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Topic: ILC recurrence

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

Posted on: Aug 28, 2012 01:22PM

Nanka wrote:

Hi all ILCers! I am debating about getting a bimast but was wondering if any of you have had a recurrence in the other breast (as ILC supposedly tends to do). This will help with my decision. Thanks!

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 28, 2012 01:56PM Momine wrote:

I had a double because I had no desire to put myself through the follow-up that would be necessary if I kept the breast (frequent mammos and biopsies). I had been scanned with every possible technology prior to my surgery and all docs were sure my right breast was clean. It wasn't. It was full of stage 0 this and that and my surgeon said it was good thing I had been so adamant about getting it removed.

However, my cancer was locally advanced.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Aug 28, 2012 06:43PM Galsal wrote:

I too chose the double for the same reasons as Momine.  While the non-BC side for me did not already have BC, it did have  Atypical Ductal Hyperplasia and PASH.  I'm glad I made the decision to remove the potential of developing into anything else.

Dx 12/14/2011, ILC, 1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 2/9/2012 Mastectomy: Left; Prophylactic mastectomy: Right Hormonal Therapy 10/5/2012 Arimidex (anastrozole) Hormonal Therapy 12/12/2012 Femara (letrozole) Hormonal Therapy 4/15/2013 Aromasin (exemestane)
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Aug 28, 2012 07:45PM kestrelgurl wrote:

Same here. I didn't trust scans to find anything early and didn't want to have to worry. Ended up they found LCIS on the left side, so I do believe I made the right decision.

Also, I talked to a friend who had a UMX and she really regrets not going BMX. I didn't want to be lopsided.

Gail - ILC, CLL/SLL and squamous cell carcinoma? Yeppers, I won the cancer lottery. Dx 9/10/2011, ILC, 6cm+, Stage IIB, Grade 2, 2/3 nodes, ER+/PR+, HER2- Surgery 10/11/2011 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Radiation Therapy 11/6/2011 Breast Hormonal Therapy 12/31/2011 Surgery 2/10/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 6/6/2013 Reconstruction (left); Reconstruction (right) Hormonal Therapy 6/10/2013 Femara (letrozole)
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Aug 28, 2012 10:44PM Chocolaterocks wrote:

Hi!

Ditto. I wanted to give myself the best chance of not doing this again. I had the bilateral. The normal side did have atypia, pash so who knows. I don't regret the decision.  It's such an individual choice.  Good luck with your decision.

It is so difficult!

regards

CR

Dx 1/13/2011, ILC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 28, 2012 11:19PM hmh23 wrote:

Nanka; We all know how difficult a decision this is.  I also opted for a bilateral mastectomy even though my one breast was completely healthy.  Given the how sneaky ILC is and how difficult it can be to diagnose, I did not want to have to go through an MRI every 6 months to see if it had occurred in my healthy breast.  To me the anxiety associated with this option was overwhelming.  I felt that it was the best decision for me and I know you will make the best decision for yourself. 

Please don't hesitate to reach out with any additional questions or concerns.  One of my favorite quotes is "talk to those on the road coming back".  We are all on that road... 

Fondly, Heather 

Realize the majority of your body is healthy! Dx 1/28/2010, ILC, 2cm, Stage IIIA, Grade 2, 5/9 nodes, ER+/PR+, HER2-
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Aug 29, 2012 08:14PM Nanka wrote:

Thanks everyone for answering. So many BMX! There still is LCIS in the margins of the lumpectomy. I wonder....how do they know that the ILC often travels to the other breast if there are sooo many Bilaterals....things that make you go hmmmmmm.....

Another question....did your surgeons encourage you to have a BMX or did they suggest a less drastic approach first? Did any surgeons try to talk you out of it? The reason I ask is that here in Manitoba, Canada, they mostly lean towards breast perservation as much as possible.

Thanks again!

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 29, 2012 08:39PM MaureenA wrote:

Hi Nanka,

This is a really difficult decision, and I firmly believe there's not one right answer for all of us.

I had a lumpectomy on the right side in January 2008.  I did radiation and have been on arimidex. I have a breast exam, mamogram alternating with MRI, every six months.  It is definitely stressful, especially the MRI, but it has been doable.  I have been about 4.5 years without an issue, but I recognize I will always have to be vigiilant.  I seriously considered a BMX and proposed it to my surgeon and oncologist. My surgeon recommended starting with the lumpectomy and then talking about doing more surgery when "things calmed down."  I probably should add that I am not a good patient and found the idea of more surgery disconcerting.  Before breast cancer, my only dealings with the medical community had been for childbirth. 

 Sending warm hugs and good thoughts your way as you figure out what will be best for you.

Dx 1/29/2008, ILC, <1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Aug 29, 2012 09:07PM Nanka wrote:

Hi Maureen, were your margins clear with your lumpectomy? Any LCIS? I just assumed every ILCer has LCIS.

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Aug 29, 2012 09:26PM ohio4me wrote:

Nanka -

I had ILC on the right. Went to surgery with the plan of having a BMX with recon. Positive lymph nodes changed the plan and I had Rt MX then on to chemo and radiation.

A year later, I met with my PS to plan my Lt MX and proceed with bilat recon. After giving it thot for a week, I changed my mind and decided on a BMX without recon. I am happy with my decision. There was no cancer found in the Lt breast.

The factors that influenced my decision: 1) I am Stage 3 with high risk for recurrence, I had 14/15 positive lymph nodes - not the results you want, 2) I am 58 (not old but not young), 3) I just wanted to be done with all the treatment and 'stuff'. 

My final surgery was last month and I am very happy. I had large breasts so being flat was a big change. I don't plan to wear foobs and like the idea of never wearing a bra again.

Just think it through and make the decision you can live with.

Dx 3/29/2011, ILC, 5cm, Stage IIIC, Grade 2, 14/15 nodes, ER+/PR+, HER2- Surgery 7/11/2011 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right Chemotherapy 8/29/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/23/2012 Surgery 7/23/2012 Prophylactic mastectomy: Left
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Aug 29, 2012 11:05PM Chocolaterocks wrote:

It was so weird- when I told medical people (doctors) that I decided I am/ was having a bilateral ALL of them said the same thing. Its a great decision, I am glad you made that decision....even medical friends said the same thing. It almost seems that the medical community believes in bilaterals but won't say....

I am willing to discuss this further......

CR

Dx 1/13/2011, ILC, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 29, 2012 11:07PM toomuch wrote:

Nanko - I initially had a lumpectomy and my 0.9 cm ILC was extending from LCIS.  My margins were clear. I always knew that I would have a BMX and reconstruction but waiting until after chemo and radiation to do it. The decision to wait gave me time to fully research where I would go and what type of reconstruction I would have. It was the right decision for me. My "good" breast did have ADH and I'm very happy with my choice. It is a personal choice and what's most important is that you are comfortable with your decision. The planning stage is the most difficult time! Wishing you peace with your decision.

"Every trial endured and weathered in the right spirit makes a soul nobler and stronger than it was before" Dx 7/13/2010, ILC, <1cm, Stage IIA, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Aug 29, 2012 11:30PM Chris13 wrote:

Hi,

I had a UMX with immediate DIEP. No one (top docs here locally) recommended a BMX. I did have 2 ILC tumors plus smaller ones in the removed breast. The tumors (2) were tested via Oncotyping and found to have low recurrence scores, so no chemo. I did have one involved node.

When I mentioned during the "chemo discussion" with my MO that I might need chemo in the future anyway because of ILC typically being bilateral, she said "Don't even think that." Of course we both know the stats, but she was implying nothing is a foregone conclusion. My other breast was clear on MRI, and the BS surgeon (she) called it "beautiful." 

 So everyone is different, making your personal choice harder. In my case, I can easily imagine another MX in my future, but understand it may not happen. Am on Arimidex now, BTW. Good luck with your choice. 

"To attend to the moment is to attend to eternity." 2 ILC tumors 1.6. 1/4 positive nodes. Oncotypes 8 & 15. No rads/chemo. Dx 2/24/2012, ILC, 1cm, Stage IIA, Grade 1, 1/4 nodes, ER+/PR+, HER2- Surgery 4/30/2012 Reconstruction (right): DIEP flap Surgery 4/30/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 7/31/2012 Arimidex (anastrozole)
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Aug 30, 2012 08:31AM MaureenA wrote:

Hi Nanka,

I did have LCIS in the right breast.  In fact that was the original diagnosis when I went in for the lumpctomy.  The invasive disease was found in the pathology, and I had to have a second surgery two weeks later for the SNB.  Margins were clear and oncotype was 16.  Hugs.

Maureen

Dx 1/29/2008, ILC, <1cm, Stage IB, Grade 1, 1/2 nodes, ER+/PR+, HER2-
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Sep 1, 2012 06:07PM - edited Sep 1, 2012 09:06PM by suzieq60

Nanka - my report said there was LCIS in the margins too but nothing has shown up on MRI's since. I had a lumpectomy, rads and chemo (due to the HER2 factor). A year later they found IDC in the other breast, but it seems it was there the year before and it was missed on the original mammogram. I had an MRI and they found 2 spots of ALH and ADH as well. My new surgeon wanted me to have a  BMX due to the bilateral cancer, but I declined and had another lumpectomy (she did 2 at the same time to get the ADH and ALH as well) and rads. My reasoning was that the second bc was already there, so I wanted to be conservative. If I ever get a new cancer, of course I will go with the BMX as I no longer have a choice due to the rads. Currently having 6 monthly monitoring MRI alternated with mammo and ultrasound.

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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Sep 1, 2012 09:31PM momand2kids wrote:

an alternative view--I had a lumpectomy, chemo and radiation (had an intermediate oncotype score).. that was almost 4 years ago.... no one on my medical team suggested a mastectomy or a bi lateral--- I have an MRI, then 6 months later a mammogram.  Have had one scare-- turned out to be a cyst--- but otherwise, these things have been uneventful.  

It is hard--- but I have been very comfortable with this decision (and having all that treatment also helped me feel good about my decision).  Now that I know what I know, I would still do the same thing--- remember, most people do not have a recurrence...but it is all about what you are comfortable with...  

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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Sep 2, 2012 03:08AM melmcbee wrote:

I dont know what the stats are on recurrence however, I dont have faith in any test anymore. That is the hardest thing for me to say since I am a CT tech, Mri tech, and xray tech. I have worked in the radiology field for over 15 yrs. All the test that I had didnt catch it. My mammo in Dec. didnt catch the almost 3cm tumor and the other 2 tumors in my rt breast. The u/s picked up something that needed a bx. The mri over called it at 5.6 cm ( probably the total of all 3) however it didnt pick up the 8 positive nodes that I had. The pet scan didnt pick up the positive lymphnodes. The Catscan didnt pick up the positive nodes. I saw my own films and didnt see anything yet the pathology came back positive. That made my decision for me. How could I trust getting routine test if I knew they might not pick up this sneaky lobular crap. Its not that the radiologist didnt see it. Its that it wasnt showing up on the images. It has to do with the way Lobular grows. I have also seen some ductal hide like that too.   I have always believed that images would show up anything. It just isnt true. Thats why I had the bilat mastectomy. Its a personal choice. Im a worrier and would have probably had a million bx's over the next year so it  was easier for me to just take them both off. Hugs

Melanie Dx 6/24/2012, ILC, 2cm, Stage IIIA, Grade 2, 8/15 nodes, ER+/PR+, HER2- Surgery 7/9/2012 Lymph node removal: Right, Sentinel; Mastectomy: Left, Right Surgery 8/9/2012 Lymph node removal: Right, Underarm/Axillary Chemotherapy 8/23/2012 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/9/2013 Breast, Lymph nodes Surgery 5/30/2013 Reconstruction (left); Reconstruction (right) Surgery 12/4/2013 Reconstruction (right) Dx 3/29/2017, ILC, Stage IV, metastasized to bone, ER+/PR- Dx 11/19/2019, ILC, Stage IV, metastasized to other, ER-/PR+, HER2- (IHC) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Faslodex (fulvestrant)
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Sep 3, 2012 07:24PM MissTW wrote:

I regret not having a BMX. Now all I do is worry every 6 months after mammo and scans.

When I was diagnosed I was going through a difficult divorce and 3 years prior I was diagnosed with Stage 3 colon cancer.

I wasn't thinking clearly and decided on a lumpectomy, breast reduction and radiation.

 Not only do I worry about breast cancer returning I worry about colon cancer. The good news is that I am now a five year colon cancer survivor so according to my surgeon I am considered cured. 

Now my doctors are recommending a total hysterectomy thanks to tamoxifen. Has anyone else on this board have a hysterectomy? Thanks for listening and any advice will be truly appreciated. Blessings to all! 

Stage 1 ILC/LCIS er+/pr+ HER - 27 rads, grade 2, 0 Nodes NO CHEMO, ONCOTYPE SCORE 22 Colon Cancer Survivor STage 3, 5FU, Oxilaplatin/Leucovorin
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Sep 4, 2012 04:59PM Nanka wrote:

Thanks for sharing your stories! That's some scary stuff melmcbee! Although scary, it's important to get a reality check like that. Met with the onc today and he said that there are presently no big red flags in my situation that indicate that I need a mastectomy. On the other hand, he also said that the chance of recurrence in the other breast is 25%. That is a least a moderate sized red flag to me!

I will most likely go with the radiation treatment, then tamox. If I get a scare in the meantime, I will most likely get a bilateral.

Congrats on being a colon cancer survivor MissTW!!!!

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 5, 2012 03:50AM Momine wrote:

MissTW, I had a hyster, although it was not total. We left the cervix and the neck of the uterus. This way I could go straight on an AI and skipped the tamox. Besides, I don't have to worry about ovarian cancer.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
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Sep 5, 2012 07:00PM C-squared wrote:

nanka~ I tested BRCA+ so the decision was practically made for me!  Do you have any family history?  Have you had or will you have genetic testing???  I hope to G_d I will never go through this again!!! Blessings ot us all!!!

Chemo: T & A/C (Jan-May'12) Surg:SLNB (Dec'11); LX (Mar'12); BMX,TE's & Ooph (Jul '12); TE (Aug '12); Exchange (Dec '12) Hormone: Arimidex (Aug'12) & Letrozole (Dec'12) Dx 11/30/2011, ILC, 3cm, Stage IIB, Grade 2, 1/3 nodes, ER+/PR+, HER2-
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Sep 5, 2012 08:23PM - edited Sep 5, 2012 08:26PM by antonia1

Nanak,
You will have to make your own decision. I had DMX because neither mammogram nor sonogram caught the cancer, while I was under continuous surgeons care until the tumor became big enough to change the shape of my breast. At that point, not only the radiologist noticed the tumor in my breast but suspicious nodes, as well.

The PET scan and the MRI reports showed 2 to 2.5 cm tumor and the surgeon suggested lumpectomy, as a possibility. However, under the circumstances I insisted on DMX. I could not see myself trusting the result of any mammogram or sonogram.

In any event, lumpectomy would not have been an option given that the actual tumor was 4+ cm and multifocal, not 2cm as originally thought. Also, not one but 4 nodes were cancerous.

No, I do not regret my decision and no, at the time, it was not easy to make. Good luck with whatever decision you make.

Dx 9/15/2010, ILC, Left, 4cm, Stage IIIA, Grade 3, 4/16 nodes, ER+/PR+, HER2+
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Sep 5, 2012 09:33PM Nanka wrote:

Thank you Antonia. May I ask why you were under constant surgeon care before finding the tumor. Were you high risk for developing BC? It is scary that they didn't discover the tumor until later...I hope that you are now doing well. In Canada, I can insist on an MRI at no cost. I may go that way for the first while. Ugh....this is sooo hard!

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 8, 2012 09:15PM antonia1 wrote:

I went to a breast surgeon when I had a suspicious mammogram and needed a biopsy about 5 years prior to my diagnosis. The thing they were looking at turned out to be nothing special, just a cyst with a lot of black, tarry gook, but everybody had missed and kept on missing the growing cancer. Because my breasts were dense, the surgeon was ordering sonograms in addition to the mammograms and she was happy getting all those " all clear" results year after year. She was a breast surgeon and I was under her care for about 5 years. Unfortunately, during the entire time she never mentioned that with the dense breasts, cysts and pain I was high risk for developing breast cancer. I always thought of myself as low risk since I gave birth to two children and breast fed them. I simply didn't know that I needed an MRI.
Perhaps the outcome would have been different if the sonograms were performed by radiologists experienced with different kinds of cancers, rather than a tech.

As it is, I am stage III with 4 nodes involved. Thankfully, I am post chemo, radiation, Hercepting and doing fine. I am officially NED. Of case, I would feel much more secure and be an earlier stage if at least the mammo and sonogram done only 10 months earlier were done more accurately and diagnosed the existing cancer. As it was, they all concentrated on yet another cyst, which the radiologist declared not to require a biopsy this time. amazing thing was that once they knew (flattened breast) that there was something inside, they found the tumor on mammo, and the radiologist found a not only the tumor, but suspicious area on my node and ordered biopsy on both.

Now, there is no point stressing over it, but it is a valuable lesson for others not to rely solely on those tests.

Dx 9/15/2010, ILC, Left, 4cm, Stage IIIA, Grade 3, 4/16 nodes, ER+/PR+, HER2+
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Sep 9, 2012 04:04PM mary625 wrote:

I second what you've said. I hope there can be better education about the limitations of mammography and the risk factors of breast density. Eight months prior to diagnosis of a tumor that was anywhere between 2 and 10 cm (according to which doctor you talk to), I received the happy annual letter with benign mammo results. I had no idea that mammography was not fool-proof, no idea that I had density, and no idea that was a risk factor. I didn't think I had any risk factors. I just said to my husband earlier today that thank God I took quick action when I found the lump on account of pain. I think a lot of people would have been reassured by the benign results 8 months earlier and let it go. I still cannot process how something as extensive as I had was missed by the mammo.

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/25/2011 AC + T (Taxol) Surgery 2/5/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/11/2012 Femara (letrozole) Radiation Therapy 3/12/2012 Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Sep 10, 2012 09:10PM delphi wrote:

Nanak, I had a right mastectomy with insertion of a tissue expander in November 2011. At the time I did talk to a woman who had bilateral mastectomies for DCIS on one side, she told me to ask my surgeon why she was not doing bilateral mastectomies on me. The surgeon felt that compared to the risk of the general population I was not at high risk for a recurrence there and that I could compromise my recovery on the right side. I think that I am generally a little conservative when it comes to testing and surgery and tend not to think the worst will happen. I had been recommended to do an MRI the January before my diagnosis and put it on hold as the nurse said a lot of people post MRI end up having unnecessary biopsies, maybe if I had been more diligent on that score I might not have ended up with a 10.5 cm tumor. Added to that my primary care physician examined me in July and even though she felt a dense area on the right did not raise any red flags or insist I do that MRI, all water under the bridge now.

Having said all that and now almost a year beyond it, I have to say I am happy that I did not have bilateral mastectomies. I just lost my tissue expander due to a cellulitis infection, second one this summer, and am now looking at a more invasive reconstruction down the road. My tumor was too large to do nipple conservation and so I am glad to have a breast that for me is still real. I realize that lobular is sneaky and I think screening will be MRI's going forward and I think I am ok with that. It is really about what you can live with. I am European and other women I know who have gone through this over there were not presented with this option, I think they tend to more conservative over there, could also be to do with the healthcare systems in different places.
Hope I didn't confuse even more.

Dx 9/30/2011, ILC, 6cm+, Stage IIB, Grade 2, 4/7 nodes, ER+/PR+, HER2- Surgery 11/1/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy 12/12/2011 AC + T (Taxol)
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Sep 10, 2012 10:03PM Nanka wrote:

Hi Mcmking, thank you SO much for your post. I am also conservative about surgery and taking prescription medication in general. My gut right now tells me it's not the time for a bilat. My onc mentioned today that I don't have BRCA and that those diagnosed as such have a 80% or even 90% chance of recurrence. They are serious candidates for Bilat but he also said that he understands why I would consider it. That's all he said. My naturopath said that he doesn't believe that the cancer "travels" to the other breast but IF it does appear in the "good" one, it was created at the same time as the cancer on the other side, it was just undetectable. I am seeing my surgeon on the 17th for her opinion on the bilat (she's a woman and sometimes that makes a difference).

Last chemo tomorrow!!!! HAPPY HAPPY JOY JOY!

Pleomorphic ILC - Extensive LCIS left in breast Dx 2/16/2012, ILC, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 3/13/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/26/2012 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Sep 10, 2012 10:24PM momof3boys wrote:

I had a BMX with TE reconstruction. I just had this gut feeling that a BMX was what I needed to move on past this ordeal. I have anxiety over tests and scans and could not see myself going through that over and over again with mammograms (if I went w a lumpectomy or UMX). I did find it interesting that the Drs don't want to tell you what to do, they want you to decide.... The only Dr that told me "get a BMX and be done with it, you can't believe how many women we see back again" was my ob Gyn, who happens to be my aunt. When I told my bs my decision to do BMX, I swear I saw him visibly exhale. And he said he thought I made he right decision. I remember him saying that they had no idea what caused my breast cancer (no risk factors other than being a woman) but, that whatever my right breast was exposed to, so was my left one. My PS also said that in his experience (35 years) ILC has a higher rate of occurring in the opposite breast...
I don't regret it at all. It is a very personal decision, I'm glad my decision is over. Best to you!

BMX w TE reconstruction 11/11/11, 4 TC, 3/12, 25 Rads 5/12 Tamoxifin 6/12, Prophalactic hysterectomy 12/18/12, Oncotype 16 Dx 10/14/2011, ILC, 4cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Sep 11, 2012 02:37PM CorinneM1 wrote:

Similar to the others here, I did a BMX bc 1)ILC is sneaky, and I was extremely lucky that they were able to catch it at grade 1 stage 1 2)it likes to come back in the other breast, from my understanding 10 years later, and I didn't want to have to do this again in a decade. 3)I didn't want to have keep looking over my shoulder.  I mean, of course I am still worried about a recurrance, but I worry slightly less with the healthy breast removed. 4)Similar shape, size etc.

All in all, no regrets.  In fact, I never even waivered about having a uni vs. a bmx.

CorinneM1 ILC Grade 1 Stage 1 ER/PR+ HER neg. BMX, no chemo, no rads, tamoxifen for 5+ years
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Sep 11, 2012 06:44PM mary625 wrote:

BMX for me and no regrets. All my doctors seemed to encourage it. I also wanted to be symmetrical. I was large breasted, and I couldn't imagine having one of those "big, ugly things" hanging there. Big, ugly things was what my son called them one time when he was very young and walked in while I was changing. :)

Dx 8/29/2011, ILC, 1cm, Stage IIIC, Grade 2, 10/16 nodes, ER+/PR+, HER2- Chemotherapy 9/25/2011 AC + T (Taxol) Surgery 2/5/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Hormonal Therapy 3/11/2012 Femara (letrozole) Radiation Therapy 3/12/2012 Surgery 9/23/2014 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Sep 11, 2012 09:09PM delphi wrote:

I agree that the medical and general population need to be educated on the limitations of mammograms in relation to invasive lobular. My mother had this same diagnosis in 1985 and thankfully has done well, her treatment was a unilateral modified radical mastectomy with CMF chemotherapy. My oncologist is European and he has admitted that there is over treatment in this country but assured me that no one would argue that I was over treated, little consolation for the extensive treatment. Yes he did say that we don't get the five year blessing on lobular but risk to the other breast was not really what he mentioned, I am curious now, so when I have my one year follow up will ask the surgeon and mo. I found this site after I had done my surgery and chemotherapy maybe just as well in some ways or I would have been in a dilemma with my decisions. I am curious how many of the bilateral mastectomies are patient driven as opposed to Dr. recommended, mine just didn't even raise the issue at all and she heads up the breast centre at a well renowned hospital.

Dx 9/30/2011, ILC, 6cm+, Stage IIB, Grade 2, 4/7 nodes, ER+/PR+, HER2- Surgery 11/1/2011 Lymph node removal: Right, Sentinel; Mastectomy: Right Chemotherapy 12/12/2011 AC + T (Taxol)

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