Just Diagnosed-looking for clarification on ILC questions

doris7125

Just diagnosed April, had lumpectomy May 20 and looking at path report. I am either IIA or IIB (one of my questions!) ILC, 1/1 node positive. I am at anxiety point of waiting for oncatype report to come back and med onc appt. Sent questions to med onc and also will call surgeon back tomorrow but while I am waiting thought I would get some input from you amazing women. Originally thought tumor left breast was 8mm but turned out to be 1.8cm. Seems from what I read that this was probably due to their original guesstimate being wrong (dense breasts) vs. growing that fast in 3 weeks but that plus the node positive result from sentinal node biopsy during surgery definitely took the wind out of my sails. I want to do anything to kick cancer's butt but of course I am in limbo as to treatment recommendations until results of onca and appts. A couple of things making me anxietal:

Before I got a look at post op path report and was talking to surgeon, she said I was done with surgery. I didn't know all the ramifications of node positive but reading....

why would they only have taken 1 node and if it was positive, am I looking at axillary node diissection? Worried about increased risk of lymphedema - anyone dealing with that post surgeries? It's scaring me that they only took one node, why not more and don't understand implications of that...it wasn't microscopic - it's .5 cm and also to clarify (sn) pN1a: metastases in 1 to 3 axillary lymph nodes.....why do I have a 1/1 score w/that comment?

Seems like ILC can be hard to see so also great anxiety about where else in my body it might be lurking - I am prepared (hah-who is ever prepared....) that chemo might best be in the mix and anything that will help I will do given good data. Regardless of it helping in breast, does it helps reduce risk in the rest of the body? I am guessing I will be doing a petscan soon and regularly to see how that plays out?

I am still an early reader on the boards but it appears that given lymph node involvement opening the door to possible spread there or via bloodstream or other means to other parts of body - doing a mastectomy now might not help? My surgeon didn't think so. Seems like a lot of women stage II did do DMX and for a variety of reasons. Guess my question is, given what I read as ILC being sneaky, does DMX or taking everything out reduce re-occurence risks?

I am at UCH/Denver with great docs. I will probably still seek more opinions just for due diligence. It's the waiting for results and clarity on my questions that's driving me crazy today. I have lots more questions but these will do for now. Thanks and wishing good luck for us all!

jojo9999

Hi Doris, sorry to hear about your diagnosis. The fact that they only got only one node from your SLN biopsy, I think, is just due to your anatomy. they inject dye and look to see where the nodes lgiht up. the # of nodes that light up varies by person. They can go back and do a full axillary node dissection, or depending on size of tumor in + node, sometimes radiation is used as an alternative to the full axillary dissec. Although I never asked about the risk of lymphadema from ALN dissec. vs from radiation, I had the radiation (1 + (2mm) node out of 4) and haven't had any lymph on that side. I had the SNL biopsy done 4 days prior to BMX, so two different surgeries. I recall the stress of the decision-making at the time. my thoughts are with you.

Lojo

Hi Doris -

My understanding is that if the SN is positive, then you are likely to have axillary radiation rather than lymph node dissection (http://www.medscape.com/viewarticle/805406) - I think they've found that complete dissection is generally not necessary.

As far as the waiting goes - the time period between my surgery and the results of the oncotype test were by far the worst weeks of the whole process - see your doc for some anti-anxiety meds if needed.

As far as the prophylactic mastectomy decision goes - there are a few things to consider -- 1) how old you are (the risk of contralateral occurrence of a new tumor is generally viewed as a yearly risk - so younger women have a longer time frame to consider) and whether you have a family history / genetic disposition to BC 2) ILC (and if it's accompanied by LCIS) does seem to have a higher risk of contralateral BC than IDC does, plus it can be harder to detect. http://link.springer.com/article/10.1007/s10549-01...

BUT 1) The general risk at this point is more from distant metastasis rather than a new primary tumor in the other breast and 2) If you end up taking tamoxifen (and maybe the aromatase inhibitors too - though I haven't looked into that), it has been shown to decrease the risk of a contralateral occurrence (this was the one piece of the puzzle that I didn't really fully appreciate - though I don't think it would have changed my decision to have a BMX, as I didn't have the option of a lumpectomy on my bad boob.

nash

Just to expand on what Lojo stated re: mx--what surgery you choose has no bearing on distant recurrence. Lump/rads=mx (dble or single) so far as mets go. The only difference is the reduction of risk of local recurrence or new primary. But even then, one can still have a local recurrence with a mx, b/c it is impossible to remove all breast tissue.

Lily55

ILC is nearly always slower growing than other kinds of BC and due to its formation is often diagnosed as smaller than it is in reality on scans initially. This does not mean it has grown fast, it just means its hard to see on scans.......

Best advice is not to assume anything and to take your time over agreeing to your treatment plan as there really is no rush, a week or two makes no difference whatsoever where ILC is concerned, meanwhile read up on ILC from reputable sites and ask questions that are specific to ILC as it is different to IDC yet the difference is not considered enough in my humble opinion

Sorry you had to join the club no one wants to belong to

doris7125

Thanks All - this is helpful information already, good food for thought and more research to do. I have to figure out how to have my stats show up as I filled out the profile - just need to look at it again. In meantime, I am 55, great health overall, fit other than the obvious. ILC II A or B, 1/1, lumpectomy 5/20, clean margins. BRCA negative although my sister had IDC last year diagnosed almost exactly 1 year ago...., 6 months clean, lump and radiation for her. She is a life-long smoker though so that may make her future more difficult. My dad had colon cancer but lived 15-20+ years beyond that to 91 and we have a cousin who passed from ovarian. Those 3 types of cancer apparently are/or can be related to BC risk which is why I had the BRCA test scheduled April before I knew what was in store for me. I appreciate all your kind and thoughtful inputs. I hope I can be as helpful to others.

Yoshi_Falls

Hi, I was diagnosed by mammogram and ultrasound and biopsies on the 13 May.  I am booked in for a mastectomy of my right breast and an axillary dissection on 15 June.  My surgeon is very good but is reluctant to give me any concrete answers about stage of cancer, treatment etc until after the surgery.  After reading these posts I can understand why.  It seems that the size of the tumour is often incorrect when diagnosed by the US and the follow up treatments need to be assessed according to the pathology report.   

I have had bone and CT scans and both of these came back negative. 

Hang in there Doris.  I too am living in the land of uncertainty at the moment.  I too have heaps of questions, and, my mind is racing so fast I don't know where to begin.

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doris7125

I will be crossing my fingers for you Yoshi. It is excruciating to know we all have to fight hard. It's like showing up in your gladiator gear to the elevator bank and not knowing which floor the battle is on! I was in bad shape monday but alllowing myself to face my anxiety seems to have helped and yes, 1/2 valium did help. I am back to learning and accepting. I hope surgery goes well and it's all smaller than they guess.

vlnrph

Hi Doris and Yoshi. Welcome to the club nobody wants to join...

Do realize that if chemotherapy is suggested, many of us have gotten through it which means you can look for support here. What a relief to have nothing show up on the bone and CT scans there in New Zealand.

As far as lymphedema, that is a condition that can be managed and there are precautions to observe. After surgery, it allows better healing to NOT raise your arm above the shoulder for several days. Range of motion exercises can start after a week or two. A pre-op evaluation can establish a baseline with measurements, etc.

Considering mutation testing, there is a lot more out there besides BRCA. Ovarian cancer in the family is especially scary so I hope all genetic counselors think about the broader panel options that now exist.

Every day can be a fresh start, assuming a good sleep was experienced. Imagine each other, on opposite sides of the earth going through similar challenges! A few deep breaths is my favorite method for keeping or regaining a calm outlook. Keep us up to date as things develop.