ago, and am also taking 400mg of Celebrex per day for Arthritis. I turned 50 last year, have a great partner called Michael and 2 children, who are 21 & 18.
I was recently diagnosed 2nd June 2008, with Invasive Pleomorphic Lobular Carcinoma Grade 3+ in the right breast. I had a Mastectomy and Level 1 Sentinel Nodes (2) removed on the 20th June 2008, which came back positive. I am scheduled for Theatre on the 17 July 2008 to have Level 2 Bulk Dissection of Lymph Nodes. My journey to date has been a fast one, only now really realising how rare this Breast Lace is! The reason I have named it "Breast Lace" is because I do not like the words Breast Cancer, and when I was first diagnosed the Specialist told me the Tumor looked like Spagnam Moss, which is a lacey looking plant. I have no idea at this stage what my status is regarding HER 2 etc, but do know that my Breast Lace is ER and PR positive. I would love any feedback from anyone who can add anyinformation as I need to be armed with some more information to make further decisions. Does anyone know how many woman in the world have IPLC? I have been told only 10% of BC is IPLC? Is there anyone from Australia on this site? Please feel free to make contact with me. Thank you for taking the time to read this and regardless of where your at Healthwise I send Love and Healing to you all. I look forward to hearing from you.
Donspink
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Hi, Donspink. Welcome, and glad you found us. There aren't many of us IPLC out there. Actually the 10% statistic is cases of ILC in general, all subtypes. Pleomorphic only accounts for .5-1% of those cases from what I've read.
I've been told by many docs, and so have others here, that IPLC is no more aggressive than a grade 3 IDC. The important factors are the tumor size, lymph node status and receptor status. There's a possiblilty that you'll be HER2 +, because a percentage of IPLC are. If that ends up being the case, then you'll get Herceptin along with your chemo.
I know there are other Aussies on this site, although I don't know if we have anyone on the ILC board who's from down under. You might want to start a new post over on the Just Diagnosed board and ask who else is from your area.
When do you see the oncologist to plan out chemo and hormone therapy?
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Hi Donspink!
I have sent you a Private Message. Go to MY HOME to retrieve it.
There are quite a few Aussies on this site and I have sent you details of our Australian Forum.
Hope to see you there.
Any other Aussies want to join ..just PM me.
jezza
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Does anyone know what the "K1-67" value means? I believe it has something to do with determing the aggressiveness of the cancer. My Oncol. just said my cancer was aggressive and I recently read on one of my reports a KI-67 value.
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Hi there Nash, thanks for your update! My tumor was 2cm but that was after surgery. When I had the core biopsy done (I had 4 sections taken) they said the tumor was around 3 1/2 cm. It seems to keep changing in size! I won't be talking to the Oncologist until I have had my Level 2 Nodes taken out. Presuming I will be having Chemo/ Rads and also Hormone treatment, but won't know what The Breast Teams plan for me is until the next operation is over. How long have you had PLC?, how old are you,were you on HRT prior to diagnosis?, what treatment have you had to date? Thanks for the suggestion of the Newly Diagnosed Noticeboard. Donspink
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Hi, Donspink. I was 38 (almost 39) at diagnosis a year ago. Took birth control pills on and off since I was 21. I had surgery, chemo and rads, and am now on tamoxifen. My tumor was 2.7cm. The core biopsy said it was 1.2cm, the MRI said it was 5 cm, and it ended up being in the middle as far as size. I have a lot of pleomorphic LCIS in the breast as well, but I ended up just having a lumpectomy.
Rovergirl, I don't know a lot about KI-67 other than it's an assay that measures how fast the cells are dividing, and the assay gives an S-phase number. The higher the KI-67 and S-phase, the faster the cells are dividing (like a mitotic rate) and thus the more aggressive the tumor is.
The lab that did my path didn't do KI-67 and S-phase, and when I asked why, the surgeon said that the numbers don't give as much prognositc information as they used to think.
Do you have the mitotic rate of your tumor off of your path report? It's part of the Scarff-Bloom-Richardson grading scale, along with nuclear grade and tubular formation. A mitotic score of 3 is high, and I'm wondering if your's correlates with your KI-67.
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Hi Nash, thanks for your note. I was wondering how you are one year down the track? Do you know how many of us there are in Australia? Sorry about the questions but being able to make informed decisions is important. I am going back to surgery on the 17th July want to have as much info before that I can get my hands on, so as not to have to keep on going back for more ops.
donspink
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Hi, Donspink. Jezza has the info on the Aussie Forum for you, and she sent you a private message about it. If you log-in to the site and go to the top of the screen, there's a tab for private messages and you can retrieve the message there.
I actually feel pretty good one year out. I felt pretty sick going into diagnosis (I knew I had cancer, gut-feeling) and I have to say I feel better now than I did before starting treatment.
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Just want to pop in and say hi and welcome to you, Donspink. Getting a cancer diagnosis is so hard. I'm glad you found us, so at least you have others who can share with you what they know. That's not much when it comes to PILC specifically, but we'll do our best. Nash is the expert in that department as you can see. I am 60 years old. However, you are probably premenopausal, so that gives you more in common with the younger ones.
We have something in common; I started taking HRT 2 years before I was diagnosed with PILC. Your tumor is ER/PR positive which is great, you will probably respond well to the hormone therapy. What are they telling you about chemo? Wishing you the best on that lymph node surgery. Please come back and let us know how you are doing.
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Nash -
Thanks for the info on KI-67. I did not see that listed on my path. report I read it on my oncol. notes after my last appointment. I know my specifics are pretty unique - ILC, ploemorphic variant, triple negative so having a high KI-67score is no surprise. I'm having neo.adj. chemo and so far I'm doing well on taxol with very minor SE, have had 5 infusions. I will have an MRI in two weeks which will be a mid-treatment evaluation. I'm anxious to know to the status of the tumor size. So far my oncol., Dr. Overachiever (as I like to refer to him as) has been bang on in regards to my treatment so I'm hoping the MRI proves him right again.
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Rovergirl, Would you be kind enough to tell me about Sunitinib? I'm wondering if it is only for trip. negs, or would work in others. What is it exactly, how does it work, etc. What's it like for you to take it? Hope you are doing fine with your treatments. It's great you are getting a mid-treatment evaluation. At least you will know how the treatments are working so far. I like the idea of weekly infusions. I had AC every two weeks and it was rough. As you can see above, I found out from the OncoDX test that my ER is a lot lower than I thought. I guess there is no relationship between ER by IHC and ER by RT-PCR. I won't see my onc until end of July, then I'll ask about that. I'm an "almost" trip neg and didn't know it.
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Rovergirl, thanks for your reply, and glad the clinical trials is going good. Yes I think that name was celexicob, but I did not take part in the trials. What is pleomorphic, I do not know what that is. My cancer was ductal I think, and not lobal, so I apologize if I am on the wrong board. Sorry for delay in replying to you, but I am not very good at the computer and lost where I was!! I hope you are feeling good and all your treatment is working well, and thanks for your help and support. God Bless. Mary. Dx Nov. 2007.Age 56 Multi focal grade 3 stage 2A
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Gitane -
I am participating in clincial trial #6488 at Seattle Cancer Care Alliance. They have a basic blurb about the trial on their website (www.seattlecca.org) but it doesn't give a lot of info. In a nutshell, sunitinib is a drug that is currently approved for certain cancers (kidney and gastrointestinal) but not BC. The trial is for locally advanced and inflammatory breast cancers. They are hoping that the drug will cut off the blood supply to the tumor thus reducing the growth of the tumor. I take a daily oral dose of sunitinib once a day and that's it. Like all drugs they have a list of scary SE but so far I've only experienced an increase in my blood pressure. In addition to the sunitinib the trial has changed the order of chemo drugs - I receive 12 weekly infusions of taxol and then 15 weekly infusions of AC (without the sunitinib). I also receive a lot of diagnostic testing when it all said and done I will have had 3 Pet-scans, 4 MRI's, 3 MUGA's and 3 EKG's. The trial is relatively new and I am only the 8th participant. Two other woman who have completed the trial had their tumors reduced by 75% - sounds good to me. For more info on sunitinib check out www.sutent.com
Rovergirl
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Rovergirl, what a pioneer you are. I will look into the info on the links you posted, thanks. With all the tests they are running, you can be sure that they are keeping a close eye on you. That's really great, best state-of-the art treatment, and care. Please let us know how you are doing with this treatment and with BC in general. Hugs, Gitane
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