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Topic: New and Advice would be great!

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

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Posted on: Jul 25, 2008 11:26AM

Stark7 wrote:

   I'm a newbie, had a biopsy June 18th and have ILC, stage 1 and intermediate grade.  Had a lumpectomy on June 27 with negative lymph node and ER positive.   I'm 42, and I'm Stark7 because I have 5 children - ages from 17 to 3 yrs. old, plus me and my husband.  I live for my family, and that's the first thing I thought of when I found out I had cancer.

  I'm a Physical Education teacher;  I run, lift weights, do Tae Bo, walk, garden --- anything to keep me busy because I can't sit still.   But all the bran muffins, fruits and vegetables and all the miles I've ran couldn't keep this diagnosis from finding me.

  I've seen an Oncologist this week and he wants me to do chemo, then hormonal and radiation.  I need advice on if I really need chemo and results any of you may have.  I had an Oncotype DX test come back as insufficient findings, (very big blow - after waiting 2 weeks) - so my Oncologist is trying to submit a new biopsy from Pathology (if it hasn't already started to degenerate).

  I know life isn't the amount of breaths you take... It's the moments that take your breath away - And I know this has woke me up and I'm going to try and find as many 'take my breath away moments' as I can.     Thank you in advance for any support.

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Jul 25, 2008 01:47PM awb wrote:

I can't speak to chemo as I didn't have it, but my mom did have ILC with negative nodes--lumpectomy, radiation and tamoxifen--and is now a survivor of over 21 years without a recurrence. I hope hearing some good news will help to give you hope.

Anne

"I don't know what the future holds, but I know who holds the future" Dx 9/5/2003, LCIS, Stage 0, 0/0 nodes Surgery 9/16/2003 Lumpectomy: Right Hormonal Therapy 10/30/2003 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/5/2005 Prophylactic ovary removal Hormonal Therapy 2/28/2009 Evista (raloxifene)
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Jul 25, 2008 06:36PM - edited Jul 25, 2008 06:36PM by nash

Hi, Stark7. Welcome. Bummer that the Oncotype came back inconclusive--that's the first one I've heard of like that. Did they say why it was so? It would be good if you could get a score, b/c if it comes back very low, you'd probably be able to get away with just radiation and tamoxifen.

I'd suggest getting 2 or 3 opinions on the chemo. Being young, grade 2, in the absence of an oncotype score to help with the decision, they will probably all recommend chemo, especially if your tumor is over 1 cm.  There are different combos, though, some less harsh than others, and that's where it becomes useful to have several onc opinions on the matter.

 I was 38 at diagnosis, neg nodes, 2.7 cm tumor, oncotype 18, hormone positive, and 3 oncs recommended chemo for me. Two recommended ACx4 and one recommended TACx6. I made the decision to go with a middle of the road chemo, CAFx6.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Jul 25, 2008 11:19PM cheryl58 wrote:

Hi Stark7,

I was diagnosed a little over  two years ago at the age of 47.  I had 7 mm tumor, bilateral mast, AC x4, and am now on tamoxifen.  My tumor was ER+/PR++, Her2-.  When I first met with my oncologist, I told her I wanted to be as aggressive as possible; thus, the bilateral mast and the chemo.  Chemo was tough but not unbearable.  I had four rounds of AC, put a great big X through each day that I had one and counted them down.  I didn't feel the greatest for 3-4 days afterwards but then would start coming around again.  I hated losing my hair but it grew back.  I guess what I am trying to say is that I want to see my kids settled into their own lives (and possibly even see my grandchildren someday!)  I know in my heart that I did everything that was offered to me at the time so that if and when this beast ever strikes again, I will have no regrets about my treatment decisions.

My best advice would be to do what your "gut" tells you.  I learned this lesson about 10 years ago and have always used "that gut instinct" now when I need to make huge decisions.  Take the advice and recommendations from the doctors, learn as much as you can, and then make your decision.  You will know what is right for you. 

Many hugs and prayers coming your way!

Cheryl

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Jul 25, 2008 11:34PM Gitane wrote:

Hi, Stark7,  Chances are you will get a valid Oncotype DX when they submit another sample.  They may have not had enough tumor cells in the first one.  Grade 2 is probably the reason they are recommending chemo.  My Oncotype DX was 23, but I didn't know that when I got chemo.  I got it because I had a big tumor, grade 2, and the cells were pleomorphic-lobular.  There were also tiny deposits of tumor in my lymph nodes.  I had the chemo before I had surgery, so I was able to see through the pre and post MRIs that the tumor cells were responding.  I had AC x 6.  I was diagnosed in August of '05.  Hope this is the kind of info you wanted.  I agree with Nash that a 2nd opinion is helpful in making the decision about chemo.   Gentle hugs to you as you go forward with whatever you decide to do.  

Gitane 

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