Pleomorphic ILC

cathmg · December 2009

Hello, I have read these posts with interest, and it definitely has made me feel less alone. I was diagnosed w/bc in July 2008, and had a double mastectomy in August 2008. Pathology reported multifocal, pleomorphic ILC, 5cm at the largest spot, with no lymph node involvement. The left breast was clear, but I just felt like it had to go. I don't regret that decision, and what's done is done. I had 4 rounds of Taxotere/Cytoxan, and am currently done with year one of Tamoxifen. I had silicone implants placed in April 2009.

It seems like everyone around me has moved on, and just look at me as totally well. It's over for them! I think about it everyday, and live with the fear of recurrence. Like the surgeon said, "there are no guarantees" (that it won't come back.)

I would welcome any new info about the Pleomorphic part-all I've found are some pretty downer articles on the web. My oncologist said the cells are aggressive, but lymph node status trumps that fact. That's all that was said about it.

Feeling very well these days, all the best to everyone.

Gitane · December 2009

Hi cathmg, I hope you are doing well. I just wanted to share with you that I came across a set of slides that compared the different subtypes of BC, like ductal. classical lobular, solid lobular, pleomorphic lobular, medullary, papillary, etc. The slides were done by a pathologist who works closely with OncotypeDX (Genomic Health). He used their technology to measure ER, PR, Her2, RS scores, etc. for all the different types measured by their company, (lots of them!) then he compared them. What was really interesting is that pleomorphic was not different from the other types. It was really encouraging for me to see because, like all of us who were diagnosed with pleomorphic, I read the gloom and doom articles. It is obvious now that those authors picked out the most out-there highly proliferating, her2+, p53 overexpressing, node positive cases to highlight. I don't think we are all that hugely different. If you are interested in seeing the slides let me know and I'll let you know how to find them on the internet. Don't worry! HUGS. G.

Anonymous · December 2009

Hi cathmg, I too am glad that you are doing well. I was also interested to see that your doctor told you that having no nodes involved trumpled the PILC thing. I will be having bilateral with sentinel node done in January. Like you, my problems are in my right breast, but I have decided to let the left one go as well. It is always reassuring to hear of ladies who have done the bilateral with no regrets. I still keep questioning my decision, and probably will until I actually have the surgery.

Gitane I would love to read the articles that you describe. Can you let me know how to find them on the internet? I welcome any encouraging news about this PILC!

Take Care

Cathy

Gitane · December 2009

Cathy,

I sent you a PM.

G.

cathmg · December 2009

Hi there Gitane,

thanks so much for your reply. I would be interested in getting that link that you mentioned that shows different types of bc including PILC.I see my oncologist at the end of January for my year and a half visit (since surgery), and I am going to ask him for any new info on Pleomorphic bc. I am doing very well these days-full of energy and zest for life. I went through terrible anxiety and depression for some months after the diagnosis, but happily recovered from that. I have two teens, a senior and a freshman in high school, and it of course was hard for them, and my husband, too. I used to be nervous about going to the dentist--ah, I didn't know how small my worries were then! Hope you are well.

cathmg · December 2009

Hi For My Kids-

I'm new to this whole discussion board/ posting, so bear with me! I was just curious--it sounds like they diagnosed PILC from a biopsy, since you haven't had your surgery yet? I haven't really regretted doing a mastectomy on the left, since ILC has a slightly higher chance of showing up on the other side as well. I also personally know of at least 2 people who went through diagnosis and treatment twice, since they got another cancer in the ok breast. I think it has made my reconstruction (silicone implants) very symmetrical, and I never have to wear a bra anymore. Small consolation, but something nonetheless. Hang in there, the surgery is tough, but I don't think about it much now.

Anonymous · December 2009

Thanks Gitane for the website, very interesting.

cathmg, I had an excisional surgery done to try to get clean margins on PLCIS that was found on MRI. When they did the excision they found two areas of PILC within the PLCIS. The surgeon did not get clean margins so therefore requires more surgery. It could have been done as either lumpectomy or mastectomy. I am choosing bilateral because I am small breasted and after having 6cm removed already there really isn't a whole lot left to remove. I like the idea of never having to wear a bra, like you say, small consolation, but still something.

Take Care

Cathy

suzieq60 · January 2010

Hi Girls,

I just found out today that I had pleomorphic ILC too. My BS had not given me the path report and I asked my GP today for a copy. Mine too was contained in "extensive lobular carcinoma in-situ". Must have been going bad from the middle.

The difference between mine and your dx is that mine was HER2+. I found an article that described four patients with HER2+ pleomorphic lobular with mets who had an amazing response to herceptin - so that was one good bit of news except I had negative nodes. Although one of them was node neg and got mets 2 years later and still had an amazing response to the treatment.

I also found out that there was no lymphvascular invasion which is also really good - better prognosis.

I'm angry that the BS didn't order an MRI after mine showed up on a mamogram - there could be something in the other breast. I guess we can look at that later after chemo.

I'm just so lucky that mine was found so early - only 11mm. It was elongated 11mm x 6mm x 7mm - which my DH calculated to be equivalent to a 5mm round lump.

I had found out about pleomorphic from internet research and asked my onc yesterday if he knew if I had that type. He said most HER2+ ILC is pleomorphic but at least now I have that confirmed. Great being in the rare 1% of bc patients isn't it. He said it wouldn't change my treatment though because of the HER2 status I still had to have chemo.

suzieq60 · January 2010

One thing I forgot to mention was that I was also very highly hormone receptive 95% ER+ and 90% PR+.

They did grade mine with a total of nuclear grade + tubular formation + Mitoses as 9 which ends up as overall grade 3.

Anonymous · January 2010

Hi suepen

I wonder if there aren't alot more women out there that are PILC? At least thats kind of what I keep thinking. The more and more they learn about breast cancer, the better able they are to differentiate one tumour from another. Was your LCIS pleomorphic as well? My PILC was found within PLCIS. So it makes me wonder if the two go hand and hand? It seems like there are still so many that haven't heard of PLCIS, which makes one think that there may be women who have been misdiagnosed with DCIS when in fact they have PLCIS. One of the pathologist at one of the hospitals I was going to had never even heard of it, let alone diagnosis anyone with it. I am happy to say, he knows now. I sure don't like the idea of having what they think is a rare type of breast cancer, as if being diagnosed with any kind breast cancer isn't enough. I am also nervous about being the guinnea pig for what the treatment should be.

Cathy

suzieq60 · January 2010

Hi Cathy,

I got a copy of my path report yesterday and it was pleomorphic. Got an absolute fright when it said there was extensive LCIS (surrounding the tumour) as well - regular type not pleomorphic. When they talked about the margins they referred to the actual tumour but no mention of if there's any LCIS left. So I rushed to the doc this morning and asked for his interpretation of the results and he reassured me and said basically when they cut it out there's a mess and there could be a mix of stuff. As long as they say there's no "involvement" around the margins they have cut it all out. I hope so.

At least you're not HER2 as well. It's interesting that you are grade 2 as pleomorphic is usually high grade as mine was. I topped the grading score getting 3 in all areas - the max!!! DH not happy about that but I am so lucky it was so small - that's all I can think. If my screening hadn't been until next year, I'd be stuffed, as it wasn't palpable. So lucky the mammogram picked it up. We have bi annual mammograms over here once you reach a certain age.

Sue

Gitane · January 2010

cathmg,

I sent you a PM. Sorry I was so late in reading that you wanted this info. When is your appointment with your oncologist?

G.

alberta939 · January 2010

I have ILC - pleomorphic type, size 6.2 cm, ER 100%/PR 80% positive, mBR score 6, HER2/nue 1-2+ (CEP 17 ration 1.1), LCIS present, Grade IIB, lymph nodes negative (but with isolated tumor cells).

I had a mastectomy. Surgeon said chemo and radiation.

Oncologist now say I only need radiation. I am wondering what is the best, more aggressive treatment for me. Feeling unsure.

Debra16 · January 2010

Hello Suepen,

I am a fellow aussie and also have PLC and am one month post surgery (lumpectomy, node negative). I'm at the stage where I need to make a decision about treatment and am so confused about what is the best course of action for this specific type of cancer. Being quite rare, I am not keen to go on the recommendations made so far, based on BC across the board. Can anyone help? I have a complementary medicine background and have already started taking heaps of supplements to assist. This is a real test for me, and confusing more so because I'm getting two very different points of view. Any advice would be appreciated.

Gitane · January 2010

Hi alberta939, Welcome, even though I'm sure you'd rather not join this club. Feeling unsure is a good description of how we all felt, I think. I was more than "unsure", I was a mess. Did your oncologist give you any reasons for not recommending chemo? It seems to me chemo is in order given the information you are sharing here. Are you getting radiation because of the isolated tumor cells, or is there another reason? Perhaps a second opinion would help you. A major breast cancer center would be the best place to get one; they would have more experience with your rare type of breast cancer. Please come back and share how you are doing. Hugs, G.

Gitane · January 2010

Hi Debra16, You have joined a very exclusive club here with your pleomorphic ILC. Making treatment decisions is not easy, I sympathize. You have some very good prognostic indicators with a smaller sized tumor (1.3 cm), small as lobular cancers go, negative nodes, Her2 negative, hormone receptor positive. Where it gets a bit tricky is the fact that it's grade 2 and pleomorphic subtype.

Since you live in Australia, I don't suppose you can get an OncotypeDX test. It would give you a better idea of how your tumor cells might respond to hormonal and chemo therapy. Without that, it's hard to know what's best. What are your doctors recommending? What are you thinking you might like to do?

Anonymous · January 2010

Hi Debra16 and alberta939 welcome to this rare group. I am recovering from bilateral mastectomy on Jan 12 and awaiting pathology results which I will receive Feb. 1. My surgeon, prior to surgery felt that I may not have ot have chemo or radiation, but of course wouldn't know this for sure until after surgery. My preliminary on sentinel nodes (4 taken) was negative. However, I am to see oncologist after all the results are in and I have a feeling he may look at this differently, although he wouldn't say anything until he has all of facts in. I am hoping that they both agree on what treatment is required, otherwise it will be decision time again.

cathmg · January 2010

Hello all, and welcome new ladies.

Justformykids-I hope you are healing smoothly from the bilat. How are you doing?

Gitane-thanks for the link. I go to see my onc. in 11 days, but who's counting?

I went for an pelvic US last week because of wacky periods and being on Tamoxifen. I was really afraid they might find something on my ovaries because of the nature of lobular cancer, but everything was AOK.

Have a great day everyone

Catherine

Gitane · January 2010

What good news about the ultrasound. I know what you mean about worry. 11 days, we'll be waiting for news. (but who's counting?) Hugs, G.

Gitane · January 2010

formykids, I hope your pathology results are good. I have a feeling they will be with such a small tumor and negative nodes. It's encouraging that your surgeon thinks you won't need chemo. I will be thinking of you on February 1. Please let us know how it goes. G.

suzieq60 · January 2010

Hi Debrah,

I didn't have a choice regarding chemo as mine was HER2+ grade 3.

What does your surgeon say? Do you know what the LVI (lymphovascular invasion) in your pathology was. Mine was "absent" which means it's not likely to spread locally.

Really radiation and hormone treatment is probably the way to go, which is the normal treatment for node neg hormone receptive cancer. Chemo is only given in node positive cases and HER2+ node neg ones.

Sue

suzieq60 · January 2010

Cathy, Good luck on your pathology. Why does it take so long?

nash · January 2010

Sue, I had chemo and was hormone postive, node negative. I had a large tumor at a young age, with an Oncotype of 18. Four oncs said I had to do chemo. So it's not only the node positive and/or HER2 + girls who get chemo.

Debra16 · January 2010

Hi Suepen,

The surgeon offered all 3 treatments, but gave me stats based on all BC regarding the percentage of improved expected survival. She seemed happy enough with the combo hormone and radiotherapy treatment, suggesting that chemo might offer another 5%. I just wondered if PILC might require a slightly different treatment, given what they know about it and how it behaves. I'm also thinking of having an ovarian ablation, being pre menopausal (46 yrs old) to help reduce estrogen, which is elevated. I feel quite comfortable with just the two forms of treatment, but don't want to find out later that this cancer, being quite rare, would be better treated with chemo. I guess there are never any guarantees, but it's a big decision that I would like to make being fully informed.

Thanks Gitane and Formykids - appreciate your response. Suepen, which part of this beautiful country do you live in? I am in Brisbane these days, originally from central Victoria.

suzieq60 · January 2010

Hi Debrah,

Go with what your doctor tells you. Who was she? I'm in Brisbane too and am going to see Melinda Cook on 4th Feb as I didn't like my surgeon - Neil Wetzig. If you had her please tell me she's nice, I need someone nice for long term follow up and a second opinion on my pathology.

BTW I live in Newmarket and have made friends with another BC patient who has the same oncologist - we have regular lunches. If you're on the Northside maybe we can meet up.

Also, I can ask David Grimes (my onc) next week if he would recommend chemo for your case ie pleomorphic.

Sue

Debra16 · January 2010

Hi Gitane, not sure what an OncotypeDx test is, but the hormone receptor positive makes it clear that it will respond to hormone treatment at least. I asked the surgeon what she would do if it was her!!! She said combo of hormone and radiotherapy, so I feel a bit more reassured about that now. Thanks so much for your response. We really are an elite group, aren't we?

Debra

suzieq60 · January 2010

Debra,

We don't have the oncotype dx test here. You can send a sample to the US but it costs $6000. I asked my oncologist about it but as I was HER2+ve I had no choice anyway. It's a test that determines if you will repsond to chemo.

Sue

Anonymous · January 2010

I am hopeful that a small tumour, node negative is thought to be a safe enough reason not to have to have chemo. But it would appear that this nasty disease seems to have its own set of rules. Smaller not necessarily meaner better or people that are node negative going on to having recurrences. I think we all try to be cautiously optimisitic and of course there are no guarantees.

I am from Canada and we don't have the oncotype dx test here either, but apparently there is a study that I could be part of, that would not cost anything, otherwise it would cost approx. $3,600.00. But if I were to go into the test, I would be randomized a to whether or not to have chemo dependant on how I were to score. Something to think about I suppose. It sounds like the test is very helpful in making a decision on how best to treat each breast cancer on an individual basis, because they all are so different.

I am recovering quite well physically from surgery. Much better than I expected. Emotionally it is more difficult. I still have not been able to look, and don't see myself doing so in the very near future. Thank goodness I have someone who can check the incisions for me, I am such a wimp!

I have to wait so long for results, because I have to travel again 1000 miles to get them, and the doctor does clinics seeing patients for follow up on Mondays. So I'm sure she will have results prior to that, but the hospital policy is results are never given over the phone, good or bad. They had a lady faint one time, and was not discovered immediately.

It is so interesting to see the different opinions and treatments that others are receiving. So please continue to share. I will let you know what my medical oncologist thinks once all the facts are in. At the moment my surgical oncologist, thought if nothing changed and my results were the same as what they are right now, I would not require radiation or chemo.

Cathy

Anonymous · January 2010

Hello Everyone,

I am so glad that you are all sharing such valuable information. Since PILC is so rare, it is great that there is a place where we can all find support. Cathy, I think that the study you are referring to is the TAILORx study. I, like you was told by the surgeon that I would most likely not need chemo. The oncologist on the other hand advised that I sign up for the study and have the oncotype test run. I think that the range for the randomization is from 11 to 25. My oncotype was a 24 and I was randomized to chemo, which was fine by me because I was so close to the top of the range. I think it is worth participating because it does give you more information and if you disagree with what the study wants you to do you can opt out. That is just my opinion. I hope you are all feeling and doing well!

Susan

Debra16 · January 2010

Hi Suepen,

Thanks again! My surgeon was Jenny Gough, who came highly recommended from anyone who knew her (her father also works as a surgeon in this field), onco is Dr. Inglis - another disturbingly young lady at the RBH (I'm in the public system), but she's lovely and very patient in explaining things. I am also on the northside, used to live at Newmarket myself, but now in Grange. How funny we connected here on an overseas discussion board, yet we live so close! Let me know when you're having your lunches - if I'm local I'd love to meet up. I work as a rep, so out on the road most of the time and therefore have some flexibility. Is it ok to post an email address on here? I have also contact the Choices program at the Wesley - thought it might be good to gather information and get involved in the yoga and stretching classes etc. Look forward to catching up! Debra

Pleomorphic ILC

Comments

Categories