Help me make sense of this

28pregnantandscared

Hi everyone,

I posted this as an update on my topic from a week days ago as well. But I guess since I'm diagnosed now I'll post here too.

For further info, I am 28 years old and currently 23 weeks pregnant with a baby boy.

I was diagnosed today. I'm getting more answers tomorrow but wondering if anyone can try to make sense of what I was told over the phone today.

The biopsy came back showing the cancer is ductal in origin, grade of tumour is stage 1 or 2.

She said Dcis stage 0 (preinvasive) found in area as well. I don't know if this means I have two types of cancer or what that even means...

She said I'll be having surgery up front (lumpectomy with lymph nodes), testing the lymph nodes (2 injections but one can't be used because I'm pregnant, the other is a dye and might not be able to be used either), this will help determine exact stage.

She said we're not going to discuss chemo right now until we get an exact result but either way it won't be happening until after birth and I'll be induced around 36 weeks.

My world is falling apart. Can anyone make any sense of this? I don't really get it...

2019whatayear

super big hugs. The DCIS is not invasive so that is a good thing, I think what she is saying is that when you have the lumpectomy they will see how much is DCIS and how much is IDC and that would help determine the stage. This is really some BS and I hate this for yoy

Beesie

I'm so sorry you received this diagnosis.

So, first things first. Because you are pregnant, I would strongly advise that you see a Medical Oncologist before you make any surgery or other treatment decisions. Surgeons operate while MOs assess the full diagnosis and recommend the rest of the treatment plan. With some early stage diagnoses, patients speak with a surgeon and have their operation before ever seeing an MO. In your case, however, because you are pregnant and this might impact the treatment plan, I think it is very important to talk to an MO right away. The MO might not change the plan, but the MO really is the expert on the total picture and I think you need that perspective before you undergo surgery.

Now, about the diagnosis. "Ductal" could refer to either DCIS or IDC, but since the doctor even mentioned the possibility of chemo, it does sound as though you have both IDC (invasive ductal carcinoma) and DCIS (ductal carcinoma in-situ). Most cases of IDC develop from DCIS so it very common to find the two together - in fact about 80% of patients who have IDC also have some DCIS. The DCIS is the lesser condition (and chemo is never given when the diagnosis is DCIS alone) so while any DCIS in your breast will need to be removed when you have surgery, you can otherwise ignore it - anything that is done to treat the IDC will be more than sufficient for the DCIS.

There are some very important pieces of information from the pathology that will determine your treatment plan. These are:

- whether your cancer is driven by hormones, estrogen and/or progesterone, i.e. is the cancer ER+ or ER- and PR+ or PR-?

- HER2 status; is the cancer HER2+ or HER2-?

- tumor grade: it sounds as though the biopsy may have found a combination of grade 1 and grade 2 cancer cells - this is a measure of aggressiveness, and refers to how quickly the cancer is growing and how different the cancer cells look as compared to normal cells. Grade 1 is the least aggressive, grade 3 is the most aggressive.

Staging is different than grade. Staging is usually not done until after surgery because it requires information about the total tumor size (invasive cancer only; the amount of DCIS isn't counted) and the nodal status and number of affected nodes (if any). You will have a sentinel node biopsy (SNB) when you have surgery in order to check your nodes. The tumor size can be estimated from any imaging you've had (mammogram, ultrasound, MRI) but this isn't always fully accurate, and with a combination of IDC and DCIS it will be impossible to know until after surgery how much of the tumor is IDC and how much is DCIS. So some doctors might estimate the stage prior to surgery (clinical stage) but usually staging is done after surgery (pathological stage).

At this point you really are waiting on more information before anything can be known. My advice is to get a copy of the biopsy pathology report - some of the critical information will be in there - and ask to be scheduled to see an Medical Oncologist.

ctmbsikia

Beesie, I just read the other topic and 28 is going to see an MO on Friday.

28-Between the surgeon and the MO appts. this week, you will get more information. Do not be afraid to ask away. Please ask about the dye for surgery, or possibly ask if the node testing part can wait. Is there a way to do a simple lumpectomy now to at least get the invasive part out. I would also just throw out there if the whole surgery can wait? I know that sounds crazy, but you could ask. I would think between the 2 Dr.s having the stats of your biopsy they could make an informed recommendation.

I am sorry to hear of your diagnosis. You are so young And pregnant. I can not imagine. We will do our best to try and help you through.

28pregnantandscared

Thank you all so much.

That information was incredibly helpful. Yes, I'm seeing a medical oncologist Friday morning first thing so I won't make any decisions until then.

I'm wondering why IDC was never mentioned...

I'm so scared for all of these appointments and for my baby and ugh I just don't even know what I'm doing right now. I appreciate all of the support, advice, and sympathy.

Beesie

Wow, something weird going on. I've posted twice, I've seen my posts come onto the page, and then they've disappeared. So let me try this one again:

Can someone explain the difference between "stage" and "grade"? Do these mean the same thing?

- No, they are not the same thing. I explained what each means in my previous post, above.

My husband recorded the phone call so we just listened to it back. She said the ultrasound and physical exam showed no signs of lymph node involvement, but because we can't do an MRI while pregnant, she's going to be taking a sample of the lymph nodes while the lumpectomy is performed to send it away for testing. If it isn't showing in an ultrasound, is this a good sign? Or can that be missed?

- It is a good sign, but it is also true that lymph node involvement can be missed. Sometimes the cancer cells in the nodes can only be seen by the pathologist when he cuts up the node under a microscope. FYI, even if you could have an MRI, and regardless of what it shows, you would still need to have a sentinel node biopsy (SNB) at the time of your surgery. This is always required for anyone who has invasive breast cancer - imaging is simply not clear/precise enough to do an accurate nodal assessment.

Also, she referred to it as ductal in origin, the tumour grade is 1 or 2, and the DCIS stage is 0.

- Most breast cancer is ductal in origin. And pure DCIS is always Stage 0. When a patient has both IDC and DCIS, the final diagnosis is only given one stage so the Stage 0 for DCIS is meaningless. The final staging for a combined IDC / DCIS diagnosis is always based only the IDC, and will be Stage I or higher.

To mention again, because the possibility of nodal involvement was mentioned (and it usually wouldn't be for pure DCIS), because the possibility of chemo was mentioned (and it usually wouldn't be for pure DCIS) and because you were told that there was DCIS in the area "as well", I have assumed that your diagnosis includes both IDC and DCIS. While both IDC and DCIS are ductal cancers, from what I've seen in years on this site, usually when doctors use the term "ductal", they are referring to IDC, whereas DCIS will be specifically identified as DCIS or being in-situ. But this isn't 100% certain from what you were told. It is still possible that the biopsy only found DCIS, and the rest is speculation on the part of the doctor. If this is the case, then it's possible that after surgery your final diagnosis could be Stage 0 DCIS. I don't think that is the case from what you were told, but this is critically important to understand. When the doctor said that the cancer is "ductal" does this mean that the diagnosis is IDC, invasive ductal carcinoma?