Invasive lobular carcinoma

Rue

Invasive lobular carcinoma

Rue

I have just been diagnosed with invasive lobular carcinoma. The mass is about 12mm or 1/2 inch.  Estrogen receptor was only 13% favorable which is not favorable at all.  The Progesteron receptor was 86%.  Ki-67 was 5% and Her2 was negative. The first surgeon suggested right off the bat lumpectomy and then we discussed a double mastectomy.  I have appointments lined up with other sugeons, oncologist and plastic surgeons.  I have a breast MRI on Tuesday.  I am so confused.  I am married, 43 and I have three children: 12, 11 and 3  years old.  To me a double mastectomy seems appropriate and safest route to go.  Just curious what others advice would be. Thank you.

Little-G

Hi Rue,

I'm so sorry about your dx.  I can't give you any advice on which way to go, as there are so many factors.  For myself, I had a lumpectomy and 7 weeks of rads.  And also had my ovaries out.  I was 45 when dx, also 2 young children.  The best thing I can say is to take this slow, make sure you have all the info you need before you make any decisions.  I wish you the best of luck!!

g

wallycat

I am so sorry you are joining us.

If the doctor offers lumpectomy, it is still a very, very personal decision.  Between your personality type (are you a worrier?) and how much tissue will be removed and how big your breasts are...how attached you are to them...on and on.

My surgeon and radiation oncologist and radiologist all told me to get a lumpectomy, but I am a worrier and opted for bilateral mastectomy.  The left breast was healthy, but as I've posted here before, I was a 34D and was not willing to schlep around that large a form or try to match expanders/reconstruction to that size breast.  Now I go flat and do not miss wearing bras at all!  I was 1 month shy of 50 when Dx and have been happily married, plus my DH is not that into boobs (leg man), so this decision was somewhat easier for me.

Best to you with your decisions and outcomes! 

VBG

Hi Rue,

I was 46 when I was diagnosed, children 10 and 8.  I opted for a lumpectomy and rads followed by tamoxifen.  18 months later I has a recurrence in the same breast.  There are many factors in making a decision.  In my case I wish I had known:

dense breast tissue increased your risk for BC

ILC can be multifocal

low grade tumors do not always respond to rads

micro calcification can be risk factors

ILC can be difficult to "see" on mammos and even ultrasound

ILC can often "migrate" to the other breast

I have now had a bi lat ( skin/nipple sparing) and reconstruction(expanders).  I also had my ovaries removed so that I can start aromatase inhibitors since tamoxifen did not work for me.  My goal is to put cancer behind me and I did not want to have to worry and go through the agony of waiting for test results every six months.

My age, my children's ages and my determination to beat this thing was ultimately how I made my choices.

My recommendation to you is to do your research, consider BRCA testing(mine was neg), talk to your Docs about other risk factors and your est/pro status.

You are doing the right thing and talking to more than one doc is definitely the best, especially Plastic surgeons since recon options vary greatly!

I wish you the best and definitely use this board if you have questions about anything....it has really helped me to become more informed and to ask better questions!

Valerie

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI lyou have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

kyra

rue think positive cancer has come a long way, l have been dx with ILC 70mm and DSCI you have to do your reserch, l have had 2 operations in 3 months the last was a  masectomy now on fec 6 chemo my 4th is tomorrow l have a lovely team at my hospital and they are always there to ask, ILC has improved so much treatment wise, good luck and take it easy think of yourself first thats sounds terrible but you have to, this is your time.and get all the support that you can.

sjandtj

I was dx with invasive lobular May 8th 06!  I did research and talked to my oncon and surgeon!  The stats say it is the same for recurrance with a lumpectomy or total removal so I went with the lumpectomy!

But you have do be comfortable with your decision!  I did have to do chemo and rads and I am still having alot of problems from the effects of the treatments even after 2 years but I am still cancer free!  I am on femara after trying all the other inhibitors.

I still worry about recurrance but that is normal wether you have had total removal or lumpectomy,  THe worry lessens with each year that passes that is until it is time for check ups again but that to is normal!

Good lucK

 Sfj

sjandtj

I was dx with invasive lobular May 8th 06!  I did research and talked to my oncon and surgeon!  The stats say it is the same for recurrance with a lumpectomy or total removal so I went with the lumpectomy!

But you have do be comfortable with your decision!  I did have to do chemo and rads and I am still having alot of problems from the effects of the treatments even after 2 years but I am still cancer free!  I am on femara after trying all the other inhibitors.

I still worry about recurrance but that is normal wether you have had total removal or lumpectomy,  THe worry lessens with each year that passes that is until it is time for check ups again but that to is normal!

Good lucK

 Sfj

sjandtj

I was dx with invasive lobular May 8th 06!  I did research and talked to my oncon and surgeon!  The stats say it is the same for recurrance with a lumpectomy or total removal so I went with the lumpectomy!

But you have do be comfortable with your decision!  I did have to do chemo and rads and I am still having alot of problems from the effects of the treatments even after 2 years but I am still cancer free!  I am on femara after trying all the other inhibitors.

I still worry about recurrance but that is normal wether you have had total removal or lumpectomy,  THe worry lessens with each year that passes that is until it is time for check ups again but that to is normal!

Good lucK

 Sfj

June68

I am 40, single and have two children ages 18 and 15. I just had a double mastectomy a week and a half ago. I have bc on my right side and right after my first appt. with surgeon I made up my mind to do a double mastectomy because I felt it was the safest route to go and I don't regret it. I'm also doing recontruction so I had tissue expanders placed at the time of the mastectomy so when I woke up I actually had breasts the same size which I found comforting. You have to do what feels right for you. I wish you the best of luck.

AdrienneE

Hi...I posted this in one of the other topic threads, but realized I had posted it to the wrong thread so am now posting on this one...sorry about that.  My brain doesn't seem to be working too well today.

 I was just diagnosed with ILC a few weeks ago.  Saw a local surgeon first (right now they have me scheduled for a lumpectomy the week of July 22) and he has me scheduled for an MRI of both breasts on Monday.  Every question I ask about tumor size, grade, stage, receptors, etc., is met with "We'll know after surgery".  Is that typical?  Is it true that they can't tell me anything until after surgery? 

My insurance will pay for me to go to M. D. Anderson in Houston (a cancer center). This would mean a trip out of state and I would probably stay there through the treatments.  I have a couple of dear friends there, so wouldn't be alone.  I live a few hours away from Stanford University (in CA), and my primary care doc wants me to go there; he says bc is pretty routine as cancers go and that the treatment protocols are well known and that he doesn't think I need the cancer center, that the treatments will be pretty much the same at either place, or if I am treated here at home. For those of you who have been through this, what would you suggest?  I find it hard to think straight and make a good decision at this point.  I seem to have too much info...and not enough knowledge.

nash

Hi, Adrienne. Welcome.

They can't do staging (b/c they need to know what your lymph node status is) and exact tumor size until after surgery. However, they should be able to tell receptor status from the core biopsy. Tumor grade sometimes changes after they get the tumor out and can look at a bigger sample (bc tumors are not homogenous).  

I think a reasonable course of action for you would be to get your treatment at Stanford, but also get a second opinion at MDA. Dr. Christofanilli is the ILC specialist there.  

VBG

Hi Adrienne,

I too was diagnosed with ILC/IDC and after receiving initial treatment at my local east bay hospital moved my care to UCSF and their breast cancer center.  Based on where you live I would think that you could receive outstanding care between Standford and UCSF.  Are you comfortable with the surgeon you have chosen, is he/she a specialist as a breast surgeon?  Given the ILC you need to insure that if you are goig0n with a lumpectomy that they get 100% of the tumor.  With ILC it can be tricky since is is a "flatter" type of tumor and can have multi focal points some of which may still be too small to be seen even on MRI.  This is why it is important even for your initial surgery to have the best possible doc.

These boards are a great place to get knowledge, ask questions and get "smarter" when dealing with your docs and treatment.  The best surgeon at UCSF is Dr Laura Esserman, I love her!

Good luck and keep asking questions.

Valerie

AdrienneE

Thanks Nash and Valerie.  It is really helpful to talk to those of you who are ahead of me in this journey.  The initial surgeon I spoke with is a regular surgeon, not specifically a breast surgeon.  He is pushing for a lumpectomy, and assures me that it is at least as effective as a mastectomy, but I'm not sure I feel comfortable with that given the fact that ILC is so often hard to see and has a tendency to be bilateral.  Still educating myself about the pros and cons of each.  Bottom line, I want the best chance for getting rid of this and never having it return.

Do you have any websites, books, etc., that you would recommend for someone who is recently diagnosed and in the throes of making treatment and lumpectomy vs mastectomy decisions?

 Nash, is  Dr. Christofanilli at MDA or Stanford?  Stanford is going to count as my second opinion insurance wise, but we are still not ruling out MDA even if it means paying more out of our pocket. The more eyes the better, I think. I'd never heard of MDA before, but I guess they are one of the best.  Learn something new every day )

 My primary care doc also thought of UCSF but they are not inlcuded in my insurance network. In fact, I think Stanford is the only one covered on the west coast.  Weird!

Adrienne

nash

Adrienne, Dr. C is at MDA. He's one of the only oncs in the country who has a clinical interest in ILC.

As far as the sugery decision goes, you can get a good idea of the pros and cons of both procedures just by reading the posts in the Surgery section and the Reconstruction section of these boards. Ultimately, if there is no clinical difference between the two procedures in your case (no multi focal tumor, the ability to get clean margins, etc) then the decision will come down to what you are comfortable living with.  

I thought I was OK with bilats mast w/immediate reconstruction, until I read through the reconstruction posts and realized that I wasn't in a position mentally or logistically to go through that kind of surgery right now. Nor could I live with no reconstruction. After much agonizing, I decided to go with the lump/rads and semi-annual monitoring. Many other women have reached the opposite conclusions for their own cases. There is no right or wrong way to go.

Anonymous

Adrienne - First...I'm sorry you have to deal with all this...my heart breaks everytime I read a post like yours. However, rest assured that you will get lots of valueable info here from many experts!

JMO...I agree with your Primary Doc...treatment does not vary much...it is quite standard. The biopsy pathology usually includes the hormone status, and the grade, but not the stage. Alot depends on the size of the tumor is and if it is multi-focal. Both of which should also be included in the biopsy pathology.

Since you are scheduled for a lumpectomy, I would assume the tumor is rather small. BUT, the only way you can make a decision as to Lumpectomy vs. Mastectomy, is to know the size of your tumor. Yes, ILC can mirror...at the time of my DX, I had a Mast. And then 1 year later, after I finished chemo and rads, I had a Prophyl done based on the stats of the ILC mirror factor. Get a copy of your biopsy path report...it will answer your questions and help you make an educated desicion...Best wishes to you...so sorry you have to be here. Hang in there!

yogamary

Dear Rue, I wish you the best in your fight....I was diagnosed in 1999 with invasive lobular carcinoma and the only option given to me was a mod. rad. mastectomy and it turned out to be the best decision for me....I already had a SECOND tumor growing, proving that ILC can be multi-focal...I also had many nodes removed (36 to be exact) and 15 came back positive and I am still here and still disease-free....you are wise to get second opinions, but ultimately, whatever decision you come to, you need to be comfortable with it...my kids were 3 and 6 and I was willing to give up both breasts and an eyeball, if I had to, to see them grow up so the important thing is that you feel you made the best decision possible for your circumstances...take care and good luck

Gitane

Hi Adrienne,  Welcome!  I just read your post tonight and realized you had your MRI today.  The MRI will give you lots of information that will help you make your decisions. It's not true that you need to wait for surgery to get information.  The pathologist can read your tumor's grade, ER, PR, and Her2 status from your core biopsy slide(s).   An Oncotype DX score might also help, it looks at levels of expression of some important genes in your tumor.   Your surgeon or an oncologist can order this for you.  The MRI will give you a good estimate of the size, and possibly look for nodes.   Size of the tumor, nodes, and grade will be the most important.  Until you get lots of information in hand, and the opinions of the experts, it's hard to decide anything.  All of this can happen before surgery.  You can even have a sentinel node biopsy to look for cancer in the nodes (they hide well in ILC cases) and a PET scan (also helps with staging) done before surgery on your breast.  These will help you make decisions about chemo, too.  Hoping for good results on that MRI. 

ivgotit

How does one decide whether mastectomy or lumpectomy is better?  While I realize you have to factor in the doctor's recs and stage, etc.,  how do you help a family member make that decision?  We are in the beginning stages of seeing doctors and getting recs.  My mom is in her 70s and either stage 1 or 2 ILC.  She can't even think about mastectomy.  I had lumpectomy ten years ago which was benign and was told fibroadenomas and extremely dense breasts.  I go for mammos, but should I ask for MRI or ultrasound yearly?  Too many questions.......

Gitane

I will try to answer your question first.  If I had extremely dense breasts, I would want MRI.  It's the only thing that will find very small tumors and especially ILC.  As for your mom, that's going to depend on what her MRI shows.  Lumpectomy is fine if they are sure that they can remove all the cancer that way.  This is true of small tumors that are a "lump" that a surgeon can remove and be sure of having removed all the cancer.  In the case of ILC there may be more than one focus of cancer, the foci may be too large, or spread out.  The size of the cancer is hard to determine because of the way ILC grows, sometimes in sheets, or spider webs, or nests.  It's a tricky thing. That's why the MRI will help, because it's a good way to see what you've got.  Once your mom has the MRI to consider, her doctors will meet with her and discuss all the options and risks.  Many have chosen a mastectomy, just because they don't want the worry, or because the logistics of scanning and biopsy are more than they want to deal with.  (MRI gives false positives because it is so sensitive, and that can be stressful, biopsies are no fun either.)  I was not too excited about a mastectomy, but I am very glad I did it.  I had my other breast removed later, because I didn't want to worry about it. ILC also tends to go to the other side more than other kinds of BC.  There is a lot to think about.  You will find others on this web site who are making the same decision your mom is making.  If you read their posts you will get a snapshot of what is helpful in making the decision.  Just one more note,  I would recommend finding a good breast surgeon, someone who specializes in breast cancer.  That's not always necessary,  mine wasn't a specialist and was excellent, but others have said it helps.

GaPastor

dear rue-

 I am sorry about the Dx- it was more difficult to hear (for myself) than i expected-

 i hope in the last 3 months, you have found peace with your decisions and have moved forward-

it is not easy but this site and all the ladies here are very supportive and you never need be alone-

let us hold you in our hearts as we all move into tomorrow as survivors 

Seabee

Rue,

 I'd encourage you to wait until you get all the evidence before you make a decision. I'm in the middle of the process--surgery scheduled for Oct. 3--and I have decided, along with the surgeon, to take a gradual approach, since the imaging of the mass has produced very different estimates of its size, and the sentinel node biopsy hasn't been done yet. Sometimes the facts  will make the decision for you, but for me mastectomy would be a last resort.

Some recent studies I've been reading suggest that the risk of involvement of the other breast with unilateral ILC is very low--i.e. .7% per patient per year. One study of 57 Australian women found NO inolvement of the other breast, though there was a rate of recurrance in the same breast, somewhat higher for lumpectomy than for mastectomy.  

But as others have said, it's a personal decision, very much depending on your own experience and temperament. My mother was diagnosed in 1947, at the age of 45, and lived to be 82 and see her grandson. She had no choice but a radical mastectomy and rads. Her other breast was never affected. I'm an optimist and believe that, given much higher survival rates and more sophisticated treatments, I too can survive.

I also know from living with my mother what a mastectomy involves. Do some serious research on this before you decide. It's no Sunday picnic, though some of the women posting here are obbviously doing very well after choosing that option. Mastectomy was the right choice for them, and if circumstances dictate it will be the right choice for me.

As far as I can see there's no quick and easy way out of here, though some of us seem to carry the burden more lightly than others.