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Topic: Mastectomy vs Lumpectomy with a Lobular diagnosis

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jan 28, 2010 05:25PM

somersher wrote:

Would anyone share their decision making process with me concerning whether to have a mastectomy vs lumpectomy, and if mastectomy did you do bilateral due to lobular's tendency to recur?  I had a lumpectomy three weeks ago but the margins were not clear, and I also had micromets.  Dr says no need to remove axillary nodes and the plan is to do a wider exision, but I'm getting scared.  Can anyone offer advice and/or experiences along this line?  Many thanks

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Jan 28, 2010 05:38PM momand2kids wrote:


I had a lumpectomy- and the margins were clear.... the thing I remember most was that the surgeon told me that mastectomy was not warranted unless I wanted to do it.... the lump was very discrete, very contained and there was no node involvement.  I had so much regard for her as a surgeon that I decided to go that route--- but I also had chemo and radiation and am now on femara.   I also had the oncotype test and my risk of recurrence was calculated at below 9%---so all of that data helped me decide on the treatment---

For me it was all about sleeping at night.  I have never questioned the lumpectomy- my breasts are D cup so there was very little to worry about cosmetically.  I did wonder a bit about ILC and recurrence, but those rates are not outrageously high.  I think in the end, the decision is about what you can live with.  I am almost 18 months away from diagnosis and I seem to be still fine with those decisions.  I just wish we could all know how we would feel in advance!

One thing my surgeon told me before the surgery was that in about 20% of the cases they have to do a re-excision.  She made it clear to me that it would not mean that anything is wrong, just they had to get margins.  So it is not so uncommon.  

If you are planning to have chemo- then that should really help with the micromets... additionally radiation drops the recurrence rates and the hormonal therapies are apparently very powerful with ILC..... my onc feels like the hormonal therapies are the best weapon of all.

At the end of it all, you have to think about how comfortable you are with the type of surgery.  Maybe go through the re-excision, see how it goes---- see how you feel.  

You are at the early stages of this--it does get better, I promise.  

Dx 10/29/2008, ILC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/25/2008 Lumpectomy: Right Chemotherapy 1/16/2009 Adriamycin (doxorubicin) Radiation Therapy 3/23/2009 Breast Hormonal Therapy 6/15/2009 Femara (letrozole)
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Jan 28, 2010 05:42PM Hattie wrote:

I had a lump, re-ex for better margins, and had ILC as well as IDC.  I left the surgery at that, with drs. ok.  would have taken it all, but several docs said it was enough.  (also had chemo and rads.  chemo due to size).  my "good" breast is still "good", 5 years out, and the other was small to begin with and now kind of funky, but still functions.  think about what will make you most comfortable, and do that.  you really do have some time to figure it out.

take care,


life is good
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Jan 28, 2010 05:49PM paml wrote:

I had a mastectomy on my left breast because tumor was large( 5.5 cm) I had a prophylactic mastectomy 8 months later because of ILC and the chance of recurrence in the other breast.

I did not have reconstruction. I dont regret the decision to have the mastectomy on the other breast but I am older. I think it really depends on the persons individual situation.

Dx 12/12/2008, ILC, 5cm, Stage IIIB, Grade 2, 2/9 nodes, ER+/PR+, HER2-
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Jan 28, 2010 06:39PM awb wrote:

my mom had ILC many years ago (negative nodes)--had a lumpectomy, radiation and tamoxifen and is now a survivor of over 23 years and still going very well at 80 years old.


"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/15/2003 Lumpectomy: Right Hormonal Therapy 10/29/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/4/2005 Prophylactic ovary removal Hormonal Therapy 2/27/2009 Evista (raloxifene)
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Jan 28, 2010 07:08PM karen1956 wrote:


I had a bilat with immediate recon (expanders then silicone implants). A lumpectomy was not an option for me as there was too much cancer in my was in atleast 3 places....also in the lymp nodes.  So on cancer side, modified radical mastectomy and axillary dissection.  Other side was prophy.  Both surgeons I intereview suggested that I do a bilat...since that was one of the questions on my list of questions it was an easy decision.  The prophy side ended up being pre-cancerous. I had chemo, rads, ooph and on Aromasin. 

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jan 28, 2010 07:55PM - edited Jan 28, 2010 07:57PM by wallycat

Each of us comes with baggage/personalities that vary, so only you know yourself and what kind of worrier you are.

I have friends who opted for lumpectomy and they are at peace with the decision.

I opted for bilateral mx because I am a worrier.  I did not want 6 month follow-ups for life.  I did not want radiation.  My doctors (three of them) said I should have the lumpectomy and rads and tamoxifen but I needed peace of mind.  The surgery gave me as close to peace of mind as someone being told they had cancer can.

Editing to add:  My healthy breast was indeed healthy once removed.  I did not have a multifocal tumor.  I do not regret my decision.

Best to you with your decision.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Jan 28, 2010 07:58PM somersher wrote:

Karen - Why did you have to do radiation also?  What about the axillary dissection - has it left you with bad side effects or was it not that big a deal?  Was the recovery from the bilateral mastectomy and reconstruction painful?

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Jan 28, 2010 08:22PM Gitane wrote:

I had a mast on the left because of the tumors being so spread out.  I had a prophy mast on the right for peace of mind, turns out lots of precancerous stuff there, so I'm happy with my decision. Expander/Saline implant reconstruction.  No rads.  I feel good about my decisions.

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Jan 29, 2010 03:54PM Seabee wrote:

As far as I could gather from the reading I did after my diagnosis, there is no special tendency for lobular to recur; in fact, the studies I read suggested that IDC has a slightly greater tendency to recur than ILC. Maybe you're thinking of the tendency to develop cancer in the other breast, which does happen somewhat more often with women diagnosed with ILC.  But that could be simply because they are an older patient population.

Because of the tendency of ILC to grow in sheets rather than to form a discrete lump, it is harder to get clear margins the first time. I got clear margins on the second attempt, and the second operation was much easier than the first. But in some cases it is impossible to get clear margins, and then mastectomy becomes a more compelling option.

Node inolvement is a separate issue. If you have it, and don't have a low oncotype score, oncologists tend to push chemo, but as far as I know having or not having it doesn't factor in to whether one chooses a lumpectomy or a mastectomy. The main issue there is whether the tumor is confined to an operable area, and how much anxiety the patient has about recurrence, since there is a 1-2% greater chance of local recurrence with a lumpectomy. I thought this sounded like a pretty low risk, especially since my mother had to live for 36 years with the consequences of a radical mastectomy.

I don't know all the details of your diagnosis, but your surgeon seems to me to be taking a sensible conservative approach.  I wouldn't consider a mastectomy unless I had more trouble getting clear margins.

Per spem vivo. Dx 9/9/2008, ILC, 2cm, Stage IIB, Grade 1, 3/23 nodes, ER+/PR-, HER2-
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Jan 29, 2010 04:39PM rreynolds1 wrote:

I had an MRI which showed the cancer to be isolated to one location in my right breast.  It was 1.8 cmm and my surgeon felt a partial mastectomy was appropriate.  It was surgery that left my breast in tact but was slightly smaller than my left breast.  I chose that surgery based on the results of my MRI and the advice of my surgeon.  She said the results would be the same if I had a mastectomy or partial mastectomy with radiation.  I would have had any type of surgery which gave me the best shot of living a long life.  They are only breasts and can be reconstructed. 

Good luck with your decision.


Roseann Dx 2/2/2009, ILC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Jan 29, 2010 05:29PM kmf wrote:

My largest side of my ILC was 1.5 cm.  I also had LCIS.  Both were taken out in my lumpectomy.  I have small breasts and it definitely flattened me out, but my padded bras make it all even.  (same padded bras that I wore pre-surgery -- not that big of a deal).  I feel like any surgery is a trauma to the body. Why do a big trauma such as a mast. when a small trauma will get the job done?  I am currently on my 23rd rad tx. -- not horrible -- a bit burned in a couple of places but nothing that isn't very, very manageable.  Tamoxifen has been not too bad either. All in all, not too bad and I'm glad I didnt' have a major reconstructive surgery to deal with.   I know a lady who's cancer treatment was delayed because of reconstruction mishaps w/her mastectomy.  No need to go there unless there are other compelling reasons to do so.  I don't mind going back for screenings.  Karenanne

Dx 11/20/2009, ILC, 1cm, Stage I, Grade 3, 0/1 nodes, ER+/PR+, HER2-
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Jan 29, 2010 05:50PM Kleenex wrote:

Somersher - My profile goes into my experience with this "pick your surgery" decision, if you want to read it. I agree with statements above: everyone comes with their own baggage and paradigms. I'm a "less is more" person, and not a huge worrier, so I am fine with my lumpectomy and the need to have follow-up scans every 6 months.

Karen may have not had good margins even with her bilateral, or the issue may have been her nodes - you can't always skip radiation by having a mastectomy or two. Depending on where the tumor was located and if nodes were involved, you can end up needing radiation even with bigger surgery. My tumor was located in such a way that radiation was almost guaranteed even with a mastectomy - great big margins weren't going to be possible.

You can always opt to have more surgery, after you see how you recover and how you feel. You can NOT put things removed back on later if you change your mind or have problems with the reconstruction process.

If I ever was faced with multiple tumors or a large one where mastectomy was indicated, I'd likely do a bilateral, mostly becaue if there was a LOT of cancer found in one breast, I'd be VERY worried about the other one. With one small, slow-growing tumor up in the corner of one breast and (as far as we know) nothing else in either breast, I'm good with my little divot 18 months later.

I found it very helpful to read Dr. Susan Love's Breast Book. When you make the decision that is the right one for you, you'll know. You will feel at peace with it.

Good luck to you! This is one of the worst parts that you're dealing with now.


Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 30, 2010 10:50PM karen1956 wrote:

Somers....I had rads because of the number of lymph BS was pretty conservative and only took out the first layer of lymph nodes...only 12 removed and 8 were far no LE...recover from bilat and expander recon was a couple to 3 weeks....recovery from exchange was a week...

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jan 31, 2010 04:53AM Snowbird wrote:

Coulda had a lumpectomy, but chose Mx hoping to avoid radiation. I was lucky. Clear nodes, mission accomplished...  no radiation! I read on these boards that it (rads) increases your risk for lung cancer 10 years out and that was confirmed by the radiation oncologist I was forced to consult with before my BS would do the Mx. My onc agreed, saying we have a better chance of curing BC than LC, and my primary said I'd have a better cosmetic result after Mx & recon than after a lumpectomy, so off it came, followed a year later by the other and DIEP recon for both. I'm happy with my decisions, and DIEP results and recovery was better for not having had rads. FWIW, and good luck with your decisions...  they're very personal and what was right for me may not be for you.

DX 10/15/2008, ILC, 2cm, Stage IIa, Grade 2, 0/3 nodes, ER+/PR+, HER2- OncotypDX=26(17%) BiLat DIEP (1-delayed, 1-immediate) 12/8/09, Stage 2 10/22/10 w/Craigie/Charleston COURAGE IS NOT THE ABSENCE OF FEAR, IT'S ACTING IN SPITE OF IT!
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Jan 31, 2010 12:32PM Rabbit_fan wrote:

This was a really hard decision for me because I got conflicting advice from different doctors, so I got 4 opinions before I made my choice.  It was 1 absolutely for bilateral, 3 for lumpectomy.  I went to the Mayo Clinic for my 4th opinion because I was so confused. 

My tumor was 1 cm, not multifocal, and there was no evidence in the other breast, so most docs said lumpectomy was indicated.  At Mayo, they told me that bilateral was certainly reasonable if that was what I wanted.  They really stressed that either choice was OK, but it had to be my choice - what I felt comfortable with.  They said that mostly where people have regrets is if they feel like they were pushed in a direction that didn't feel right to them.  You have to really think about what your instincts tell you is right for you.

Like others have said, we all have our own take on it - some people are more worried about the more extensive surgery, some are more worried about rads, or keeping breast tissue that they fear will develop cancer. 

If my stats had been different and there had been more consensus for bilateral I would have done it, but given the choice, lumpectomy felt right to me and I don't regret it.

Dx at age 45 via screening mammo. Oncoplastic lumpectomy, radiation, tamoxifen. Oncotype 11-refused chemo. Cancer was my Jillian Michaels. Dx 4/2009, ILC, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 5, 2010 05:39PM suzieq60 wrote:

I had a lumpectomy, not knowing at the time that it was lobular. The pathology came back a being grade 3 pleomorphic HER2+ which started me worrying. Also extensive classic LCIS was found and it did not say the margins were clear of that. I have now seen another breast surgeon and talked to my oncologist about the LCIS and have been assured that LCIS is not the same as DCIS in that it is not cancer, but abnormal cells that indicate you are at a high risk of developing cancer. Well I've already had that bit. The hormone treatment will act on those cells and help prevent a recurrence.

I thought I should now have a mastectomy, but the bs said that I just bear close watching. She seemed happy with my treatment so far. I was also worried about the other breast and she said we can do an MRI in October after the treatment is over etc.

If it does come back, well we can deal with that when the time comes. As others have said , why not start small if you can.

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 24, 2010 05:26PM JannaC wrote:

Hello somersher and momand2kids...I was diag a year ago and had a lumpectomy.  It was a very hard decision for me.   Plus, I too, needed to go back for a reincision in order to get clear margins.  That certainly sent me into a tail spin and  I seconded guessed myself for a long time.  I was a DD so during the first surgery I even had a breast reduction down to a small B, and they still didn't get clear margins!  My oncotype score was 19, but I still chose to not have chemo, on my oncologists advisement.  I took 5 weeks of radiation and am on femara.  

Listen to your doctors and to yourself.  I have calmed down a lot in a year.  BTW, momand2kids, I don't even know about we all have that, how do you know if they are soaring through the body?  Thanks, you'd think I'd know more by now, but I learn new things on this site all the time.  :)

Dx 2/18/2009, ILC, <1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Apr 5, 2010 05:48PM Pt0121 wrote:

For what its worth,  I was suppose to have a lump. but fell sick for a couple of weeks.  That posponed the surgery.  I then saw another surgeon who suggested i have the masectomy instead.  The ultrasound showed 1.9 cm.  and the mri showed 5 cm.  He told me if it was as big as the mri appeared it would look cosmetically horrible.  Well anyway all things happen for a reason.  I decided to do the masec.  and in the process found out it was attached to my chest wall.  If i had done just the lumpectomy they may not have found the chest wall part. 

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Dec 27, 2010 03:30AM annemark wrote:

Hi Suepen I was wondering how you are going as I am facing a similar situation. Just had a lumpectomy for lobular carcinonas (3 under 2cm) and a rexcision due to problems getting clear margins. Despite two surgeries there is still LCIS in the margins and BS is now suggesting I consider a mastectomy or wait and have an MRI to see what is there in the breast that has had BCT and the other good breast.. HER 2 status is negative and its Grade 2. Only some cancer cells in one lymph node but had them all removed with the rexcision. Did your MRI show anything and was it a good detection strategy? If I do wait and it does recur is that a serious issue? Can I wait to consider doing a mastectomy till then? I suppose after two back to back surgeries to retain the breast its now hard to consider losing it.

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Dec 27, 2010 01:38PM suzieq60 wrote:

Hi Anne - thanks for asking how I'm going. Well I did end up having an MRI in October as they found something in my other breast when they did the mammogram. It looks like it was missed last year as we can see it on my last year's mammo, but they didn't report it.  The MRI showed the original breast is fine but it found 3 spots in the right breast. One turned out to be IDC grade 2 - clear nodes. I've had all 3 spots removed by lumpectomy - still determined to avoid mastectomies. The other spots were ADH. I'm to start radiation in January. Of course, if there is a next time I won't have a choice. This time I was adamant to go the conservative route (even though my new surgeon wanted me to have the breast off) as I want to give the chemo/herceptin/arimidex etc a chance to work. This new one probably wouldn't have repsonded to chemo as lower grade cancers don't - it may have kept it in check however. At least it wasn't HER2 again and was only 5.8mm.

I should have been referred for an MRI last year. One diagnosis (especially of lobular cancer) should be enough to have an MRI prior to surgery. In a way I'm glad it wasn't found then as you can imagine they would have probably urged me to have a BMX given cancer on both breasts. Then again, all of this screening, surgery etc all over again has been very stressful.

I will now have alternate Mammo/ultasound and MRI every 6 months.

Regarding your own situation - my new surgeon was not the least worried about the LCIS being in the margins of the original lumpectomy. And that breast is clear of cancer still.

It would be hard after what you've already gone through to go back for more surgery. The one bad thing about the MRI is that it did show 2 non cancers and I've had them removed owing to the fact the first one was cancer - they were being cautious. I do think it's worthwhile having one though, if you can afford it, as there are no refunds unless you are under 50 and BRCA positive.


2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Dec 28, 2010 04:15AM annemark wrote:

Thanks Sue for your response. It is hard to know what to do when given the option of mastectomy on one breast, on both breasts, or leave it alone and see what happens. I have arranged for a second opinion from a BS re the margins and what this means for wait and see strategy. I am also having my first oncologist appointment tomorrow and will see what he has to say as well about it. I am hoping things become clearer with more info and over time. Thanks for your story as it helps to hear how and MRI can be used when the BS is not sure of the results of the BCT. I am in Melbourne but travel to Brisbane a lot for work, and I may even travel up there is a few weeks before I start chemo. I am going to borrow a friend's compression sleeve for the flight as I am a bit nervous about lymphoedema. All too much to worry about moving from a really well fighting fit person to a not so well one in all but a few weeks.

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Dec 28, 2010 05:18AM suzieq60 wrote:

Anne - check out the Aussie sisters thread on the chemotherapy page. Someone started it today and we're all getting together there.

My onc and surgeon both said they weren't worried about the LCIS in the margins as it is not cancer - just an indication that you are at higher risk. It is often found only when an invasive cancer shows up. You can have LCIS and never get an invasive cancer.


2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Dec 28, 2010 12:43PM LauraGTO wrote:

If you have dense breast tissue, you may want to consider Mast. The denser they are, the longer it can hide. My 4cm tumor was misdiagnosed as a lump of dense tissue. Just saying...

With hope there are possibilities. Dx 7/2005, ILC, 4cm, Stage IIB, Grade 2, 1/11 nodes, ER+/PR+, HER2-
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Jan 21, 2011 09:45PM momof4kids wrote:

I have just been diagnosed after a mammo, ultrasound, core biopsy, and HD MRI with a 2.5cm, stage 1, ILC in my left breast. 3 years ago almost to the month, I was diagnosed with DCIS stage 0 in my right breast.  The DCIS was discovered after mammo, ultrasound & confirmed with an MRI and core biopsy. The DCIS was treated with a  lumpectomy (clear margins beyond what is suggested), and I was treated with radiation. Took tomix. for  4 months. The side effects were not good so I stopped. I am 45 years old.

My last mammo/unltrasound was 8 months ago and everything was clear. This recent one (Jan 3rd) was when a questionable area was found by ultrasound. It has been a whirlwind with tests and it is making me very scared. I met with a genetics counsler and have had my genetic test submitted for BRCA. Results come back next week, the Dr. somehow has arranged to rush the results when it normally takes 3 weeks. I just found out both grandmothers ( all extended family in Europe) died from ovarian cancer and one of them had breast cancer also. Aunts on one side died of Ovarian cancer. A Cousin died of breast and another cousin had breast cancer and opted for a Mast.  My Dr. has been great and it seems he is aggressive in confirming diagnosis with as much testing as possible and takes beyond recommended margins to confirm. 

I am facing the decision to do a bi-lat mast. The Dr. suggested but was clear it was a decision entriely up to me but because of the DCIS in one breast and now this showing up within 3 years in the other breast as a new cancer and knowing the statistics of ILC appearing in the other breast, it was his suggestion. I am really scared about my future and the possibility of cancer reoccuring. There was no mention of chemo or radiation if I opt for mast. but that will be covered in my upcoming appt. If I do lumpectomy, I will follow up with radiation (new radiation type, go 2x a day for 5 days) and continous monitoring. Either decision the Dr. has said he will taking lymph nodes as well for testing.

I'm sure if the BRCA comes back positive, it's a no brainer, double mast and possible hysterectomy. I am also terrified of how I will look after a mast. I do plan on reconstruction but the results of that are sometimes in question. I sound so vain placing my appearance before my life but lets face it, I'm in my mid 40's, I'm not posing for any Sports Illustrated swim suit issues anytime soon however my breasts were really the one thing that held up over the years and still made me feel sexy with my husband and now to have them gone as well as the sensation, makes me 2nd guess what I should do if the BRCA comes back negative. Simply put, I am scared either way. 

Sandy Dx 1/12/2011, ILC, 6cm+, Stage IIIA, Grade 1, 1/6 nodes, HER2+
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Aug 8, 2013 10:50AM ASunnyJ wrote:

I'm 47 and had surgery 2 weeks ago to remove a 1.5 cm, ILC tumor, Stage 1, no node involvement.  My Oncotype score was 15. I am waiting for my BRCA test to come back.  If it's negative, I'm weighing a bilateral mastectomy and DIEP reconstruction instead of having radiation.  I want to be aggressive with my treatment and my doctor said the surgery may help with my peace of mind but there is still a chance that the cancer could recur on the breast tissue left behind. I am trying to decide what to do.  Any advice would be appreciated? Thanks!

Dx 7/5/2013, ILC, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 8, 2013 03:31PM Kleenex wrote:

ASunnyJ - I haven't been on here in forever, but I would still post the exact same answer I posted in January of 2010, above. I am still happy to have had just the lumpectomy and radiation, and am still taking Tamoxifen.

If you are trying to avoid radiation, make sure that the surgery will actually allow you to do that - my tumor was located in a place where good margins would've been impossible, and so I would've had radiation no matter what surgery I would have selected.

There's a tendency to freak out and want the breasts gone - in some cases, this may, as your doctor said, help with your piece of mind; but notice that he didn't say it would most definitely eliminate your chance of recurrence. Bigger surgery would reduce your risk of a new lump in breast tissue because there would be less breast tissue, but lumps in breasts are not the main problem. Studies have shown that long term survival rates are the same for lumpectomy with radiation OR mastectomy. I chose the lumpectomy because even though radiation wasn't fun, it was time-tested and seemed like the lesser pain in the butt long term. I would choose it again today.

If you haven't already, take a look at Dr. Susan Love's Breast Book. She does an excellent job of helping weigh the options. Your location isn't listed - I'm in Texas, which is in a part of the country where "more is more," and women with small tumors often opt for bilateral mastectomies with reconstruction. On the East and West coast, where new medical technologies tend to emerge, they do breast conservation - lumpectomy - when they can.

Dx 6/19/2008, ILC, 2cm, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Sep 8, 2013 03:42PM - edited Sep 8, 2013 03:50PM by MsPharoah

Hello ladies. My first reaction was to have my breasts removed, but my surgeon told me that he needed more information before he made a recommendation. I had tests for BRCA 1 and 2....negative. I had an MRI, which showed that my left breast was healthy and I only had a small residual amount of cancer at the biopsy other tumors in the right breast. My surgeon told me that I had a small problem and that I shouldnt try to solve it with big surgery. He also gave me a lot of information about mastectomy to consider. I am glad I chose breast conservation.

I then got the dreaded 24 on the oncotype test And had to decide about Chemo, no chemo.

The decisions we have to make are very difficult. Ultimately, you need to be comfortable with your decisions and never look back.


Oncotype 24 Dx 12/4/2012, ILC, Right, 1cm, Grade 1, 0/1 nodes, ER+/PR-, HER2- (FISH) Surgery 2/18/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 4/9/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 8/21/2013 Femara (letrozole) Radiation Therapy 9/4/2013 Breast
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Sep 12, 2013 08:15AM - edited Apr 16, 2014 11:56AM by Moderators

Hi everyone! In my first consult, my surgeon laid out two options - preoperative hormonal therapy, followed by lumpectomy and radiation. Or masctetomy with or w/o immediate reconstruction. I had an Oncotype test done first, which predicts your rate of recurrence - if high score, I'd be treated more aggressively with chemo, if low score, I'd be treated with hormonal therapy. My gut reaction was to just have the masctemtomy. It was very difficult waiting for those test results!! Fortunately I scored low (10/100) so no chemo for me. After discussing it with my husband and going back and forth for days, I finally decided to go with breast conservation. The surgery is less invasive and the survival rates are the same.

Oh, I should also mention I had BRCA gene testing done - which was negative.

All along the Dr's said that I would do well on hormonal therapy being ER and PR postive HER-2 negative. The nurse said sometimes the tumor shrinks completely. I didn't really believe her, but I liked that with this approach, I'd be treating my cancer immediately and if nothing else, it would be stopped from growing further. With a mastectomy, I worried that the surgery is so invasive. I was told that for best results, reconstruction should be done right away. So even though they'd take the breast, while I was healing from surgery for 3 months and they were in there doing all these invasive things like fillers, there would be little cells making their way through my body undetected. The whole process scared me. As you may know, ILC has a higher chance of spreading to other areas of the body. 

Another consideration is that my tumor is grade 2 and slow growing. Since I had the option, and some women, don't -- I decided to try the lumpectomy. They were right about it responding well! In just one month, my tumor shrank by 50%! I can barely feel my tumor anymore where before it was this HUGE mass. I worry about the upcoming surgery, of course, and still wonder if I've made the right decision. I worry if he'll be able to get clean margins or find lymh node involvement. On the other hand, there may be no tumor left! If so, I'd still have to follow the plan for surgery and radiation, followed by 5 years of Arimidex. BUt so far, so good !Laughing 

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Sep 12, 2013 12:12PM Lily55 wrote:

ILC does not have a higher chance of travelling to other parts of the body , the main difference s that it tends to recur or metastasize later, ie between years five and ten or ten to fifteen and as itis harder to find is often further advanced when found

Dx 4/2012, ILC, 5cm, Stage IIIA, Grade 2, 7/14 nodes, ER+/PR+, HER2- Surgery 5/2/2012 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Radiation Therapy 8/14/2012 Breast, Lymph nodes Hormonal Therapy 7/18/2013 Aromasin (exemestane) Radiation Therapy 3/7/2019 External: Bone Chemotherapy Taxol (paclitaxel)
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Dec 1, 2015 05:35AM grandma3X wrote:

Hi everyone- I noticed that no one has posted here for a while, but I am now having to make this decision: lumpectomy with rads vs mastectomy. I am a B cup and have 2 small spots in the URQ of my last breast. One confirmed ILC and I'll get the path results on the other one today. MRI shows nothing in my right breast. The surgeon thinks she can get both spots with a lumpectomy and I met with the RO yesterday who seemed to think a lumpectomy is the best choice. However, I am not sure I want to live with the increased risk of a recurrence or the risks of lung and heart damage from rads. I'm also not sure how much I would be disfigured. Today I meet with a PS. My question is about getting a BMX. I'm thinking of having an MX of the chancery side with a TE, then when they do the exchange, have a prophylactic MX of the good side with immediate reconstruction. My reasoning is that I only want to deal with 1 MX at a time. Has anyone done this? How did you make out? If you had a chance to do it over again, would you go the same route? Thanks to all of you for posting your experience! The discussion boards here are the only thing that has kept me sane over the last 3 weeks since my dx.

Oncotype score 10. Married 35 years, 2 kids, 3 grands. Marine biologist/biochemist. No BC in my family tree. First diagnosed with multi focal ILC with 2 small tumors seen on MRI. Final pathology showed 1 large tumor measuring 5 cm! Dx 1/13/2016, ILC, Left, 5cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 1/13/2016 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 5/18/2016 Prophylactic mastectomy: Right; Reconstruction (right): Tissue expander placement Surgery 10/26/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery 10/11/2017 Prophylactic ovary removal Surgery 10/11/2017 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Hormonal Therapy Femara (letrozole)

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