Vague diagnosis - Ductal Carcinoma

Hi scoop:

Sorry you have to go through this journey. It seems to me that the information relayed seems to be missing some important details. The information listed in my signature is from my biopsy path report. You can request a copy of your report from the doctor who ordered the breast biopsy. I had a stereostatic biopsy with clip. I received the complete pathology report when I had my followup with my breast surgeon eleven days later. The pathology report was also posted in my patient portal of my healthcare group so I was able to read the details a few days earlier. The pathologist who examines the tissue sends the report to whoever ordered the biopsy. Good luck in getting more information.

Wishing you good luck.

You need to get yourself a copy of your pathology report from the biopsy - there will be more information in there. It is your information and you have every right to receive it. The information you've received is very vague. I'm guessing the Radiologist believes it is the role of your surgeon or MO to provide the rest of the findings from the biopsy, and explain the significance.

While technically the words "ductal carcinoma" could refer to either DCIS or IDC, doctors tend to use the term as shorthand for IDC, and never for DCIS. So if the Radiologist did not say "DCIS" or "ductal carcinoma in situ" or "non-invasive cancer", but just said "ductal carcinoma", then what you have is IDC, invasive ductal carcinoma, which as he said is the most common type of breast cancer. The other indictor is your Radiologist's comment about determining the staging, since with DCIS there is no question about the stage - DCIS is always Stage 0. IDC can be Stage I, II, III, or IV. Another hint... the comment that "it didn't look as if it had gone into the lymphnodes". This is relevant only with invasive cancers. Lymph nodes don't even have to checked with DCIS.

A while back someone else had the same question and I answered the same way. She nevertheless convinced herself that she had DCIS, and when she saw her surgeon and was told she had IDC, she was devastated and believed that she had been misled. But I've been hanging out here for 14 years and I don't think I've even once seen a doctor refer to DCIS as "ductal carcinoma" without adding the all important "in situ". So assume your diagnosis is IDC.

Your Radiologist is correct that Staging can't be known until after surgery and possibly additional scans. But your biopsy report should include the hormone status (ER, PR and HER2) and the grade, and those are critical factors in the development of the treatment plan.

So get that report!

scoop,

When I was diagnosed, all the radiologist told me was that I had IDC, nothing else. It took a week or so to find out that I was ER+/PR+, and even longer to discover I was HER2+. Also, because I did chemo first, my estimated stage was never confirmed by my surgical pathology report. My tumor was supposedly 5 cm.+, and one node tested positive for cancer, so (under the old system of staging), I would have been Stage IIIA. Who knows, though. Early staging estimates can be inaccurate.

It's probably most important to know what kind of cancer you have -- the ER+/PR+/HER2+ part. Staging is most likely to drive treatment options if you're Stage IV (which is unlikely).

Thinking of you, scoop. My first phone call about DCIS was very vague. However doc did include “in situ”.

More info came with each appointment. Glad you requested report

I see. Thank you so much for taking the time to reply with this information

I wonder if it might take some time after the biopsy for the testing for ER/PR/HER to be completed in the lab. I didn't get any news at all until about 8 days after my biopsy, so I wonder whether possibly that's all the information he had at the time.

I don't know know whether it's better to know *something* earlier but have huge blanks, or to have to wait longer to get any information but at least it's a little bit more complete.

If it is an issue of waiting for lab testing to be complete, then I bet you can get that full copy - whenever it's ready - even before you meet your doctors - if you want. I had to go in person to my radiology lab to request the results, but they were legally required to give them to me.

Good luck. The beginning is so so hard.

Research, never stop asking questions. Learn about alternative treatments. Learn about the risks of "mainstream" cancer treatment. I was diagnosed 12/27/19 and what an education I've had. Go for second opinions please.

One interesting thing is that they don't really know the size of your tumor until they cut it out. the biopsy numbers are usually in the ballpark but not exact and can sometimes be off by quite a bit.

Another step you'll probably have is an MRI to see (with more clarity than a mammogram) whether there is anything else going on in your breasts that the docs might want a closer look at.

One of the surprising and emotionally difficult things for me, especially at the beginning, was how I always seemed to be waiting for some more information, and at almost any point you could get new information that would meaningful change the treatment plan/prognosis. Parts of that keep persisting, at least for me, after active treatment.

There is a real mental/emotional component to this process.

Good luck!

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You can also share your experiences in this Topic on managing medical records. Thank you and we really hope this can be helpful to you ! (PM us with feedback or questions)

p.s. for now, only for those getting treatment in the US