ILC - The Odd One Out?

Justjean, I am so sorry about your recurrence.

thanks TaniaE! My first oncology appointments are next week. I live in an isolated area so I have to travel by plane to get to the only cancer clinic in my province. Looking forward to getting more info about my treatment

Yes it is because of the hormones, I wanted my ovaries removed but because of my age at the time (53) they refused as they said I should be going through menopause soon. So instead I have monthly Zoladex injections that stop my ovaries functioning. That means I can take Femara which is supposedly better for Lobular than Tamoxifen?

Mm- The study showing Femara (letrozole) is better for ILC than Tamoxifen is fairly recent. Here's a link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053079/ to an article that contains the following information:

As might be predicted, patients at highest risk based on the number of involved nodes, tumor grade, size, vascular invasion, and Ki67 gained most from an AI compared with tamoxifen, and a recent subset analysis of BIG 1-98 data also showed a more pronounced benefit of letrozole in invasive lobular versus invasive ductal carcinoma.

I'm having my ovaries removed in order to cut off the hormones as well, but I also have ILC for the 2nd time, so my treatment is very aggressive. I personally haven't heard of many patients who have their ovaries removed unless they've either had a recurrence, are Stage III+ upon initial diagnosis, or test positive for a known genetic mutation linked to ovarian cancer.

Thanks for that info Texas94. I'm 46 and haven't had my cycle come back since the beginning of chemo which was a year ago now. Would be interesting to ask my onc if I can move to letrozole instead of continuing with Tamoxifen.

I have been researching diets and lobular ER/PR+ cancers and keep finding contradicting information. And then add diets for those taking tamoxifen.

Any suggestions?

Hello all! I was 60 at DX. They were going to let me skip a year for mammo because had several years of clear ones. I found a lump shortly after that and the rest is history! I know that God guided my fingers to that area, was never a good self examiner. They couldn't believe I could feel it. I had my BMX 1 month after biopsy. They said it had been growing a long time. It was never detected before my discovery. I am having so much trouble getting a med that doesn't have horrible SE. Tried Arimidex, Aromasin, now Tamoxifin. Exchange surgery is 3/5.

Cloesmom, just a couple of questions, why did you have chemo with no nodes involved? Was it a personal choice or insisted by Dr? And are you tolerating Arimidex? I am still suffering with hand and wrist joint pain and swelling! Have a trigger thumb on right hand. I am a high school office manager, I need my hands to work right! Have a blessed da

Mm68- I've looked for the same ILC diet info and also haven't found anything that seems solid. My doctor's only instructions to me so far have been no alcohol except one glass for a special occasion (big bummer! I'm still mad about this one, but I'm a recurrence, so I don't have much choice.), plus a healthy diet and exercise. Oh, and avoid soy as often as is reasonable.

ChoesMom- Thanks for the tip on cutting out wheat. It's worth it if it means you feel good on an AI. Does this mean you're completely gluten free?

robinblesse

Reading texas94's story resonates with me a bit, as my wife's Dx is a bit similar and the future is always unknown. Obviosuly everyone's situation is different. There are so many variables that determine recurrence. However, I have comments about Tamoxifen, for those that are interested.

There's a few threads that have discussed research regarding a subset of ILC patients who may not benefit from Tamoxifen. Essentially "tamoxifen resistance". There are a couple retrospective analyses from large trials in post-menopausal women (BIG 1-98 and ABCSG-8) that both suggest that tamoxifen may not work well for ILC patients (these studies have not been peer-reviewed or published yet). Since this is all retrospective, they can't really estimate percentage of patients that resist, and these studies were not designed to ask this question. As little data that they have so far in the post-menopausal setting, there is even less for pre-menopausal patients.

Recent research out of the University of Pittsburgh discusses tamoxifen resistance, but the jury is still out. Here's a Link to one of the research reports: "Invasive lobular carcinoma cell lines are characterized by unique estrogen-mediated gene expression patterns and altered tamoxifen response."

PM me if interested in connecting with the researchers involved. Very few have specific interest in Lobular. Some of these folks do, so it's important ILC folks pay attention to the research they generate.

One last note, for those that are pre-menopausal, there is potentially critical ILC data buried in the results of the SOFT/TEXT trials. A lead SOFT/TEXT researcher in Australia has been a bit aloof regarding when the data will be released. Anyone that is pre-menopausal (and older than 35) needs to pay attention to the results (when they are revealed) as it may suggest a change in treatment (i.e. oophorectomy + AI versus simply doing Tamoxifen).

Finally, MmeJ, who created this thread brought up some valid points and it's useful to occasionally review what she wrote. Science continues to reveal that Lobular is significantly different in its mutational spectrum than Ductal, and the genomic drivers of lobular BC point that future targeted therapies are warranted. None of the new research is mature enough to offer specific options for ILC patients, but if enough of you voice your concerns then perhaps the message will reverberate throughout the BC oncology field and new therapies will come quicker.

robinblessed & Mm68- In 2007 I had a BMX and reconstruction plus 3 ½ years of Tamoxifen (I had to stop Tamox due to severe side effects). Surgery and Tamoxifen were my only treatments. In June 2014 I felt a lump way up in my left underam. I wouldn't have found it except the skin on my underarm was a bit tender, so I pushed around in there while I was in the shower. It ended up being a 2.6cm tumor in the axilla plus 2 more positive nodes nearby and 3 up under my clavicle. The GREAT news is my recurrence is LOCAL. I truly appreciate it returning to the same place, because it puts me at Stage IIIc and not Stage 4. HUGE BLESSING.

Treatment this time is 6 months of chemo (done!), ALND surgery & lumpectomy with bio patch to repair pocket holding my left implant (done!), 33 rounds of radiation (2/16-4/1), ovary removal and 10 years of Femara. My surgeon pulled 19 lymph nodes during my ALND, and 11 were cancerous (more than we originally thought, but thankfully it doesn't change my diagnosis or treatment). Because of this, my RO will radiate all the nodes up into my neck as well. I'll have 27 rounds plus 6 boosters to axilla, clavicular, supraclavicular (neck), intramammary, and my entire left chest wall/breast all the way around to the back. Dosage 66 Gray (I have no idea what this means. ha). I'm getting absolutely fried, but being a recurrence, I'm ok with it no matter what it does to me.

Maybe that's TMI, but I wanted to cover everything for you!

I refused to take Tamoxifen due to family history of Thrombosis and Uterine Cancer (mother). I went on Femara and because I was pre-menopausal I am also taking monthly Zoladex injections which stop my ovaries from working. The doctors refused to give me an Oopherectomy due to my age (53 at the time). They said I couldn't be far off menopause. So Oopherectomy isn't the only option.

hi Texas, I'm not totally gluten free but am wheat free. I am still eating stuff like oatmeal which if you have a true allergy or celiac can't eat due to the contamination of grains. I try to eat little corn as it's so messed up with the GMOs and rice infrequently due to arsenic. No soy ever it was hard the first week when I went out for soup and the gave me a yummy looking baguette which I had them take away. After that my knees felt better and I asked myself is it worth it?!?!

Just have my first chemo of 4 rounds today. I have a 17% chance of recurrence with my progesterone neg levels so need to get the numbers down. This is one lottery. Don't want to lose. Wig shopping tomorrow before the Neulasta injection when they say I might be down for the count.

Wow, what a lot of info! I go see my new MO Friday. Had to give the first one the boot! He was so insensitive and disrespectful that I decided to get a new one. As I have posted in the past, I am an ILC gal and I guess we don't have as many people interested in us. I took Arimidex, Aromasin and now Tamoxifin. Such bad SE from the AI's that I was afraid to try Femara. But now I read that it might be the best bet for ILC. Between a rock and a hard place. I will see what she says. I am afraid of the bone thinning aspect because of a family history of osteoporosis. Oh, this is such a winding road, figuring out what is best. I will post after Friday appointment. Thanks for all of your tips. /blessings, Robin

great info Texas, I tried to make sense of the study on Femara. It was on people with mets which I'm praying I don't have. Have stopped the Arimidex since staring chemo. Am wondering what the difference is in SE for Femara as I have been doing great on the Arimidex these last 10 weeks.