ILC - The Odd One Out?

1knightsjourney

Hi all.  I just found this thread.  I also am an odd one out, dx with ILC on Jan. 31st, at the age of 46.  Tumor was a huge 9.5 cm.  Bilateral mastectomy 2 weeks ago, chemo coaching today and TAC starting Wed.  Looking forward to following these discussions. 

Anonymous

Welcome cancerjourney, to the club none of us wanted to be part of . You'll find lots of help from ILC ladies here.  Sounds like you have a plan in place; it seems often ILC tumors are large because they are so hard to find on scans.  We are here for you.

Claire in AZ

Bec65

Hi, Cancerjourney....you're not the odd one out here, unfortunately.  In fact, our stats are quite similar.  I'm just about 5 months ahead of you, so I -- and I know all the others here -- will help you through this.  

sgreenarch

Hi, Cancerjourney (we need a short little nickname for you. CJ?:)

Welcome. Nice support here. Many of us were diagnosed in our forties and fifties. I was 49 and premenopausal. Re the size of ILC when diagnosed, my radiologist and surgeon both said not to focus much on the size with ILC because of how it is formed (strands) and measured. Unlike IDC, size isn't as much of a factor. Good luck w chemo. Hang tough. 

Holeinone

cancer journey, 

Hello, sorry you need to be here. Chemo is no picnic, but is very individual. I started with A/C. Many ladies are able to continue to work, with time off for bad days. I took a medical leave from work. 

Hopefully you got lots of great info today, I was so ready to start and actually looked forward to each treatment, ( every 14 days ) because I knew it would get me to the finish line.

bc101

sgreenarch - that's interesting. I had never heard that before. I know I was always concerned about size and everyone else seemed to factor that in, too. But mine was hard to measure - the bulk of it measured about 3 or 4 cm, however, it had a "tail" that extended to 5 cm. But that was measured by MRI and we all know that's not the full picture. Part of it shrunk with hormonal therapy before surgery, so who knows how big it really was. After my lumpectomy they discovered it grew in lines outward like spider legs. Kinda creepy, huh? One good thing is that my tumor was considered slow growing or one nurse called it "well-behaved" - whatever that means. Just curious, I wonder if all large ILC tumors are slow growing?

Bec65

sgreenarch, that is an interesting perspective on ILC tumors.  It makes sense.  I met the stage IIIa criteria on both size and nodes, but it's still interesting info.  BC101, I think I have read somewhere that most ILC is grade 1 or 2.

Cancerjourney, you've been on my mind all day! I feel like I was so brief in my earlier posting -- had to dash for my radiation appointment.  There's so much to learn and you're probably still being inundated with all kinds of information.  I've found these boards to be so, so helpful.  I mostly participate in a group that started chemo the same time I did, and we've formed a tight bond because we've experienced so many of the same things at the same time.  This group here is great too because, unfortunately, ILC has its own "special" things we need to discuss.  Please feel free to post ANYTHING on your mind -- questions, rants, musings -- anything that we can help with.  How are you doing with your drains?  Do you still have them?  I remember my last one took three weeks to finish doing its job.  I hope your chemo prep appt. went okay.  

karen1956

Cancerjourney...Welcome....glad that you found us, but wish you didn't need to.  I'm 8 years out form Dx and our stats are similar.  I too had TAC chemo.  It is hard but it is DOABLE!!!  Feel free to ask me any questions...I'm happy to help.  When I was going through TAC chemo in 2006 there was a thread...lots of support from a group of gals who were all starting TAC chemo in March and April 2006.   I worked full-time during chemo...had chemo on Thursday and generally went back to work on Monday.  Was I at full force...no way, but I needed work for a sense of normalcy.  Happy to share my journey if/when you want.  Karen

bc101

Yes - welcome cancerjourney! I hope your recovery from surgery has been tolerable. I struggled with a lot of pain issues after my BMX and was just sooo surprised by how difficult it was. Lots of issues with constipation, anxiety, did I mention pain(!), trying to manage the drains, multiple medications, etc.....phew! Now I'm doing well and it seems so far behind me. 

Good luck on Wednesday!

DQ77

Hi Ladies!  I hope everyone is having a good day

I just wanted to report back that I had my first TC chemo session yesterday with the dignicap clinical trial and it wasn't as bad as I thought it would be!  I had no reactions to TC, and the cap didn't nearly feel as cold as I thought it would be.  All in all a very long day--I definitely felt woozy whenever I had to get up to go to the bathroom (not sure from the cap or from the muscle relaxer/anti nausea), and by the time I got home I was exhausted.

I also had my second opinion for radiation yesterday and the good news is that she basically agreed with my first consult.  The bad news is that the general consensus is that I'm in the 'grey zone' and it would be up to me whether or not I would pursue.  I think given the stats of my cancer (without age as a factor), I would be at a 10% risk for local recurrence, and with radiation that would be bring it down to 5-6%.  Since I am under 30, however, the 10% is actually going to be magnified but there's not a lot of data out there that helps substantiate by how much.  Both doctors said my risk would be increased to 20% due to my young age...but even so it's very hard for them to put a % to it.  Any ladies out there who dealt with a similar % recurrence rate that opted to do radiation?

Lojo

Diem,

Glad you're feeling pretty ok!

I am in the middle of rads now. My MO initially didn't think I would need radiation because of the mastectomy, but my surgeon was worried because I had had close margins (negative margins, but they were near whatever threshold they set for "close"). And the RO agreed that rads were indicated. I didn't get a second opinion as I felt comfortable with this treatment. I did some reading on the topic, and although I don't have the citation at hand (I did post it somewhere - you can look at my old posts to find it), there is a relatively recent paper on the management of ILC, and it suggests that it's especially important to treat lobular with post-mastectomy radiation to reduce local recurrence. I was cited higher local recurrence #s than you - around 15%, and with rads it's knocked down to 3-4%. Although I am not as young as you are, I'm still "young" in the lobular cancer world, and all my doctors (BS, MO and RO) really thought local recurrence was my highest risk factor, and that rads would cut it substantially - and the risks (and mine is left side) did not seem to outweigh the potential benefits.

I'm halfway done, and it has not been too bad so far. It's mostly just annoying to have to drive back and forth 5 days a week, and the positioning is uncomfortable. I get a little tired in the afternoon, but my skin is ok so far. 

DQ77

Lojo thanks for sharing!  I'll definitely look into that article and send it to my RO to see what she thinks--I did ask her about how my type of cancer in particular is affected with local recurrence and she didn't mention anything about an association with a lobular type cancer.  Do you by chance know what margins you had, mm wise?  And are you doing reconstruction?

4sewwhat

Diem,

I had no choice about rads but I would have done them anyhow especially since chemo and lobular has such open ended information out there!  My rads damage was very minimal.  Day 25 I started turning lightly pink.  I was getting rads in 6 fields all the way under my arm and up the right side of my neck to about 2 inches below my chin.  I didn't get tired and I was always hungry!

I also have a friend that was in that grey area.  She is 37 and had IDC.  She was given the choice but the doctor showed her new studies that it was probably in her best interest to go for it.  She did great too.

Good Luck.  That grey area stinks.  It is actually easier when you know it is just a given.  

Lojo

Diem, I didn't have reconstruction, so I don't know how TEs will do in rads (concerns that I might need rads pushed me away from immediate reconstruction).

4sewwhat,

I'm always hungry too! So it's not my imagination. I'm trying to eat a high protein diet, but it's hard as I don't eat a lot of meat and I'm getting tired of eggs and tuna sandwiches. I've tried to cut out most dairy (goodbye cheese as a snack!).

4sewwhat

Diem,

I have been posting on exchange city and the fat graft threads because of my current lopsided status!

When you talk to your RO remember tissue is going to stretch better before rads than after!  If you can, try to get expanded most if not all the way during chemo.

I posted a link to a study where they suggest getting expanded during chem, doing rads with a fully expanded TE.  Then 6 weeks I think it was after rads finish they did fat grafting around the expander. Then a 3 month wait until the exchange possibly with another fat graft at that time too.

The reasoning behind this is that stem cells in the fat transfer are rejuvenating some or most of the rad damage.  The fat also developers a blood supply helping to stimulate the area and in some cases retiring some sensation and feeling.

They are having a lot fewer failures on implant recon in rad patients when they are getting the fat grafting as well.  This is also good news for ladies that don't do immediate recon and end up doing dads because most PS will not do TEs and implants if you have had prior radiation without a TE in place because of the failure rate.  I have a friend that found that out the hard way.  

Check out the fat grafting thread by Whippetmom. Lots of info there and I will try to get that other link on here when I get off the tablet and back on the real computer!

Hope chemo went well today.  I hated going to sleep at night because I felt good and didn't want to wake up feeling crappy!  I did tues chemo too and sat and sun were my lounge around days that first week but nothing awful.  I didn't get the neulasta shots though. If you do, take the Claritin before you get it and continue for 4-5 days. Most swear by that!

Lojo!  I am still always hungry!  I am eating far more beef than I have in years!  Chicken doesn't ever sound good now.  I do a ton of eggs too. Hooked on mushroom and spinach omelettes!  Still eat cheese but not as much and eating yogurt and organic granolas with hi fiber on it.  Yes, ate my way through chemo and rads but never needed a nap.  Put on a couple pounds but nothing major  5-8 maybe. Figure it will come off eventually. Besides it looks like I need it for the fat grafting anyhow!

Have a good night ladies!

smrlvr

Cancerjourney, good luck with your first chemo.  Remember to,take it easy and rest when you need to.  Also, drink tons of water to flush your system. Keep in touch with us.

thegoddessjen

Hi all.  Very new here.  I am 43, per earlier discussions on this thread - premenopausal, no DES exposure of which I am aware and had my kids pretty early (24 and 28).  5'5", good BMI (140 lbs), ran my first 5k last summer (ironic) and planning to run a couple more this fall.  I've never smoked but I do drink regularly.  I'm not sure I plan to stop that either.  Odds may be in my favor, but none of us really know what we have left for more reasons than our cancer dx.  

My oncotype dx score was a 14.  I was offered chemo with "no A" (leaving out the drug most toxic to cardiac tissue as my family has a deep history of heart disease and that is a risk for me) or just rads and tamoxifen, or rad + tamoxifen + ovarian suppression.  I chose rads + tamoxifen.  I guess I'm hoping I'll enter into menopause in the next five years so I can move to Femara since that seems to have better results.  

I am on 12/33 rad treatments.  So far some intermittent redness and itching, no other SE that I can note. Waiting to start Tamoxifen until I finish rads just for the sake of SE clarity.

Bec65

Hi thegoddessjen...welcome!  I had a different path than you up to this point, but we're now doing about the same thing -- I've done 9/25 rads, then I start Tamoxifen.  I haven't had a period since my surgery, so I'm planning on confirming menopause in a year or two, then switching to an AI too.  Glad/sorry you're with us....

karen1956

Diem....I had bilat with TE....had my fills during chemo...only had 3 fills, so was done with them half way through chemo.....then after chemo had rads.....and 7 months post rads I had my exchange....I had some problems with my pocket falling, but after a couple fixes (second fix cuz I hated my implants and wanted smaller ones)...I've had these implants for 5 1/2 years now and all is well.....

gemini4

welcome, Jen!  My profile is similar to yours -- OncoType score of 16 but was not offered chemo; MO said it would not have been beneficial. Like you, I had lumpectomy + rads and now tamoxifen. I had a ten-day break between rads and tamoxifen.  I'm six years older than you and have been in perimenopause for a few years. Still had periods for the first six months on tamoxifen (the cycles got longer), but I'm a little surprised I haven't had a period now for almost five months. I kind of liked the "cleanse" aspect of a period, and the last one I had was pretty normal - no indication that it would be my "last."  My luck I'll get one at the 11-month mark, just in time to reset the "official menopause" clock!  ;-)

Anyway, enough about me ... Good luck with rads, drink plenty of water, get lots of rest, and listen to your body. :-)

DQ77

Lojo--do you by chance remember how close your margins were, mm-wise?

4swewhat--thanks for letting me know about all that! I'll definitely talk to my PS next monday about the fat grafting with the TE's in before doing the actual exchange surgery. I'll have to search for that thread you mentioned

goddessjen--welcome! I'm glad you're taking the rads well--almost halfway through!

karen--thank you for sharing your experience--did your PS say that the pocket falling had to do with rads? And did you end up doing any fat transfer as well?

karen1956

Diem...never heard about fat grafting...so no.    Rads do make recon more difficult.  I knew there was a risk of "failure"....and since the pocket that fell was on the rads side, I would say that it was due to rads....my expanders were also uneven.   The first time the pocket fell, it was more noticeable.....and I was so "sensitive" to how I looked...I think cuz I didn't like the implants cuz they were so perky!!!  PS went in and took out the implant and stitched up the pocket...this happened fairly soon after the exchange.   It fell again but no one but me (and PS) could see it....I hated my implants so I made an issue it and had PS swap out both implants for smaller ones when he went in and fixed it....Its 5 1/2 years and all is well....in clothes I look like a small chested woman...naked well, that's a different story...I look like I have two hamburger buns on my chest, but that's okay cuz if I can't have my old, middle age saggy boobs, these are the next best thing!!!!

Lojo

Diem - 

I think (I haven't looked at the path report for a while) that my closest margin was 0.5mm - so pretty darn close.

4sewwhat - I've been following the fat grafting thing too - as the BRAVA + fat grafting is really the only reconstruction type that seems appealing (or at least not too bad) to me. However, I just saw this article http://www.plosone.org/article/info%3Adoi%2F10.13...  

and while I know that the type of fat grafting that is *just* liposuction and re-injection (without concentrating the fat stem cells), it still gives me pause, as I'm not sure we know the long term safety of injecting totipotent cells into an environment where they could become any cell type. 

4sewwhat

Lojo!

I am leary about the BRAVA for complete recon.  I do not mind my implant in the least and I have only had the remaining on 10 weeks.  It really feels normal 90% of the time.  My doctor has also mentioned Brava to add a fat layer like where a lat flap would lay and then an implant under the muscle.  He and I are still negotiating.  I have to get this damn thing to stop draining and heal up.  I had another fountain episode last night.  Ugh  not looking forward to getting drain put in friday but really want this healed up so I can move along!

We will have to keep each other posted with what we find!  Thanks!

How's the Tamoxifen treating you?  I don't really notice I am taking it....

4sewwhat

Karen, as always it is good to see you!  Thanks for being an inspiration to us all and sharing your trials and tribulations with us!!

maryland

Hi ladies, I haven't been on this thread for awhile, I posted this on 1 other ILC thread because I'm trying to get as much feedback as possible. Here's what's going on for me now. A quick recap.

Dx on Feb 14 with ILC following core biopsy of left breast and lymph node. Path report reads Tumor size: at least 1 cm. Grade 1 pT1b.

Lymph node pT1b and it states metastatic lobular carcinoma with extranodal extension.

My oncologist sent me for a metastatic work up, everything fine in the right breast with the MRI but the report does say bilateral nonspecific enhancing foci, but then goes on to say no evidence of malignancy. Category 1: negative

Final clinical stage; T1N1M0

So my surgeon tells me she wants to do chemo 1st and sends me to the oncologist. She spent a lot of time with me and answered the questions I had at the time but that was on March 5 and I have a million questions since. Here is my tx plan: Cytoxan and Taxotere q/3wks x 6 rounds, 3 weeks off then lumpectomy, 6 wks off then 6 1/2 wks of rads.

I had my 1st chemo on March 14, I will see the onc PA next Wed and 2nd tx the following Friday. I'm trying to get all my questions written down for the Wed appt.

I do understand my dx, here's my problem. I've had 15 mammograms with the last one being last September and nothing but "dense and fibrous" was ever found. It was found with the U/S in the diagnostic workup after I noticed "dimpling" on my left breast and called my PCP. It's very evident when I put my arms up and flex. But there is a slight dimpling on my right breast. I pointed this out to my surgeon during my 1st visit and she acknowledged it but it seems to have been discounted because the MRI said right breast negative. They did not ever do a U/S to my right breast.

Since then I have seen so many posts from women that had a prophylactic mastectomy in the unaffected breast only to find that it had CA as well. So if I'm getting chemo 1st and there are CA cells in the right breast will that be enough? What does nonspecific enhancing foci mean?

Like I said I'm trying to form intelligent questions for Wednesday, I really like and trust all of my docs but I'm not sure I'm confident with just a lumpectomy. Should I go and get a second opinion from another surgeon? All I do know for certain is that I don't want to be going through this again in a few years just to save my not quite A cup boobs. I know this is long but I wanted to tell the whole story, you ladies are so knowledgable, thought I could use your input.

Thanks, Genny

Momine

Genny, what did they give as the reason for chemo before the surgery. It is not bad, just a bit unusual given the small tumor. Are they planning further scans after the chemo and before the surgery? If so, the chemo may be to try to determine if some of those other foci are, in fact, bad guys (if they disappear or shrink with chemo ...). So, I would ask about that, and I would ask if the response to chemo and subsequent scans might change the surgery plan.

I am one of the women who did prophylactic on one side, only to have all kinds of goodies discovered in the path report. As a result I am somewhat biased and really can't tell you what to do. Most docs these days are bent on avoiding mastectomies, which is a great approach in the majority of cases. I am not sure it is necessarily the greatest with ILC. So, perhaps ask the team what their experience is with ILC specifically.

maryland

They said the chemo 1st because of the lymph node involvement and the extranodal extension, which means it had broken out of the capsule of the node. I think they felt it was getting ready to "make a run for it". And she said she could then remove the tumor without taking as much of the breast. 

I do know they discussed my case at tumor board and University Hospital Seidman cancer center is a top cancer center, but I'm not at all confident at this point that lumpectomy is the way to go. I've just seen so many bio's from women who had ILC then lumectomy then 1 or 2 yrs later a BMX. I'm trying to find out why?

bc101

Genny,

I feel that 2nd and even 3rd opinions are always a great idea. 

I know from personal experience that lobular cancer cannot be accurately measured by any kind of imaging. My tumor was not detected on annual mammograms because my breasts are very dense. I found it myself after having a dream about my best friend who died of cancer 20+ years ago. I woke up the next morning, touched my breast and felt it immediately. 

The diagnostic MRI they did was hard to read, and some docs discount the value of it even doing them, believe it or not. Ultrasounds did not accurately measure the size of my supposedly shrinking tumor in monthly checkups during preoperative hormonal therapy. They didn't really know what it looked like until they got in there during the lumpectomy and found out it was multifocal. Before my lumpectomy, they had problems locating the tumor in order to insert the wire, and while they didn't admit it, I believe they had a hard time locating it with the mammogram before surgery. My BS said that he couldn't feel or see anything before he closed me up and was very surprised that there were still dirty margins after the pathology. During lumpectomies the surgeon is basically going in blind. That's the scary thing about lobular cancer and that's why I choose to do a BMX. I'm not telling you this to scare you, I'm just sharing my own personal story. 

Whatever you do, do not let them discount anything if YOU feel something is not right. If you feel you are not being heard, or don't feel comfortable with what you're hearing, then go somewhere else. I had 3 opinions before my BMX and did not take that decision lightly. It is a very difficult choice, but it must be a personal one based on your own circumstances and reasoning. Follow your gut instinct and trust yourself to make the right choice after you have all the information and find a doctor that you totally trust.

Did you have the Oncotype test done? If not, I would ask about that. 

Good luck to you!

Woodylb

genny, i am also ILC but not on this thread because i moved this year to stage IV. I was dxd december 10, 2010 with stage IIIb 22/23 and 2/2 axillary positive, i had a lumpectomy then a lymph nodes dissection. I had extracapsular invasion, my bc is multifocal, and LCIS was seen. But my margins were clear. I did the entire chemo ACT after my dissection then radiation then was on femara till this year. After my ACT a bmx was discussed and i took 3 opinions and i decided not to have one. We discussed a profilactic one for the left one and a mastectomy for the right , i like you showed and show till now no evidence on the left. Personally , and in my case i don't believe that mastectomy would have helped or kept my cancer from coming back. Because when i spoke to the BS he was clear the removal of the sick breast will reduce the risk of reoccurrence 15 % and on the left the profilactic one will only reduce the chance of cancer by  1% each year. I am telling you this not to influence you in anyway , just to tell you that bmx is a personal decision unless asked specifically and urgently by your onc or surgeon. Take different opinions and then do what you feel is right. For me i don't believe my decision impacted my reoccurrence. Maybe it would have delayed it a bit. My cancer from the begining was advanced even though the tumor was below 1 cm. if you decide to do your bmx do so after your body have rested from the chemo , a year after would be good. I wish you health and a long life. And i pray that you do exactly what your are supposed to do. For as much as each and every lady on this board is amasing , every cancer of each one of us is different, and behave differently. ILC is a tough one because not much is known about it. So i just pray you have a good and caring doctor. Best of luck.