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Whats your ILC story?

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  • Wendymartha1
    Wendymartha1 Member Posts: 12
    edited October 2012

    Rdrunner I am sorry too.  In many ways I feel that the health care system failed me.  I trusted my faithul mammo's and gyn appoitments.  Nobody told me I had fibrous breasts, which makes immaging difficult.  If I knew I would have asked for an ultrasound or MRI.  Your decision to go for the MRI is a good one!  An MRI is the only immaging modality that truly detected all of the lobular and activity in my breast.  I think the info. will guide the surgeons when I have surgery tomorrow.  Also, you are lucky to have all the scans.  I was refused all scans except a bone scan which I begged for due to leg pain.  It sounds like you are in good hands.  Hang in there...

    Regarding history - my Mom's brother also has leukemia and my Dad prostate cancer.  My BRCA results are not in yet but no family history of breast or ovarian cancer.  This disease is a tricky beast!

    Wendy

  • Cleta
    Cleta Member Posts: 4
    edited December 2012

    Dear Lobular Ladies,

    I am new on this site and I found this topic very useful!

    I had my first mammogram in June, 15, and the doctor said that he had a feeling that is something hidden in my dense breasts, especially in the left one.

    Next week the ultrasound dr. confirm and recommend a MRI which states "most probably malign multifocal lesions" and biopsy identify ILC and LCIS in my left breast.

    I have started the neochemo in July 16, with 4 rounds of Cyclophosfamide and Epirubicin followed by 4 rounds of Taxotere. On December 18 I will have the last round of Taxotere and in January 7, I will have the surgery.

    It will be a mastectomy but now, I am thinking to a bilateral mastectomy, taking in consideration the features of Invasive Lobular Cancer. I don't want to have surprises in my right breast, (and no more chemo).

    Hugs for all of you, brave women!

    BTW

    Excuse my language, English is not my first language!

  • Momine
    Momine Member Posts: 2,845
    edited December 2012

    Cleta, welcome, and sorry that I don't know any Romanian, although your English is perfectly fine.

    You will find that many women with ILC opt for a bilateral mastectomy, if the affected breast has to go anyway. I am one of them.

  • Gitane
    Gitane Member Posts: 58
    edited December 2012

    Hello Cleta,  I just wanted to say welcome.  It is always amazing to me to communicate to someone in another country like this.  I'm glad you found us and I hope your treatments are not too hard on you and are very successful.  My thoughts were very much like yours when I decided to have both breasts removed.  I know it was the best decision for me.  Hugs to you,  G.

  • Cleta
    Cleta Member Posts: 4
    edited December 2012

    Dear Momine, Dear Gitane,

    many thanks for your nice words! This means a lot to me! Romania is a small country, I could not found any another woman with ILC, and now I realize that I am not alone!

    Next week I will meet my sourgeon and I will ask for BMX. Hope to be possible, because here, medical standards requires conservatory surgery!

    Hugs!

  • tinat
    tinat Member Posts: 2,235
    edited December 2012

    Cleta - Your English is just fine :) 

    Every woman has to make this decision based on the known facts from imaging and biopsies and her own comfort level.  I had both ILC and DCIS in the same breast, but I chose bilateral surgery.  After surgery it was discovered that I had more early lobular and ductal disease that never showed up on any of my imaging studies.  So, it definitely turned out to be the right choice for me.  On the other hand, there are women who have lumpectomies and do just fine.  So.....it gets back to that comfort level again.  My breast surgeon said that especially for women with dense breasts if you are going to always have nagging doubts about the ILC popping up in the opposite breast then choosing bilateral surgery is a reasonable choice.

    Nothing about this is easy!  I hope chemo goes well and good luck with whatever surgical choices you make.

  • Cleta
    Cleta Member Posts: 4
    edited February 2013

    Dear Ladies,

     I could not have bilateral mastectomy, due to Romanian Medical Rules. It is forbidden to have bilateral without a clear evidence of disease.

     So, I am now five weeks after surgery, still with one drainage tube, still productive, waiting for complete recovery and radiotherapy.

     After surgery my ILC tumor had only 2.5 cm ( 3.6 cm prior to chemotherapy), and only 3 nodes out of 23 were positive.

    Good luck to all of you!

  • tinat
    tinat Member Posts: 2,235
    edited February 2013

    Hi Cleta - Nice to "meet" you!  Sounds like you would have prefered a bilateral surgery, sorry you were not able to if that's what you wanted.  Will you be able to have MRIs to monitor the other breast or do they follow with mammograms or ultrasounds or ??? 

    Drains are so annoying - hope you get yours out soon! 

    Best wishes for the rest of your treatment!!!

  • Gitane
    Gitane Member Posts: 58
    edited February 2013

    Hello Cleta,  

    I'm so glad you came back to let us know how you are doing.  I remember wanting that tube out.  It shouldn't be long now.  I had chemotherapy similar to yours and it did not kill all the cancer in my breast either.  It seems that is not unusual for ILC.  We will be thinking of you.  G.

  • BettyBoo
    BettyBoo Member Posts: 17
    edited February 2013

    According to a presentation at San Antonio in 2012 on a study done in the Uk on ILC & contralateral risk, they found no difference between ILC and IDC on contralateral recurrence/incidence. http://www.docguide.com/invasive-lobular-breast-cancer-does-not-boost-risk-contralateral-disease





  • Momine
    Momine Member Posts: 2,845
    edited February 2013

    Betty, I saw that too, and I was quite surprised. When I was diagnosed, the docs all seemed to think that contralateral risk was higher with ILC.

    That said, they could find nothing bad in my left breast on either mammo, CT or ultrasound. Once they lopped it off, however, the path showed LCIS and pre-cancerous changes of various kinds as well. I asked my surgeon if he thought it had been the right thing to get rid of it and he nodded gravely.

  • toomuch
    toomuch Member Posts: 254
    edited February 2013

    Nothing scientific here but my right breast showed nothing on mammogram, ultrasound or MRI but the MX pathology showed an area of ADH. I know that having a BMX was the right decision for me!

  • BettyBoo
    BettyBoo Member Posts: 17
    edited February 2013

    I wish I would have been given the option for a prophylactic mx, so worried what about what may be lurking in there, but my surgeon just said there isn't enough evidence that ILC puts me at higher risk of contralateral bc and after chemo etc any risk of recurrence is very low. And now there is no more follow up as I am three years past dx it's a bit worrying. All other literature clearly states that ILC has a higher risk of being contralateral especially if it was multifocal/multicentric like mine.

    http://www.mdanderson.org/newsroom/news-releases/2009/researchers-identify-risk-factors-for-contralateral-breast-cancer.html



  • toomuch
    toomuch Member Posts: 254
    edited February 2013

    Betty - What do you mean no more follow-up?

  • C-squared
    C-squared Member Posts: 338
    edited February 2013

    Hi all~ I'm so glad I "stumbled" across this board too.., I didn't realize it existed.  My ILC, like many others, was a "thickening" of the breast that I first noticed.  Due to an extensive family history, they fast-tracked me through and I was SHOCKED to hear the news.., after all I have AFLAC! (you've seen the commercials with the duck, yes?) 

    Though I knew I would ultimately have a double mastectomy (I tested positive for the BRCA gene), I chose a "reverse-path" of treatment (my request) and had chemo FIRST.  I was slated to have 12 Taxol's but 1/2 way through, the oncologist sent me for an US (to make sure the tumor was shrinking).  Low and behold, the US showed the tumor LARGER than initially measured. YIKES!!! The chemo was halted and off to the operating table I went (for a lumpectomy).  WOULD YOU BELIEVE that the US was waaaayyy off in measurement?!??!?!  The surgeon thought he was looking for a 6.5 cm tumor (initially 3.5 cm at time of diagnosis) but the pathology came back with a 2.5 cm mass and clear margins!! So it HAD shrunk, after all!  Fast forward - I resumed chemo and had my last 4 dose-dense AC treatments - which landed me in the hospital with neutropenia, but that's another story. 

    I had my BMX last July 5th and TEs placed.  They were the Sientra double-chamber.  I really liked the concept of the double chamber and I didn't start to dislike Sientra until I went in for a fill one day (in August - the school year had begun) and my PS found the fill port turned on its side.  Yep!  My TE had rotated itself into my armpit.  No wonder I was so uncomfortable!  Needless to say, he swapped that one out and we scheduled the exchange for December (after Christmas & over my winter break - school schedule).  After having had the exchange, I'm still trying to find my new boobs.  I think they're smaller than what I started with (which was only a large A/small B to begin with.)  They are Sientra 425? something or other (I don't have the 'i.d. card' nor do I want it since I'm not keeping these).  My next follow up appt with the PS is March 29th and if I haven't found 'em by then, we'll be talking about scheduling ANOTHER exchange.  I'm not trying to be greedy (or voluptuous) .., but after all that I've been through..., well, you know the story. 

    So to my ILC 'sistas', Thanks for listening!  I know it's a lengthy one (& maybe too much detail) but it amazes me when I think about what I was going through last year at this time.., and how far I've come!  I encourage us all to ADVOCATE, advocate, advocate for ourselves!!! We are entitled to 2nd opinions.., to ask questions.., to receive answers.., to research and educate ourselves.., and to make the BEST decisions we can based on the information that we have at the time! 

    Please take care and NEVER beat yourself up for cancer.., it's doing enough harm already!  Tongue Out Truly, C2

  • BettyBoo
    BettyBoo Member Posts: 17
    edited February 2013

    Here in the UK more and more there is a move towards "patient led" open access follow up. Unless there are symptoms of recurrence there are no scheduled follow up appointments. If you are experiencing any symptoms which relate to recurrence you can access your primary care physician who will refer you back to the local breast unit. For women over 50, they go back into the National Health Service Screening program with bi-annual mammos under 50's like me have a annual mammogram. Not much good, as my ILC did not show on the mammo! It's not very reassuring and really, by the time symptoms appear any recurrence is probably well advanced....

  • bean
    bean Member Posts: 15
    edited March 2013

    Hi everyone ~ I joined your board about a month because I had a little scare . . . It's benign, thank God.

    Now I'm here for my sister. She had ILC 10 years ago. Went through chemo, radiation, etc. Although the cancer had metasisized to an area in her mid section/abdomen (not sure exactly where), she was said to be cancer free a year later.

    So now, unbeknownst to me, she has been throwing up a lot for the past month, especially after eating fatty foods. Her boss was finally able to convince her to go to the ER (I live in a different state), and she's been in the hospital now since last Thursday. She had a colonoscopy which showed a "blockage". She is in surgery right now as I write this to remove this blockage.

    I just got off the phone with my dad who told me that she also had an MRI that showed two "bone lesions". I'm sure my sister has withheld this information from me so that I wouldn't worry. I'm already convinced that her "blockage" is cancer. I am freaking out that these bone lesions are cancer too and that they are going to find her whole body revenged with cancer. She's a strong woman and I know she can fight, but I'm so scared that she is going to be one of those people you hear about that go in for a tummy ache and die a few months later. She's 50 years old.

    Has anyone here had their ILC metasizied to their bones or colon? What should we expect? HELP!   :-(

  • bean
    bean Member Posts: 15
    edited March 2013

    bump...

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    Hi y'all ..Like many before me I stumbled upon this site while looking for answers...I'm a 53 year old wife, mother, and grandmother...and am owned by 2 dogs, 2 cats, 2 chickens, and a multitude of fish...a few months ago one of my dogs began acting odd towards me, she followed me, barking, whining and at times actually crying tears, I thought she was ill....finally I noticed that each time she jumped on me she placed her paw on the same spot on my breast. There I found an area that felt different...mammogram showed nothing was there, US showed nothing was there, but yet I could feel it..On 1/15/13 I had an US guided core biopsy, I should have know something was up when the US technician commented that the lymph nodes look okay. On 1/30/13 I was told that I have ILC, with DCIS thrown in too. BS recommended lumpectomy, until my MRI results came in...it showed other areas of concern so he changed his recommendation to mastectomy ...I chose to have bilateral mastectomy which was performed on 3/12/13, no reconstruction. On 3/27/13 I returned for the second post op appointment thinking I would be rid of the remaining staples, and be sent to the oncologist, instead I was told that he didn't get clean margins, so tomorrow 4/2/13, I'm having additional tissue removed, and skin grafted from my thigh on to my chest to close the incision. The pathology from the sentinel node biopsy showed 200 cancer cells, according to the surgeon that's nothing to be concerned about, easy for him to say they aren't his lymph nodes, I don't want ONE cancer cell anywhere....Right now I have no idea what course of treatment to follow..I will see the oncologist for the first time on 4/9/13..I don't know my stage, my grade, + or -, Who tells me those things? What questions do I ask?

    And to add to my stress I have NO insurance, so instead of searching for answers to my health questions I've been searching for financial options. I feel as if my health is suffering, and that I'm being treated differently than someone who has insurance.

    Thank you for listening...Any information you can share will be appreciated

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Hi gramwe,



    I had read your post elsewhere about your dog. I am so happy she indicated you needed to get help!



    I am sorry you did not get clean margins either. I am hoping your surgery tomorrow gets everything they need. (I too am facing another surgery for better margins)



    When I had my sentinel node tested I had 18 tumor cells present. At that time my doctor had said anything over 200 was considered a positive node and would potentially alter my treatment plan. Mind you, this was my breast surgeon, NOT the oncologist. When I see my oncologist on Thursday I will hear what she has to say in regards to my treatment plan. I am sure your oncologist will let you know what that 200 means.

    Here is a link in regards http://www.uptodate.com/contents/sentinel-lymph-node-dissection-for-breast-cancer-indications-and-outcomes?source=outline_link&view=text&anchor=H6264723#H6264723



    As for insurance, I have read a lot of people do not have insurance and there ARE resources available. Unfortunately I had not paid attention when reading those responses. I am sure someone who is knowledgable will come along to give you the information you need.



    Prayers for you.

    Pat

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Gramwe,



    Click on the too of the page "breast cancer.org" and in the search box type in UNINSURED. a bunch of kinks will appear and you might find some useful info.



    Pat

  • C-squared
    C-squared Member Posts: 338
    edited April 2013

    gramwe~ your story brings tears to my eyes!  I just want to reach through and give you and your dog a big, huge hug!  

    Pattysmiles have given you good advice.  I know that there is a discussion board here about insurance issues.  Please do the search and I'm confident that you will get some good information.  That's one of the best things about bc.org is the wealth of knowledge and experience that is out there!

    I think that your oncologist will be able to answer your other questions related to the pathology. Can I suggest that you take a personal tape recorder or digital voice recorder with you to the appointment with the oncologist.  I did that and found it to be SO helpful for even months after the initial meeting.  Even if you DO have another person with you (which I did), having the conversation on tape to review ANYtime you want is so valuable!  It will leave you with NO questions about what was said.., you'll have that information right at your fingertips.  And, yes, I asked my oncologist / general surgeon / plastic surgeon (I took ot with me to all appointments) if it was okay with them.  Of course they obliged.  Who would want a physician that wouldn't?  

    I'm wishing you all the best gramwe.  I'll be thinking about you and hoping that you get your answers.  This is by far, one of the hardest stages in the process.  Once you have a plan you can at least focus on each step.., one step at a time.  Please keep us posted. 

    I'm also interested in where you are from?  There are also some discussion boards geared towards women who may be in the same area who can help.  For example, we have a thread for "IL Ladies"..., though not exclusive so if you'd like to come by and ask for advice, you are more than welcome. Here's the link:  http://community.breastcancer.org/forum/6/topic/504025?page=903#idx_27080

    Remember, there are lots of women on these boards here to offer you support that have a relatively good understanding of what you're going through (although everyone's experience is individual, there are some common threads). 

    I see that I am babbling so I will stop now.  I think shared my belief in bc.org and I hope you can find strength, hope and peace here with your new friends here.Smile

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    Hello y'all ....I've taken a few days off of cancer..my brain was in overload, as were my emotions. Tuesday's surgery went well...I did have a lot of bleeding on my chest that required a trip to the BS for a bandage change, and orders to not move...so I've been confined to bed and bored out of my mind..thigh stitches are itching....ok enough whining...Tomorrow I see the BS.. Tuesday the oncologist ....so I'll know more and undoubtedly be back here to read more...

    C-squared Thank you for the link and the hugs...I am from South Carolina..hence the hey y'all ...spring had finally arrived making being still, inside all the more difficult...normally I'd be outside planting veggies, flowers, and wading through the pollen, instead of looking out the window...

    Pattysmiles Thanks to you also for the link you posted...lots to think about ....lots of questions too....when will you be having your next surgery? I'm sorry you have to go through another one...

    Oh good grief I hear my lawn mower running...my DH is not licensed to mow our yard....running to save my budding flowers before he beheads them...

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Gramwe,

    Ope you are taking it easy.

    My husband must have went to the same lawn care place as yours. Moats year he took a weed wackier to my Lillies and mums! Ugh!



    Met with the oncologist, she wants chemo.

    Breast surgeon wants re-excision for better margins.



    Over the weekend I decided I want masectomy of "bad breast". I don't know, my headis spinning on this whole thing. Would like to just be outside planting flowers and cleaning flower beds (it is over 70 in NY today!)



    Will be meeting with plastic surgeons to hear what they have to say about reconstruction.

    I sure wish this was over .

    Pat

  • C-squared
    C-squared Member Posts: 338
    edited April 2013

    Patty~  I hope your weather is coming the Chicago-way!!!  Rumor had it that we are expecting SNOW this Friday!!!  Can you believe it???  SNOW!!!  Yell

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Oh c-squared, I LOVE snow. I will gladly trade with you!

  • C-squared
    C-squared Member Posts: 338
    edited April 2013

    Come on over for a visit!!!   Do you like Chicago?  Crazy weather GUARANTEED!!!  Tongue Out

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Lol, I dont mind the crazy weather!

    I have been dying to get there for the Wilton tent sale, typically the first weekend in June. Cake decorating is a hobby of mine. I have always had something going on that first weekend in June. This year I've got nothing going on, except cancer ! One year I will get there! (And since it will be June I'm going to guess the weather will not be snow!)

    Pat

  • gramwe
    gramwe Member Posts: 238
    edited April 2013

    No snow for us. We have an inch of pollen and its still coming down. Tomorrows rain will make for yellow puddles.

    Sure wish I was allowed outside to sneeze and scratch my eyes. Still on the no duty list waiting on the skin graft to take root. Maybe next week! Also waiting another 2 weeks for oncotype DX. All this waiting is agony. Thank goodness for Ativan.

    Pattysmiles, I admire those that have a talent for cake decorating. The few times I've attempted it, it looked like my grandson was the artist.

  • Pattysmiles
    Pattysmiles Member Posts: 147
    edited April 2013

    Gramwe

    Sorry you didn't get the snow,if you did would it have been yellow snow? (Couldn't help myself!)

    I hate when the pollen is so thick, that is usually when my sinuses run green!



    My doctor didn't order the oncotype, she said she wanted chemo regardless, and said too many "bad" scores. (I don't know that though). I had too many tumors so she said chemo regardless, so no oncotype test.



    I enjoy the cake decorating, took the basic classes at AC Moore, very cheap. Went online to Wilton discussion forums and learned so much from them, just like I've learned from these forums. The Internet is surely the best thing in regards to outreach to others and finding out information. I thank God everyday that it was invented.



    Stay well, rest up, you will be back in that gardening no time.

    Pat