Pleomorphic ILC

Hello ladies,

I'm looking to compare notes-I saw my onc a couple weeks ago and read the path report for the first time (was too devastated early on). It read "tumor bed is 2.4 cm, extending to 4 cm"

Did anyone else have this type of description? My onc said that lobular cells "Indian file" and spread out instead of forming a lump.

Hope everyone is enjoying summer!

Catherine

Hi Sue,

thanks for your reply- Your response to chemo is impressive-good to hear. There's so little info about PILC-it is frustrating. I would like to think that my 4 cm measurement maybe isn't so bad as a 4cm solid tumor. Who knows??

Congrats on almost a year out!

Catherine

To Sue and Others;  My onc said not to be concerned with the Pleomorphic description but to be more concerned with the Staging and Grading. I recently found an encouraging piece of research that I thought all ILC survivors should read from BreastCancerSource.com...please read on.  Although the research is almost two years old, I haven't read anything that says otherwise.

Overall survival best for invasive lobular breast carcinoma patients

Published date :

Dec 19, 2008

MedWire News: Overall survival (OS) is significantly better in patients with invasive lobular breast cancer (ILC) than in those with invasive ductal breast cancer (IDC), study findings suggest.

There have been conflicting reports on whether the different histology of IDC and ILC affects patient outcome in terms of OS and disease-free survival (DFS).

To investigate, Darius Dian (University Hospital Munich, Germany) and colleagues analyzed data from a large German population of breast cancer patients. Their results are published in the journal Archives of Gynecology and Obstetrics.

Breast cancer is histologically heterogeneous, with IDC accounting for the majority of invasive breast cancers (75-80%).

The study population included 2058 women with invasive breast cancer. Patients with metastatic disease and those who received adjuvant hormone or chemotherapy were excluded from the study.

The median duration of follow-up was 57 months (maximum 583 months). A slightly higher proportion (80%) of patients in the study had IDC, when compared with the general population, and the remaining patients had ILC.

Using multivariate analysis, tumor histology was found to be a significant prognostic indicator for OS. Kaplan-Meier survival analysis showed that IDC patients were 27% less likely to survive, compared with those with ILC (hazard ratio 0.73). There was no statistical difference in DFS between the two histologic subtypes.

The researchers suggest their results, which contradict earlier findings, may be explained by the more favourable tumor biology of ILC.

" The fact that differences in DFS are not statistically significant could be attributable to the fact that ILC initially presents in a more diffuse pattern leading to increased rates of positive margins after breast conserving therapy," they write.

"This phenomenon, in turn, could lead to more frequent local recurrences, which have a negative impact on DFS. Since the local disease in invasive breast cancer is secondary concerning OS, the more favorable tumour biology of ILC could still ultimately lead to better OS."

The team concludes: "Considering the increasing numbers of patients with ILC both in Europe and in the USA it will be interesting to follow these patients in the future with regard to DFS and OS. "

Source :

Current Medicine Group

Thanks for your post! I have tried to PM you several times but I can't seem to get it to work. Can you PM me so that I can respond?

I'm a newbie so please excuse as I learn the lingo.

I've been researching and following this board for a few weeks but have been so confused since DX, didn't understand how unique we are or even the particulars of my diagnosis. It's been a roller coaster ride for sure.

My recent experience has underscored how important it is to follow your gut and ALWAYS seek, at the very least, a second opinion.

Routine annual MA on 04/22/10 showed something suspicious on my left breast, so more pics and an ultrasound led to biopsies of "1.7cm" area, a 1.3cm enlarged node and an even smaller area found by the surgeon I had been referred to, during guided ultrasound needle biopsies.

I wasn't that concerned, as I had been so diligent about getting my yearly MAs, and figured we had caught it early since last year's MA was clear. Wrong!

Path of 05/04/10 reported, on larger mass, "Infiltrating Carcinoma, Favor Lobular", for smaller mass, "Invasive Ductal Carcinoma" with no malignancy on the node. The surgeon ordered MRI with contrast of both breasts, which bumped the larger mass to 2.3 and only noted bio clip present in smaller mass.

Surgeon pushed for surgery ASAP, said I was a candidate for either a lumpectomy with radiation or UMX without rads but possibly chemo, quickly showed me the Stats and said it was my call but she was comfortable with whatever decision I made. I was leaning toward UMX (don't ask me why) and with her pushing I scheduled my surgery for 05/14/10.

This was all happening too fast and red flags were going off for me BIG Time, so I postponed surgery until 05/21/10, and a few days later told her I wanted to get a second surgical opinion. She was dismissive (yet another red flag) saying the surgery was pretty straightforward and the time to seek second opinions would be when I was consulting med oncologists. I pushed nonetheless and she provided the name of her associate, located in a nearby town, and then said, "I could also give you the name of very good surgeon down at Yale, but she's a cold hearted bitch." I held my ground and said I would like the name of the "CHB". She looked stunned, turned red but provided the name I requested.

The "CHB" was actually warm, caring and more knowledgeable than surgeon #1 so I went with her, and thank God I did!

She retrieved the biopsy slides and said she wanted Yale Path to reexamine. She subsequently reported Yale determined both areas to be exactly the same and I had ILC. She also told me ILC are very difficult to detect with MA and the fact that the mass was against my chest wall meant my breast covered the area, so there was no detectable lump or thickening. She said due to this, I likely had this even though prior MAs looked clear and she often finds ILC masses to be much larger than they appear through diagnostic testing. Remember her mentioning 5 cm. Given this she recommended UMX with immediate reconstruction.

On a side note, the Dicom disk I brought with me of MRIs with contrast of both breasts, she relayed were virtually useless since the resolution was so poor. Apparently, the MRI machine used was a (3?) and the latest and the greatest MRI machine is a (5?). I asked if we should repeat MRIs but she said insurance would only cover it 1X annually. But I want others to know about this, when going for MRIs.

It did take time for me to research reconstruction options and then have the 2 surgeons coordinate a date they would be available and reserve an op room at Yale for 10+ hour surgeries anticipated. 

06/29/10 underwent a skin sparing simple UMX with simultaneous Diep Flap Reconstruction. Did OK and discharged at 5:00 pm on 07/04. The 4 drains were removed about 10 days later and I was instructed to stop taking the preventative antibiotics. Within 48 hours I knew something was wrong and by 72 hours had developed a bad infection, at the suture site surrounding the area where my nipple once was.

I was not prepared for the results of my surgical Path report and am now kicking myself for not having a BMX, but the option never crossed my mind. Path reported, PILC, 6 cm X 2.2 cm, 0/1 node, grade 3, Stage IIB.

Unfortunately the infection stalled my treatment 3 weeks but it has finally resolved and I've now begun the process of consulting with med oncologists.

The first spent little time with me, said I had an unusual and interesting case, and he wanted to bring it before his tumor board. He didn’t offer a concrete plan as to what he would recommend for treatment.

He knew I was seeing another Onco at Yale the following week and heading to Memorial Sloan Kettering this week, on the 25^th. He said, “Good, the more opinions the better. Please have them cc me as to their recommendations.”

In contrast, this past week at Yale, with 2^nd med onco, he was VERY thorough and between examination and consultation in a conference room with my family, spent close to 2 hrs with me!

He said he was surprised an Oncotype had even been ordered and even though it came out 14 = Low risk, he wasn’t comfortable relying on the test, due to size of my mass, area it was found (against chest wall) that it is grade 3 and PILC. He explained the Oncotype was based on clinical trials beginning 20 years ago of women with Stage I and II but tumors averaging 2 cm.

Thus he is recommending chemo (2 kinds), 4X, 3 weeks apart, and suggested I make an appointment with a rad oncologist post chemo, then would recommend hormone suppressing treatment for 5 years.

It will be interesting to hear what med onco at Memorial recommends.

Having a nipple is the furthest thing from my mind right now, so I will hold off having phase 2 of reconstruction until I finish chemo and possibly rads.  

This is all so scary and overwhelming. I have learned we need to advocate for ourselves and question every step of the way.

I’m so happy to have found all of you as we gain strength from one another.

Hugs to all.  

Eve -

It is so nice to read a story where you listened to your body and commonsense rather than just committing to what one doc's idea of dx and tretment plan.  Good for you that you stood up for yourself to get more comprehensive answers!

I'm curious, though.  Is the Yale doc treating the grade 3 pleo any different than a grade 3 ILC dx?  Does he give you any additional information about it?  My oncs haven't really addressed it.  Their first priorities are that my cancer is BRCA.  But I keep wondering about the pleo aspect and if it's more aggressive because of it.

Hi AnacortesGirl,

Thanks for responding. Yale didn't go into that with me and I didn't ask at the time. From my research, it's my understanding they treat PILC like the more aggresive forms of IDC but the grade is also taken into consideration.

I guess you and I are double wammied.

I will specifically ask your question when I'm at Sloan Kettering on Wednesday. I will also ask Yale when/if I see him again, which is likely unless Sloan recommends something very different. Yale is closer, (45 minutes versus 1.5 hrs), I liked his thoroughness and the facility is beautiful.

Do you mind me asking how old you are? I'm 54 but underwent a complete Hysterectomy when I was 42 and had been on HRT (1st 12 years high doses) which I think is responsible for this, but Yale said no.  

A Belated Happy Birthday to you AnacortesGirl!!!

Interesting about that study. I was on HRT for 12 years that was both Estrogen and Progesterone (Estratest H/S). I had a very low libido post Hysterectomy and since I was married at the time and complained they changed me from Ogden (think it was called to Estratest).

Divorced since 2006 so if I had been divorced back then, who knows.

I'll post when I get more info for you soon,

Hugs 

Sorry Eve that you have to join,but there is great support here.I am also Pleo,but my onco,doesn't seem to address it.I also go to Sloan.ILC is so sneaky,I went every year for 22 years then bingo enlarged nodes ,MRI found it in breast.Sloan surgeon didn't think I had to do mx(small tumor,lots of nodes).Please let us know how you make out at Sloan.I had my surgery 1 year exactly before you.

Hi Amig1,

Yes ILC is so very sneaky, which makes it so scary. Like you did what I thought I needed to do to play it safe via Mammos. Since they already know ILC is difficult to detect on Mammos, seems to me Mammos and US could be alternated annually for everyone? 

Wild you had your surgery exactly l year before mine! Also wild your were diagnosed exactly 1 year before I had my yearly Mammo, which started this nightmare! I put I was diagnosed 05/04/10, since that was the date I got the Path report with the biopsy results!

Also am wondering how your BS was able to recommend no MX since with ILC the size is often larger than it appears on a MRI? Was it showing up as much smaller but when she got in there it was 2cm?

In my case MRI showed 2.3cm but as I mentioned before my BS was anticipating it to be larger, and it turned out to be 6cm! 

Did you undergo chemo and/or rads? If so, I wondered how long it took you to get to Slaon from your home? Trying to figure out if Sloan would make sense for me, since it is 1.5 hrs from here.

Eve;

We all understand your anxiety surrounding your diagnosis, the final path report and the multiple decisions that have to be made. It sounds like your gut has helped you tremendously along the way.  My favorite book and I've mentioned it numerous times on this website is called..."There's No Place Like HOPE" by Vicki Girard.  She says in it...'speak to those on the road coming back'  All of us here are on that road, so please continue to reach out with whatever questions you have..you can pm any of us and ask us anything, I promise.

With regards to the ONCtype, my onc said the same thing that it wasn't reliable for our staging.  The bottom line is Stage 11B is early stage breast cancer and you have no lymph node involvement.  That's great news.

As far as chemo goes, you'll get through it.  I had 4 ACs followed by 7 Taxol which was then switched to Abraxane because I developed neuropathy.  I just finished #10 today....only 2 more left.  A number of people have pre chemo shopping lists on this site but if you'd like, I'll send you mine, so you don't have to scour the site for it.

Anyhow, dream of wellness tonight (another of the HOPE quotes).

Fondly, Heather

Anna: The pleomorphic diagnosis goes out the window with us. The HER2 status is much more important. My onc said that most HER2 lobular cancers are pleomorphic anyway. Sorry that you are not hormone receptive too as I feel good that we can throw other drugs at it - not that I like taking Arimidex. I do hate being in such a minority though. Good to hear you are finished with the herceptin. I have 5 more after today's treatment.

Sue

I have been silent but following this site since diagnosis. Finally coming to terms with it and receiving good news. I got my oncotype back today and I want to share it with you to give hope to other's newly diagnosed. Inspite of my pleo diagnosis, my Oncotype came back at 12! Every bit of good news helps. I hope that each newly diagnosed pleo out there gets one bit of good news, it helps so much.

My thoughts and prayers with each of you who give me hope and strength.