Topic: First timer worried about next step

Forum: Not Diagnosed But Worried — For those who are experiencing symptoms or received concerning test results, but haven't been diagnosed with breast cancer.

Posted on: Nov 13, 2021 03:32AM - edited Nov 13, 2021 04:45PM by bbymom

Posted on: Nov 13, 2021 03:32AM - edited Nov 13, 2021 04:45PM by bbymom

bbymom wrote:

I've gone through 3 mammograms, an ultrasound, and a core needle biopsy on 2 sites in the last 4 months and am meeting with a surgeon next Thursday to discuss excision of the abnormal breast tissue. It's a lot and a bit overwhelming and I'm kicking myself for delaying the mammogram for so long.

Background: My mom had breast cancer (DCIS caught early) but my mammograms have been clear until this year (I'm 49) when 6 calcifications showed up clustered in one quadrant of my right breast. They initially recommended one biopsy but changed it to two and those were both done 4 weeks ago (6 cores each). The pathology report showed several abnormalities but no cancer, and the medical imaging report recommended a breast MRI (but said that it will be left to surgeon's discretion to obtain if it is felt to be clinically relevant) and that excision was recommended.

Is excision necessary if there is no cancer in all those samples? Would an MRI be helpful as part of the decision? If I proceed with the excision, would it be recommended to just remove the biopsied calcifications or all 6? Getting almost a whole quadrant removed seems so much! Sorry for all the questions. I think I'll proceed with it for a peace of mind and because one of the sites aches from time to time and did almost all day today, which I don't think is a good sign, but am really worried about the risks and what I will look like. I heard that invasive procedures can sometimes aggravate the cancer, if there is any.

Any insight, additional information, or advice would be greatly appreciated. I'm new to all this and it's a bit overwhelming.

Here is the pathology report in case that helps:

Site A: 3 mm span - Focal Atypical Ductal Hyperplasia (ADH) and Flat Epithelial Atypia (FEA) with associated calcifications - Atypical Lobular Hyperplasia (ALH) involving radial scar and surrounding breast tissue - Small intraductal papilloma, completely contained in core, and background proliferative changes

Site B: 12 mm - At least Atypical Ductal Hyperplasia (ADH) with associated calcifications

Thanks so much

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Nov 13, 2021 06:17PM moderators wrote:

Hi BbyMom,

We're sorry to hear what you're going through. Difficult for us to answer your (very good) questions, unfortunately. However, you may find some helpful information here: Understanding Calcificiations. Please keep us posted what your consultation with the surgeon reveals.

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Nov 14, 2021 10:05AM roo73 wrote:

BbyMom, I'm about your age and I hear you on the overwhelming part.

I had all the "stuff" you mentioned (ALH, ADH, FEA, etc. etc., I think I counted 7 things total) in the margins of some invasive lesions I had excised. I asked the surgeon (a) are you SURE you're not worried about any of this stuff and (b) isn't it unusual to have so many different things going on in one tissue sample.

His answer was (a) yes, I'm sure and (b) no, it's quite normal.

It sounds like they took rather a lot of biopsy samples, so I think it's also normal and even expected if you're feeling some twinges in the biopsy area, even 4 weeks later.

Your surgeon will give you their take on this. My question would be… what, exactly, would they be excising? Calcifications are not in and of themselves dangerous, and it's common to have hyperplasia throughout the breast.

My 2 cents: schedule that appointment. Then put all this to one side and enjoy your life until you find out what the surgeon has to say.

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Nov 14, 2021 10:23AM roo73 wrote:

I re-read what I just wrote and one more thing: the invasive lesions they took out were clearly visible on mammo, ultrasound and MRI (in case you go worrying that they went in to check on some ALH and found cancer incidentally… )

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Nov 14, 2021 04:54PM - edited Nov 14, 2021 04:59PM by bbymom

Thank you to the Moderator for the informative link. Based on the info there, it seems that MRI wouldn't be that helpful unless there is cancer outside of the biopsied sites. Judging by the size of my calcifications, it seems they're the less-risky larger ones but they're also asymmetrical and clustered so still kind of risky? Oy.

Thank you too, Roo73, I thought I was doing well pushing all this aside until my Nov 18 surgeon consult, but then the pain came and got me all worried again and now it's hard to get it out of my mind. Like you, I have no idea what they will be removing unless they just want to get a better look? If they take all 6 calcifications then that's too much breast tissue. I'm against invasive procedures unless absolutely necessary but more open to it now because I resisted a blood transfusion (severe anemia while trying to treat it with iron supplements and food) and a hysterectomy (endometriosis, adenomyosis, and fibroids) when I really should have followed doctor advice because my quality of life improved instantly when I finally did.

As for the mammogram, I didn't get the results other than a general letter after my first one stating that I have dense breast tissue and abnormal activity and need further testing (I'm in Canada and didn't get the Bi-Rads 2-5 score and didn't even know to look/ask for one until now). One of the radiologists said that they were concerned because of my family history and that the calcifications are asymmetrical and clustered but said there is a wide range of abnormal and I could just be asked to come back in 6 months or asked to proceed with surgery. Judging by the biopsy result recommendation, it looks like I'm on the bad end of abnormal? I wonder how often results similar to mine are left as-is and don't ever develop into cancer. I hate all this risk assessment stuff... so hard to know what to do! Many people around me believe that lots of people have some form of cancer within them and don't even know about it as it lies dormant for years and years and never causes a problem, but that invasive procedures (and chronic stress) aggravate the cancer to grow and spread. Not sure how much truth there is to that but it does worry me.

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Nov 14, 2021 08:02PM exbrnxgrl wrote:

Babymom,

Are these people telling you how cancer spreads oncologists or in the medical field? I know that they are well meaning but perhaps not informed. We have had two members that I can remember over the last decade who chose to do no surgery or conventional tx. They have both passed and it was not easy or peaceful. Everyone is free to make their own tx decision or not at all. I hope that everyone starting tx learns the facts as they are currently known and makes decisions from a position of strength.

Dx IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, ER+/PR+, HER2-
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Nov 14, 2021 11:25PM bbymom wrote:

Hi exbrnxgrl, these are just people that care about me and mean well, but I weight expert advice much heavier and will follow the expert recommendation. I'm just in that state of learning the facts/learning more so that I can feel confident about my decision. If there was cancer in those biopsy cores then I wouldn't even hesitate to proceed with surgery. However, I just learned that there is still a 20% chance of cancer even though the biopsy didn't show it so I will definitely proceed with the surgery. That risk is still too high for me.

Thanks for your reply.

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Nov 17, 2021 01:34PM roo73 wrote:

Bbymom, was that a 20% lifetime risk, or a 20% risk that you have invasive cancer right now? They are very different. If the presence of atypical cells bumps the 12-ish% average lifetime risk up to a 20% lifetime risk, that's concerning, but not the same as a 1 in 5 chance that you actually have cancer right now. Also, the presence of atypia doesn't actually "cause" the cancer directly. It just means that people with atypical cells are more likely to get cancer over their lifetime.

If I'm telling you something that's obvious, then please ignore. Those were just two things that I had to get clear with myself.

Can you request a consult with the genetic counsellor? I am in Canada too, and my clinic has an in-house person. It's hard to interpret all the stats sometimes. I found the bco "Know your risk" page very helpful www.breastcancer.org/risk (and I've formally studied statistics for research purposes—I thought crunching the numbers would be no problem, but… it was very confusing).

I'd just say: get a definite answer as to what they plan to excise and how much, because I think normally they wouldn't excise just calcifications.

Also: I want you to do what is right for you. However, if appearance matters to you: the breast will look different (asymmetry, divots, etc.) if they are taking out that much. I have large breasts and had only two spots excised. It was beautifully done—it's hard to see the scars—but it is definitely SURGERY. That's the only thing I wanted to mention.

Good luck with your decision. I know it's hard. You'll make the right decision for you.


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Nov 18, 2021 07:23PM bbymom wrote:

Hi Roo73, I didn't see your reply before my surgeon consult appointment today so didn't get a chance to ask about a genetic counselor etc but the surgeon did say that she's concerned about there being cancer now so she ordered an MRI to get a better look and reduce the odds of having to do multiple surgeries. She referenced the radiologist's comment that there is 'at least ADH" on one of the sites as well as the number of abnormalities. That's also the site that was painful last week, and was painful again today when she examined it and felt a little lump there (but said it could just be residual pain/healing from the biopsy).

So unfortunately she still doesn't have a definite plan as to how much she will excise, but hopefully will in a few weeks. I'll have the MRI in the next couple of weeks and the surgery likely in January.

Thanks for posting the breast cancer risk link. Other than being a white woman with breast cancer family history and first pregnancy at the age of 35 (and likely low Vitamin D as I believe that's super common in my rainy, dark Burnaby just outside of Vancouver), the rest are pretty low risk. I'm pretty active and eat quite healthy and have never smoked etc.. but I'm not sure how the risks all weighted.

I will report after the MRI and will keep my fingers and toes crossed for good results!

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Apr 6, 2022 02:32AM bbymom wrote:

Hi all, I have an update and I guess I should move to the DCIS thread after this?

I had an excisional biopsy to remove the two biopsied calcifications and unfortunately the pathology report found that there was DCIS in one of the sites and unfortunately it was not fully removed (clear margins on the surface but not the depth so there was more DCIS closer to my chest wall).

Pathology results for above surgery:

A. Breast, right retroareolar lesion: Biopsy site with intraductal papilloma. Background breast with benign fibrocystic changes, non-lesional microcalcifications, and focal columnar cell change.Negative for residual atypical ductal hyperplasia and malignancy

B. Breast, right 3 o'clock lesion: Ductal carcinoma insitu (solid and cribriform types, intermediate nuclear grade) with associated microcalcifications. Estimated size of DCIS at least 34mm. DCIS present at posterior margin. Ancillary Studie results: ER: Positive (intensity: Strong, 67-100%). Alfred Score 8/8

I then had a lumpectomy (they called it a partial mastectomy - they removed 5.4 x 3.5 x 1.5 cm of tissue) with the following pathology results:

Breast (right, posterior margin): (i) Residual DCIS - Intermediate nuclear grade, micropapillary and cribform type, without associated necrosis (ii) Background breast tissue showing organizing biopsy cavity, widespread flat epithelial atypia (FEA), usual ductal hyperplasia without atypia, fibrocystic change and columnar cell change.

My surgeon recommended 3 weeks of radiation and I have an appointment with an oncologist in a few days. She also scheduled an ultrasound for my left breast (to monitor a cyst found in the original mammogram) and another mammogram in October to monitor this left breast and consider whether I would like to proceed with plastic surgery.

The only other thing that happened is that I developed a seroma from the second surgery hat still feels hard but is not causing any pain anymore but is healing very slowly. (I've been asked to wear strong compression bras to help the body absorb it.)

Does this seem like the correct treatment? Is there anything specific that stands out that I should add to my list of questions for the oncologist? Any insight you have would be greatly appreciated.

Thanks again for all he help you've provided thus far!

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Apr 6, 2022 04:33AM moderators wrote:

bbymom, thank you for the update, although we're so very sorry to hear of your recent diagnosis. Besides the DCIS forum, you might check out our Resources for the Newly Diagnosed, where you'll find some good info that can help you understand pathology reports, learn more on treatment options, and more. We know it's all overwelming and confusing right now, just know that you are not alone here! Please keep us posted on how you're doing.

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