ILC-Specific Questions in Making Treatment Decision

Girl53

Ladies: Am just starting to read more about the subtype of BC I have (along with LCIS and family history) and wondering how this will affect treatment decision....rads/Tamoxifen/frequent screening, or PBM. Can you tell me if it's correct that:

*ILC is sometimes to often harder to see on mammogram? MRI/ultrasound better?

*ILC can be harder to detect manually and on mammo if you have dense or heterogeneously dense breast tissue?

*ILC is often multifocal and/or tends to spread or pop up on both sides more often that other BC types?

*Data show Tamoxifen isn't as effective for ILC as for IDC? What about aromatase inhibitors for ILC?

Have these factors -- or other ILC-related factors -- played heavily in the treatment decision of other ILC ladies here?

Lojo

I *think* yes on all of them. I can say from experience that I had several clean mammograms immediately before and then even after the lump was palpable by my ob/gyn. The breast surgeon had a hard time seeing it on ultrasound, but it showed up clearly on MRI. I had dense breast tissue - always lumpy. I had two foci, but they were very close together.

In terms of tamoxifen vs an AI - the data has been looked at for postmenopausal women (http://www.ascopost.com/ViewNews.aspx?nid=31718) and it does seem to be better to take an AI based on that study, but the authors note that the data set is still relatively small and there was variation and so larger data sets are needed before routine recommendations can be made. There is not a lot of good data on what to do if you're premenopausal (like me). I'm taking tamoxifen, and will under current guidelines, for 10 yrs total unless I hit menopause before then (which I might. I'm 43 now, and into my second year on tamox). There are recent studies and ongoing (?) to see whether premenopausal women will benefit from ovarian suppression (surgical or chemical) plus AI. It seems like the preliminary data suggests it benefits a subset of premeno women (those who needed chemo), but I don't think there was sufficient data to tease out information on ILC vs IDC in that study. (But, someone jump in if I've missed something).

I don't know if there's clear data on whether there's a higher risk of contralateral ILC popping up later (compared to IDC).

So... I had a BMX because of family history (mom) and the difficulty they had detecting it in the first place and my unwillingness to do a 6 month alternating mammogram/ultrasound and MRI to check the remaining breast, if I'd kept it (because of my propensity to freak out). The tumor was large enough and positioned so that I wasn't eligible for a lumpectomy (not much there to begin with either). I ended up also having radiation because the margins were close. No chemo, as the Oncotype score was low.

Although I had a BMX, having ILC in no way dictates a prophylactic MX on your unaffected side, and I would be surprised if a doctor suggests it (mine did not - I raised the issue, but he was not dismissive of it). I did not have reconstruction.

After DX I also had BRCA1/2 testing because of the family history but I'm negative (at least for those genes). I haven't done a more extensive set of genetic tests.

Good luck.

Girl53

Lojo: Thanks for your response. I'm primarily considering the BMX due to LCIS -- which I understand confers risk on both sides -- and strong family history (mother, grandmother, great aunts, cousins with BC...and two cousins with ovarian cancer). Was just wondering if some of the above-listed factors, for some women, would prompt toward a PBM. BS says this would not be an unreasonable option for me.

Two questions: ) Have heard of oncotype but don't really know what it is or whether it's a score I have or how to get it. 2) Why do women take Tamoxifen once they have had PBX? Is it because of the very small remaining risk of recurrence?

Girl53

One more thing....my ILC is 2mm...very small, comparatively, I think. My mammogram callback was for clustered microcalcs with no visible mass. Have read that 75 percent of ILCs aren't associated with microcalcs, so I guess I was lucky I had them? Otherwise, ILC might have gone undetected?

Lillibelle

Mine was IMPOSSIBLE to see on mammogram. I JUST now went for a f/u ultrasound at the same imaging place that gave me a total "everything is awesome!" report on August 27. They were a little weird to me, honestly, at first the tech said she'd come tell me my results and then she came back, closed the door and said due to my history they would only send to doctor.

JohnSmith

Most of your questions can be answered in the "Lobular series" of www.Breast-Cancer-Research.com, here:
This is a page that everyone should bookmark, assuming you want to be up to date on the latest Lobular research.
I did some of the homework for you, by parsing out a portion of the answers below.

Question 1, 2, & 3:
1. July 2015 Article: "Lobular breast cancer series: imaging"
excerpt from article: "Studies have repeatedly shown that MRI is superior to conventional imaging, not only in terms of its increased sensitivity for detecting ILC, but also for the detection of ipsilateral and contralateral disease" [30]–[32].
Citation sources:
30: Abstract: "Evaluating the impact of preoperative breast magnetic resonance imaging on the surgical management of newly diagnosed breast cancers."
31: Abstract: "Accuracy and surgical impact of magnetic resonance imaging in breast cancer staging: systematic review and meta-analysis in detection of multifocal and multicentric cancer."
32: Abstract: "MR imaging of the ipsilateral breast in women with percutaneously proven breast cancer".

Question 4:
1. July 2015 Article: "Lobular breast cancer - the most common special subtype or a most special common subtype?"
excerpt from article: "A further unresolved topic regarding invasive lobular breast cancer is the contradiction between the very high proportion of estrogen receptor (ER)-positive lobular breast cancer specimens (more than 90 % depending on the study) and the comparably low efficiency of anti-estrogen therapy in this patient cohort compared with invasive ductal breast cancer with a much lower proportion of ER-positive specimens. This is not properly understood on the molecular level, but is of real importance in clinics."

2. 2014 Article: "Breast Cancer Subtype May Benefit From Personalized Treatment Approach, UPCI Finds"
excerpt from article: "Patients with ILC are typically treated through surgical removal of the cancer, followed by chemo or hormone therapy or both, usually with Tamoxifen or AIs, the same as patients with IDC.
However, recent analyses have shown that a subset of patients with Lobular carcinoma receive less benefit from adjuvant Tamoxifen than patients with Ductal carcinoma," said senior author Steffi Oesterreich, Ph.D., professor at UPCI, and director of education at the Women's Cancer Research Center. "Our study, the largest of its kind, indicates an issue with the estrogen receptors inside lobular carcinoma cells and points to a potential target for drug therapy in future clinical trials, which we are developing."

For these reasons above and many others, I've said this before and will say it again.
- We need more ILC advocacy.
- We need participants for the first ever ILC Clinical Trial officially launched in August 2015.
- We need ILC clinical trials designed for the Stage 4 cohort.
- We need to establish a global tumor bank with ILC tissues allowing researchers to scrutinize the genomic and molecular characteristics. Further, we need U.S. based hospitals and medical schools to stop placing surgically removed tumors in paraffin blocks (an archaic method) and instead have them "snap-frozen", essentially frozen in liquid nitrogen, which provides superior tissue integrity. Many folks will be denied future clinical trial participation, since newer trials (including NCI's "MATCH" as well as numerous Immunotherapy trials) demand that tissues NOT originate from formalin (essentially formaldehyde) and stored in paraffin.
Note: This tissue bank issue is actually a problem with ALL cancers, not just ILC or breast cancer.

Lojo

To answer specifically the question about why take tamoxifen or an AI after a BMX...yes, it's because there is ALWAYS a risk of recurrence no matter how small the cancer. Did you have a sentinel lymph node biopsy?

The Oncotype test is a 21 gene expression test -- it gives you a recurrence risk (%) based on which genes are turned on in your tumor. Certain genes being on (or off) raise the risk for recurrence. Ask your doc about it. You might not have a large enough tumor sample, but you might. You should also ask to see the rest of your pathology -- and mitotic score in particular ( a measure of how fast the cells are dividing).

Meow13

Your tumor might be too small at 2 mm for oncodx or other testing.

Girl53

All: Thanks so much for your responses. John, your passion and dedication are remarkable...your wife, and this community, are lucky to have you. Will read through info carefully. Lo, tx for oncotype info...I will ask my doc early next week about it, and for additional path data. And no SNB yet, but will be scheduled soon. Meow, I'm hoping they won't find more on MRI so I'll have larger tissue sample Lilli, so sorry you had to be given wrong information. At least we are in this together.

How very hard to try to make a treatment decision, isn't it? I so want to be safe and dramatically reduce the risk. I also don't want to go through a major surgery that may not be necessary.

John, have wondered so often after my first husband died of his brain tumor -- a rare type -- if there is a tissue bank for brain cancers. I remember the chief neuro-oncologist at the National Institutes of Health saying to me, "If anyone tells you they understand this tumor, don't believe them."

Anonymous

John---I would add to that list that we also need more research / study into LCIS---it's risks, treatment options, etc. There is still so much we don't know about it, and those of us who have it are living in the frustrating "gray area". After having been recommended to have genetic testing by my oncologist, going thru all the paperwork, hassles with the insurance company----genetic counselor says I don't meet the criteria and insurance won't pay (even though she thinks there are reasons to test due to my family history).

anne

ShetlandPony

Girl53, are your stats correct, that your ILC is PR negative? (Classic ILC is PR positive.) I understand that PR negative may indicate a tumor more likely to be resistant to tamoxifen. Also, we know that aromatase inhibitors are somewhat more effective than tamoxifen in general, but it appears that the difference in effectiveness between tamoxifen and an AI is greater for ILC. For these reasons and your family history, I would consider going on an AI rather than tamoxifen, no matter what surgery is chosen.

http://www.breastcancer.org/research-news/20121217-5

vlnrph

AWB, when was that advice received from your genetic counselor? If it was prior to a couple years ago, you may want to revisit the question. There has been an explosion in the field of mutation assessment recently and, with family history, I would certainly wonder whether a hereditary factor is contributing. Perhaps a relative who has had a firm diagnosis would be the best one to test first. There is also much to consider beyond the basic BRCA 1/2.

Anonymous

vinrph---my genetic counseling session was yesterday. She said there is most likely a hereditary component going on somewhere, but my mom would have to be the one tested, as she had ILC. My insurance company won't cover it for me unless I have at least DCIS or invasive bc, (not "just LCIS and family history"). She said it is even possible that my mom could be tested for both BRCA and Lynch syndrome, since she had both bc and colon ca, my grandmother had colon ca, and my greatgrandmother had bc (all on mom's side of the family). She explained that colon ca is not in the bc syndrome (BRCA is usually connected with bc, ovarian ca, pancreatic ca, prostate ca, melanoma); yet bc is in the colon ca syndrome. (Lynch).

Anne

614

Dear JonSmith:

You are phenomenal with your research.  Thank you.

I was diagnosed with pleomorphic invasive lobular carcinoma, pleomorphic lobular carcinoma in situ in 2 different lumps, and invasive tubular carcinoma, all in my left breast, in the summer of 2014.  I finished my radiation in October 2014.  I had an oophorectomy so that I could take Arimidex/Anastrazole because I was diagnosed premenopausally.  At my 6 month check up, 2 suspicious areas were found in the same breast where I had the malignancies and the radiation tx.  One lump was biopsied and found to be benign.  I now have large hematoma from the MRI guided biopsy.  The other suspicious area is a "1.8 cm linear non-mass enhancement with rapid washin washout kinetics", according to my MRI.

Do you know (or can you find out) anything about linear non-mass enhancements with rapid washin washout kinetics?  I have found very little information on this.  This area could not be biopsied in May 2015 so I am on a 6 month wait and watch protocol.  I will know more in November 2015.

Thanks for your anticipated help.  I appreciate it.

Sincerely,

614

Girl53

Shetland: Thanks for noting PR- ILC might be resistant to Tamoxifen...I didn't know this. And my path report does say PR-.

I'm still so new to this. I also didn't know that someone with my dx could likely be given an AI even if I chose a PBM. Why is this?

momand2kids

Hi

sorry you find yourself here--I am another ILC-nothing showed up on mammogram then 6 months later there it is in a lump! lumpectomy, chemo and radiation--went straight to lupron (I was pre-meno) and an AI…. What kind of surgery you have does not matter with the hormonal drugs-it is about the biology of the tumor…. for ER+ there is a lot of evidence that tamoxifen/AI's are effective--although in the ILC discussion, some feel AI's are better-- your oncologist will be a good resource for that.

My onc, a leading researcher in the field, did not think that ILC has more of a chance to come back in the other breast… I chose to go with that!!!! I was ER+PR+ then my oncotype came back suggesting I was slightly PR---onc says you go with path report--

I am just about 7 years out-doing just fine-- I do have an MRI every other year now just to be sure since I don't really trust the mammogram technology (although I still have one every year)….

good luck!

Annette_U

AWB: my mother had dcis-lumpectomy at 60, then ovarian cancer- hysterectomy at 67, then bladder cancer- spot treated at 72. She is alive at 78 and is getting macular degeneration shots and cancer clear now. I tested negAtive for BRCA and daughter at 19 had pre-cancerous polyps removed and in 2013 tested negative for lynch at age 22. There are newer discovered markers associated with ILC. John will know which are currently being researched. Most ILC is HER 2 neg and is not BRCA positive. Don't try to over diagnose, there are so many study results out there with results that will not apply to your exact situation.

ShetlandPony

Girl53, there are two kinds of bc treatments. The first one is local treatment, which is designed to get rid of the cancer in the breast and close by. For this you could have mastectomy or lumpectomy plus radiation. The second kind of treatment is systemic treatment, which is designed to kill any cancer cells that may have escaped the breast (through lymph or blood) and could take up residence in bones, liver, etc. For this you could have an anti-estrogen treatment like the aromatase inhibitor. May I ask if you are you post-menopausal?

(P.S. It looks like a subset of ILC is resistant to tamoxifen even if it is PR+. And I believe PR- is less likely to respond to tamoxifen whether it is IDC or ILC.)

Iris55

I found my Invasive Lobular Cancer in Dec 2014. Top of left breast felt like a band of 1/4" wide duct tape, not lump or stone. GYN examined left and went to right. I asked her to feel left again, and she felt it after I explained what I felt.

Biopsy said cancer in breast and nodes.

Chemo. Took 3 out of 4 and 4 of 12 in AC then T protocol. Chemo too toxic to me.

MRI showed cancer shrank to invisible in breast and nodes! Doctors are happy--no cancer!

Surgeon and I discussed lumpectomy with nodes vs mastectomy with nodes.

We chose lumpectomy.

Lumpectomy results showed cancer in margins and nodes.

Had one sided mastectomy with nodes removed

Mastectomy showed cancer spread throughout breast in a spider web-like manner and started another tumor.

Cancer got out of nodes and into surrounding tissue and into circulating systems.

Next is radiation.

I have learned that Invasive Lobular Carcinoma is very hard to detect, which is why is shows at a later stage.

It is not easily felt.

Even the highly revered MRI cannot see it. (nor can any of the other similar tests)

I asked, and if it goes to remote places in my body, it will have its "invisibility" factor until symptoms appear.

My surgeon said this cancer does not go to other breast, rather spreads elsewhere. She asked Cancer Board for me and double mastectomy was refused.

My oncologist and surgeon agree that not breastfeeding, use of antiperspirants, wearing bra, and family history are not the strong predictors they were once thought to be. I breastfed, used natural deodorants, seldom bra, no history, yet diagnosed at age 60.

We are not Warriors, we endure, we use sometime macabre humor, and we look at each new thing as a new adventure. Cancer is not under our control, and I do not like that! This stuff is scary

Cast all your cares on Him, for He cares for you. Your Heavenly Father will be with you when you ask.

I send my love,

Girl53

Shetland: It has been one month short of a year since my last period. Do I probably qualify for an AI now? Will see onc on Monday morning. I am scared and upset.

Do they give systemic therapy -- chemo or endocrine therapy -- to node-negative patients? Does it depend on oncotype? I don't have this number yet.

I am so hoping that I can live with side effects of AI. Maybe there's no choice?

phoebe58

hi Iris [sorry for that roller coaster you have endured] and everyone, it has been helpful for me to read that other women have been caught by surprise with the size of their ILC tumour.... at first I had been mad at myself for missing it for so long

I was diagnosed with ILC last fall, and started with chemo [large lump 4-5 cm in smallish breast needed to shrink first] but new oncologist switched me over to Letrozole to shrink it better, which it did.......down to 2-3cm apparently, though when pathology sized it up last month it measured just over 5 cm though pancake thin, so I too am an example of how well this sneaky sob hides from tests. Currently, I just completed bilateral mastectomy with immediate diep reconstruction a month ago and am healing well. A few micro-specks in first sentinel node, but next two were clear.

What did really shock me in the path report, {I chose bilateral as I heard it may grow eventually in other breast and didn't want to do this all over again}, it turned out it was already there in several smaller 'in situ' focal areas [in a pre-malignant state], in the so called 'good breast'....... so I was very relieved to have done both. So while it did not technically 'spread' to other breast, new cancers of the same type in an earlier stage had developed there. My Dr said it would take up to 10 years probably for that side to be detectable........ I also plan to be staying on the Letrozole for 5-10 years; my tumour was highly E+, and I am 58 and post-menopausal.

My history: I had an early period at 11, had been on birth control for many years, no kids so no breastfeeding, and a few years in early fifties on bioidentical estrogen and progesterone to help with severe menopausal hot flashes etc........ otherwise a healthy lifestyle. I personally suspect that all that extra hormone was a big factor for jump-starting my ILC, as those are the only checkboxes that apply to me. Best wishes to you all, and thank you for sharing.

phoebe58

hi girl53 -- crossed paths.... re your AI question: I was put on Letrozole while assumed to be node negative,though my tumour size was larger than yours [and they always said a few may have snuck out into the world], and I wanted to reassure you that am tolerating it quite well. A few mild hot flashes had returned initially [now gone] and my joints [fingers, hips] are a bit achy, but that's about it. They will do a bone density test on you and mine had been very good. I do take vitamin D and calcium to help minimize the bone loss and try to stay active. good luck Monday

JohnSmith

Girl53
Your biopsies provide clues to the biology of your BC (Type, Grade, ER, PR, HER2, Ki-67, etc), but it's your FINAL pathology after surgery that will ultimately determine your course of treatment. The surgery will determine the status of your nodes and size of the tumor. These two factors combined with your Oncotype score are three of the major factors that determine whether chemo is warranted or not. See this link for more clarification: Who Gets Chemotherapy?

AI's and Tamoxifen (Tam) are prescribed for the hormone positive (HR+) cohort. Since you're HR+, you'll get Endocrine therapy (aka: hormone therapy)... either an AI (if postM), or Tam (if preM). To elaborate on what ShetlandPony wrote, they prescribe these drugs to deal with rogue cancer cells that may have escaped the primary tumor and are floating around your body. Your node status is often a primary factor to determine the chance that these cells have escaped, but they can also escape via blood. Science has not advanced enough to invent a clinically validated blood test to measure how many cells have escaped (although they are getting closer). As time passes, you'll hear the term "Liquid biopsies" which measure circulating tumor cells (CTC's), but that's not important.
So, whether or not your node negative (as determined by surgery, which includes the SNB), they will still recommend endocrine therapy, again, either an AI or Tam.

Also, in terms of LCIS (I saw your comment on a different thread), like your surgeon said, it's a "moot point".
Think of cancer as a process. LCIS is a "marker" that measures ones risk of getting invasive cancer. LCIS is just a step in the process of potentially getting BC. LCIS is not "invasive" cancer. Once the cancer breaks outside of the cell walls, it is then considered "invasive". At that point, you have moved beyond LCIS and now re-classified as having "invasive carcinoma", in your case... "ILC". So, when making treatment decisions, LCIS is not your concern.

I know it's super confusing in the beginning. Hopefully, you have access to a good 'nurse navigator'. Otherwise, grill your oncologist on Monday. Don't forget to record the conversation with your smart phone. That will give you opportunity to review the conversation later, at your own pace, and allow for follow-up questions.

Make a bit more sense?

ShetlandPony

Girl53, I believe a woman is considered post-menopausal after a year without a period (in the absence of any chemo or hormonal drugs). It will be a simple thing to check your hormone levels to confirm that you are post-menopausal, which I would request since it has been only eleven months and your choice of hormone therapy is dependent on your menopausal status. They can check your blood level of FSH (follicle stimulating hormone) and E2 (estradiol). You are at the scariest time for most of us, waiting for test results and a treatment plan. Sending hugs! Do something nice for yourself. Take a mental break if you can. (I like to get outside, dance, pet the cat, watch a comedy.) As phoebe indicated, aromatase inhibitors typically cause some stiffness and hot flashes, and I would add, maybe the need for a vaginal moisturizer and/or lubricant. Most of us do not have horrible side effects. Since you are already at or near menopause, I would think your body will not be too shocked by the anti-estrogen therapy. Write down your questions for Monday, and take someone with you if you can.

zinny

Hi all. New to this. I started out thinking I had DCIS, then bilateral DCIS, then ILC on the right at the time of my bilateral partial mastectomies. Sadly, some cells escaped into the nodes. My tumour mass was pretty big, but only 2.5 cm of it was the ILC.

Receptors are all favourable, waiting on oncotype. Was all ready for chemo, shocked that the best advice seems to be a Lupron-y drug and radiation. Given that my breast cells clearly want to not obey conventional rules, when we are all done, I'll be having BMX. Planning for recon. Interested in how many have had flaps - seems like a lot to heal, not sure the benefit ( other than a flat tummy.)

Girl53

John and Shetland: Thanks for such informative and encouraging replies. This first part of this journey is so hard and frightening. Shetland, am going to do something nice for myself tomorrow.

John, re: LCIS, I have read that it's clinically debated whether LCIS is a marker for future risk or a cancer precursor. Either way, if you have confirmed LCIS on one side, doesn't it signal continued risk contralaterally? Have read this in many places. Isn't this why some authoritative Web sites say that double mastectomy can be considered by LCIS women with a personal history of BC on one side...because treatment of the cancer on one side would still leave you with elevated risk on other side (even with systemic treatment)?

From NCI site: "However, doctors often discourage contralateral prophylactic mastectomy for women with cancer in one breast who do not meet the criteria of being at very high risk of developing a contralateral breast cancer." LCIS -- on either side -- is one of the criteria for high contralateral risk, I think...not just before dx of an invasive cancer, but after?

Epidemiology of Contralateral Breast Cancer:

http://cebp.aacrjournals.org/content/8/10/855.long

WebMD:

http://www.webmd.com/breast-cancer/guide/preventive-mastectomy?page=2#1

Cancernetwork (see paragraph #3):

http://www.cancernetwork.com/breast-cancer/impact-lobular-histology-breast-cancer-treatment

This is really confusing, and I'll ask onc about it and use digital recorder as you suggested, John. Thanks again, so much.

614

Dear Girl:

I was diagnosed pre-menopausally.  I started out with zoladex but then I had an oophorectomy so that I could be medically induced into menopause.  I am taking the AI - Arimidex/Anastrazole.  I have no side effects.  You may not have any side effects either.  The benefits outweight the risks in my opinion.

Good luck.  I hope everything goes well for you and I am sending you hugs and positive thoughts and wishes.

Anonymous

girl53---- the ILC is the primary focus of treament now (since that is the invasive cancer), but yes, the LCIS still does confer elevated risk of future invasive bc in the other breast. (the LCIS is much less serious, but it is still a concern in the whole picture of your situation.). If your found to be node negative, you would have the option of lumpectomy, radiation, and taking either tamox of an AI (if post meno). (that was my mom's situation--stage 2 ILC, negative nodes; she had lumpectomy, radiation and tamox and is a 29 year survivor with no recurrence!) If node positive, chemo would probably be indicated; I'm not sure how much that would affect the LCIS, you would have to ask your oncologist. Some women choose BPMs due to the elevated risk in both breasts with LCIS, but it doesn't mean you can't choose lumpectomy for your ILC; you most likely will have to take either tamox or an AI afterwards with either choice.

Anne

Girl53

Anne: Thank you...this is what I thought but wasn't sure I was understanding correctly. Am leaning toward CPM, due to ILC/LCIS/strong family history/dense tissue, and ILC reputation for being harder to detect on mammogram. And with my personal history with late husband, I'm not sure I can take the stress of so much uncertainty. Fortunately, I have wonderful husband who will support me no matter what I decide. And he's very logical and analytical...will help me hear what the oncologist says LOL.

Did I tell you what I found out about my father's family? He has no siblings, so this disease didn't show up in his generation in his family unit. But my paternal grandfather's sister died of BC at 52, and three of her four daughters got it, and more than one grandchild had it (including a daughter of her son). This is in addition to my mother and other maternal relatives, my paternal grandmother; and paternal grandmother's sister (and others). Even if not found BRCA positive, isn't this enough to worry a person toward CPM?

Hope your nephew's wedding was a fun and relaxing time, Anne. Thanks again.

Anonymous

girl--I totally get it. You do have a strong family history. Having had LCIS for so many years and having a mom that already had ILC, I would most likely have bilateral mastectomies if I were ever to develope invasive bc , but it's definitely a personal choice.

anne

phoebe58

geez.... got a call from my rad onc yesterday, as I had been in the 'grey zone' previously, and preferred to skip radiation and just do the Letrozole and healthy lifestyle. She had put my case forward to a province wide conference of experts and they met and re-examined everything yesterday....... including path results. I can't believe what she informed me. Both the initial local radiologist who did diagnosis of lobular ILC last fall from biopsy, which started every treatment decision, and then this Aug the pathologist [a resident fellow only apparently] in Vancouver who examined my breast bits and pieces post surgery also determined I had lobular ILC in right breast [one with the identified tumour] and also discovered LCIS in several spots in good left breast (which I had only done prohylactically)...... BUT here's the kicker: when it was reexamined this week by a third breast cancer specialist radiologist in Vancouver, he found I also had ductal........missed by the other two..... which may need to change my treatment plans going forward. Really??????

I had started with some chemo neaodjuvantly last fall/winter Taxol, and was supposed to do A/C until new med onc said it isn't too effective for lobular so swapped to hormonal therapy Letrozole to shrink it further, and then did bilateral mastectomy with immediate Diep reconstruction this summer and was planning to decline the radiation, but closely monitor..... and just move forward with my life and start to feel sorta normal again --getting stronger and just rejoined gym, and talked to my boss re return to work plan, which may be up in the air....... Now it's all a dog's breakfast. Sending me for lots more tests and appts, [which is good - more information] and they are recommending radiation now, and maybe doing a course of a different chemo.....:( really don't want lymphedema, and not thrilled about losing my hair again -- it's just getting cute. I know that is superficial but still............sigh Thanks for the vent.