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Whats your ILC story?

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  • DMD
    DMD Member Posts: 30
    edited April 2011
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    gin2ca - Thanks for sharing your story.  I think deep down I worry that I did something wrong by not catching this earlier, or maybe I am mad that there isn't better imaging available on an annual basis for women except for the standard mamograms. But your story just goes to show that it can happen to someone with all your experience and that even your earlier MRI didn't catch it.  It is so darn frustrating...lobular cancer is so sneaky. Like you I also had 2 precancers in my opposite breast. Until I was diagnosed with ILC I didn't even know that breast cancer could start without the typical "lump" we are all taught to look for. I now try to share what I have learned with others...to check for any changes...thickening, firmness, and to do a visual check to for redness, peeling skin, inverted nipple, etc. Take care, Dawn
  • nwest125
    nwest125 Member Posts: 69
    edited April 2011
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    wow my ILC was caught after I went in for 2nd surgery to get clear margins on my IDC. It never showed up on mamagram, MRI. My BS was shocked, at that time I was just getting over the ( I have cancer stage) let alone 2 cancers in the same breast.But I took care of it I did a BMX, I didnt want any chance of it getting to the good side.

    Nancy

  • sgreenarch
    sgreenarch Member Posts: 253
    edited April 2011
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    Hi. I like this thread as I feel a kinship with those of you who are sharing this same, particular kind of BC. It does seem to have it's own 'style.' My story is as follows:

    I began having yearly mammograms at 40 and I always needed an US due to dense breast tissue, however they were normal each year for about 10 years. No close family members with BC, so I got pretty lackadaisical about the whole thing and tho I continued to be vigilant with mammograms, I didn't really worry much about actually getting BC. In 2008 I needed a hysterectomy due to a rapidly growing, very large uterine fibroid. I was so sick of doctors at that point that I skipped my yearly mammogram, accidentally.

    Last summer, with no symptoms at all, lumps, thickening, pain, etc., I scheduled a mammogram since it had been two years since the last one. I went to a new place for the mammogram and the Dr. was excellent. She said she saw something in the mammogram and did an immediate ultrasound. Everyone was quiet and they did an immediate biopsy, but even without the results, I could tell from everyone's faces that we were pretty surely dealing with cancer. Dr. right away mentioned lobular and said that size was less significant in this kind of cancer as they can be strangely shaped. Biopsy confirmed Lobular cx and then I had an MRI that found an additional smaller lobular tumor, which was also biopsied. Remote positions of the tumors made a mastectomy a better choice and I am now looking at reconstruction options (couldn't handle it all at once.)

    Quite shocking to me as I'm sure it was to all of you. I beat myself up for a while for skipping that one year, though the recommendation here (Israel) and in Europe is only once every two years. The mammographer said that it likely didn't make a difference and possibly might not have been seen a year ago anyway which made me feel a bit better. My mother took DES when she was pregnant with me, but only now, post dx, did I read about the significant risk that that caused me, for getting BC.  I told every OB/GYN I ever went to about this, but no one ever mentioned the elevated risk of BC and I do wish they had. I am trying not to look backwards and just be grateful that at least I found it when I did and not later, but I agree that there should be different guidelines for those of us with very dense breast tissue and other risks.

    The one positive idea I'd like to share with you is something I thought of today. Passover is coming and it's a really big holiday here in Israel (very much like Thanksgiving, almost universally celebrated.) I was feeling blue, thinking how much my life has changed since last year. But then I decided that I must think about it another way. That last year I likely had a tumor (or a few) growing in my breast, without knowing it, and this year, though it's been a rough one, I am now healthy and, with G-d's help, cancer-free. My wish for all of us during this spring holiday season, is that we continue to heal and then remain well. Thanks, Shari

  • tinat
    tinat Member Posts: 2,235
    edited April 2011
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    Hi Shari, welcome!  Although each story is a little different, there still seems to be a common thread through all.  Lobular CA is pretty sneaky, doesn't like to show itself.  I had very dense breast tissue as well and began fighting for an MRI "just because".  I am sad to be taking this journey, but so grateful that mine was found very early.  Could have been a much different story if I had waited to feel it (am told it likely would have never shown on my mammogram).  I'm glad to be going through treatment now with low-grade, small cancers rather than later with more advanced disease.

    Best wishes to you!

  • kareenie
    kareenie Member Posts: 97
    edited April 2011
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    Hi Shari (Sgreenarch),

    I too had ILC back in 1994 (recurrence in 2009). I too am I believe a DES daughter.  I am curious about the info you found linking DES and BC.  Can you elaborate and/or post links to info?  I personally have always believed this link but have not seen much published on this.

    thanks,

    Kareenie

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    My story is a bit sad for me since I was having all the Mammo tests, breast cyst aspirations, and ultrasounds every six months and told nothing to worry about. In Jan 2009 one of my 3 breast specialists suggested a core biopsy. My primary doctor didn't share that recommendation with me nor order one. Then again in Nov 2010 the same specialist again recommended a biopsy and again I didn't see the report or know what was being discussed behind the scenes. In March the biopsy happened by that specialist because they were unable to execute on primary doctor's proposed approach. Voila!  ILC found in path report. 

    I had my MRI done on 4/5/2011 which showed 3 nodes light up. Still hard to signature the tumor size and margins though - still put at 6cm.

    4/6/2011 had a  surgeon perform needle lymph node biopsy. 2 nodes came back positive for cancer.

    4/11/2011 had my bilateral mastectomy.  Path report came in yesterday 4/14/2011. Tumor was 12 cm. and 3 positive nodes after axillary lymph node dissection. I don't know what my treatment plan will be but I'm a fighter and really in good spirits despite all the missed opportunities. I guess we all just need to be really involved in reading our doctors reports and be an integral part of the diagnosis and action team. I'm insisting on seeing all reports and findings going forward. I don't know if this could have been caught sooner but because it is so "sneaky", and we are all special, we really need to hyper-vigilant. I'm glad I have all of you to share with and learn from.

     Best,

    Katarina 

  • tinat
    tinat Member Posts: 2,235
    edited April 2011
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    Katarina:  Welcome!  My heart breaks reading your story.  I'm so sorry you've found yourself in this place.  Fortunately, I had a feeling something was amiss early on so I had the opportunity to fight for myself and I was lucky enough to finally be heard; my cancers were found early.  I'm sorry things fell through the cracks for you and you had a different outcome.  These great disparities should not exist, but obviously they do...

    There is a lot of good information here.  Every woman's story is a bit different, but there is definitely a common thread.  There will be people here who can identify with what you're going through and help you to know what questions to ask from this point on.

    Hang in there.  Take it one day at a time.  Sometimes things will seem to be happening too fast, then things will seem to take forever.  It's definitely a "hurry up and wait" process.

  • sgreenarch
    sgreenarch Member Posts: 253
    edited April 2011
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    Dear Kareenie, I'll try to figure out how to post the link (kind of new to this site) but in the meantime google CDC and DES. Their site is where I found the best info. See if you understand it the same way I do, that being a DES daughter raises our risk of getting BC between the ages of 40 and 50, by fifty percent. If this is the case I don't know why the guidelines don't put us in a high risk category in terms of monitoring. I told every Ob or gyn throughout my life, my hx, but no one ever mentioned this heightened risk or greater vigilance. Trying not to look backwards but this frustrates me for others who may not be catching the disease on time.

  • sgreenarch
    sgreenarch Member Posts: 253
    edited April 2011
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    Dear katarina, hang in. The beginning of this journey is the hardest part. Once you get a course of treatment and have a plan you'll feel better, even though you still have unknowns along the way. Your upbeat outlook will serve you well. I have a friend whose mother had a 10cm ILC, then had a mx and chemo and is fine 10 yrs later. This ILC group is a nice group of women. Lean on us. We are all in this together. Shari

  • kareenie
    kareenie Member Posts: 97
    edited April 2011
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    Shari - Thanks for the info.

    Yikes! according to CDC info DES daughters over 40 have a 2.5 times higher risk of BC.

    http://www.cdc.gov/DES/partners/download/DES&BreastCancerFS.pdf

    Thats 250% folks! Most if not all DES daughters are now over 40.

    Thanks,

    Kareenie

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    Thank you Ladies for you kind words and support.

    I'd love to hear about survival rates for ILC patients.

    There really are no good statistics out there for any of us (IDC or ILC) so maybe it's not really measured or measurable unless reported somewhere as in a central repository. It is scary that we don't have a central statistical database. I'm a researcher so naturally interested. When I google the most information I get is from our group here. 

    I'm adopted so I have no family history to work with. Although my adoption record did say I had a maternal grandmother who died of a brain tumor in her late 40s. Yikes. Not sure that counts as a history for BC or Ovarian cancer.

     My biggest question now is with "angio-lymphatic invasion present" where is my ILC more likely to travel next - lungs or peritoneum / abdomen?  I haven't gotten my scans back yet so maybe no news is good news. 

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    Hi Gitane, you are so right about ILC survivors being the outlier's in this war on breast cancer. Every time I ask a Doctor or cancer center patient if they know any ILC BC patients they say "lots'" but then can't even give me a name of someone I can meet face to face. I'm sure we are a small percent and the treatment protocols out there aren't necessarily focused on us --- just like the primary tests  -- Mammo's and ultrasounds weren't.  

    I tell my psychiatrist that I trust doctors but also feel like because I'm in the minority (the 10%) it's okay that I could fall through the cracks.

    I'm not the most religious person but I have put my faith in God and have become spiritual about this mess and trust that my higher power is watching out for me and there's a reason for this.

    Thanks for your share Gitane 

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    Okay, I will now share positive thoughts.

    We're survivors. ILC is just a DX.

    I have an ONC who I really trust and know is smart and a winner. He's got me starting Taxotere and Cytoxan chemo and will follow with rads. He's known for his aggressive attack on BC. I'm ready to head into as an aggressive treatment approach that anyone can throw at me.

    Maybe we should start a thread on Treatment Protocols and what works. My ONC and I agreed my goal was complete remission - if only for a nice period of time - I'm not too demanding.

    Thank you for the stories on 10 years and going strong.  

  • tinat
    tinat Member Posts: 2,235
    edited May 2011
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    Katarina:  Here's to the smoothest ride possible for you.  When do you begin your regimen?

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    Thanks Tina,

    My port goes in next Tuesday followed by 6 rounds of Taxotere/Cytoxan Chemo.  I don't have a clue what chemo therapies have worked for ILC and would love to know what success others have had either with this or another regimen.

    I put my life in God's hands in the end and will keep an optimistic attitude. Maybe that's the lesson I need to learn out of this.

    Best,

    Kat 

  • Toni_S
    Toni_S Member Posts: 15
    edited May 2011
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    I have always had dense breasts, I am 59 years old now, but have been dealing with cyst aspirations (4) and biopsies of suspicious lesions (2) since I was in my late thirties. I am faithful about mammograms and since my last biopsy in 2004 (which was negative) I continued to have "normal" mammograms. My mammogram in March, 2011 showed a 1 cm lesion that wasn't present before, and follow-up ultrasound located another lesion in the same quadrant 4mm in size.  I opted for an excisional biopsy, and the diagnosis was multi focal ILC. My doctor recommended lumpectomy and ordered an MRI prior to surgery which showed no other tumors.  Sentinal node biopsy was done at the same time as lumpectomy.  My SN biopsy was negative, but surgical pathology found yet another 6mm tumor within the lumpectomy tissue. I am totally unnerved by the notion that it wasn't found on the MRI or the ultrasound -- it was lurking there but totally masked.  My surgeon suggested that inflammatory changes after the exisional biopsy made it impossible to see the 6mm tumor and I should feel confident that there is nothing else lurking.  I don't feel confident at all.  In fact, I'm wondering what's going on in my other breast that isn't showing up on all of the imaging. 

    My surgeon now recommends a mastectomy rather than a re-excision of the affected breast.  I'm seriously considering bilateral mastectomy because I can't live the rest of my life wondering if every MRI or ultrasound is missing a recurrence. Oncotype testing is being done by my oncologist.  I don't have those results yet.

     I need to make a decision about the surgery in the next two weeks, and I'm feeling overwhelmed and frustrated.  I plan to go to a major cancer hospital for a second opinion and hope I can get an appt on such short notice.  This is stealth cancer.  I'm not sure what I will decide but am leaning toward a bilateral mastectomy because I'm not sure I can live with the never knowing what's going on.

  • tinat
    tinat Member Posts: 2,235
    edited May 2011
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    Toni_S:  I feel for you.  It's a tough decision.  I guess all we can do is gather as much information and as many opinions as possible, then listen to our gut and make the best choice for ourselves. 

    I'm not trying to frighten you or to sway you to BXM, but I'm very happy that I made that decision.  I too had very dense breasts (even mentioned on my MRI report).  I went into my BXM knowing there was a small lobular and an area of DCIS in one breast.  Post-surgery pathology showed an additional area of lobular neoplasia and multiple areas of ADH "sprinkled throughout the mid-breast" that hadn't shown up on any imaging studies.  Could be they were too small to be seen yet; still, there they were. 

    Glad to hear you have the opportunity to get another opinion.  Best wishes!

  • Toni_S
    Toni_S Member Posts: 15
    edited May 2011
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    Thanks, Tina.  It is such a tough decision to make, but peace of mind is priceless and I am prepared to do whatever it takes to get it.  I so appreciate that you and others who post on this board are willing to share their information and their stories for those of us who need that input.

  • Katarina
    Katarina Member Posts: 99
    edited May 2011
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    I feel so much more peace of mind having had my BMX. Now that's not to say I can't have a recurrence but I've reduced my chances and that's what matters to me.

    I'm truly convinced the only real test for ILC is a biopsy and pathology review. Mammo's, Ultrasounds and cyst aspirations by breast surgeons and specialists missed my ILC for years.

    My dear friend told me yesterday she's stage IV now after 9 years of clean prognosis and then cancer found on her chest wall (She had a mastectomy 9 years ago on that side). She just completed a 6 rounds of TC and it didn't work at all for her this time. She said she couldn't do radiation a second time (did her first treatment).  She's headed to Stanford to try to get into clinical trials. My heart breaks for her but I'm praying and keeping hope for her success. 

    Hugs and Blessings to us all!!

  • DMD
    DMD Member Posts: 30
    edited May 2011
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    I am right there with you ladies...I am happy that I chose to have my BMX. They ended up finding 2 different types of pre-cancerous cells in the "healthy" breast.  I don't know how I would have gone through all of this a second time. I was 49 years old at the time and maybe it never would have become full blown cancer but it does give me peace of mind that I have done everything possible to prevent that from happening. All my best to you Toni_S...sending hugs and postive thoughts your way!

  • Katarina
    Katarina Member Posts: 99
    edited June 2011
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    Wow, I met with my Radiation Onc. today for the first time and he shared a big piece of info I didn't have before making the BMX decision --- I thought I had no cancer in my Left breast and that was what I was told originally, but he said after surgery on pathology they did find ILC cancer cells in the left breast and everyone on the Tumor board was told the same. He said my BMX is the absolute right way to go.

    WOW - am I glad I made that decision. I'd be back getting a second mastectomy in all likelihood some where down the road anyway.  

    Sigh of relief. 

  • momoftwo526
    momoftwo526 Member Posts: 105
    edited June 2011
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    My story is similar to some of your stories.  My mother died of breast cancer at the age of 48. It was in the 60's, so it was already advanced cancer with mets in the bone, liver and other areas. Because of her BC, my Dr. recommended a baseline mammogram at age 30 for me, which was fine.  I had annual mammograms after that for a little over 5 years.  I was told that my breasts were fibrocystic and dense.  In 1990, my sister (she was 44 at the time) was diagnosed with breast cancer. Her mammogram has shown microcalcifications that were benign via needle biopsy, but her Dr. said to remove them.  Later he called her and said they were cancer.  She is not  sure, but believes it was lobular because it had a spider web type tumor.  It was early stage, but they told her she need a BMX as this type of cancer almost always spreads to second breast. She said she wasn't given any other choices.

    After her diagnosis, my other sisters Dr. suggested she may want to consider prophylactic BMX.  My dr suggested more closely monitoring things.  I continued to have my annual mamograms and it seemed like I always had to have second views and and additional screening such as ultrasound, but other than the stray cyst that needed aspiration and the fibrocystic breasts, everything was fine until 2003.  In 2003, I had microcalcifications in my left breast which were biopsied and came up negative.  Also, at about the same time, my papsmear was abnormal and I had to have a uterine biopsy.  I was a mess, but since everything came up negative, but because of other issues, they wanted me on 6 month follow up mammogram.  The next couple of years were fairly uneventful, but in 2006, I started to have a discharge from the left breast.  They tested the fluid and said it was ok, but then did genetic testing.  I did not test positive for the cancer gene, however, in addition to my mom and sister, there was also significant family history on my father's side. 4 of his 5 sisters had some kind of cancer with 2 being breast and 1 being ovarian.  At least 5 of my first cousins on my father's side have had either breast or ovarian cancer.  They said with that amount of significant history, that is was likely that there was a genetic connection of an unidentified strain.  I have had many ultrasounds and MRI's over the years.  For some stupid reason, I was so sick of all of the problems, I did not have a mammogram again for 2 years. This year, my Dr. said enough was enough and she wanted me to go in for my mamogram, which I did at the end of March. Of course, I had a call back, but this time it was on my formerly non-problematic right breast.  While there, they then sent me in for an ultrasound.  They did see an "area of concern".  So, I was referred to a breast surgeon and he did a core needle biopsy, which came up negative, however, there was still abnormal cells and a distinct,small lump, so he wanted to do an excisional biopsy and remove the small lump.  He had said there was a less that 3% chance of if being cancer.  On May 9, 2011 I had that done.  After surgery, he said everything went well and looked good and if he was a betting man, he would bet that it was not cancer.  So, when I got a call on May 17th saying it was invasive cancer, I was shocked.  The pathology report said ILC and LCIS.  Magins are not 100% clear.  I am now in the process of getting additonal tests and considering my options.  I am still reeling from the news.  Based on family and personal history, I am leaning toward a BMX with recon.  The dr would support this but also thinks I would be fine with a sentinal node biopsy, removal of additional breast tissue to get clear margins, radiation and 5 years of cancer preventing drugs and screening every 6 months.  Me, I am not so sure. With everything I read about ILC, I am not sure the emotional strain of waiting for the other shoe to drop is worth it.  Would welcome your opinions!

  • sgreenarch
    sgreenarch Member Posts: 253
    edited June 2011
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    Dear momoftwo56, i know it must be a hard time for you now, but try to focus on the good news. Sounds like it was caught early. You dont say if you have had an MRI. They seem to do them with ILC. Also now they do a test called an oncotype. This was very helpful in helping me determine whetheror not i would need chemo (didnt.) I chose not to do a bmx (just mx of left breast) and am watched very closely but understand the choice to do bmx. In my case i just didnt want to be hasty. Figured i could always decide later to take off the second side. Not sorry about my decision, there are times when i am happy to still have one. But this is a highly personal decision and you should not rush but then do what gives you the greater peace of mind. This is allhard but whatever decision you make you will get used to and move on.

    Best wishes, shari

  • DMD
    DMD Member Posts: 30
    edited June 2011
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    Hello momoftwo56...wow your are right your story is very similar to many of us.  I had the same type of family history and although I did not test positive for the gene mutation they felt I there was probably an unidentified genetic mutation in our family.  I did choose to have a BMX and did so because I didn't want to have it hanging over my head and be subjected to extra testing on a regular basis.  I did have an MRI and nothing was ever found on my "healthy" breast side....until after the surgery. The pathology came back with two different types of precancerous cells. So I was thankful I went ahead with it and have not regretted my decision at all. I am almost a year out of my diagnosis and although things have not been a walk in the park for the last year I am doing great.  I know eveyone is so different so I know the decision is very personal...but if you want to talk or ask me any questions about my situation or our similarities you can PM me any time.

    Take care,

    Hugs, Dawn

  • Katarina
    Katarina Member Posts: 99
    edited June 2011
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    Experts admit that Mammograms and Ultrasounds do not accurately capture ILC so cancer cases go misdiagnosed. I'm told now that MRI and biopsy are only methods for ascertaining short of surgery.

    Example: I got my dx, based on a biopsy and was sent straight to MRI breast imaging. The oncologists and radiation Oncs reviewed the MRI and told me my entire right breast was the tumor (after being told for years I had dense breasts with 6month mammos/ultrasounds) and my left breast was Cancer free. 

    Surgery says it all -  I opted for a BMX even though told it wasn't necessary but probably warranted due to ILC type. Well, my post surgical path report came back disproving the MRI and showed I had ILC in my left breast as well. The Docs were "good call on your part". Hmmm. 

    The moral of my story is after being misdiagnosed for years and finding out I was stage III cancer in mere moments, I now trust my intuition and gut now more than anything else. I do the research to inform myself as much as possible but in the end just follow my intuition and gut instinct on course of action to take. I might be wrong, but I'd rather be wrong about my body than let someone else do it for me. I'm still shell shocked by my situation as I know all of us ILC girls are.

    Hugs to all,

    Kat 

  • tinat
    tinat Member Posts: 2,235
    edited June 2011
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    momoftwo526 :  Please ask for an MRI!  That will give you so much more info.  It's what found my two cancers (one lobular and one DCIS).  Radiologist actually commented on the denseness of my breasts even on the MRI.  More lobular atypia and multiple areas of ADH at surgery so I was sure my decision for bilateral over unilateral was right for me.  MRI! MRI! MRI!   Laughing
  • Katarina
    Katarina Member Posts: 99
    edited June 2011
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    Has anyone done any research on who the best ILC Oncologists in the Country are, where they are?

  • amm42
    amm42 Member Posts: 3
    edited July 2011
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    This is such a great thread.  Mine also started with my first mammo.  They found calcifications.  Biopsied and b9.  6 months later I felt a thickening.  Surgeon followed me with ultrasound every three months for 6 months.  Did another biopsy... still b9.  During my next 3 month visit, found a new lump, biopsy.. malignant ILC (with ductal properties as well).  ER+, PR+, HER2-, believed to be under 1 cm.  MRI found two more lumps in other breast, both turned out b9.  Had lumpectomy on 2/8/11.  Did not get clear margins but did get a good oncotype DX result and clear nodes, stage 1.  Turns out there were 6 other small tumors around the main one.  Hate the linear motion of this cancer.   Second lumpectomy on 3/8, still not clear margins.  Single mastectomy with reconstruction on 4/28/11.  Have dealt with 3 more surgeries for infections.  Yuck.  Finally feeling better.  Just started tamox.. a little scared.  Most days want to put this all behind me but there is a big part that is scared that it will come into the other breast.  Was discouraged from doing bilateral and I think I still feel ok with that but of course when you read some of this you wonder if you made the right decision.

  • tinat
    tinat Member Posts: 2,235
    edited July 2011
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    amm42:  If you don't mind my asking, who discouraged you from having bilateral surgery?  I'm not saying it's the best and only answer, but both my local breast surgeon (who didn't end up doing my surgery) and the breast surgeon who did my nipple sparing BXM in San Francisco were very supportive of me having both breasts removed in after my ILC diagnosis.  They both told me it was a total "peace of mind" decision on my part and gave me the pros and cons of both uni and bilat surgery.

    (Edited to add):  I didn't mean for that to come across as second-guessing your decision.  There is no absolute right or wrong choice here, only the best choice for each individual.  You chose to save a breast and deal with monitoring the other one.  I chose to have a BMX for peace of mind, but deal with having two numb reconstructed breasts and will never know if it was even necessary to have the second removed.  I'm just surprised that you were discouraged from BXM as both the BS I spoke with were very even-handed in how they presented the options and didn't push one way or the other.  Both supported my final decision....   

  • Seashellie
    Seashellie Member Posts: 42
    edited July 2011
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    Hi Ladies, I was just diagnosed last month with ILC. I had been taking hormones for about 8 months prior which fueled the fire, I'm sure. I was having some nipple discharge and found a small lump just prior to my yearly mammogram. The lump couldn't be seen on the diagnostic mammo but was clear on the ultrasound. I sure wish insurance companies would start covering MRI's as a screening tool. I had a BMX on 6/30/11 and get the results of my Oncotype in a few days. This is all so scary and new to me. I'm glad to have found this forum and have learned so much so far. It's comforting to know I'm not alone on this journey.