How does this diagnosis sound?

smb05996

Hello all,

My mom was recently diagnosed with ILC. It's been an up-and-down month. She's 59...has never had a mammogram until she found the lump (don't get me started). She was convinced that mammograms caused cancer via repeated doses of radiation...she had no family history of BC (we know how irrelevant that is)...and her lineage tends to live to 90ish without intervention. So she found a thickening in her left breast sidewall. The NP at her gyn office thought it was a fibroid and sent her for a confirming mammogram. The radiologist didn't like what he saw and ordered an immediate ultrasound. He again didn't like what he saw and ordered an immediate core biopsy. He told her off the record it was going to be cancerous. The office called the next day with a diagnosis of ILC Grade 1 size 2.7cm. Nodes looked clean. She is ER+ 90% slightly PR+ (I think 5%) and HER-

She has an excellent surgical oncologist and med-oc, so she is in great hands. She had a lumpectomy and sentinel node biopsy a few weeks ago. Initial findings on sentinel nodes were clean...but the in-depth culture showed cancer in all 3 nodes (one large and two small piggyback nodes). The largest nodal involvement was 1.2cm. The other two nodes themselves were very, very small. I don't know the mm of involvement but it would not be much.

Her med-oc told my mom that hers was the slowest cancer she had ever seen...this being the reason that the initial findings on the nodes showed no cancer. She told my mom that this cancer will not kill her; that it's simply too sleepy and sluggish to do anything aggressive and she will live to be a sweet old lady. She also said that, given the slow nature of the cancer, she isn't sure it went anywhere beyond the sentinel nodes and that, if it didn't, she may not really need chemo.

So she's having an auxiliary node dissection Wednesday to check for cancer spread. I'm assuming there will be additional positive nodes given the involvement of her primary sentinel node. Then she will be on chemo in 3 weeks. If, however, there aren't any additional positive nodes, they'll proceed with the oncotype test to determine the benefit of chemotherapy. Right now they're saying stage II pending the dissection.

Here is my concern. Her CT scan showed a miniscule (<1mm) nodule in the lung. The radiologist and med-oc both feel it is nothing and only want to monitor it with follow-up CT scans. The rest of the CT and her bone scan were clear. The med-oc said we all have at least one nodule in our lungs due to infection or scarring or something or other.

If the rest of her nodes are clear, I will be comfortable with that. But if she has cancer in the auxiliary nodes, as I assume she does, does that point to that nodule being a met?

Needless to say, my mom is terrified...of the cancer and of the upcoming treatment, and also of the possibility of mets or recurrence. She's asked me to do some research for her, which I am doing...when I came across this board. I've been trolling for a week or so  (sorry) and have already learned so much from all of you!

How does my mom's diagnosis sound? Hopeful? I want to give her strength, but there's a difference between giving her strength and false hope...if that makes sense? Thanks so much for the help.

happyraccoon

Questions:

How old is your mom?

What is her general health like now?  Her lifestyle?

Reading your post, my first thought was, "What's her oncotype?"  I think that could be a very helpful thing to have. 

I did find interesting articles about ER+ ILC treatment outcomes in medical journals with just a google search.

There are so many twists and turns on this journey; it's really hard to go with just one thing and trust!  But the more doctors you see, the more opinions you have and then it gets REALLY hard to trust.

I'm glad they are looking at more nodes for her.  

From what little I know, your onc sounds pretty normal in his thinking.  I have nothing to offer about the lung nodule.  Except optimism and prayer. 

wallycat

I wish oncologists would stop predicting cancer spread.  They just don't know.  The odds are your mom will live a long and fruitful life, but not because her oncologist said so.

Sorry for the rant.

Until the lumpectomy is done, there is little to know at this time.  My biopsy report altered after they had more tumor from the lumpectomy.  It is great to hear she has a good surgeon that she trusts.

Take things one step at a time and sit back....it's a bumpy ride.

Once you have all your info, you can make decisions and plans.

Best to you both.

mary625

Hi! I had one of those lung nodules. Mine was called a ground glass nodule. They were pretty sure it was benign and decided just to monitor it. It did not grow or change after a year. I was told the same thing that many people have these things due to scarring after a bad cold or virus. I had cancer in my nodes, but I don't believe that it caused this nodule. Two years later I'm doing fine. I would believe them if they tell you it's not a met.



Regarding your mom not having a mammogram, I had them and yet 8 months after a supposedly clean one, I found a thickening, just like your mom, which turned out to be ILC of about 7 cm. After chemo, it was about 1.8 cm. So please don't fault your mom as the mammo might not have found it. ILC is very evasive on the mammo. It still wasn't clear on the mammo even at the time of diagnosis.



You asked about your mom's diagnosis, and I think it sounds very treatable and you should trust the MO. If you don't, you can get a second opinion. They will put her on either Tamoxifen or an aromatase inhibitor since she is ER+, so that's very treatable.

smb05996

Thanks much for your replies. My mom is 59. Regarding faulting her...I'm not...but she's blaming herself so I apprecate your story, Mary. It will help her. She's wishing she had caught it earlier (obviously), and it's a terrible price to pay for not catching it, KWIM?

She had the lumpectomy with the sentinel node biopsy which did confirm the grade 1 classification. Actually, analysis of the tumor itself is what led to the "slowest-growing cancer I've ever seen" comment from her Med-Oc. They haven't done the oncotype yet as they first want to check for additional nodal involvement. If it's in ANY of the auxiliary nodes, she will automatically get chemo. If it's not,  then they will run an oncotype test to determine if she would benefit from chemo. We're assuming, given 3/3 nodes were positive, that there will be at least one more in the auxiliary nodes. We shall see.

For now, the plan is auxiliary node dissection Wednesday, then chemo starting 3 weeks afterward for 4 months. Then radiation 6 weeks. Then BMX and arimidex. We just keep telling her that by next summer, she'll be over the hump.

Thanks for the support. It is most helpful!

Lily55

That is an aggressive treatment plan! I would insist on Oncotype before opting for chemo or not.....and i had Stage 3 ILC that did not show on mammogram !! So no blaming herself, lobular is s notorious for lurking unseen

happyraccoon

I really tried to blame myself for a while (the what ifs) but eventually it became just too exhausting.  Read enough stories around here and look at profiles, it'll become clear there is little ryhme or reason to causality.

I do like to keep up on my Komen survey, though.  It seems science can get somewhere with this if we keep adding our data into a comprehensive collection.

My best to you and your mom!!!  It's clear you are a good daughter!

lekker

At first I was going to write that the doctors wouldn't order an OncotypeDX test with more positive nodes because it's only used for women with 3 or fewer. I did a quick check and noticed that Genomic Health is claiming that it is valid for women with even more than 4 positive nodes. I didn't research further to see what the NCCN guidelines are, but just because the company that markets the test says it can be used, it doesn't mean that your doctors will agree (or that your insurance will pay for it). Here's the link to their claims of utility in node-positive patients.



http://www.oncotypedx.com/en-US/Breast/HealthcareProfessionalsInvasive/ClinicalSummary/ExpandedUse

MmeJ

Hello, smb. I'm sorry about your mother's diagnosis.



I just made my first post in the Stage III forum earlier today. I was dx'd in July 2010 with a large lobular tumor in the left side, and a Stage I ductal in the right.



Doing the axillary node dissection soon sounds like the right next step, followed by the Oncotype test if the lymph node pathology warrants.



It seems to me that there might be a couple of different directions - you mentioned (likely) chemo, then rads, then BMX. Typically a BMX is done before rads but I do not know if having a lumpectomy first might change the sequence. Did your mom have clean margins? If so, then is the BMX prophylactic? That, too, might change the sequence. If prophylactic, I might ask the onc why chemo first, if the lumpectomy and ALND have already been done - no tumors to shrink.



Regarding the lung nodule, many people have them, even those without BC. But in your mom's case that might enter into the decision-making as well. If her docs are concerned they may do a PET (and maybe should) before proceeding further. If it is cause for concern - and I greatly doubt it - that would affect the course of treatment, too.



I hope that made sense. These are framing-type questions to ask the docs.



I know, it's so much to try to wrap our brains around when we're in new and foreign territory. Please tell your mom that lobular is difficult to find on imaging. There are, unfortunately, a lot of us here who can attest to that. And there are, fortunately, a lot of us who can attest to that. :-)

smb05996

Well, my mom's dissection results are in. All level 1 and level 2 nodes are positive. Apparently, the surgeon also took some level 3 nodes(?) and those were negative. Can anyone explain the levels? I'm gathering level 1 is the primary drain site of the tumor area, level 2 farther up under the arm, and level 3 farther still. If level 3 was clear, would that indicate that the cancer may not have spread beyond the area?

She's going to be getting 4 months of chemo and 6 weeks radiation, and has opted for BMX afterward. The BMX has been delayed for radiation purposes. Her oncologist feels she'll have better results and less potential side effects if they radiate her breast as opposed to her chest wall. So much information to absorb!

melmcbee

Hi Smb and welcome. If it was me I would get a petscan before any treatments. I would want to make sure it hasnt spread because that would alter the treatment plan. My onc wanted me to have my bmx before my chemo and radiation. Sending prayers.

itsjustme10

If your mom is going to want reconstruction, she might want to talk to both the radiation oncologist and plastic surgeon before deciding on the order of treatment, so that she knows all of her options and possible consequences of her decisions. 

MmeJ

As I mentioned upthread and melmcbee suggested, since your mom's Level 1 and Level 2 nodes were all positive, I would be surprised if a PET/CT was not recommended before proceeding further. In her situation, I would insist on one.



I have not heard of a surgeon taking Level 3 nodes; mine explained to me before my surgery that it is difficult to remove them, but that she would look at them during my mastectomy and ALND. When I asked, "How will you do that?" she said she just sticks her finger into that area and pokes around. I thought that was pretty cool.



In your mom's case, since all her Level 1 and 2 lymph nodes were positive, rads to the supraclavicular nodes would be recommended unless the PET/CT shows spread elsewhere.



You might want to google "axillary lymph node levels" so you can see a map.



I had chemo before surgery to try to shrink the tumor, which it did - from 10cm to 2.2 at pathology. That is a good response for Grade 1 hormone positive. Inoperable at dx due to size. (Lumpectomy was never an option on the lobular side.) I write this so she can know that chemo can be effective.



I hope she's doing well after this surgery, and receives sufficient pain relief to help her recover quickly.

smb05996

Thanks much for your responses. She has been in quite a bit of pain sinceWednesday's surgery, but meds are helping.

We go back to meet with the MO on Sept. 9. I will ask her about a PET scan.  A part of me hates asking such things...I know how frightened my mom is about all of this...but I also know we need to answer all the right questions to get to the right treatment. I'm glad to hear your Grade 1 hormone positive responded to chemo. That's been one of her concerns for a while now.

I'm unclear about how many level 3 nodes the surgeon took or why she took them. It's something I will ask about on the 9th.

My mom is not considering any type of reconstruction, and the BMX is prophylactic. She already had a lumpectomy when they did the SNB (she figured if they were cutting, they might as well take out the cancer, too). She has clean margins and no evidence of any other disease, apart from the darn nodes.

It gets hard to stay positive, as I know you all know. It seems like we keep hoping, but then we get slammed with more bad news. This has gone from a "don't worry...you caught it early, you'll be okay, your lymph nodes look clean" scenario to an "every single node in the area had measurable ILC cells in it" scenario. Hopefully the MO will have a good treatment plan set up and we can start to move forward soon.

Thanks for the ear...and the shoulder.

SuperFoob

I just wanted to add: I had regular mammos and nothing was ever detected. I, too, had a thickening on my left breast. I wound up with a 12cm tumour (ILC) and 1cm tumour (IDC).



So let your mom know that ILC is sneaky. It doesn't always look like a solid tumour. My ONC and BS explained it as footsteps, one in front of the other, creating lines, rather than circling around and creating a solid tumour. Kind of like "sheets" or "clouds".



Best wishes for your mom!

smb05996

Clarification on the level 3 nodes. The BS took tissue from around the nodes, and not the actual nodes. That makes more sense.  She said that generally, this tissue around the level 3 nodes would test positive before the cancer moved to stage IV, so the fact that the tissue was negative indicates we're still looking at stage III. My sister (who, ironcally, worked in breast cancer research at another cancer center) confirmed we'll be doing rads to the supraclavicular nodes and that the rads sessions will destroy any remaining cancer cells confined to the breast area. And the chemo will take care of any cancer that may have spread beyond the breast area...theoretically, anyway. I know you all know this. But there's a point here if I can get to it...bear with me. My sister was heavily involved in research for the hormonal clinical trials (specifically Tamoxifen and Arimidex) before they were widely available. She said her data showed that when given the hormonal treatments, women with a high likelihood of a recurrence had their risk of recurrence drop to 15%. Now, it's not the 0% we'd all like to have, but she said that according to her research, the combination of chemo, rads, and hormone inhibitors for sensitive cancers, is very, very effective for ILC, even later stage. That's good news for my mom, and good news for everyone here, too, so I wanted to share. Thanks again for all your support. You're all in my prayers.