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All TopicsForum: ILC (Invasive Lobular Carcinoma) → Topic: ILC with pos lymph nodes: need some good news

Topic: ILC with pos lymph nodes: need some good news

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

Posted on: Jan 7, 2012 03:02AM

claireinaz wrote:

Hi ILC ladies,

I need some good news. I've been able to remain pretty upbeat since my dx, lumpectomy, and now chemo, but I find myself hyperventilating sometimes about my positive lymph nodes and the less positive prognosis that brings.  My status :ER/PR+, HER2 -, 1.9 c. right breast, stage II grade 1 (6/11 pos. nodes).  I asked for and am getting the most aggressive tx possible. After chemo (finished DD AC, now 12 weeklies Taxol--2 down 10 to go)  I'll have either rad and bmx or bmx and rad (not sure what docs will recommend yet).

I need some encouragement from those of you who were in my shoes and are surviving and thriving just fine now...

Feeling a little scared today....you know.

Claire

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Posts 1 - 13 (13 total)

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Jan 7, 2012 03:02AM claireinaz wrote:

Oh-I had close but clear margins on the lumpectomy according to the pathologist and surgeon.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen to arimidex, BMX/immed recon 7/3/13 "God supposedly gives us only what we can handle. God must think I'm a badass."

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Jan 7, 2012 03:31AM Claire_in_Seattle wrote:

Why would you have additional surgery??  You have clean margins.  I would ask about whether you really need additional surgery, and get more than one opinion.  I was comfortable doing just a lumpectomy and I had Grade 3 cells.

Two years out, and I am just fine.  I had one grossly positive lymph node.

Congrats on being on the Taxol end.  I found that ever so much easier than AC.

The great thing about having a lumpectomy is that once you finish radiation, you are done with surgery, and anything affecting your breasts.  You can then just recover from everything. 

Now, I do have to say that mine are still good looking.  I am not sure how I would have felt if hanging down to "there" or some shape I didn't like.  So nothing worse than a couple of scars and being smaller on the surgery side.

Good luck with the rest of chemo. - The other Claire further north.

Completed all active treatment (AC +T, lumpectomy, and radiation). Now on to the rest of my life. So much to celebrate.

Dx 8/2009, IDC, 2cm, Stage IIb, Grade 3, 1/21 nodes, ER+/PR-, HER2-
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Jan 7, 2012 03:53AM momof3boys wrote:

Is it because of the ILC diagnosis that you're considering UMX or BMX?

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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Jan 7, 2012 08:51AM claireinaz wrote:

Yes--I'm not considering UMX but am considering BMX--maybe recon, I don't know. Have to talk to the MD Anderson team first.

I had 5 "clear" regular mammograms over 5 years that did not show anything. Did regular BSEs--that's how I finally found this (it was way over on the upper right quadrant on my right breast and my surgeon was amazed I found it--he said I did a good job). 

I also have very dense breasts (every time I'd get an exam some medical person would exclaim over them). I had no idea they would cause me harm. I am pre-menopausal, still. I'm looking at 5 years of tamoxifen per my onc. too.

I thought I read somewhere that ILC has a tendency to be multi-focal; this one definitely hid from me...while my PET scan was clear in October, I am terrified about being held hostage that something else won't be caught further down the road with exams, mammos, etc.

Thoughts/encouragement?  

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen to arimidex, BMX/immed recon 7/3/13 "God supposedly gives us only what we can handle. God must think I'm a badass."

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Jan 7, 2012 09:16AM dlb823 wrote:

Claire, just a couple of thoughts...  First, I think you have to look at the 6 positive nodes as having done their job to keep the bc from having gone any further.  Yes, it obviously knows how to travel. But you're doing chemo to address that, so maybe focus on it being a good thing that those 6 nodes caught everything they did from going any further.

I also had ILC, and my sister had a 2nd bc & 2nd mx 8 years after her first.  So I know it can happen.  But with the encouragement and support of my BS @ UCLA, after a totally clear MRI, I opted for a UMX.  And now I will have a followup MRIs every other year.  My BS felt my chances of developing a contralateral bc wasn't significantly higher enough to merit a BMX, and weighing all the pros & cons, I'm glad I kept my "good" breast for now.  But it's a very personal choice. Others in our situation have decided on a BMX because future worry and screening was a more pressing issue for them than keeping some nipple sensation, which was my preference.

The one thing I would want explained to me if I was in your situation is the Grade 1 vs. the 6 positive nodes.  That almost sounds like a contradiction, at least to my thinking.   Deanna

"The soul would have no rainbow if the eyes had no tears" Native American proverb

Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-Dx 1/3/2014, Stage IV
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Jan 7, 2012 01:47PM claireinaz wrote:

Deanna--all I know is that the pathology report shows grade 1.  I can't think why that would be a mistake. I also had the team at MD Anderson review my pathology since I thought I might be going there for chemo too, and they didn't say anything was wrong.

Maybe micro-mets in nodes?  Now I'm doubting the pathology report and I had been relieved that it showed grade 1 when it was done in Oct.

Anyway, I'll just see what the team at Anderson says about BMX etc.  I guess I can't solve anything right now.

C

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen to arimidex, BMX/immed recon 7/3/13 "God supposedly gives us only what we can handle. God must think I'm a badass."

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Jan 7, 2012 01:58PM claireinaz wrote:

I think I'll have to stay off this discussion board for a while. I'm now more fearful than ever. I was simply looking for some encouragement with positive lymph nodes--now my stomach is in knots with the doubt about the pathology report that I can easily read that says "grade I". 

Sometimes too much talk and anecdotal info is just that: too much.

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen to arimidex, BMX/immed recon 7/3/13 "God supposedly gives us only what we can handle. God must think I'm a badass."

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Jan 7, 2012 03:03PM dlb823 wrote:

Oh, Claire, I'm sorry.  If you have been seen @ MD Anderson, by all means they know infinitely more about your dx & pathology than I do.  Please ignore my comment.  It was just a question, and since my bc is Grade 3, it never occured to me that it would upset you the way it obviously has.   Deanna

"The soul would have no rainbow if the eyes had no tears" Native American proverb

Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2-Dx 1/3/2014, Stage IV
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Jan 7, 2012 07:47PM, edited Jan 7, 2012 07:48PM by Racy

claireinaz, I have seen other ladies on this site with grade 1 and lymph node involvement. I'm sure your pathology report is correct. BC is so unpredictable; there is no guaranteed way that a cancer with particular characteristics will behave.

All we can really do is take the available, recommended treatments, follow the lifestyle advice to reduce the risk of recurrence, keep our follow up appointments, report any new symptoms and hope and pray for the best.

I'm sorry you are feeling not so optimistic just now. We all have days when we feel less hopeful. If those feelings persist, medication and counselling can help a lot.

I know there are long term survivors; I think SherriG is one. They have posted on other threads so hopefully they will see your post and reply here too.

May you feel more hopeful tomorrow.

Dx 2010, ILC, 2cm, Stage IIa, Grade 3, 0/22 nodes, ER+/PR+, HER2-
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Jan 8, 2012 09:11AM flopsy wrote:

I am Stage 3A.   I had a 3.5 ILC tumor and 5 of 7 nodes were positive.   The MRI before surgery did not show any problems in other breast but I still opted for BMX because of original diagnosis and lobular being multifocal a lot of times.  After surgery the pathologist found 2 precancers  in the other breast so it turned out I made the right decision.  

It is a difficult decision to make about surgery, treatments, rads, pre test and post test.   It is good to gather all info you can and make the best decision that you can for yourself.   We all are different ,no two diagnosis are identical and our bodies respond differently to things. 

I liked the idea of being flat all the way across because I have been very large breasted and I am enjoying not having to tote them around.   I have not had recon and have no interest in that and my DH is fine with that.   I wanted to conserve my health to fight the cancer instead of wearing it down with more surgery, but that was just my personal decision.   I could always opt to do recon later but I won't.

flopsy

Dx 5/3/2010, ILC, 3cm, Stage IIIa, Grade 1, 5/7 nodes, ER+/PR+, HER2-Surgery 05/15/2010 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 06/25/2010 Adriamycin, CytoxanRadiation Therapy 09/08/2010 ExternalHormonal Therapy 09/22/2010 Femara
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Jan 8, 2012 02:24PM karen1956 wrote:

I will be 6 years from Dx on 2/3.....stage 3, positive nodes, breast full of cancer....bilat, chemo, rads, ooph and AI's for 3 1/2 years (gave up early due to side effects)...I see my onc again in late February....I'm on a 6 month schedule (finally)!!! 

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,

Dx 2/2/2006, ILC, Stage IIIa, Grade 1, 8/12 nodes, ER+/PR+, HER2-Surgery 03/01/2006 Mastectomy (Right); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Prophylactic Mastectomy (Left); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/22/2006 Adriamycin, Cytoxan, TaxotereRadiation Therapy 07/27/2006 ExternalSurgery 10/19/2006 Prophylactic Ovary Removal (Both)
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Jan 8, 2012 03:10PM Gitane wrote:

claireinaz,  I am 6 and a half years out from diagnosis.  I'm still doing fine.  I was very, very down during treatment and after.  The drugs, surgeries, etc. mess with our minds.  It is important to keep in mind that you can't be objective, your mind is working too hard trying to cope. Be hopeful! I am so much in a better place now!  Holding you hand through cyber space,  G.

Dx 8/18/05, Pleomorphic ILC, multifocal, multicentric, G2, 1/9 nodes positive, OncotypeDX 23, ER+ PR- Her2-

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Jan 8, 2012 03:29PM mskassie wrote:

Claire - the grade 1 means it is NOT very aggressive, which is a very good thing!  [grade & stage are two separate things]  That is the BEST grade there is with cancer.  The fact that some of your lymph nodes show cancer is scary, but better to think about is the number of nodes that did NOT have cancer and the fact that none of the affected nodes where in more 'critical' locations.  Like Deanna said, your nodes did their job!  Medically, your doctors are doing the right thing and so are you.  What you decide to do BMX wise is certainly your decision, do what feels right to YOU. My ILC is only in my left breast, but I've opted for the BMX myself.  Granted no one is ever happy about a bc diagnosis, but once we've got it, we take great pride in the small victories and positive steps along the way.  You have many of those, celebrate your progress.  There is no signs of mets anywhere beyond those few nodes, the chemo is going to take care of any "strays cells" that might be there [there might not even be any either, you never know, just always best to be safe]  My dear sister, you are going to be just fine with a long beautiful life ahead of you!

Dx 10/28/2011, IDC, 3cm, Stage IIb, Grade 2, 2/2 nodes, ER+/PR+, HER2-Dx 10/28/2011, ILC, 3cm, Stage IIb, Grade 2, 2/2 nodes, ER+/PR+, HER2-Surgery 01/31/2012 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left)