Just diagnosed... is this normal?

Cloudy1

I met with the surgeon on Friday to go over my biopsy results... I do have cancer....

She said "she thinks it lobular"

She feels it is larger than what it's presenting on the ultrasound, wants to do an MRI to know exactly what's she's dealing with. If it is the way it's presenting on the ultrasound than I'd be a good candidate for a lumpectomy and radiation, if it is in fact larger than a

Mastectomy..

I asked if we caught it early and she said I won't know until I remove it.

She did say my lymph nodes look clear

But would remove 2 nodes when she removes the lump to check

Feeling like I'm no further ahead in the waiting game... I guess I was expecting more..

Does this sound normal?

MelissaDallas

I don't understand the "thinks it is lobular." The biopsy says whether the biopsy sample was ductal, lobular or whatever. You can also have both lobular and ductal. Lobular cancer does not necessarily show up well on mammogram or ultrasound. It grows differently than the classic discrete "lump" that ductal cancer tends to present with.

You should get a copy of your biopsy report and get and keep copies of all test results and imaging going forward.

Cloudy1

Thank you for your response.

I too was confused with the way she said " I think it's lobular "I made an appointment with my family Dr. to ask for a copy of the biopsy report...

The surgeon did say the same as you that lobular doesn't show up well on ultrasound and that is why she wants a MRI..

MelissaDallas

Of course the biopsy is just a sample. There can be more going on when they get in to remove it. It is pretty common to have an alphabet soup of the cancer and one or more types of precancerous or atypical cell types in an area

Elkay7

Cloudy1,

Everything you just described mirrors my exact situation except for the "lobular" issue. The BS thought we could get by with lumpectomy but after MRI what was thought to be 3 centimeters turned out to be much larger so a mastectomy was necessary. In my opinion, an MRI is an absolute must before making any decisions. Of course this means more waiting

Hang in there and keep asking questions, I found that it helps a lot!

Elkay

momand2kids

Hi

when I had my biopsy in 2008 the radiologist told me she thought it was lobular-and she was right--- I do think they can, after years and years, do some identifying up front. However, the biopsy is really the final word. The waiting is the worst. sounds like your doc is doing the right things. Hang in there!!!

melmcbee

Cloudy1, I have ilc and ulyrasound showed it around 2cm and mri showed it at 5 cm. It turned out to be about 3.5 cm. We chose bilat mastectomy because it is known to come back in other breast. The day if surgery they take out a lymphnode or 2 to test for cancer. Cold slice testing and it came back negative so they didnt do an axillary dissection. A week or 2 later I received a call that said my lymph nodes were sent for further testing. I had to go back and get them removed. I had 8 positive out of 15. Lobular is hard to see and some test just miss it. The mri us a must cause you want to see where all it is. Goid luck and healing hugs and prayers to you

Cloudy1

thank you so much for your responses .

I guess I was expecting more ans

EastcoastTS

My biopsy showed ILC -- .8mm. MRI 1.5mm. Actual at surgery 1.8mm. I was told that it is usually larger than shows at biopsy. ILC confirmed with final pathology. But you should get pretty good info from that biopsy path. ER/PR and Her2 status, grade, etc.. Those didn't change that much on final analysis for me.

It's hard to gain all the info and learn the new BC language so quickly. Thoughts with you.

Cloudy1

an update... Had my MRI.. and it still looks good for a lumpectomy with radiation or a mastectomy no radiation...

She said both were very comparable ...

Not sure what do do...radiation scares me... thoughts opinions...

MTwoman

cloudy, you should discuss your options for radiation with a radiation oncologist (she will discuss what the risks are of the treatment vs the risks without it) and a medication oncologist (who will do the same re: chemo or targeted therapies). You need your pathology report (hormone receptor status, HER2 status etc) to help you make some of these decisions. Start a notebook and get copies of all of your reports and labs. Good luck!

marijen

Go to radiation forum.

Cloudy1

MT woman

Do have my original pathology that says my biomarkers are pending... not sure what that means... feeling extremely ignorant... got the feeling from surgeon here's your options .. just pick ....

MTwoman

Cloudy,

so biomarkers pending would mean that they may have sent tissue samples out to another specialty lab and the results aren't available yet. My path report came in 'waves' as well; the dcis diagnosis, receptor status and HER2 status all came in separately. The surgeon is only one member of your team. You really do need to meet with a radiation and medical oncologist (or 2+ if you'd prefer) to better understand your specific treatment options and how they may reduce your risks. Typically, for any invasive cancer (either ILC or IDC or even IBC) you'll discuss lx + rads vs mx and then chemo and perhaps an antihormonal. The RO would discuss your risks/benefits from radiation and the MO would discuss your risks/benefits from chemo and anti-hormonal. There is also a targeted therapy offered to HER2+ women (like Herceptin) and the MO would talk to you about that.

I know everything seems pretty overwhelming at first. You have just as many questions (maybe even more) than before you got your diagnosis. Just add in the fact that your worried and scared on top of it. But there are so many women here to ask questions and get support from. You need to start thinking about your team, and scheduling some appointments so that you feel like you're able to start understanding your bc, your treatment options and make some decisions. Then you'll start to feel more empowered.

You don't have to "pick" until you have the information you need and feel good about your decision. Sending warm thoughts and gentle ((hugs))

Cloudy1

MTwoman

So maybe mine will come in " waves" too?

Just expected to know more I guess.. when I asked about getting it early,again she replied with " won't know until we remove it" just feeling so outta the loop about such important decisions, and unsure if that's the norm...

I appreciate your responses so much.

marijen

There's a forum for Lobular Cancer - maybe you'll find more information there on how they determine if that's it

https://community.breastcancer.org/forum/71

MTwoman

Cloudy, certainly do check out the forum that marijen suggested.

But if you're feeling "out of the loop" on decisions being made about your treatment, it might be time to schedule a second opinion with a breast surgeon who communicates with you in a way you better understand or an appointment with an MO to discuss options and to help you better understand. The beginning is certainly a time of many questions, but it seems to me that you feel as if you aren't being included in decision making. It is your treatment and you need to be an important decision maker as your personal recurrence risk and risk tolerance need to be considered in the treatment planning process. Are you at a cancer treatment center? or is there one close by? Is there a nurse navigator or social worker associated with your surgeon's office?

kira1234

Cloudy 1 if you have lobular breast cancer it shows very differently. It tends to not form a lump but rather like a string. Often lobular is larger than thought for this reason. I have lobular breast cancer first diagnosis 7 years ago and a relapse this year. Surgery in May. If you have any questions ask away

Diagnosisbreastcancer

This is such a difficult time, so hugs to you! This is a complex process and it's really challenging to understand what's going on. I thought I was going to have a lumpectomy but during the surgery, they found a tumor and I had a mastectomy. Sometimes they don't know until they go in and operate or until they get the pathology report on tissue removed during the surgery. I discovered that I needed to take notes during meetings with Dr's- there's so much that goes over our heads while emotions churn away. And having a team of experts helps- my team is my surgeon and oncologist. (Later on, I met with a radiation oncologist.) It's normal to be scared and confused by all the information and choices. In case it helps- my mastectomy was not as difficult to recover from as I expected. About radiation: I know 2 women who went through radiation and said it was easy. When I feel down, I remind myself to take it "One day at a time, one step at a time..." (As an aside, I interviewed women who had positive attitudes during their diagnosis/treatment and summarized their pointers in a book that's available on Amazon: "How to Deal with a Cancer Diagnosis, Tips for Coping from the Patient's Perspective" in Kindle & paperback.)

My surgeon told me: You'll get through this and will be looking at it in the rear view mirror. That calmed me...

You are strong and you can get through this!

MTwoman

I think we've got many women here who can give tips and pointers for free, as well as forums for women who are having treatment at the same time as you are for support. Check the surgery, radiation, chemo or hormonal forums for helpful tips before during and after, as well as info on lymphedema or any specific medication recommended to you.

MTwoman

I think we've got many women here who can give tips and pointers for free, as well as forums for women who are having treatment at the same time as you are for support. Check the surgery, radiation, chemo or hormonal forums for helpful tips before during and after, as well as info on lymphedema or any specific medication recommended to you.

also, I'm not sure pushing your own book on this thread is helpful.

tapwhite

My thoughts & prayers are with you Cloudy1 as I had ILC as well. FIRST and most important thing is to take a deep breath and listen to your gut! There are a lot of things thrown at you all at once and you feel like you are on the hot seat and have to make an immediate decision but you don't. Gather all the information you can and talk it out...then go with your gut and do what is best for you! My gut told me to choose BMX (I'm 12 weeks post-up) and it was right on but that may not be the same in your case.....do your research on lobular and make your decision. Knowledge is power....you got this!