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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 29, 2010 11:55AM

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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Dec 2, 2015 12:45AM dtad wrote:

Just wanted to share the surgery decision is not an easy one. In my case I had both IDC and ILC in my left breast. The ILC tumor did not show up on the mammo or ultrasound, only MRI. My breasts are very dense so I opted for BMX due to difficulty in screening, avoiding radiation and breast symmetry. IMO if your breasts are dense a preoperative MRI is a must! Good luck and keep us posted

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 2, 2015 02:50AM Lojo wrote:

Hi grandma3x - just wanted to share / clarify that a MX doesn't guarantee that you will not need radiation.

I had a MX on the cancer side because of the size / position was such that a LX wasn't feasible, but I ended up needing rads anyway because of close margins. It is certainly less likely that you'll need rads with a MX, but you can't really count that as a definite.

At this point, they do such careful positioning for rads that heart/lung damage are really very minimal.

dx at 41, ILC, stage 2a, 4cm, 0/1 nodes, ER+/PR+, HER2-, grade 1, BMX 11/2013, tamoxif 1/2014
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Dec 4, 2015 02:06AM grandma3X wrote:

Thank you Lojo and Dtad! looks like my decision was made for me- my BS called last night after reviewing the images from the mammogram they did last week and said the two areas are too far apart to do a lumpectomy without resulting in disfigurement. So I have opted for MX just on cancery side (MRI showed nothing in other breast). I may decide to do a prophylactic MX on the other side at some point in the future. Has anyone gone through this voluntarily after the first one?

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 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 10/11/2017 Prophylactic ovary removal Hormonal Therapy Femara (letrozole)
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Dec 4, 2015 04:28PM - edited Dec 4, 2015 04:33PM by Leslie13

My primary tumours were in my right breast. I only had a .4 cm tumor in the left. But I'm very pleased with my BMX results. I was on the smaller size, so I opted for a nipple sparing, straight to implant surgery. Having the full size implant hurt like hades for about 3 weeks, but was much easier than expanders. I'm a C, and someone may be able to go to a D if they had good nipple placement and larger breasts. I even have full feeling in the left breast.

Make sure you have an excellent surgeon and plastics person if you have reconstruction. You can have amazing results. I don't feel like I lost my girls because the exterior is still there. You can also get a reduction if that's what you need, and having good symmetry is easier when doing both at once. Less worry about the cancer returning too.

Another reason to have both done at once is you have one surgery and recovery. That's a big cost savings. I'd encourage you to consider it

Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Dec 6, 2015 12:59AM - edited Dec 7, 2015 12:02PM by grandma3X

thank you, Leslie.

I just read an interesting commentary about prophylactic mastectomy "What do we know and what do our patients know"

http://jco.ascopubs.org/content/29/16/2132.long#.V...

I think it pretty accurately sums up our reasons for having the good breast removed: fear of another cancer, unwillingness to go through treatments again if another cancer occurs, anxiety associated with screening and potential biopsies of false-negatives. It also summarizes the actual risk of developing contralateral breast cancer, and mortality among women with new cancers in the good breast.

Unfortunately it does not differentiate ILC from other kinds of breast cancer. I've read studies showing only a smallincrease in metachronous lobular carcinomas compared to IDC (although synchronous ILC is more common). My first breast surgeon told me that 50% of women with ILC get it the other breast but I have not found any data supporting this. I got the feeling that this surgeon was pushing for BMX and have since found another BS. Ultimately we are all playing the odds and have to determine for ourselves how mush risk we are comfortable living with. The choice is more clear-cut for women with a genetic predisposition, but not so much for the rest of us. Does anyone know if there is thread on the discussion board about UMX vs BMX for ILC

Best wishes to all of you.

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 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 10/11/2017 Prophylactic ovary removal Hormonal Therapy Femara (letrozole)
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Jan 25, 2016 01:51PM Sunnyone22 wrote:

Thanks to everyone here for their valuable insight. I'm facing the mastectomy vs lumpectomy decision right now with ILC in left breast - about 1 centimeter.. I was diagnosed about 10 days ago and since then have gotten fairly promising news. MRI is clear on both Left and Right breasts except for the one ILC lesion. ER+ is very strong (100%). Also PR+ and Her2-.

At this point, I'm inclined to go with lumpectomy and radiation.. After post-surgery biopsy report is in (tumor size and stage, lymph node involvement if any) I can always go back for a mastectomy later, or even bi MX..

Somehow, this seems like the only logical decision for me. Am I missing something? Have I not thought of something at this stage that I should consider?

Carpe Diem Dx 1/15/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/14/2016 Whole-breast: Breast Hormonal Therapy 4/1/2016 Femara (letrozole)
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Jan 25, 2016 05:12PM Meow13 wrote:

What type of radiation? Are you a candidate for the Internal radiation to avoid skin damage?

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Jan 26, 2016 10:08AM stellamaris wrote:

@somersher: I have had a similar experience. Tried BCS, but did not get clear margins. Lobular is challenging, given that it is difficult to estimate the size. My BS's perspective was that if the BCS was successful, I would have saved the breast (at this point the biopsy path report was guesstimating a 1..5 cm tumour). Prior to the BCS surgery, I had an MRI to try and get a better idea of the tumour size, but the MRI showed nothing. Well , u guessed it - the tumour was 4.5 cm and she didn't get clear margins (lobular is 'sneaky"). So, I did have a re-excision to clear the margins (she said there was a 50% success rate). Unfortunately, it didn't work out for me, and I will have to have a MX after all. I started my AI after the 2nd surgery, so I feel a lot better knowing that whatever is left is already being treated. I will be having an immediate reconstruction, and I was told the wait between the re-excision and the MX (9 weeks) is not oncologically significant - in other words, most of the bad stuff is out, the AIs are addressing what's left, and the MX will take care of the rest. The decisions we have to make are very tough and very unique to each of us.

Sending you healing hugs.

Dx 10/5/2015, ILC, Right, 4cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 10/29/2015 Lumpectomy: Right Surgery 12/1/2015 Lumpectomy: Right Hormonal Therapy 12/17/2015 Femara (letrozole) Surgery 2/10/2016 Lumpectomy: Right Surgery 3/23/2016 Mastectomy: Right; Reconstruction (right): DIEP flap
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Jan 29, 2016 05:16AM Leslie13 wrote:

Stella,

You're right in that we see a large number of lumpectomies converted to mastectomies with Lobular cancer. There's frequently a lot of LCIS around the tumor too. My tumors were larger than imaged, but I went in knowing I was having a BMX. I didn't have enough breast to take that much without being maimed.

Sunnyone22,

It sounds like it was caught early, if there is such a thing with ILC. You will need extremely close surveillance after a lumpectomy and will likely need a MX sooner or later. If you need to go in "baby steps" to cope, you're probably safe. I received better cosmetic results from doing a BMX at one time and doing nipple sparing, straight to implant. I feel more secure too. I don't know how a lumpectomy + rads affects further surgery either

Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Jan 29, 2016 01:59PM 614 wrote:

Dear Sunnyone22:

I had a double lumpectomy and whole breast radiation at M.D. Anderson Cancer Center in Houston, TX.  I did not elect to have a mastectomy although my doctors in Florida, where I live, recommended the double mx.  My bs in Texas recommended the lx rather than the mx.  The lx made the most sense and seemed the most logical to me too.  I had a smaller lump at 11:00 and a much larger lump at 2:00.  My bs was able to remove both lumps even though they were not contiguous, and then do a breast reduction and a breast lift.  I have no residual skin issues nor any lasting effects after finishing my radiation.  I did have radiation burns at the end of my rad tx, but the burns went away and were not bad at all.  I sailed through rads and did not have any problems with rads at all.  My cousin, who just started rads this week, was amazed by how good my breasts look.  She couldn't believe how perfect my skin after rads looked and also how fantastic my breasts looked after surgery.  My breasts are absolutely phenomenal now.

I would recommend lx plus rads rather than mx to start off, if this an option for you.  If you have a lx, you can always opt to go back and have a mx.  Once you have a mx, you can't change your mind.  It is a final decision. 

I am under close surveillance - mammo/sono alternating with MRI every six months and I see my MO regularly.  I am taking Arimidex/Anastrazole.  I trust my doctors.  I am ok with the frequent testing and the testing does not cause anxiety for me.  I definitely continue to worry about the pleomorphic ILC and pleomorphic LCIS because lobular carcinoma is so hard to detect, however, I can live with the frequent testing.   Therefore, for me, the lx plus rads was the right decision.  It is a personal choice and everyone has to weigh all options for themselves to determine the best tx plan.

Good luck with your decision.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Jan 30, 2016 10:03AM HawaiiMom wrote:

hi everyone,

After going through lumpectomy, reexcision and (almost done with) chemo, i have decided to go with a bmx. I don't want to be watched like a hawk and be worried each time in have a mammo. I don't want to go through this again. I know there are never any guarantees too.

Yes, everyone is different...and i feel finally at peace with this decision.

Warm Hawaiian hugs to all!


Dx 8/19/2015, ILC, Right, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/25/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 10/21/2015 Lumpectomy: Right Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/30/2016 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/21/2016 Arimidex (anastrozole)
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Feb 1, 2016 12:31AM 614 wrote:

Dear HawaiiMom:

I am so happy for you that you were able to make the decision that will put your mind at ease.  I agree that bmx is the best decision.  Good luck.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Feb 1, 2016 01:29AM Leslie13 wrote:

I chose BMX because I had small breasts and larger tumors, so It was my better treatment and cosmetic result. If I started with DD's + instead of C- who knows

Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Feb 24, 2016 03:54PM - edited Feb 24, 2016 03:56PM by Sunnyone22

Leslie 13 and 614 and all...............

I finally find myself back on this thread for follow up. For the record, I chose LX in my case because every indication was that my tumor was fairly small and not aggressive. Turns out that was the case . Tumor was 1.1cm (.2cm smaller than MRI) Stage 1. Only one lymph node needed to be removed and it was clear. Tumor margins were clear by .5 cm. I have a lot of faith in my surgeon as she does ONLY breast cancer surgery.....all the time. I'm comfortable with my decision and, with not very dense breasts, I'm comfortable with closer scrutiny follow-up screening. Also plan to do rads AND AI therapy.

But one of the decision factors for me was my instinct. Never, during any of this diagnosis, testing, etc. did my gut tell me there would be a dark side to my results. I just had a feeling that lumpectomy was right for me. Of course, time will tell but I listened to that little voice inside me and I always will.

That said, thank you for your advice and sharing the logic behind your decisions. As we all know, this is such an individual experience and gaining insight into the thought process of others is invaluable. Ultimately, though, we forge our own path.

Carpe Diem Dx 1/15/2016, ILC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Surgery 2/16/2016 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/14/2016 Whole-breast: Breast Hormonal Therapy 4/1/2016 Femara (letrozole)
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Feb 25, 2016 11:16AM 614 wrote:

Dear SunnyOne:

I agree that listening to the inner voice and gut instinct is imperative.  I am glad that your surgery went well.  I did the lx too instead of the BMX.  I am happy with my decision.

Good luck.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)
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Feb 29, 2016 11:39AM mcshep777 wrote:

Somebody help me!!!! I am a newbie to all this and pretty overwhelmed. I can't find anything telling me what all these initials mean ... LX, MX ...and I always thought a BMX was a bicycle! I'm looking on the website but I can't find a definition page. :/ Help?

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Feb 29, 2016 12:10PM warriorwannabe wrote:

Hi McSHep. Im a newbie too. Just got diagnosed and still seeing docs. Here is a list of the abbreviations used here https://community.breastcancer.org/forum/131/topics/773727?page=1#idx_1

Dx 2/15/2016, LCIS/DCIS/ILC/IDC, Both breasts, 4cm, Stage IIB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/30/2016 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Feb 29, 2016 12:14PM mcshep777 wrote:

Thank you. It's so hard doing this. They want you to have an idea of what direction you want to go, but there are a trillion tests and waiting. It's hard to decide when you don't have all the facts yet. :(

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Feb 29, 2016 12:21PM warriorwannabe wrote:

OMG YES! Im on this roller coaster and want to get off this ride. I prob cant help you much. I just got diagnosed 2/15. In your profile, put in the specifics of what you have and it will appear in your signature on these posts (see examples above). That helps the ladies see. Im getting a double mastectomy (BMX) because of my fam history, and my own history of breast biopsies and issues with these girls. Im small chested and my tumor is large. Im trying to maintain calmness, but it is hard. I'll help you if I can :) Read thru this board, but take it in small chunks (can get overwhelming). See several docs and get opinions. If you have ILC, it has prob been growing for a while. You can take a few weeks to make your decisions.

Dx 2/15/2016, LCIS/DCIS/ILC/IDC, Both breasts, 4cm, Stage IIB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/30/2016 Lymph node removal: Sentinel; Mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Mar 1, 2016 04:58AM HawaiiMom wrote:

hi mcshep and warriorwannabe!

Sorry about all those acronyms, mcshep...update your profile and make it public so we can see.

Ask away about ILC...not that I am an expert but it has been my story since last July. My advice...yes it is slow growing, so you have time to weigh your options carefully. don't freak out while waiting for news. There are no wrong paths: everyone is different in this journey, so do what your heart tells you is right.

I opted initially for lumpectomy, when all we knew was there were two masses both less than 15 mm. After surgery, one turned out to be 6cm (here's that sneaky ILC) with margins too close for comfort. When i heard, i turned to my husband and told him i wanted the mx! Then i changed my mind because I wanted to keep my girls together. After going thru chemo, i decided on the bmx just for my own peace if mind. If this ILC is so sneaky and chances of recurrence are the same between lx with radiation and mx, i will go with mx because any recurrence will be right up against my skin and easier to detect. And just to be fair...and even...bmx!

Dx 8/19/2015, ILC, Right, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/25/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 10/21/2015 Lumpectomy: Right Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/30/2016 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/21/2016 Arimidex (anastrozole)
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Mar 1, 2016 07:39AM Peppin wrote:

I went for BMX. My doctors were insisting that lumpectomy would be enough. But I had a family history and the PET scan showed 2 tumours and the MRI showed many. My surgeon thought the MRI was over sensitive. I went for a second opinion and the second surgeon also thought a lumpectomy would be enough. As did my oncologist. But I considered my relatively young age, and I knew I needed chemo and radiotherapy and I really wanted to avoid the possibility of having to go through it all again. The MRI also highlighted the possibility that I had something in the other breast. So I went for BMX. I had ten tumours and it had spread to the axillary lymph nodes. I am glad I opted for mastectomy because with a lumpectomy we wouldn't have known that I still had other tumours that remained there. I have recently had my implant exchange for my reconstruction. I miss my breasts. Whatever you decide I think it is important that you are certain of your decision. In the past year I have gone over my decision-making process dozens of times. Every time I arrive at the conclusion that I made the right decision. So it is important to be certain of it. It also helps to gather as much information as you can before taking a decision. 

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Mar 2, 2016 08:10PM HawaiiMom wrote:

Wow, Peppin. Our ILC is so sneaky. I have the same reasoning for taking out my healthy breast...i don't know if anything will be detectable, even by mri. It wasn't for my right breast. I would rather not take the chance.

I am solid on the double mastectomy...it's the recon that is keeping me up. For now I am going flat. I am running out of sick leave and immediate recon will take two months. I can wait.

Dx 8/19/2015, ILC, Right, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/25/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 10/21/2015 Lumpectomy: Right Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/30/2016 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/21/2016 Arimidex (anastrozole)
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Mar 3, 2016 09:43AM gerrib wrote:

I'm trying to decide on this at present. Does a mastectomy give you a better chance of survival or just peace of mind. I have found out that mine is pleomorphic which is supposed to be more aggressive, usually Grade 3, though I don't have my grade yet. I will find out tomorrow, Would the grade make any difference of decision between mastectomy and lumpectomy? On ultrasound it is 2.4 cm. I have had contrasting CT scan to body which is clear.

2 primary breast tumours -IDC at 62, 4 years later pleomorphic ILC in other breast. Occurred whilst taking tamoxifen Dx 12/22/2011, IDC, Left, 2cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/28/2016, ILC, Right, 2cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/16/2016 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 4/3/2016 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 3, 2016 05:56PM Smurfette26 wrote:

Congrats on the clear CT gerrib.

From what I have read the outcomes for those who have lumpectomy and rads are very similar to those who have a mastectomy but for some I think mastectomy provides greater peace of mind. I had multifocal disease so mastectomy was my only option. Lobular is hard to detect and often the tumours turn out to be larger than they appear on imaging. This was certainly true in my case.

Sending positive thoughts and strength. Donna

Dx 9/12/2015, ILC, Right, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 10/9/2015 Lymph node removal: Sentinel; Mastectomy: Right Chemotherapy 11/8/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 1/14/2016 Arimidex (anastrozole)
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Mar 6, 2016 12:31PM gerrib wrote:

Thanks Smurf.

I have decided to have breast MRI to determine more accurate tumour size and to see if there are any other hot spots. In Australia breast MRI is not Medicare rebatable unless you have 1st degree relatives who have had BC and a few other situations. So I will be paying AUD$600, but I consider it worth it if it gives me more information.

2 primary breast tumours -IDC at 62, 4 years later pleomorphic ILC in other breast. Occurred whilst taking tamoxifen Dx 12/22/2011, IDC, Left, 2cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/28/2016, ILC, Right, 2cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/16/2016 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 4/3/2016 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 6, 2016 05:06PM HawaiiMom wrote:

Hi Gerrib and Smurfette

My MRI showed the same two foci detected in mammo and ultrasound, one 10mm and one 15mm. The second one was in reality 6cm. Sneaky ILC.

Because of that sneakiness I decided on a double mastectomy for that peace of mind.

Dx 8/19/2015, ILC, Right, 6cm+, Stage IIB, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 9/25/2015 Lumpectomy: Right; Lymph node removal: Sentinel Surgery 10/21/2015 Lumpectomy: Right Chemotherapy 11/13/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 3/30/2016 Mastectomy: Right; Prophylactic mastectomy: Left Hormonal Therapy 4/21/2016 Arimidex (anastrozole)
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Mar 8, 2016 04:16AM Peppin wrote:

Dear Gerrib,

In my case the MRI showed many more tumours than the mammography, even the PET-CT scan and ultrasound. My MRI lit up like a decorated Christmas tree. And the MRI was right in my case - at least on the side with tumours. On the other breast it highlighted 3 spots which turned out not to be malignant.

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Mar 8, 2016 01:20PM Chloesmom wrote:

Doctor told me no difference in life expectancy (mortality) with BMX vs MX vs lumpectomy w rads. But her experi nice was a huge number of people ultimately had multiple surgeries with ILC. That's a quality of life issue. All those recoveries and screenings. Also my intuition said get rid of lefties even though MRI was negative. Had some tingling there and worried. Would have gone niur switch more mammon and MRIs then the pathology report came back not clear on left. Doctor said I'd have had th 2nd MX in 2-3 years based on what was there they hadn't seen. It's 14 months. Never regretted decision for a minute. Loving the flat life.

No recon - Loving Flat & Free! Oncotype 25 (Note: ILC hides in the shadows- US, Mammo, MRI neg on "good" side but not really good after all!) Dx 11/21/2014, ILC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR-, HER2- Hormonal Therapy 11/25/2014 Arimidex (anastrozole), Aromasin (exemestane), Femara (letrozole) Surgery 12/12/2014 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left Chemotherapy 2/3/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Mar 11, 2016 07:18AM gerrib wrote:

i have decided on a UMX next Wed. The MRI indicated 2 areas, one which has been biopsied as pleomorphic ILC (~2.4cm). The other area nearby is smaller and BIRADS 5. I could have had another core Bx but decided after reading all the posts about ILC to have UMX. I wanted to have BMX but would have had to wait for a month so have decided to have one at a time removed. I'm not having reconstruction. My other breast where I have had Lx and Rx for IDC appeared clear but I will probably have it removed later.

This morning worried that I am making the right decision!!

2 primary breast tumours -IDC at 62, 4 years later pleomorphic ILC in other breast. Occurred whilst taking tamoxifen Dx 12/22/2011, IDC, Left, 2cm, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 1/3/2012 Lumpectomy: Left; Lymph node removal: Sentinel Dx 2/28/2016, ILC, Right, 2cm, Grade 2, 0/3 nodes, ER+/PR-, HER2- Surgery 3/16/2016 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 4/3/2016 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Mar 11, 2016 10:49AM 614 wrote:

It sounds weird to me that your doctors would make you wait one month to do a BMX, yet they will do a uni in a week.  I am not a doctor.  However, it seems to me that doing one surgery makes more sense.  If a uni can be done in a week, why can't a BMX be done?

I think that you are making the right decision.  I would do the same thing if I had your dx.  Don't second guess yourself.

Good luck and I am praying for you.

Hormone + Pleomorphic ILC, Pleomorphic LCIS,& Invasive Tubular Carcinoma for 1st BC DX. Hormone negative, Grade 3 DCIS for 2nd BC DX. History of dispersed ALH along with PASH, FEA, and focal atypia. Oncotype 14, Ki67: 21%. Dx Premenopausally. Dx 6/25/2014, ILC, Left, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 6/25/2014, LCIS, Left, 1cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Dx 7/22/2014, LCIS, Left, 4cm, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 7/22/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel; Prophylactic ovary removal Radiation Therapy 9/6/2014 Whole-breast: Breast Hormonal Therapy 10/5/2014 Arimidex (anastrozole), Zoladex (goserelin)

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