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First timer worried about next step

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BbyMom
BbyMom Member Posts: 31

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

Comments

  • moderators
    moderators Posts: 8,089
    edited November 2021
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    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.

    We're here for you! The Mods

  • Roo73
    Roo73 Member Posts: 28
    edited November 2021
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    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.

  • Roo73
    Roo73 Member Posts: 28
    edited November 2021
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    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… )

  • BbyMom
    BbyMom Member Posts: 31
    edited November 2021
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    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.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861
    edited November 2021
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    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.

  • BbyMom
    BbyMom Member Posts: 31
    edited November 2021
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    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.

  • Roo73
    Roo73 Member Posts: 28
    edited November 2021
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    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 https://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.


  • BbyMom
    BbyMom Member Posts: 31
    edited November 2021
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    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!

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    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!

  • moderators
    moderators Posts: 8,089
    edited April 2022
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    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.

    The Mods

  • rah2464
    rah2464 Member Posts: 1,192
    edited April 2022
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    Bbymom sorry you find yourself with some involved margins. I assume since the surgeon is recommending moving to radiation that there is no chance to remove the affected areas? Sounds like this area was close to the chest wall? Sorry to hear about the seroma I hope that goes away pretty quickly for you. Mine took about a month to resolve fully. If your compression bra doesn't put enough pressure on that area, you can add medical pads ( i used some abdominal ones) and place right over the seroma.

    Might be worth it to get a second surgical opinion if this is a surgeon that doesn't just specialize in breast surgery. I would definitely want to consult with an MO to get a comprehensive treatment plan. The good news is that there is no invasive component, which eliminates any need for chemotherapy. You may want to consult with more than one radiologist in order to get the most effective radiation treatment plan.

    As to the evaluation for the left breast, I would have a discussion about a breast MRI, which can provide more comprehensive imaging.

  • quietgirl
    quietgirl Member Posts: 165
    edited April 2022
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    I’m not sure this is going to help or not but basically I had same/similar surgery lumpectomy for DCIS. Mine is not near the chest wall but my radiation scheduled was 15 while breast followed by 4 targeted sessions. So not that completely different than yours. In the end it will be the RO who makes the decision on how much radiation makes the most sense (I was given a 3 to 5 week window by the surgeon and the RO was the one who developed the plan of 19 days). The MO met with me before radiation started to discuss prescriptions/plans of action after radiation was over (since you are ER positive that is probably going to be something they talk to you about).

    Like I said I am not in the exact same situation but similar enough to say it sounds like you are on a similar path but the radiologist and a medical oncologist will probably give you more information to round out your treatment. If any of the practices you are using has a patient/nurse navigator that can be a helpful person to reach out to if it gets overwhelming.


  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Hi Ra2464 and quietgirl, fortunately they did get clear margins with the second lumpectomy but I still have some unremoved calcifications as they two outliers were 12cm's apart. (I'm now thinking I should have just done a mastectomy instead of that second lumpectomy... it's just so hard to know!). I did see a radiation oncologist last week and they recommended whole-breast radiation due to the larger size DCIS (~3.9cm in total), my family history (my mom also had DCIS), and my age (49). They also recommended 5yrs of Tamoxifen hormone therapy as I'm ER+. I'm expected to start radiation within the next 2 weeks. @quietgirl, yes, it sounds VERY similar. I wonder if they ct scan results will affect the original number of 15 sessions - I may end up even more similar to your plan. How was your radiation, if you don't mind me asking? The cancer centre is 30-45 mins away with a very busy parking lot so I'm considering taking the time off (short term disability) as I'll be missing close to half a day of work as-is plus I hear the fatigue can be bad.

    Thanks again for your help!

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Thank you moderators for the link - I will definitely check out all these resources. Thank you!

  • quietgirl
    quietgirl Member Posts: 165
    edited April 2022
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    • the most annoying part of the actual radiation for me was the position although most days it's only about 10 minutes on the table. Arms stretched over the head is just uncomfortable. The thing I wish I had done differently was moisturizer better I was great for the most part but not as great on the side and towards my underarm. That ended up being the area that was the most tender and with peeling skin. I don't think there is a thread just now in the radiation forum for April but if you are starting before the end of the month or you are starting in may you might want to start one and I'm sure you will find others who at the same place in their treatment so you can go through it together.
  • salamandra
    salamandra Member Posts: 736
    edited April 2022
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    Taking time off during radiation was one of the best things I did for myself during treatment, and worth every penny of lost income. If you can afford it, I recommend it. It gave me something nice about that stressful time, and took off a lot of hassle and pressure.

  • mle42
    mle42 Member Posts: 124
    edited April 2022
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    Bbymom, it's great news that they got clear margins on the second surgery! R.e. radiation, I had 33 sessions. I kept working for the first half - more or less 1/2 time, since my mornings were spent driving to and from the radiation center - then went on leave for the second half. I could have kept pushing through and worked the whole time, but I had the flexibility to take the time off at work, and am very grateful I did. Radiation can definitely sap your energy, and without working I could focus what energy I did have on taking care of myself instead of spending it at work. Be aware that side effects from radiation (including fatigue) often continue for about a week after your last radiation treatment before getting better, so if you do take time off work, give yourself an extra week at the end if you can.

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Quietgirl – Thanks for the info and the heads up about arms stretched over the head. An old rotator cuff injury has been bugging me lately so I better get back on my exercises! I also skimmed through the March 2022 radiation chain and love that idea, thanks! Hopefully I'll get my start date soon.

    Salamandra and mle42 – Thanks so much for sharing your experience. I'm a single mom so am worried about juggling everything while still working. I will talk to HR tomorrow to find out more and try to take at least some time off at the end. Thanks so much!

  • cathy67
    cathy67 Member Posts: 411
    edited April 2022
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    bbymom,

    Thanks for sharing you experiences, those helped me a lot! From my 1st mammogram 10 years old, I was called back due to calcification. All the six months follow up with diagnostic mammogram, sometimes together with ultrasound, till the cancer diagnosis in year 2019. Now I just got another biopsy order, and will see my family doctor for the ultrasound report to get details. Nightmare came back again, I was so deeply depressed these days, but your post told me it is so precious that we got chance to catch it earlier. Yeah, I feel a bit relax, thanks and wish you a smooth radiation journey.

    I am from richmond, I did radiation in bc cancer center, everybody there is so nice. I took skytrain there myself, yeah, I got a bit nausea sometimes, no big deal. I gained a few lbs after 1 month radiation, cause I always a restaurant to award myself after treatment.

    We have a bc women thread, are you interested to join?

    https://community.breastcancer.org/forum/55/topics/779734?page=312#idx_3111

    Best wishes!

    Cathy

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Cathy67, I am so sorry to hear about your cancer diagnosis but glad it was caught early. This stuff sure plays with our emotions but I know statistically speaking we have great odds of living a long, healthy life if it's caught and treated early. That's what I'm holding onto!

    I'm in Burnaby and will also be going to the Vancouver BC Cancer Centre so thank you for that feedback! I got a tiny bit nauseous during the ct scan from the feeling of movement with my eyes closed so I do worry that may be a problem for me. We shall see... hopefully it's something my body will adjust to quickly.

    Thanks for the BC women thread... I will definitely join! :)

    Thanks again!

  • moth
    moth Member Posts: 3,293
    edited April 2022
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    Hi bbymom, just waving hello! i'm in coquitlam. Good luck with your rads!

  • BbyMom
    BbyMom Member Posts: 31
    edited April 2022
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    Hello moth! I'm near the Coquitlam border so I can almost see you waving! :D Thanks... I'm a little nervous about the side effects but have faith that I'll recover quickly.


  • wisemom
    wisemom Member Posts: 2
    edited June 2022
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    hi my first time here. Four weeks I noticed a pinkish purple spot about the size of a quarter on my right breast. I have a strong history of breast cancer in my family. I don’t handle things about my health and I deal with terrible anxiety. I went to a new o gyn and she thought it was from bra but ordered a diagnostic mammogram and ultrasound if needed. I had this done Monday and both were normal. I am still out of my wits because I am scared it’s ibc and that it doesn’t show up on these tests. How much should I trust these results? I felt dr wanted to get rid of me and I know I won’t be okay until I get biopsy but I was told no. Any ideas od adobe? I’m 69

  • BbyMom
    BbyMom Member Posts: 31
    edited June 2022
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    Hello wisemom and welcome to the group! I'm fairly new here so still learning but I would advise against a biopsy unless test results warrant it. I needed two and it's a pretty invasive procedure. If your doctor thought it was from a bra, perhaps wait a little to see if it gets better on its own, or get a second opinion? I know finding spots on your body is scary but hopefully this one has a happy ending and you're one of the ones spared in your family of breast cancer. Keeping my fingers crossed for you.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited June 2022
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    Wisemom, you'd do better to start your own thread in the "Not Diagnosed" forum, so you'll get more responses. It sounds like you don't have most (any?) of the IBC symptoms, one of which would usually be rapid increase in size of the discoloration. It sounds like yours has stayed stable. If it's any comfort, I've seen dozens of people on here who thought they had IBC, and the number who were actually diagnosed was like a handful. Good luck figuring out your spot.