My Mom just diagnosed

Ryan-

We're so sorry to hear about your mom, we know how scary and overwhelming the first days and weeks can be after a diagnosis. The feeling of helplessness is very normal, but hopefully she (and your family) will feel a bit more in control after meeting with the oncologist. You may want to check out our thread for families and caregivers, located here: https://community.breastcancer.org/forum/16. It's helpful to find support from others as you help your mom through this. Also, we have a thread for members who have been diagnosed with mets, which you mind find helpful as well: https://community.breastcancer.org/forum/106.

Please keep us posted on how the meeting with the oncologist goes!

The Mods

Careful about the 'metastatic'. The report is most likely talking about the node. This is not "true" metastasis."

Ryan has your mom had surgery yet? I'm guessing no . All you know right now is showing up in one lymphnode. Till you know more no one can truly say anything. Additional tests is good will give you more information

When is her surgery

Hi Ryan,

Hang in there...you'll realize that all will be well, but that comes in time. I didn't actually believe it for many weeks, but know your fears and worries are normal!

1) They took out 11 nodes and found 6 +.

2) If you look at the signature at the bottom of every member's posts, many of us post our treatments, etc. But till you get used to the "shorthand" way members talk to each other, here's mine: lumpectomy to remove the tumor first, then 4 dose-dense tx of AC chemo, 10 tx of Taxol, 6 weeks-five days a week of radiation treatments (they last about 15 min each), surgery: bilateral mastectomy followed by immediate reconstruction--I only had one surgery to do all of that, and I'm on an anti-hormonal med now to decrease roving estrogen, which fed the kind of breast cancer I had.

3) lymph nodes are the first place c seems to go in many cases. It's not unusual for millions of us to have + nodes. We'd love to have clear nodes, but that isn't really much of a guarantee of safety either. Lots of us wind up with a dx with clear nodes, and years later here it is again. Truth is, either way, we join the club. But until your mom gets her scans--probably a PET scan and maybe more--she can't be considered in a true metastasized mode, I believe. That's why we have the "I" in the b.c. type --invasive (ductal, lobular, etc.) carcinoma. Invasive doesn't mean distant metastases, but it does mean it has the tendency to spread, unlike the "in situ" types of b.c--meaning it's cancer, but hasn't developed the nature to spread, and is (for now) staying in "one place" (which is what in-situ means). Having cancer cells in the lymph nodes under your arm suggests an increased risk of the cancer spreading, but it doesn't mean it already has.

Waiting for all the treatments, etc. is normal. The hospitals and medical centers have limited amounts of time and often scans and other treatments take time. Just know that waiting is normal and it doesn't mean your mom is at increased risk. If she waited months for dx and treatment that would be dangerous, but a few weeks is normal and she'll be okay.

I said the odds are in her favor because she only has one + node and the b.c. seems to be grade 1--the least aggressive, meaning it's lazy, and isn't trying to go anywhere very fast. Aggressive (grade 3) means it's pushy and there is a higher risk she might have it elsewhere in her body, but grade 1 is great news for her, so try to hang onto that.

Hope that helps; I don't know if you've visited these links on BC.org yet, but they might help you understand the staging decision and some acronyms. I wanted to reassure you that simply having a positive node doesn't not mean Stage IV, nor does it mean it is anywhere else in her body. You'll know that after the scan results. Hoping for the best for you...

http://www.breastcancer.org/symptoms/diagnosis/sta...

http://www.breastcancer.org/symptoms/diagnosis/rat...

http://www.breastcancer.org/symptoms/diagnosis/lym...

RyanT, I am so sorry your Mom has been diagnosed with bc. I know it must be hard to be the one having to watch someone you love going through this part of the treatment - when there are more questions than answers and the actual treatment hasn't begun. I wish that there was a way to know in advance what's going to happen, so that everything wasn't so scary. But going through the steps, meeting with BS (breast surgeon or 2) and PS (plastic surgeon or 2) and MO (medical oncologist or 2) and RO (radiation oncologist or 2) and doing more scans/labwork is important. Reading through this site can really help you get a better understanding of what questions to ask those providers, and getting a handle on the lingo (which is a steep learning curve). But it doesn't necessarily mean that the treatments some of the women here received (even with a similar diagnosis) is what will happen with your Mom.

Neo-adjuvant chemo (before surgery) is frequently recommended in certain types of bc, but only her MO will be able to make recommendations based on her specific situation. 5mm is pretty small (and she isn't ER/PR/HER2- or ER/PR/HER2+), so not sure that they need to "shrink the cancer" before surgery. But she will need to discuss this with her MO.

There are forums here that your Mom can join (IDC, chemo - before during and after, surgery - before during and after etc) that will give her contact with women who have shared a similar diagnosis or women who are going through the same treatment as your Mother at the same time. Please do encourage her to join us, so that she can get support directly and ask her questions as well.

Ryan, I disagree (gently) with MTwoman--your mom has Invasive lobular carcinoma (ILC), not invasive ductal carcinoma (IDC). So you are in the right place here, posting questions in the right forum.

Chemo has been shown to be less effective on ILC than on IDC but not ineffective -- so that is why I wanted every possible tx to knock out any micro-cells this first time around. For me, the choice to go for aggressive tx (dose-dense chemo, rads, mastectomy, anti-hormonal) was determined by how I'd feel if I looked back on all this in years to come and was mad at myself because I opted for less aggressive tx and the c came back. Even if it was just a 5% chance that some tx would work, I wanted that 5% chance. Some women feel differently. I knew because of my excellent health and determination I could handle all of it, and I had a close friend who went through it all, reassured me about all if it, and she mentored me through treatment.

Good luck. Let us know how it goes.

Claire in AZ

Ryan -- I am somewhat similar but ILC much larger and it even travelled up my chest wall and wound around my brachial artery/vein/nerve root which caused my right arm to swell from shoulder to fingers which is what sent me to hospital for dx and revealed the BC. Nightmare time.

My husband found me a great MO though a Dr (GP) friend, who,found me a great surgeon in Tampa. I live in Naples FL, so the trip,is 2.5 hrs. No matter, surgeons in Naples called the chest wall tumor non-resectable which means they won't touch it.

This was all early January and believe me, I and family were scared to death. I started chemo treatment A/C Feb 01 for 4 doses and had another MRI Mar 24 which showed tumor had shrunk to 1/5 original size --cu/cm. This is chest wall tumor that was behind my collarbone and ribcage, hence to most surgeons unreachable.

I then had 10 weeks of Taxol and 3 weeks to wait for surgery (bmx and chest wall tumor) which happened last week, Jul 05. He removed all right underarm nodes -- thinks he got all but one, so -- 48 of them. LEft breast sentinel node was clear so he stopped there. I go tomorrow for one week checkup and will get pathology results from the biopsies then. Very worried about results except that surgeon was very positive and happy after surgery and said he believes I'm going to be ok with radiation (5 weeks 5/week) and 10 years of Hormone Therapy. He is meaning NED.

Of note, after the second 2nd round of chemo, the Taxol, I had a3rd MRI and was disappointed that tumor had not shrunk significantly since the 2nd MRI but surgeon said that cancer could be all gone and what is left is only scar tissue. Guess I will find that out tomorrow.

All my doctors have been very positive about my future with present day treatments. My MO says that there are many lunching old ladies out there that are on HT and you would never guess they have cancer.

thanks icietla -- report was good. Surgeon said he got all cancer, margins were clear.

He also told me the ILC stage 3 has good prognosis of five year survival, better than IDC. Some confusion still as to my stage number.

Many more questions still and I go to RAD on Wednesday to get started on prob 5 weeks of treatments.

I never had any neuropathy during chemo treatments, but started getting it just before surgery, just in fingertips and some toes. Will radiation treatments make this worse?

hi Ryan, you can ask your moms primary physician to refer you to city of hope but not the main campus but to the south Pasadena office. It will more than likely be approved. Go online and see what surgeons or medical oncologist work in that office and have your PCP do a referral to those Drs

RyanT, big tumors are common with ILC, don't let that get you down. Mine was 6CM, and I am still here.

I am glad you found an onc you feel comfortable with and Cedar Sinai is supposed to be one of the best centers for this.

A clinical trial of which medication? I would be iffy on that. There is an established protocol for your mom's situation and, statistically, it works. I also had stage 3 ILC, and my docs started with heavy chemo to stop the cancer in its tracks. They were afraid that if they started with surgery, I could develop metastasis before we got to the chemo part.

Ryan, I would most likely not agree to that. What is their explanation for wanting to try this instead of standard of care?

You will find info floating around about how ILC doesn't "respond to chemo," and they may bring this up. But: be careful about the fine print in that. What it really means is that if you give chemo before surgery, called neo-adjuvant chemo, and compare response rates between ductal and lobular cancers, there is a better chance in ductal cancer that the neo-adjuvant chemo kills ALL the cancer prior to surgery. However, this chance is always quite small, regardless, and other studies show that the survival advantage gained with the chemo is similar for ductal and lobular, in spite of this difference in initial response.

Also, just because the chemo doesn't kill ALL the cancer, that doesn't mean that it doesn't work. In my own case, FEC chemo shrank the tumor to half after 2 treatments, and after 4 treatments we couldn't find it. There was still live cancer when we operated, but a fraction of what we started with.

Another option, as standard of care, is to use anastrozole alone as neo-adjuvant treatment. This might make sense for your mom, since her cancer is grade 1, i.e. slow-growing and therefore less likely to respond well to chemo (mine was grade 2). Also anastrozole is far easier to tolerate for most people than something like FEC chemo. However, the info I can find on fulvestrant is more iffy. So my concern with this trial is that she could end up in the fulvestrant only arm.

My sense is that they should give a very good explanation of why this trial is right for your mom. I would also strongly urge you to get a second opinion, before you decide.