ILC Stage III women

paige-allyson
paige-allyson Member Posts: 781
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I've met quite a few women here who like me have locally advanced/Stage III ILC, but I'm sure there are many I've missed and vice versa. Both ILC and Stage III breast cancer bring with them some disease and stage specific issues and concerns.

I thought it might be good to create a thread specifc to this group and to see who else/how many other Stage III/ILC women are out there. 

Paige (formerly known as Allyson)

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  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    Hi...I am stage 3/ILC. Many of us ILC are stage 3 for several reasons...not able to find these on mamos until often advanced....and often don't present themselves with a lump, more scattered. I know I never missed a mamo and mine was found as a small shadow that peaked the interest of a radiologist. What I hope to find on here are stage 3/ILC that make it a long time....

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  • karen1956
    karen1956 Member Posts: 6,503
    edited January 2009

    Paige - ILC 3A here

    Judy - next month is 3 years from Dx.

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited January 2009

    Judy- Mine was missed on mammo and needle biopsy although it was ultimately picked up on a routine mammo, but I'd first felt a change in the area back in 2000. I make a point of not thinking about this too much since it's a bit upsetting and not very productive.

    I've done well with tx so far- minimal side effects during chemo, likewise with the Femara I've been on for 1 year plus.

    Hi Karen- It'll be 2 years since diagnosis for me in May. 

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  • robinri
    robinri Member Posts: 40
    edited January 2009

    good to hear form you survivors out there...

    I too had it ultimately picked up on mammo but had a few subtle changes that were not adressed thoroughly enough to get a dx. Oh well counter productive as you say.

    I am just in the process of loosing my hair and will soon be onto round 2. So early on in treatment.

    Keep the survivor stories coming...I worry for my kids..9yrs and 11yrs..

    Robin

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  • Amydale2
    Amydale2 Member Posts: 3
    edited January 2009

    I was stage IIIa and B, went through chemo and radiation last year and have reconstruction scheduled in San Fran, CA March 5th (I live in OH).  All good, except I'm now waiting on results from a biopsy done Friday on my remaining breast.  I was kind of excited about the possibility of the DEIP procedure, but now don't know how to proceed.  Even if the results are good (benign), I am now thinking I want to go ahead and have another mastectomy.  Am I crazy?  How will this affect the DEIP procedure?  I am so tired of all of this and just want to feel normal again.  Any support/ideas would be very welcome.

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  • bbmom
    bbmom Member Posts: 391
    edited January 2009

    I'm a stage IIIC ILC gal too. Like the rest of ya'll my mammo missed it.

    Amydale2 - You're not crazy. Actually if you're having DIEP and you have enough tissue to make 2 breasts it may be a good idea to consider doing both. The surgery will remove the tummy tissue from hip to hip. If all the ps has to do is create one breast any excess will be discarded. You can only do DIEP once.

    I had a mast at the time of my dx and once I finished treatment I chose to have the other breast removed at the time I had DIEP. My surgeon and onc both agreed removing the other breast was a good idea considering my dx. That and the fact that DIEP was a one time shot made me decide to go for it.

    Hang in there.

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  • Trish03
    Trish03 Member Posts: 292
    edited January 2009

    I'm also Stage 3 ILC. September marked 5 years since my dx....so far, so good. I had DIEP 2 years after first mast and chose at that time to have the good side removed and have BL DIEP. I"ve never regreted that decision.

    My 7 cm tumor did not show up at all on the mammogram. I found it because I had nipple retraction.

    All the best to everyone,

    Trish

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  • harvey
    harvey Member Posts: 103
    edited February 2009

    I found a rather large lump one day . GP refered me to the local breast clinic. One stop shop - great as you know wants wrong the same day.

    The lump ,5cm, though clearly visable to the naked eye never showed up on the mamogram. Seems because I'm fat it just got squeased up and over. However it did show on the ultra scan. Biopsie comfirmed that there was cancer cells present.

    Two weeks later had W.L.E followed by chemo and 15 big dozes of rads - I refused to take AI as I have to work full time. Its shift work and can be very heavy going.

    Its coming up to 3 years now. ST Valintines day is the day. I'm still looking for the positive bits  - the bit that makes it all worth while. Apart from being able to keep my job there have been none.

    Hope every one is keeping as wel as possible and life is being kind to you all

    Harvey

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  • NinaK
    NinaK Member Posts: 7
    edited February 2009

    Hi Ladies,

    I am also Stage 3 ILC...my 5 yr of being on arimidex is coming up May 13th (yay!).  Mine was missed on mammogram, ultrasound...dx from needle biopsy...then had cat scan and pet scan which showed nothing either.  I did chemo first (4 AC; 4 Taxol) to shrink the mass (10+cm), then bilateral mastectomy (left breast was prophylactic), then 28 rounds of rad's.  I don't know what grade it was; 2/19 nodes involvement...

    I'm feeling good; tolerated arimidex well and it's comforting to know that I'm not alone.

    Thanks for reading...

    Nina 

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited February 2009

    Nina- wonderful to hear from you. Thanks for posting. It is so good for us III/ILC who've been diagnosed more recently to hear from women like you with some years behind them. I had bilateral (R. prophylactic) also. Congratulations on your upcoming Arimidex-anniversary. Will you be going on another  hormonal? Seems like lately there's been a trend toward staying on hormonals for longer.

    I've been on Femara for almost a year and a half with no problems at all and am very grateful for this.

    Thanks for the bump Sherri.

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited February 2009

    Hi

    I am also Stage III ILC. I have been on Femara for a year and a half after having mast, chemo and rads. I have gained alot of weight and my hair is thinning. I go for a checkup on Monday with onc.

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  • rzxcd
    rzxcd Member Posts: 35
    edited February 2009

    I am 44 and also a stage III ILC. I got the news after surgery bilat,Jul 08, due to 14/15 nodes being bad. I had chemo + (Avastin  for a clinical trial I joined I'll continue getting this till July 09). I just started Rads had 5 zaps out of 33 and also started taking the Tamoxifin. I'm doing well so far. It is good to see several stage III's out there still doing good.

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited February 2009

    I'd love to hear from women who've chosen the bilat mastectomy with one being prophy.  I was diagnosed with stage III ILC, although my plastic surgeon suggested that lobular carcinoma is often thought of as bilat process, I had only a single mastectomy.  My breast surgeon's plan is to follow with annual MRI.  I'm going to need a lift on the good side, but am wondering if I should should ask for something more aggressive instead.  Also, I have a saline implant on mastectomy side right now (which hurts) and am facing radiation after chemo in April/May '09.  Would also love to hear what others have done to protect their skin and the reconstruction during radiation.  thx -C

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  • Alyson
    Alyson Member Posts: 4,308
    edited February 2009

    I belong to this group as well and am now two years out from dx.

    I had no lump when the mammo showed a shadow which the scan picked up clearly. even after the op the BS said she was unable to feel the tumor and the path report said the same thing but they could see a colour change in the tissue. Had mastectomy followed by chemo FEC-Taxol, a combination used here in New Zealand then had radiation. I am now on Femara and not suffering too much with the SEs.

    I am doing fine and intend to be around for a long time to come. It was stated on another thread that maybe we do well because the treatment we get is aggressive and are given few choices other than do this or you will not live. I also think that a positive attitude really helps.

    Alyson

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2009

    PrincessKauai59,  In answer to your question about bilat,  I had a prophy on the right side.  I'm glad I did.  Pathology on the good breast showed lots was going on there, too, a ticking time bomb. The same environmental factors, genetics, that caused the first breast cancer were at work in the other breast. Not malignant yet, though, thank goodness.  Not even MRI, will catch this before it's invasive, so why risk it.  I had saline implants, too, but no rads so I can't comment on that.  That said, it's only my opinion.  Others have very different feelings about this; it's very individual.  Hoping for the best for you in your treatments and after.

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  • PrincessKauai59
    PrincessKauai59 Member Posts: 288
    edited February 2009

    Thank you :)

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited February 2009

    I had unilateral of the affected breast L to start and then prophylactic mast of the R breast over a year later. This winter I briefly considered reconstruction (after thinking I never would). After a plastic surgery consult I decided firmly against it. I had radiation on the affected side and the plastic surgeon felt that an implant was not a realistic option due to the high chance of failure, then or in the future. He felt the best option for that side would be to take muscle from my back (lats). I was not keen on this since I use these muscles a lot- for swimming, etc.

    My husband and I  just went on a trip to Puerto Rico and I was pleased to find that I felt totally comfortable with my body- better than before in fact, since I'm thinner and in better shape. I don't wear a prostheis with a swim suit and my impression is that no one notices.

     I take Femara diligently (see my recent post on the hormonal treatment thread to see just how committed/obsessive I am!).  I've had minimal side effects- just minor stiffness when I get up in the morning or sit for a long time, and no weight gain.

    Wishing you all the best in your treatment and reconstruction/or not decision making.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited February 2009

    Well I had the mother-load!!!!!

    Stage 111C---- ILC tumor was 8 X 6 X 5...had skin involvement, vascular invasion, no clean margins on chest wall and several sides.....top it off with 17+nodes positive....and a little bit of IDC and grade 3. 

    Having had nothing good on my path report I am here to tell you that I am counting the days now to my 5 year anniversary at the end of May.

    Hope this helps everyone!!!!

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  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    Yatcomw....I want to thank you for your info. I have the positive node thing and my onc wasn't very encouraging. I think one of the bad things on this sight is most gals post when they are new and then go on with their lives. Since they don't come back we don't hear the success stories...only see the ones who hit stage 4 and then come back.  Bless you...Judy O

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  • petelzmom
    petelzmom Member Posts: 170
    edited February 2009

    Hi Folks,

    Well I was dx with ILC in my right breast in 11/06, a follow up MRI showed IDC in my left breast.

    I had 4 round of AC & 4 rounds of Taxol this was before surgery to shrink the tumors and get clear margins. Bilateral mast. in April 07 followed by 38 rad tx. No reconstruction which I am regretting a little - I'd like to feel normal again but also don't want to limit follow up care. I currently have an enlarged node that we are watching and am on Tamoxifen.

    I have 2 friends just recently dx and that has me a little freaked out, but feel pretty good overall.

    Good Luck and Keep the Faith

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  • JudyO
    JudyO Member Posts: 225
    edited March 2009

    Starla...thanks for the info...I have the 7+ nodes too and really love to hear people out a ways with the 7+ or more....makes my day....Judy

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  • Texas357
    Texas357 Member Posts: 1,552
    edited February 2009

    Just found this thread, and I'm loving the success stories. I had 12 years of mammos before mine was discovered by an alert radiologist on a routine mammogram. My surgeon said most radiologists would have missed it (and probably did).

    I expected my surgeon to recommend bilateral, but he didn't seem to think it was necessary. I'm determined NOT to have a return performance. I'll get the lat flap reconstruction in November/December 09. Not that I'm looking forward to that surgery, but from what I'm told it has the best chance of a longterm good outcome.

    That's what I'm about through this whole process: give me the best odds and then let me live my life!!!

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  • reba1717
    reba1717 Member Posts: 8
    edited February 2009

    THANK YOU FOR POSTING YOUR STORY! I am so sorry that you had to go through this, but so inspired by you. My mom (a young 71)  is still in the process of being fully diagnosed (they keep telling us pieces until they know everything).

    I suspect she falls into ILC at least stage III

    January 09, they found 2 "lumps" on a mammo- approx 2cm each both positive

    Lumpectomy, where one was found to be a lymph node and sentinal node was positive; the mass turned out to be 6CM

    Last tuesday, she had a modified radical on the left breast and node dissection.

    She is recovering beautifully. She goes for post op Wenesday and we should know about the node pathology.

    They have yet to do an MRI, or anything on the right breast, which I encouraged because of the sneaky features of ILC. She did have a port put in, so we suspect some kind of chemo.

    She is of course, post meneposal, so i am sure there will be some receptor status, but we dont have that info yet.

    I lost my first husband to a bone marrow transplant for leukemia, and I know that i am dealing with a whole different disease and treatment with my mom, but it is so hard not to "go to the worst case scenario".

    This forum is so helpful and stories like yours are just refreshing. I hope Mom will have a great story to tell very soon!!

    Blessings to all of you!

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  • susaloh
    susaloh Member Posts: 103
    edited February 2009

    It´s so neat to come to this board and to know where I belong....on the German boards my case is rather unique, but here I´m just one of many....

    I was diagnosed three years ago in January with a 10x9 cm tumor - 5 months after the last clean mammo! It must have been there all along because it´s a slow growing one (Ki 67=10%). I had neoadjuvant chemo and when I was finally operated, there were only 4.5 mm (yes millimeter) left of the original tumor). The 11 lymph nodes they took out turned out to be a field of destruction - lots of fibrosis in ALL of them - even though there was only one micrometastasis of 2 mm left alive. However, if operated straight awayI definitely would have been a stage III...I was 45 at time of  diagnosis, by the way.

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited February 2009

    Wow-I am feeling so not alone right now! I had no idea when I wrote the original post that there were so many women with Stage III ILC out there who like me wanted to connect and were eager to hear from women who were a few years past their initial diagnosis. I'm really impressed by how young (relatively) so many of us are and it's been interesting to hear your different stories and treatment experiences.

     As I've mentioned on another thread, I've just been approved to receive my 1st Zometa infusion when I go for my 3-4 month oncology follow-up on 3/17. I'm happy to have this additional avenue of treatment become available. 

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  • PeggyDixon
    PeggyDixon Member Posts: 125
    edited February 2009

    Dear paige-allyson.....I know you have probably explained this before, but why are you starting Zometa?? I am a stage III ILC woman too - clear mammos and ultrasounds, negative clinical exams....then boom!! A 10cm tumpr and 12 nodes +. I didn't have chemo before surgery so I have to hope that it worked! I have been on Aromasin since September after two years on Tamoxifen. I figure I am high risk although the oncs have never come right out and said that.....so I want to use whatever I can so I'm around for my kids as long as possible. Any info that I can take to my onc would be appreciated. Thanks so much.

    Peggy

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  • nash
    nash Member Posts: 2,600
    edited February 2009

    Peggy, I'm Stage II, but my onc just started me on semiannual Zometa b/c of data that is suggesting it can prevent bone mets. There is some evidence that it can even prevent other types of mets. It's an off-label use, though, so a lot of insurances aren't covering it. My insurance covered my first dose, but not sure what's going to happen with the second dose in six months.

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited February 2009

    Hi Peggy-

    I'm happy to tell you about it. As Nash just said, Zometa, a biophosphonate drug used to treat osteoporois, and has also been used to treat women with bone mets, has recently come into use as a treatment to prevent bone mets in high risk women. It is not yet the standard of care but the data suggests that it likely will be soon. My insurance, Anthem, agreed to cover it.

     Here's a link to a thread in which the topic of Zometa has been discussed in greater detail. I think some Canadian women have shared re: their experiences getting this treatment. I feel the same as you- very eager to receive treatment that offers a credible chance of improving/extending my chances of sticking around for a while. My children are grown and although I'm fairly "young" (49) I'm looking forward eagerly to the birth of my first grandchild in August.

    http://community.breastcancer.org/forum/67/topic/724607?page=4#idx_120

    For some reason the link option here is not making itself available to me so you may need to copy and paste.

    Paige

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  • Joy232
    Joy232 Member Posts: 97
    edited February 2009

    I was diagnosed with stage 3 ILC mixed with some ductal in March 03.  At one point it was 10 cm.  I had a mamogram 1-1/2 years  earlier and one day I just felt this hard spot and it was growing very fast. I had all standard treatment of mastectomy, chemo and radiation.  I have just finshed 5 yrs of arimidex.  I am thankful to be alive and still work hard at trying to stay NED.   

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  • Joy232
    Joy232 Member Posts: 97
    edited February 2009

    Turegrit, I am not taking any Arimidex right now.  I was given the option of continuing on a year to year basis, but no one knows yet whether over 5 years is beneficial.  Its more or less up to me.   I would really like to know what the other stage 3 ladies are doing as well.

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