ILC - The Odd One Out?

Found this cruising Youtube...

http://m.youtube.com/watch?feature=youtu.be&v=ZXfBAGOnv-g

SABCS 2014 - Improved Understanding of Lobular Breast Cancer

Karen - I agree. I think the reason I still come to this site and seek out tests beyond my treatment is that I am less worried about how I got cancer than mets. But I feel those two things may be related. So I keep googling (sigh) and pestering my MOs at each follow up with new studies and any clinical trials I can participate in.

First Wild - This is a very interesting video! Thanks for sharing. Lots of technical information here and most of it went over my head. But I like the bottom line "... perhaps we should consider lobular as a different disease."

The one doc referred to current gene assays as 'stamp collecting.' LOL! I recently had the BreastNext panel done and tested negative for 17 genes including CDH1 and PTEN among others. This test does not include P13-K which I think they mentioned was found in 50% of lobular cancers.

They also talked about the PAM50 test. I've read on BCO about the new Prosigna Breast Cancer Prognostic Gene Signature Assay, formerly called PAM50, that can test for risk of recurrence after 5 years of AI treatment in postmenopausal women. Not sure if the docs in this video were referring to the PAM50 in light of this new study or its original use?

Everything is still preliminary. But it sounds very hopeful in that possibly sometime in the near future they may treat lobular cancer differently. I've always felt that if it is a different disease, maybe there needs to be different medical specialties - or at least different treatment plans based on types and subtypes.

Link to articleFor those of us who have tried to figure out the "why" we got cancer.

Lily, it may have an effect. We know, for example, that smoking is one such effect (and not just in lungs). However, the key thing in this study is the fairly simple observation that if there are many of these cells AND they turn over often, then there is simply a much higher statistical chance that something will go wrong somewhere along the line. It is quite elegant in all its simplicity.

Hi, I hope you don't mind me joining your thread.

I'm in Australia and i have just come across it and I thought I would share my story with you.

I was 37 at DX in July 2014, had a breast reduction instead of a lumpectomy. They thought my tumor was about 6cm, it turned out to 12 cm long and 700g (1.54 pounds).

I have very dense and large breasts, G cup and I felt the very large lump a few day before my period and put it down to the lumps and bumps that I usually get with my period because one day it wasn't there and the next it was. Unfortunately my period went but the lump stayed.

Went of to the GP who was convinced that it was a cyst because of the size of it and that I had only just started to feel it. Off to get a ultrasound, the nurse was really good and explained everything as she did it. Showed my how the lumps are was really fibrosis and what normal breast tissue looks like. At the radiology place I used they have a rule of 2 sets of eyes on all breast tests. The Dr came out and had a look and mentioned that a lot was happening in there and that a mammogram would be a good option. I had one a couple of hours later and was told that it came back clear (any surprise there???) . The Dr than mentioned that he would like me to have a core biopsy, this was 4pm on a Friday afternoon, he said unfortunately I can't fit you into today but If I thought it was anything serious I would make the room for you. He scheduled me an appointment for the following Tuesday. When I was laying on the table boobs out - as you do, a different Dr came in and basically told me he thought it was hormonal and that I could wait 3 or 4 cycles of my period to see if it settled down. Luckily the previous Dr had planted the seed in me and I went ahead with the biopsy. I have since told people who work there that it could have been a very different story 4 months down the track, if I (or someone) was petrified of needles or didn't have a spare $500 that week to pay for the biopsy I could have easily have said no. It turned out that 9 out of 12 lymph nodes were effected and in some extranodal spread present (0.7mm)

I have my final chemo tomorrow and a MRI next week and another appointment with my BS to discuss my options. My oncologist and radiologist want me to have a mastectomy before I start radiation.

I live in regional NSW and my BS only does implants, to look at any other option I'm looking at 6 hrs to Sydney or 7 hrs to Melbourne.... Canberra may be an option for my but none of my specialist who are either based in Canberra or work in Canberra have recommended anyone from there (a little worrying).

I'm leaning towards having my right breast off, having expanders put in, doing the radiation and having my left breast removed and a reconstruction of the both at the same time with implants. I fully trust my BS, I can have it done locally and I figure with implants they will still be sitting up nice and perky when I'm 90. There has to be a benefit to all of this somewhere

Sorry for the long post, just thought I would let you know what happens on the other side of the world.

Cheers

Kylou  - wow, your story illustrates just how insidious lobular cancer can be. I think your story needs to be told to the medical establishment to show them just how different lobular cancer is when presenting, how hard it is to detect, and how easy it can be overlooked. Did they do any other tests on your tumor - such as Oncotype or ki-67?

In my case, they don't know how big my tumor was because it was so elusive on any kind of imaging. During my biopsy they had problems trying to penetrate the tumor. The radiologist used about 3 different instruments and it was extremely painful. The final one he used was like a drill. It seemed like they were surprised at how hard it was. Anyone else have this experience?

On the diagnostic MRI my tumor was at least 5 cm, but the imaging was fuzzy. A local general surgeon at that clinic suggested mastectomy but I was doubtful I wanted to go to my local clinic after the biopsy experience, plus they had been unable to diagnosis my cancer. I had a mammogram there every year for ten years and nothing ever showed up on their images. So, I went for a second opinion at a university breast cancer where the BS suggested trying to shrink my tumor with hormonal therapy before lumpectomy. I had 3 months of hormonal therapy and the tumor appeared to shrink dramatically on monthly ultrasound reports, so everyone was very happy. Just before surgery the radiologist had problems locating the tumor with the wire. He had to rip out the first wire and insert another one. They did a mammogram to try to make sure the wire was on the tumor, but I could tell they were having problems. No one was saying anything. During surgery my BS couldn't get clean margins. I had a micromet in the sentinel node. After the re-excision with close margins, I changed providers to a well-known clinic that is 3 hours from my house. There I opted for a double mastectomy - wishing I had done that from the beginning. The pathology showed margins slightly larger than the ones previously reported during my last lumpectomy. In the end, I had nice, wide margins with no further nodal involvement. They say I have an excellent prognosis.

I didn't have as long a distance to drive as you. For me, the drive was do-able except driving across Minnesota's barren landscape during the winter was at times kind of risky due to sub zero temps and blowing, drifting snow! It sounds like you have a good plan. I had expanders put in (on top of the chest muscle) during my BMX and didn't need radiation. During my exchange I had cohesive silicone gel implants with fat grafting. They look and feel very much like real breasts and I'm very happy with the results. I am approaching my one year cancer free anniversary next week. I wish you all the best with your upcoming treatments - please keep us posted with your progress!

Texas, I'm so sorry to hear of your recurrence. Sending (((hugs))). I hope you don't mind my asking - how did you find out? Did your docs do any scans or did you find it yourself?

BTW, I have 410s MF, too, and they've definitely been a silver lining. Best of luck to you!

Trigeek, I also had adult acne, but zero acne as a teen. After cancer treatment, the acne came back, when I started letrozole/femara. When I checked, I discovered that adult acne in women is often due to excess testosterone (which can happen when you are on femara, since femara blocks the natural process of turning it into estrogen). Like you, I was flabbergasted that no doctor ever thought to investigate my hormone situation, when I showed up with my face and back covered in red boils.

thank you, lots of info there, will read in daytime! I love organic natural peanut butter........

I eat mainly walnuts or pecans but I love peanut butter cups....... also sprinkle a lot of powdered peanut butter on deserts as it has much lower calories than the jars. Oh well. DH gets caramel almond spread that tastes really good but I suspect the caramel is not healthy as its very sweet

The new model from Princeton is very interesting. The newsletter article from Food for Breast Cancer was posted on another thread as well, but without citation, which made me go look up the study to see which parts of the newsletter article were synopsis and which were additions. The study from Princeton does not address or suggest anything that would have any implications for diet/lifestyle. Maybe when this area of research advances further, it will be possible to start looking at such aspects, but they are not yet close to that point.

bc101- Sorry for the delay! I've been recovering from my ANLD surgery. Yes, I found my recurrence. In the shower one day I pushed into my left underarm and felt a lump larger than a regular node, and it didn't hurt (previous cancer was on left side). Within a day I'd had a fine needle biopsy, and the radiologist told me she had no doubt it would come back malignant. The node I found was only 1.8cm and pretty far into my underarm, so my onc was surprised I found it. Pathology from my ANLD showed the one tumor I had outside my nodes (in a little bit of breast tissue next to my implant) shrunk from 7mm to 1mm as a result of chemo, indicating if there was anything else floating around outside the nodes, it's probably gone now (yay!). However, they removed 18 nodes, and 11 contained cancer (almost double the number we thought were involved). The GREAT news is the tumors themselves are only 3mm-8mm, which is very important prognosis wise. Though I'm still stage IIIc, I'm also still very curable! Rads are up next, and they will not hold back. They're going to hit me hard on my entire left side all the way up into my neck. I have an incredible plastic surgeon that was able to patch the implant pocket after surgery, so I still have both 410MFs looking good. I'm very curious to see if the left one will survive rads. Mine are 7 years old, and older implants fare better, so I've got my fingers crossed. Chemo was SUPER tough for me, so hopefully I'll get a break with rads.

bc101- Yes, I am VERY lucky if I had to have a recurrence my ILC was at least considerate enough to return to local nodes and a little leftover breast tissue. The word "local" in my recurrence is the reason I'm Stage IIIC and not IV!

I was diagnosed December 2014, 39 years old. Started period at 16, diagnosed with poly cystic ovarian syndrome which is related to a hormonal imbalance, in my early twenties. Had three children, didn't breast feed, took birth control pills before, in between and after children. 4 weeks agoI had modified radical mastectomy of right breast, and axillary lymph node removal, 1 of 20 lymph nodes affected. So far I know I'll be getting chemo but don't what if anything else. I noticed several of you had ovaries removed, why would that be necessary?

Hivr423 so sorry about your diagnosis.. Maybe one of the other ladies can chime in and tell us why they had ovary removal but it's my guess that the ovaries are the factories that produce most of our oestrogen and so therefore if your cancer was ER+ PR+ then having your ovaries removed would therefore strongly reduce your hormonal levels which is what the cancer feeds off. It is well known also that aromatise inhibitors such as Arimidex and Femara work better for ILC but you either have to already be menopausal or if not, have your ovaries removed to take it. I was never advised to have my ovaries removed and am currently taking Tamoxifen so it's definitely something I'd like to mention at my next oncology visit although the thought of going through more surgery makes me cringe.