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Topic: ILC (pre-treatment)

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

Posted on: Apr 25, 2008 08:19AM

marykfo wrote:

Hi. I'm 75 yrs old, no history of breast cancer,just diagnosed w/ILC. Am very confused.Family doctor no help-he just referred me to surgeon. Is it common for FIRST option to be w/surgeon? Or should family DR have referred me to oncologist? OR? I'm confused about this medical protocol. All this based upon biopsy Apr 11-08. Will MRI or CT scan positively identify size of mass?

Previous symptoms: night sweats, itching of nipples. Mass easily felt and seems to be growing.

Would appreciate some guidance. Thanks.  Mary S.

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Apr 25, 2008 08:50AM - edited Apr 25, 2008 08:53AM by sunrizes2

Hi Mary

In my opinion, absolutely, have a second opinion and a third if thats what makes you feel secure.  Get all the information you need.  Knowledge is power.

Best of luck to you


lil ole me Dx 11/7/2007, ILC, 3cm, Stage IV, 0/25 nodes, mets, ER+, HER2-
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Apr 25, 2008 08:53AM nash wrote:

Hi, Mary. Some women see the surgeon first, others see the oncologist first. The advantage of seeing the surgeon first is that you can go to the oncologist with the surgical path report and know definately what you are dealing with. I saw the onc first, but didn't have a game plan with her until after I was done with surgery.

The surgeon should order a breast MRI to get a better idea of the size of the tumor and to check for other masses in both breasts. One note--MRI can overstate the tumor size (mine did), but the surgeon should also have a good idea of tumor size just by feeling it.

The oncologist will probably order a chest/abdominal CT and a bone scan. S/he will also decide if you need chemo or if you can be treated with hormonal therapy. Most ILC is hormone receptor positive and should respond well to HT.  Since you're post-menopausal, you'd be on an aromotase inhibitor (AI) like Femara or Arimidex.

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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Apr 25, 2008 09:00AM - edited Apr 25, 2008 09:03AM by LindaLou53

Hi Mary,

Sorry you have to deal with this.  If it were me I would get an appointment with a specialized breast cancer treatment center where the surgical, medical and radiological oncologists all work together as a team and review a patient's history together when making treatment decisions.

It is true that for many of us after initial diagnosis from a biopsy, will see the surgeon to discuss removal of the tumor, but there are many other factors to consider such as tumor size, tumor type, patient age etc. which can determine whether or not surgery is recommended as the first phase of treatment.

That being said, I believe for many women in your age group and particularly with Invasive Lobular Cancer, chemotherapy is much less likely to be used except in situations of known locally advanced growth with nodal involvement or possibly in the case of a hormonally negative ILC, which is rare.

Detecting tumor size and nodal involvement is not a perfect science with any of the scanning techniques, but I do believe that MRI may be more reliable in the case of ILC.  Many women's ILC tumors are never picked up by standard mammogram or ultrasound, but a MRI can pick up the tumor more reliably.  Size is often over-estimated or under-estimated by scans, however, and nothing short of surgical removal will be totally acurate.

It is so good that you are asking these questions now, so early on in the process.  I would definitely want to set up an appointment with a medical oncologist as my first step to discuss the specifics of how she would envision your treatment plan to be, based on what they currently know about your tumor.  Things may always change after knowing for sure if there is any nodal involvement, actual tumor size and hormonal status, but at least she can give you a general feeling for what is most likely to be your treatment plan.  Discuss with the oncologist which scanning methods she would prefer to gain as much accurate information as possible prior to any surgical intervention. 

At that point, make sure you see a surgeon who specializes in breast oncology.  You do not want to go to a general surgeon who only sees a breast cancer patient "on occasion".  If you have a breast cancer center in your area, finding a medical oncologist there will give you access to all their resources including the surgeons and radiologists who specialize in breast care.

Do not let anyone make you feel rushed during this very important decision making process.  Taking a few more weeks or even a couple months to fully explore your options will be well worth it.  Once you have a treatment plan in place with a team of professionals you feel you can comfortably communicate with, you will be well on the road to recovery!

Let us know how it goes.  Continue to ask questions as they arise and you will find tons of good information here on these forums.

Life is not measured by how many breaths we take...but by the moments that take our breath away! ...I am a 14/9 yr survivor of 2 Primary BCs, 23/23 Positive Nodes (Zometa x 5 years) Started Paloma-3 Clinical Trial 4-14-14 Dx 7/14/2000, IDC, 1cm, Stage IIA, Grade 1, 2/7 nodes, ER+/PR+, HER2- Surgery 8/11/2000 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 8/30/2000 AC + T (Taxol) Radiation Therapy 2/26/2001 Breast, Lymph nodes Hormonal Therapy 5/10/2001 Dx 11/21/2005, ILC, 5cm, Stage IIIC, Grade 1, 23/23 nodes, ER+/PR-, HER2- Surgery 12/5/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy 12/23/2005 Taxotere (docetaxel), Xeloda (capecitabine) Hormonal Therapy 4/7/2006 Aromasin (exemestane) Radiation Therapy 4/7/2006 Breast, Lymph nodes Dx 3/21/2014, ILC, Stage IV, mets, ER+/PR-, HER2- Hormonal Therapy 4/14/2014 Faslodex (fulvestrant)
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Apr 25, 2008 02:50PM wallycat wrote:

You've already gotten some good info...

I was diagnosed via MRI guided biopsy (ultrasound/mammogram did not pick up my mass).

Once diagnosed, I met with a surgeon first.  I adore my surgeon and I knew he had much, much experience with breast cancer surgeries.  I didn't see an oncologist till a month or so after my surgery.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012
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Apr 26, 2008 07:11AM gracejon wrote:

i don't think doctor referrals are in any special order.  I do know that course of treatment over the almost four years since my diagnosis have changed dramatically.  In some instances surgery is delayed and hormonal therapies and medicines theapies are given before surgery in more numbers than ever before.  I also suspect that the day is coming for some tumors to be treated by medicine alone if this is not even an option already.  I do think that a good oncology opinion prior to any surgery is an absolute necessity these days.  I do think surgeons in general, since they need to sell themselves more often, more personable than a droll medical oncologist.  I would try to get both that specialize in breast only and not a doctor that does it all if possible.  My rationale for that is again therapies are changing almost daily and I think the breast specialists keep up with it cause it is only what they do.

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Jun 29, 2008 11:41AM - edited Jun 29, 2008 11:44AM by AdrienneE

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Jun 29, 2008 11:46AM AdrienneE wrote:

Hi.  I was just diagnosed with ILC a few weeks ago.  Saw a local surgeon first (right now they have me scheduled for a lumpectomy the week of July 22) and he has me scheduled for an MRI of both breasts on Monday.  Every question I ask about tumor size, grade, stage, receptors, etc., is met with "We'll know after surgery".  Is that typical?  Is it true that they can't tell me anything until after surgery? 

My insurance will pay for me to go to M. D. Anderson in Houston (a cancer center). This would mean a trip out of state and I would probably stay there through the treatments.  I have a couple of dear friends there, so wouldn't be alone.  I live a few hours away from Stanford University (in CA), and my primary care doc wants me to go there; he says bc is pretty routine as cancers go and that the treatment protocols are well known and that he doesn't think I need the cancer center, that the treatments will be pretty much the same at either place, or if I am treated here at home. For those of you who have been through this, what would you suggest?  I find it hard to think straight and make a good decision at this point.  I seem to have too much info...and not enough knowledge.

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Jun 29, 2008 08:19PM Rovergirl wrote:

AdrienneE -

I'm curious on how you were diagnosed with ILC.  The only way to determine ILC is with a biopsy.  From the biopsy a pathology report is generated that states the type of cancer, receptors, etc.  My tumor size wasn't determined until I had a MRI as the mass did not show up on a mammo or ultrasound.  My doctor thought I had Lymphoma as my original pain was in my underarm but a lymphnode biopsy lead to the breast cancer diagnosis.

I live in a semi-rural area in Washington State and chose to seek treatment at the Seattle Cancer Care Alliance (SCCA) vs. my local area.  I am here to tell you all treatment is not created equal.  SCCA is cutting edge and all they deal with is cancer.  I relocated to Seattle and stayed with friends during the initial diagnosis, testing and and am currently getting treatment.  I feel I made the right decision to get treatment from SCCA.

It's hard to get specific information on your particular circumstances until you have the pathology report and know the size of the tumor.    Listen your instincts on where to get treatment, be assertive on getting the answers to your questions, get a second opinion if you feel it's needed.  Don't go with the flow, do what you gotta do to get the best care.  BC is serious stuff it's not "routine".


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