Timeline questions from DX on

DesertILC

Howdy folks,

So, my DW had a thickening (felt kinda like an almost 2" long x 1/2" wide, elongated gummy bear - slight give, but firm) directly against the chest wall. PCP sent her for an US/Mammo in late November. Mammo was negative. US showed a lesion. Radioligist ordered a biopsy. The biopsy was a week ago. ILC Confirmed.

There has been no lymph node testing so far, but there is a preliminary staging of Stage 2. ER/PR+. HER2 (currently unknown). The Oncologist does not want to see her until he gets the HER2 results. We got radioligist's notes (but not the pathology report), which indicates it has vascularity. There is no mention of the chest wall involvement in his notes, though from what I have read online so far, it seems like that could not be detected from the US (Mammo was completely negative).

What is the rough timeline moving forward. I have seen on this forum that HER2 results can take anywhere from a week to mulitple weeks. I suspect an MRI will need to be done at some point to see if there is chest wall involvement and/or to do an initial look at the lymph nodes.

Since we haven't seen an Onc or BS yet, and won't until the HER2 comes back, I have no idea what to expect moving forward except that it likely involves an MRI, surgery, and then potentially chemo/rads/other meds.

Any idea of a timeline on what will happen, and in which order?

Moderators

Hi Desert, and welcome to Breastcancer.org.

We're sorry to hear of your wife's diagnosis, but you've come to the best place for answers and support. Someone will surely be by shortly to weigh in with their thoughts and experience with a timeline from diagnosis to treatment.

In the meantime, you may find it helpful to visit the main Breastcancer.org site's Your Diagnosis section, which explains what each piece of the pathology report means for treatment, as well as the page Getting Your Pathology Report.

We hope this helps and we wish you and your wife the best. Please keep us posted on how she's doing!

--The Mods

ElaineTherese

Hmmm.... Your DW's timeline, order of treatment, etc. may depend on two things: 1) her HER2+ results; and 2) where you live.

In the U.S., HER2+ cancer is often treated with chemo and targeted therapy (e.g. Herceptin) neoadjuvantly (before surgery). However, in other countries like Canada, neoadjuvant treatment is less common.

If your DW is HER2-, she may get surgery first. Then, her oncologist might order an Oncotype test to see whether the benefits of chemo outweigh its risks for her particular lesion.

Depending on the surgery chosen by DW and other factors, she might get radiation either after surgery or after chemo. Many women who choose a mastectomy can skip radiation completely.

Hope this helps!

jojo9999

Sorry to hear about your wife's diagnosis - yes an MRI should be done. I don't think HER2 testing takes too long - I would think a week at most. Unless they suspect widespread disease, the typical order is MRI, surgery, then chemo if necessary, followed by radiaiton if necessary. FYI, I didn't get my stage until well after surgery. It is just too preliminary prior. If MRI shows extensive disease, which is unlikely since your wife had a negative mamo, they do chemo first. If your wife turns out to be HER2-, she would be a candidate for oncotype dx testing that is done after surgery, to guide the decision on chemo. Lots of women with ILC don't get chemo. I had surgery, radiaiton, and then tamoxifen. If you haven't already, spend some time reading the posts on these boards - lots of good information and some great contributors. Good luck

vlnrph

My referral was to a surgeon initially but many folks are doing chemo prior to an operation these days. An MRI would provide helpful information so perhaps you could push to get that scheduled. Waiting for results is the worst part. The tumor has probably been growing for some time which means an extra week or two should not make a big difference in terms of ultimate outcome. Are you in the US or at a comprehensive cancer center?

I'm sure your wife knows that you are a great guy to be stepping up and doing this research on her behalf!

DesertILC

Yep, in the US.

Based on the records we were able to get yesterday, I fear that they may have METS concerns. Unfortunately, I don't know enough to decide if the fears are justified. In August, she had a full exam, nothing. No palbable mass. No reason for concern. I know ILC can hide a bit, but at least I have a timeframe for "nothing" to a significant, palbable mass. That concerns me.

Should we try to get the PCP or the Onc to order the MRI? This waiting is driving me nuts.

ElaineTherese

Hmm, if your wife's doctors were really concerned about mets, they would order a PET scan not an MRI. A breast MRI (which is done face down) focuses primarily on the breast region. It might show nodal involvement and chest wall involvement, but it wouldn't show whether or not the cancer had spread elsewhere.

Most early stage women do not get a PET scan unless there is some chance of mets (it's an expensive scan). I got one before surgery because 1) my tumor was big (5 cm+), and 2) one node had already tested positive for cancer (fine needle biopsy). Plus, my cancer was Grade 3 and "growing like kudzu in the lab," according to my oncologist. I did have to get pre-authorization from the insurance company to get a PET, but given my situation, it was easily approved.

Sorry you're feeling so antsy -- the waiting really truly sucks.

CCS648

I agree, pushing for an MRI ASAP is what I would be doing. I'll keep my fingers crossed that there are no mets.

My BS ordered one as soon as my biopsy results came back, and I got it done within the week.

Depending what MRI shows, they could order PET.

Luckynumber47

My team ordered the MRI right after my biopsy and before I met with the breast surgeon and I'm grateful they did because they found an aggressive DCIS in the other breast (which then led to another biopsy and more waiting for results)

My first mammo was end of Jan and surgery was in early April. (so, 2 1/2 months start to finish) Part of the delay was because of my personal commitments and partly to schedule a time when both the breast surgeon and the PS has openings in their schedules, so you can expect this early phase of treatment to take 2 months (if no chemo before surgery). Then the Drs like to let you heal up a bit (maybe a month) before starting any chemo, radiation.

I know, it drags on forever when you are desperate for quick answers. Just keep studying the info on this site and you will be well informed when meeting with your Drs and making decisions.

Best of luck to you both. I'm hoping for only good news from here on out

toomuch

DesertILC - I'm sorry that you have found the need to be here. You're wife is lucky that you're being so proactive on her behalf! Since ILC can be sneaky, an MRI is often indicated before treatment. You could ask the breast surgeon or PCP to order the MRI. Try not to let your mind run away while you're waiting. I found this time to be the most difficult. Her2 negative ILC is slow growing and the majority of ILC is Her2 negative. Maybe it will help to hold onto that thought.

I wish you and your wife the best.