ILC-Specific Questions in Making Treatment Decision

John Smith, artistatheart, lily 55- My MO gave me a copy of the BIG 1-98 trial looking at Letrozole vs Tamoxifen - pub in J Clinic Oncology July 27, 2015. It shows that Letrozole works significantly better in ILC. Patients were postmenopausal, but as noted above it is acceptable to induce menopause and treat with an aromatase inhibitor.

Lily55, my MO went through the AI options with me and suggested "going down the line" so to speak if side effects were intolerable - so I would personally try anastrozole given the option.

Thanks Zinny, Meow and Shetland, it sure is tough trying to stay ahead of the learning curve! I just don't want to be limited on treatment options of course. I thought I read somewhere on one of these threads that some of the hormonal's aren't effective for ILC....I'm not sure if the 2nd opinion helped or just got me more confused than ever

THanks Zinny, that is what my intuition tells me so I am not going to start TAmoxifen..........rather enjoying feeling more normal though albeit with a lot more joint pain than I had three years ago, even off AI´s......

It's my understanding that IDC and ILC are very different and need different meds and treatment strategies. Get a second opinion if you hear they're treated the same. John Smith is much more knowledgeable than I am, but ILC is far harder to detect and much more likely to metastasize if not caught early. And the same meds don't work on both. Check out the clinical trial for Fulvasant (sp). It's worked well for lobular cancer pre-surgery. I wanted on it, but my MO said my stage was too low. After my BMX, guess what? It wasn't and could have been far more effective for me.

I also wasn't aware it was more likely to metastasise. Leslie13, could you elaborate on this? You've got us scared!

I don't mean to scare anyone, but what makes Lobular more likely to metastasize is the growth pattern. It's in single strands, webs or cells which are very difficult to detect so often our Dr's don't find it until it's pretty large. It's diffuse, not in lumps. It also doesn't respond as well to standard IDC therapy. It's hard to get clear margins with lumpectomies too.

And the larger the tumor, the more likely it is to have lymph involvement which leads to having it spread. It can be a quiet cancer that suddenly goes bad. My tumors were over 3 cm in my right breast with lots of scattered cancer cells and a KI-67 of 44%. Femara brought down the KI rate to 3% but my tumors didn't shrink much over 6 months.

It's important to be put on neoadjuctvant endrocine pre-surgery. Strongly advocate for that. Make sure you have adequate testing before deciding on a lumpectomy and/or chemo + radiation. Radiation isn't that effective and with the stronger likelihood of a BMX, you want your skin in good shape. Endocrine is the most effective early treatment, so it's good you're taking Femara. I'd also suggest finding out how large your tumors are and strongly considering a MX or BMX down the road.I've had excellent results with a nipple sparing straight to implant bi-lateral mastectomy. But I had more tumor than breast and would have been disfigured. I'm more confident having all the tissue gone.

JohnSmith is a wealth of info on Lobular cancer. He has lots of links to different research studies. And being well-informed helps you better self-advocate. I have to wonder how many women with ILC had their treatment fail because their MO didn't know the difference from IDC. And no one did over 6 years ago.

Both are true. ILC does have subtypes. I've used JohnSmith's links on many occasions, and you can click on his name to find his posts. One of his last explained my ILC, which didn't fit the rules, as it was going bat s**t crazy! Now I know it's not uncommon, but also have the researcher's names. I'm in a research hospital, so they can work together for treatment guidelines.

Which brings up another good point. Since ILC is rarer, med schools and cancer researchers want us. If you have a nearby, or can reach a med school, Mayo clinic, University of Pittsburg (leading lobular research facility), or similar large cancer research facility, go! Don't get treated in a podunk town. American Cancer Society pays for overnight stays at larger research facilities. They've been a much better help than Susan B. Koman for me.

I've also typed in Lobular breast cancer in Google and found many links that way. I can't give you short-cuts, except for John's links for doing the same in-depth search. Add metastasis to the search to get more info on the sneakiness of this disease.

And there's also good info right here in the ILC discussion group if you search through the threads. You'll hear the word "sneaky" often about ILC. It's lazy and slow growing, but gets unpredictably triggered. I likely had it for many years. I'm pissed considering all the ultrasounds and cyst aspirations I had that it was caught 6 months after my last mammogram.

You have to take charge of your own treatment, and that includes looking for all the resources available to you. A choice to take the easy road now, could mean fighting this disease for a long time to come. Of course, I just read your profile (duh) Shetland Pony and see how you're an example of ILC coming back to bite you after a lumpectomy. So I'm telling you info you already know. At stage IV please tell me you're in a Research hospital or med school. If not, will you promise to go

Artist, mine was originally thought to be just ILC, but rechecking found some IDC, so it's being called a hybrid. Letrozole works well for both apparently.....

Thank you for your info Leslie... I had heard a lot of the same....... my tumour was large so I chose a bilateral mx after starting with taxol then letrozole first to shrink it. Now they want me to do radiation....{ I had hoped to escape that } post surgery after the diep heals well, as size was still a problem once they went in during surgery [likely was even bigger in the beginning than they measured] and had a too close margin.... so was interested in your comment re radiation not really being effective. Do you have any further info on that?

And Shetland, my oncologist said another site elsewhere on the breast is the most common spot for mets. Best wishes to you with your current situation.

I could not tolerate letrozole although I tried for over a year...........but info here makes me feel better about refusing tamoxifen..........will start anastrozole in a few days but really not wanting to................ILC being sneaky and then re-appearing with a vengeance is hard to live with sometimes, although generally I simply think healthy......law of attraction and all that.......my Onc only says both are treated the same so I have to advocate for myself in this respect so have to face difficult info.................

Dear Leslie:

Why is radiation not very effective for Invasive Lobular Carcinoma?

Dear Shetland Pony:

I am happy for you that you are NED.

Good luck to everyone.

I cannot wait until November when I will have a diagnostic 3D mammogram, sonogram, and an MRI.  I am hoping that the tests will put my mind at ease since I know that I currently have a suspicious area that could not be biopsied in May 2015. I am on a 6 month wait and watch plan. In addition, I had an MRI guided biopsy in May 2015 for a second suspicious area and that biopsy caused a giant 8cn hematoma.  The hematoma has diminished but it is still approximately 4cm.  I am not worried about the hematoma.  I just want to make sure that nothing is lurking near the hematoma.  Of course, I am worried about the other suspicious area which is a "1.5cm or a 1.8cm (2nd opinion told me a larger size) linear non-mass enhancement with rapid washin washout kinetics".  I cannot feel this non-mass enhancement.

I am exactly 1 year post treatment and I had a double lumpectomy with whole breast radiation. 

I was diagnosed with stage 1 pleomorphic invasive lobular carcinoma and bifocal pleomorphic lobular carcinoma in situ.  The pathology report also found an area of invasive tubular carcinoma.

Now that I am hearing that radiation is not very effective, I am worried.  I am taking Armidex/Anastrazole (an aromatase inhibitor) so I am very happy about that.  I had an oophorectomy so that I could be medically induced into menopause so that I could take the AI's. I did not want to continue with the zoladex/goserelin.

This website is a huge source of stress relief to me.  Thanks.

Does anyone know anything about linear non-mass enhancements? 

Dear Leslie:

Thanks so much for all of your information and your prompt post.

I live in Florida but I was treated at M.D. Anderson Cancer Center in Houston, Texas.  My doctors in Florida told me that I should have double mastectomy but my doctors in Texas told me that the double lumpectomy would be fine because I would be having whole breast radiation and I would also be taking Arimidex.  My breast surgeon told me that she would be happy to do a double mx but that I did not need one.  I had a breast reduction and a breast lift because so much tissue had to be removed at the time of my double lumpectomy.  My breast and plastic surgeons did a wonderful job.

Of course, when I was diagnosed, only one lump came back as being malignant.  The second lump which was palpable, had been biopsied once years ago and then again after my malignancy was found.  It was not seen as being suspicious on the mammo or sono.  After my bc was discovered, I was sent for a biopsy of this lump.  This lump came back as being benign a second time.  I insisted that both lumps be removed at the time of my surgery.  After surgery, the second area of PLCIS and ITC were found because the second lump was malignant too.  My first lump which was not palpable, was also biopsied years ago and found to be benign at that time too.  I was told that the PILC and PLCIS grew in the lump rather than the lump changing to become malignant.

My mammo, sono, and MRI were done in Florida in April 2015 and in May 2015 but my next round of tests will be done in Texas at M.D. Anderson Cancer Center.  I sent my records to M.D. Anderson as a second opinion regarding the linear non-mass enhancement.

I am happy to know that the American Cancer Society helps with travel costs.  I am a single parent with no money and I need the help.

I am glad that you have feeling in one of your breasts.  That is amazing.  Most people do not.  You had wonderful plastic and breast surgeons. 

Thanks so much for all of your help.  I really appreciate it.

I think people should be very careful before saying things like ILC comes back more aggressively than IDC, that Radiology doesn't really work for ILC and that we have a worse prognosis etc. I would really like to see where you are getting this information from please!!! Some of the things you are saying are the opposite of what my Oncologists and Breast Surgeons have told me. I think this type of information can cause unnecessary worry for some people (like me).

Dear Leslie:

I am sorry that your node came back positive and that you have to have more surgery.  Good luck if you have to have chemo.  It sounds to me that you will have to. However, the chemo will keep you alive so it is a good thing.  It sounds to me as if you are being treated at M.D. Anderson Cancer Center too.  They are wonderful.  I went to their salon too and they washed my hair when I was having my radiation treatments.  Those ladies are terrific and so kind.  The radiation was not bad at all for me.  My RO at M.D. Anderson is the absolute best.  So is my MO in Florida.

I am under high surveillance (as we all are) due to the ILC.  I will be having mammo's/sono's alternating with MRI's every 6 months.  However, because 2 suspicious areas were found 6 months after my tx ended last October, and 1 of the areas could not be biopsied at the time, I will be having a Mammo/Sono and an MRI in November 2015.  My suspicious area has to be looked at with an MRI.  Since I also have a hematoma now, I want to make sure that I have my Mammo's/Sono's/MRI done at M.D. Anderson Cancer Center because I will be treated there if anything is found. 

I am sure that I am fine and that this is all just needless worry.  The odds are in my favor that I am 100% well.  It is just very scary.  My fear is due to the fact that it is so hard to detect ILC and LCIS.  I am worried that something may be present but not seen.  That is why many people with ILC are not diagnosed until later stages.  I feel so lucky that my bc was diagnosed at stage 1.  It was a miracle as far as I am concerned. 

 

Dear Lily:

That is an amazing story but it sounds typical of ILC.  Nothing is seen on a mammogram but a large tumor is there.  One of the ladies in my support group felt a palpable lump that was not detected by tests.  It turned out to be a 9cm ILC Stage III tumor.  This is all so terrifying to me and I cannot help worrying.  Especially since I know that a suspicious area was found on my MRI in May.  I am so sorry for you Lily, that you are also dealing with a secondary illness.  I wish you the best.

 

Dear Fizzdon:

I am a worrier too.  Good luck.  I am constantly doing breast self exams now.  My next round of tests will put my mind at ease, I hope.

 

Good luck to everyone here even if I didn't specifically mention your name, and thanks.

 

 

I had a total mastectomy and they took a little bit of muscle too it seems and I had radiation after, am left with ongoing discomfort to pain, depending on my position and movements, and never ending rib pain, lung on that side does not work as well either......and Rad Onc denies it was anything to do with radiotherapy......even my primary care doctor raised her hands in exasperation when I told her........why can´t they admit what they must surely know? 

I am not being closely monitored.......attitude here is treat when you get symptoms........am going to start anastrozole this week, sadly, enjoyed my holiday and having some oestrogen again, can walk without feeling like sandpaper down there for one thing!!!

MO told me lumpecty vs MX = same life expectancy BUT she sees lots more ILC than IDCs need to get further lumpectomies and then often MX after all

Also sees a lot of bilateral ILC but no data on specifics. That's why I said take them both so I don't have to stres over mammos since my one a year earlier showed nothing and while MRI was negative on proph side it was starting to show changes in the final pathology report