Just diagnosed =(

Crescent5
Crescent5 Member Posts: 442
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Had a prophylactic bilteral mastectomy 1/13 because I was dx with PLCIS last year. BS just called with path report. Found 4mm ILC & 7mm ILC.Seems pretty small? We hadn't done SNB because mammo & mri were clean.=( Having node biopsy tomorrow. Scared to death  Please no one come at me with anything scarier. I thought I was done and now it's starting all over. =*((((((

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  • november
    november Member Posts: 103
    edited January 2012

    Crescent5-Sorry to hear but hang in there; you are not in this alone. Hope you won't have to deal with anything scarier

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  • Rennasus
    Rennasus Member Posts: 1,267
    edited January 2012

    Crescent5: So, so sorry to read about your pathology results. You did the right thing by having the BMX. Try to keep busy today and while you are waiting for the SNB results... they should be able to give you some info tomorrow. Sounds like you caught this early. keep us posted!

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  • mary625
    mary625 Member Posts: 1,056
    edited January 2012

    Hang in there!  You obviously did the right thing by having the PBMX.  The areas sound very small indeed and probably will not find anything in the nodes.  Even if they do, it doesn't mean it has spread.  It is so hard to think you're done and have this come up!  Sending positive vibes your way!

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  • beacon800
    beacon800 Member Posts: 922
    edited January 2012

    I really, really relate to your post and am sooooo sorry this is the path report result.  It happens this way sometimes.   But on the bright side:  did you make a GREAT choice to do that BMX!  Gosh, how long would it have been til they found that invasive if you had waited?  Lobular is such a damned sneaky cancer.  Your MRI missed it to, huh? 

    I think the oncotype and the hormonal profile will give more information on how aggressive it is and how much of a chance of it's having spread.  What they found does sound very small and that is very, very positive.  So, are they taking many nodes or how are they deciding which nodes to take on your next surgery? 

    (((hugs))) to you!!!!!!  I am sorry you are going through this. 

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  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2012

    Thank you so much ladies! The BS will take 5-6 nodes tomorrow, I did not get the oncotype. MRI was in Oct & totally missed it. I know I'm lucky that they caught it early, but I am so so scared. My son is due home frm school shortly, and I'm trying to look not scared.

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  • toomuch
    toomuch Member Posts: 901
    edited January 2012

    Crescent5 - The diagnosis and waiting stage is definitely the hardest part. Once you have the node results and are able to have a plan in place for your treatment, I'm sure you will feel better. Definitely speak wiith your doctor about getting the oncotype done on the tumor. The results can help you make treatment decisions. Hoping that you get good news with your node biopsies. (((hugs)))

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  • Cyborg
    Cyborg Member Posts: 848
    edited January 2012

    My heart will be with you...

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  • firstcall
    firstcall Member Posts: 499
    edited January 2012

    cresent5 - Best wishes tomorrow.  I had a mastectomy on 12/29 with a SNB, and 5 days ago had a lymph node disection because there was a micromet on my SNB.  I'm just writing because you have it pending, and mine is so fresh.  The hardest part is anticipating the surgery.  Having a second surgery before the drains are out from the first surgery is challenging.  But you should do fine.  Keep a positive attitude.  Hopefully your nodes will give you a good report. Its hard, but its doable.  Each day is a little better than the day before.  

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  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2012

    Thank & bless you all.  Was very touched at the hospital today when various nurses told me they were multi-year survivors. <3 Very surprised how many there were, especially since this was not a BC hospital. You ladies give me inspiration too. Thank you very, very much,

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  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited January 2012

    Hi,

    I've been an PILC survivor since Oct. 2006.  I have had lumpectomies, BMX, Radiation,Chemo, Tamoxifen and Arimidex.  I work full time and really enjoy life. My hair is finally back enough that people don't know I ever lost it.  Life is looking good and I plan on being around for a long time.  Good luck with your treatments!!

    Take care,

    Nancy

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  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2012

    Thank you Nancy. I really love your attitude. I plan on living my life to its fullest too and will appreciate all the good moments even while waiting to see if this has spread. Best wishes to you.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2012

    Well, I did plan on living my life to its fullest until I woke up crying. Cancer just sucks.

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  • Racy
    Racy Member Posts: 2,651
    edited January 2012

    Crescent5, try not to worry. With such a small tumour, chances are you will be fine. Not knowing is terrifying for sure. I hope your surgery is easy and the nodes are benign. I will pray this for you.

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  • ali68
    ali68 Member Posts: 1,383
    edited January 2012

    Hi Hun, it's ok to cry I cried every time I took my youngest to her horse riding lesson. When do you get results? I can't give you any words to make you feel better, I know what you are going through like everyone else. I won't tell you to think positive because I hate that word.



    Alison xx

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  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Blech, that sucks. However, those are small tumors, so there is a really good chance the nodes are clear. I am so glad you had the BMX though and found them now. 

    Unfortunately cancer treatment has a tendency to drag out. I'll keep my fingers crossed that your nodes "pass." 

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  • Momine
    Momine Member Posts: 7,859
    edited January 2012

    Hey, crescent, I think it is safe to say that we have all been there, waking up crying. It is rough when you first get the dx. You WILL enjoy your life again. I promise. Part of that is allowing yourself a good cry once in a while.

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  • november
    november Member Posts: 103
    edited January 2012

    Crescent-BC is a lot to deal with; allow yourself to cry; it is healthy; you will have better days

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  • Lifeafter
    Lifeafter Member Posts: 690
    edited January 2012

    Hi ladies, I have a question. My MIL's sister was just diagnosed yesterday. I went with her to the oncologist yesterday to be her ears and ask questions. I took notes from the path report. Can you tell me the severity of this? I have another thread regarding this and surgery. It seems this is the better place to ask?

    left aux node biopsy - 4/4 nodes w/metastatic adenocarcinoma, largest focus 2.2cm, rare focus suspicious for extranodal extension, crush artifact, precludes optimal evaluation

    Left upper breast - Invasive mammory carcinoma (ductal/lobular mixed), nuclear grade 2, two foci (2cm/3cm), few foci intermediate grade dcis

    left lower - multi focal (7) IMC (duct/lob mixed), nuclear grade 2 (.1cm)

    superior margin - small foci (1mm) IMC

    medial margin - multi foci (4) IMC, lobular features (.2 to .8 cm)

    deep/inferior margins - benign

    Michelle

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  • Crescent5
    Crescent5 Member Posts: 442
    edited January 2012

    Thank you ladies, I'm still waiting for results. I thought I'd be done with this shit. =*(

    Mrochon, I'm very sorry to hear about your sister. I think though, that you'd get more help if you started a new thread. :)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    Hi Crescent - So sorry about the final path report. Is there a next step or are you done now? I am scheduled for a PBM on Feb 21. My biggest fear (I guess I have to worry about something) is that final path report. Question - did you have a MRI before everything was done and it missed the tiny tumors? I'm not sure I want to know the answer. . .

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    Oh wait - I see- yes you did have an MRI -EEK!

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  • Crescent5
    Crescent5 Member Posts: 442
    edited February 2012

    I had an MRI in October, PBM in January. My BS was just as surprised, so I imagine this doesn't happen too often.

    I'm going to Boston to discuss w/oncologist. BS is not recommending anything. Hopefully onc will agree. I do have to see if he thinks it's OK for me to keep my nipples.

    Best of luck with your PBM. FWIW, something told me something was wrong in October. I was really nervous about getting the results of MRI. When they told me nothing was found and to come back in 6 months, I thought, "yeah right. I'm getting a PBM."

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    I think we often have a 6th sense about this stuff.  SO glad you were proactive with the PBM!

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    Crescent - You can add me to the this totally sucks category. I had my "preventive" bilateral mastectomy on Tuesday. I just got the pathology back - they found a IDC 1.1 cm in the right breast nowhere near the problem area. The left breast was clear, no atypia or anything. Folks - I am hear to tell you, I am the poster child for high risk screenings. An MRI in 2011, one in 2009, about 4 mammos, plus ultrasounds, a thermogram in the last year alone. They cannot see what is in the dense breast tissue. Apparently 1 cm is about the threshold for things to show up on an MRI. Mine didn't. We'll know more next week. I am beside myself, but at least that stuff is outta me and I feel really good from the mx on Tuesday.

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  • Chris13
    Chris13 Member Posts: 254
    edited February 2012

    Joining the group. And thanks to all of you posting with great info and sensitivity and support.

    Routine mammo showed a spot, ultrasound then MRI showed ILC. Before MRI (which exacerbated my tinnintus horribly and permanently) the tumor was thought to be 8mm. MRI showed it to be 2.5 cm. And a second tumor, about 1 cm. 2nd MRI/core bioposy showed them too far apart (10 o'clock and 8 o'clock) for lumpectomy, so I will have the honor of having a mastectomy.Mom had the same in the late barbaric 60s....they yanked everything and she had horrid lymphedema and eventual bone mets, while taking a male hormone that made her grow facial hair. Horrible, but she was a trooper and so was my dad. (The cancer wasn't what killed her.)

    Great news on my 65th birthday! Tongue out

     The team at the Bryn Mawr Breast Center (PA) is great so far. Will talk to the surgeon Monday to plan things out. I like having only women involved, although they may have to bring in a male plastic surgeon who specialises in DIEP, if appropriate.

    I was worried about chemo side effects (primarily chemobrain) if I would need it, and now see masts can product permanent nerve damage. The news keeps better and better! 

     On the bright side, the first tumor is ER+PR+, HER- and probably nodes are clear. Of course I started with an 8mm tumor, so who knows that is really in there. Embarassed

     Well, that's my rant. BTW, I have fabulous support from family and friends around the world, so I shouldn't feel too sorry for myself. Just do. Rather, angry. 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    Chris -Sorry you have to be here, but these boards are a blessing for all of us. I know they save me.

     For what its worth, I put the cart before the horse and had the MX before the diagnosis. Anyhow, The mx went great, I'm healing really well, my daughter is my nurse, and three days after surgery I feel great, oh except for that fact that I am shaking like a leaf from the path report.

    Seriously, since the middle of November I have been working out like a mad woman, walking outside, doing incline aerobic walks on the treadmill, and doing the Dr OZ You On a Diet intermediate workout. ( It is on u-tube) Stregthening my core and my legs has been key in my recovery from the BMX with implants.

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  • Crescent5
    Crescent5 Member Posts: 442
    edited February 2012

    Chirs & Lucy, I am so sorry you're in the club. Hpefully the drs will have very god news for you soon. {{{hugs}}}

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2012

    You hang in there too Crescent my friend.

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