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Topic: BIRADS 5-biopsies of multiple masses soon

Forum: Waiting for Test Results —

For members not diagnosed with breast cancer, but waiting for test results:  Biopsy, mammogram, ultrasound, or other screening tests. Waiting is VERY difficult but remember...

"Worry does not empty tomorrow of its sorrow. It empties today of its strength." -- Corrie Ten Boom

Posted on: Sep 11, 2021 03:25PM - edited Sep 11, 2021 06:32PM by Jen2957

Jen2957 wrote:

First, thank you all for sharing your stories. I have been a mess and the posts from the members of this community have been about the only thing that have kept me from falling over the edge after a BIRADS 5 mammo/ultrasound.

I had a 3D screening mammo October 30, 2020. All clear, but I have heterogeneously dense breasts, so maybe missed?

Had a fairly large lumpy area to the armpit side of my right nipple that concerned me AND I had been having some unusual centralized chest tightness and discomfort, so I went to my general doc on August 6, 2021. She did an EKG and a few other things to check my heart (all normal) and also told me that she felt the lump could be my normal, "lumpy" breast tissue, but ordered a diagnostic mammogram and ultrasound to be certain. First appointment available was September 2.

Had DX Mammo and Ultrasound. Knew something was wrong when the radiologist came in to do some ultrasound measurements herself. After discussion, she told me she had found three masses in my right breast and one in my left breast. She told me she suspected cancer and she wanted me to have core needle biopsies on all four. She was concerned that it would be too many for me to do in one day, but I have chosen to have them all done ASAP.

LEFT BREAST:

12-1:00 o'clock-4 mm, hypoechoic round mass, irregular margins, no vascularity

RIGHT BREAST:

10:00 o'clock-9 mm irregular mass with indistinct, somewhat angular margins and internal vascularity;

12:00 o'clock-10 mm complex cystic and solid mass with no vascularity;

8:00 o'clock-7 mm irregular mass with indistinct margins and internal vascularity with an adjacent hard to measure area extending to 9:00 that is concerning for disease involvement.

Biopsy appointment is September 16 (as you know, waiting has been hell) with same radiologist AND ultrasound tech who did initial exam (which I'm told is ideal bc they are familiar with my findings). Radiologist will be doing this at my local hospital, but the breast care department is part of the University of Ky Markey Cancer Center which is a large, teaching and research facility, so I feel confident with the care and can easily transition to treatment there if needed.

I am terrified, of course, and very concerned about the data regarding interval cancers and new data regarding multifocal cancers often being more aggressive types. I now have a tender flattish lump over a rib on my left side, above my left breast, a couple of inches from my sternum that sometimes seems to shoot a quick pain through toward my back. I still have intermittent central chest tightness and discomfort, but have been treating it for GERD and it does seem to be getting better. Of course, in the midst of all this emotion and BIRADS 5 finding, I cannot help but worry about de novo Mets. One minute I am certain that it must be stage IV and the next, I am admonishing myself for getting ahead of things.

Have any of you had multiple core needle biopsies at the same time? Multifocal masses? I am just trying to process and prepare, so I am looking for similar experiences or just general insight. Thank you all again for your candor, your strength, and your unrelenting support of everyone else on this journey; it is truly a lifeline for so many of us

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Sep 11, 2021 04:34PM Trishyla wrote:

Oh, yeah. I had three total, but only two were on the same day. I found a lump. My primary care doctor sent me for a biopsy and it came back IDC, invasive ductal carcinoma. It was triple negative which is very aggressive.

I was sent to a breast surgeon who found two more lumps in the other breast. Those were the two I had biopsied at the same time. Also came back IDC, this time hormone positive.

Like you, I was terrified, convinced it had spread everywhere. It hadn't. At the of my surgery my pathology identified five distinct cancers spread across seven tumors. But no metastases.

Five years later I'm still here. Still considered NED, no evidence of active disease. Hope to stay that way for a very long time.

Just take it one step at a time. It is surprising what we can get ourselves through. We're here for you.

Trish


Dx 8/30/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Dx 8/30/2016, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2- Dx 9/6/2016, IDC, Left, 1cm, Stage IIA, Grade 2, 1/2 nodes, ER+/PR+, HER2- Chemotherapy 9/28/2016 AC + T (Taxol) Surgery 4/4/2017 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Chemotherapy 8/5/2017 Xeloda (capecitabine)
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Sep 11, 2021 05:54PM SondraF wrote:

That first awareness of what BIRADS 5 means is pretty terrifying, but based on the sizes noted and the fact that your medical team was proactive to get that lump checked out rather than just dismissing it as normal for you, are great signs. De Novo diagnoses are around 5% of all diagnoses, and many of us had extenuating circumstances as for why/how the situation developed and much larger primary tumors. You are doing well in recognizing your mind drift that direction is not the best way to proceed! Mets bone pain is never shooting - it is a deep, continuous pain that is never quite resolved by painkillers or physical therapy, etc unless its a fracture and then, well, you'd know it.

I know its easy to say just hang on and let the medical system grind through its process, but we've all been there and its tough to not try and jump the gun and guess and research. Right now they suspect one mass is cancerous and are checking out a few others, but beyond that, its all anyone knows. No reason to panic and worry about multi-focal disease if it isn't even a thing at this time.

Hang in there and let us know the ultimate outcome.

"The closer we come to the negative, to death, the more we blossom" - Montgomery Clift Dx 9/27/2019, IDC, Right, 5cm, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy 11/29/2019 Ibrance (palbociclib) Surgery Prophylactic ovary removal
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Sep 11, 2021 06:48PM wondering44 wrote:

@Jen2957

I am sorry you are here.

My radiologist told me to prepare for a cancer dx at my diagnostic mammogram and ultrasound appointment. She told me again at the needle core biopsy appointment. She said she wanted to give me time to prepare rather than leaving it to a surprise. She was right. I am glad she was upfront to provide me with time to prepare for the dx, although I was still shocked at the positive result.

Now, the hard part is the waiting between tests and results. It is okay and normal to have many different emotions during this time. Do you what you need to get through these days. Many will have advice on what you should do. Right now, you are in your shoes. No one else is walking in them for you. Again, whatever works for you to get through this is fair, and no one should expect you to do it differently. FYI - A little advice from my mother-in-law, who had the same battle fifteen years ago. It was great for my family to let me go through it any way I chose based on my emotions.

My thoughts are with you. You are not alone out here on these message boards. Hoping for the best outcome for you from the biopsies.

Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+ Radiation Therapy Whole-breast: Breast, Lymph nodes
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Sep 11, 2021 07:00PM Moderators wrote:

Hi Jen2957 and welcome to Breastcancer.org,

We're so very sorry for the worries that bring you here, but we're really glad you've found us, decided to join and post. As you can already see, our amazing Community is full of incredible members always willing to offer advice, information, encouragement, and support -- we're all here for you!

We wanted to join in here and echo the sentiments of the members above. Try your best to not jump to conclusions. We know it's hard not to get ahead of yourself, but keep yourself busy to keep your mind off things until you find out more.

Please keep us posted with your results -- we're sending good thoughts your way!

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Sep 12, 2021 07:11AM BCinfoseeker wrote:

Hello Jen - our dxes are very similar. Multifocal IDC. I was also Birads 5. However, I had a negative biopsy on the two that my surgeon biopsied; she did absolutely correctly but they came back (falsely) negative. If this happens to you, push for a lumpectomy anyway and sentinel node biopsy. I’m glad I had one so I could be properly diagnosed. I haven’t had the sentinel status confirmed yet but it’s close.

Giving platitudes about being fine is just that; but I believe that in most cases, the cancer we have can be wrestled to the ground. Science, good habits and a willingness to make needed changes all will help us make treatments more effective.

Hope to hear the right news from you - hug

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 12, 2021 02:17PM - edited Sep 12, 2021 03:27PM by Jen2957

Thank you so much for the welcome and the support! The support and information from people who have been through this strikes a deeper chord somehow and has already alleviated that feeling of being alone even when I have a wonderful support system of family and friends. I am so thankful to have found you all.

BC Infoseeker- ugghh! What a roller-coaster of going from BIRADS 5 to “It's Clear!" to IDC. I will definitely push to investigate further. I almost wish we had just started with the lumpectomies and gone from there! Did you have your biopsies all in one day? Just wondering why the radiologist seems so concerned that it will be intolerable to do so. Thank you for reaching out- I hope we can stay in touch on this crazy ride we are now on together

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Sep 12, 2021 02:34PM Jen2957 wrote:

Trishyla- I am so happy you are still NED!!! After the number of tumors and multiple types, I can only imagine how you must have felt when first diagnosed.

When I start to feel the anxiety rise about Mets, I repeat your words, “I was convinced it had spread everywhere. It hadn’t.” To myself as a reminder that what I’m feeling is just that- a feeling. Nothing is a reality until the diagnosis is complete. Thankfully, the pain over my rib has improved, and I think that if I didn’t still have this chest discomfort - a feeling of pressure, mild to moderate pain, and heat in the center of my chest, I would have more moments of being able to let myself become more distracted. At this point, my doctor is treating me for GERD and I hope that is all it is. I’m sure my current stress will really help the healing if that’s what it is! Lol

Thank you for taking the time to reach out to me- it has truly given me something to hang on to and I appreciate it so much!

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Sep 12, 2021 02:55PM Jen2957 wrote:

Sondra F- Yes! That BIRADS 5 is a butt-kicker! My radiologist told me she felt it was a “better than 50% chance” it was cancer. Then I got the report the next morning from my primary care physician and saw BIRADS 5- what an escalation!!!!! Of course, well-meaning family and the handful of friends I’ve told at this stage all like to share that they’ve had biopsies before, too, or so-and-so had many biopsies over the years and they have all come back benign, so I shouldn’t worry. It is difficult for them to understand the gravity of the BIRADS 5 category.

My radiologist did mention multi-focal disease, but I am praying she just meant that it is a possibility, not a suspected probability. I will ask more questions at the biopsies, but I know she can’t diagnose anything from the ultrasound and biopsies alone.

Thank you for the de Novo stat- it is a good reminder that, if I think it is so UNLIKELY (5% chance) that I would have benign masses after a BIRADS 5, then why do I think that same percentage would make me LIKELY to have Mets? This whole experience will make you completely irrational! That being said, I am 50 years old. When I had my daughter at 25, I had severe preeclampsia (she was a 2 lb, 11 oz preemie) and was one of a very small percentage of cases who did not improve after delivery. Then at 36, I had an ischemic stroke (two, actually) even though I was “so young and didn’t have any of the risk factors”. I am incredibly grateful to have come out of those situations very well, with little negative effect, but I guess I’ve been conditioned to think I’m one of those who doesn’t always follow the expected path. Lol. I need to focus on the part about getting through those situations, but my silly brain just doesn’t seem to be cooperating!

I can’t thank you enough for reaching out- your reminder of the stats has given me perspective and your kindness makes all the difference! I will update when I find out more

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Sep 12, 2021 03:26PM Jen2957 wrote:

Wondering44- I vacillate between being glad I know about the BIRADS 5 and wishing I didn’t. Depends on the moment. Lol. The radiologist told me “better than a 50% chance” it’s cancer, then when my primary care physician gave me the report, I saw BIRADS 5. That was a gut punch for sure! Ultimately, I am one of those who wants to know the good, the bad, and the ugly up front - I function better when I don’t feel like I’m going to be surprised.

My mom has repeatedly told me the same thing about this being my journey and that I can feel any way I want about it. What smart women we have in our lives! One the flip said of that, my first meltdown was over how sorry I was to put everyone through all of this and how I didn’t want to make everyone worried and sad, etc. My wonderful husband finally told me one day, “I’m going to let you do this part for a little while longer, but then I’m not going to listen to it anymore.” He said I’m allowed to feel any way I feel, but I’m not allowed to be sorry for something that is entirely beyond my control and that I most certainly did not choose to go through. Being given license to experience this on my own terms, but being reminded that when I start to feel guilty, it really isn’t fair to myself or those around me, have both been so helpful in helping me navigate the sea of emotions that sometimes feels like it is going to drown me.

Thank you for reaching out- I find myself clinging to the knowledge that I’m not alone in this and that so many have fought this battle before me and are willing to give their time, advice, encouragement, and knowledge to total strangers who share this common bond

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Sep 13, 2021 07:43AM BCinfoseeker wrote:

My surgeon - who’s wonderful btw - biopsied the two smaller masses. The third was larger and spiculated and she was emphatic that it was cancer. When the path report came back negative, I was elated (and partied like 1999) but quickly agreed to a lumpectomy and scheduled for 5 weeks later. She had prepped me early on that she’d likely recommend mastectomy x2 but this seemed like a lifeline to get rid of the critters without major surgery. Now I think we’re going to radiation, but my lymph involvement still needs to be determined. Even though it’s cancer, my margins were reported as clear.

Each of our cases in cancerland (where none of us want to be) are medically different but there are such similarities. Probably number one is emotional- that we feel the same numbing terror especially at this point in the dx process. I DID NOT KNOW my dx from May 27 until September 2 so that numbing terror has ebbed and flowed this whole summer. In some ways I was more prepared but I behaved in ways I would not have with a cancer dx on/after July 20.

Here’s hoping you having a straightforward, accurate dx no matter what it is, and that if needed, a treatment path will be well worn with many success stories before you! In some ways, that’s what we really need! Hugs

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 14, 2021 03:48AM Jen2957 wrote:

BC Infoseeker- your phrase “numbing terror” certainly resonates with me. I told me husband not 10 minutes before reading your post that I was feeling “everything and nothing” all at once. It’s the most bizarre state of being- both emotionally and intellectually! The support and stories so many of you who have walked this road before me are sharing is really helping to keep my head above water right now and I cannot express my gratitude enough. There is no “just put it out of your mind” at this stage, and maybe at any stage, I guess. This is where we live now - in this surreal, parallel universe of existence where we are all just trying to manage whatever comes next. I see from your info that this all very fresh for you as well- I will be sending good vibes and positivity for you as you continue your journey of healing!

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Sep 14, 2021 08:37AM BCinfoseeker wrote:

Jen - sounds like your hubby is very supportive. That’s good! We’re kind of at the high emotion stage of this. A lot of learning - all the new words and acronyms and concepts! Plus the mental shifts, and a lot of hurry up and wait too. It can be draining and depressing, though about 90% of the time I’m pretty normal. My husband is doing most of the emoting for us; I’m just business-like with my spreadsheet diary, numbered documents and spanking new expandable folder to hold it all. To me it’s almost like an annoying task that just needs to be dealt with. That’s frankly how I’m coping and feeling like I have at least a modicum of control. Now that I’m nearly 3 weeks out from the surgery, we even went dancing the other night. It was great!

Today for me was a good day. I met with the medical oncologist (MO) who gave the news that my mammaprint results came back as low probability of the cancer returning in 5 years or less. Because my sentinel node wasn’t biopsied as it normally would have been in a lumpectomy, I am getting a CT scan this week which will or won’t show spread. If it shows any spread, I’m already planning to opt for BMX. If it’s negative, then another surgery to biopsy the sentinel node. And depending on what those results are, I may do BMX, or if indicated, no additional surgery and do rads. At some point, hormone therapy will also happen. So the focus is sharpening and the paths are getting clearer.

So for now, I’m just trying to cope by being as normal as possible, though I’m not drinking my usual glass or two of wine everyday and I’ve cut out sugar, legumes, Omega-6 oils and grains from my diet. So that’s a whole new world lol! Plus I work from home and go to the barn where my two horses are. That is my real therapy and a way to forget everything.

My advice is to treat this time now as a period like just before childbirth - go to movies (if it’s safe pandemic wise), take a short trip between appointments, visit with family - whatever gives you pleasure! If there’s a storm of bummers coming your way, you’ll look back on those moments happily. If there isn’t - all the better and then you can really celebrate!

X

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 14, 2021 10:00AM AliceBastable wrote:

Mine was Birads 5 and it turned out to be cancer. It didn't freak me out because I figured I knew from the start and didn't have to go through any "what if" phase. I found the best way to occupy my time between appointments and tests was to do fun things, which for me meant heading for state parks for picnics and whatever walking my wobbly knee would allow. I didn't want to set myself up to look back and just have memories of the medical stuff during that time.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/28/2018 Whole-breast: Breast, Lymph nodes
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Sep 17, 2021 02:15PM Jen2957 wrote:

Alice Bastable: There is definitely something to be said for getting the shock factor out of the way up front. I am so happy you were able to get out and do things you enjoyed during the “in-between” times. I had a similar kind of epiphany toward the end of the first week after I got my initial report- I thought, “If I get really sick and weak, I am going to be so angry with myself if I look back and see that I wasted these days when I felt healthy - especially if I wasted them sitting around worrying about being sick!”

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Sep 17, 2021 03:09PM Jen2957 wrote:

BC Inforseeker: Hooray for some good news!!!!! I hope the CT scan results are similarly positive! I will be thinking of you and eagerly waiting to hear your news.

I cracked up at your expandable folder! I am a former high school English Teacher and Department Chair, so I had binders for “all the things”. Within two days of my BIRADS report, I had set up a shiny, new BC binder with color-coded, tabbed dividers. Lol. I guess it really is, as you said, a way to create some semblance of control! My husband is a civil engineer by education and even though he works as the exec of a state trade organization, he is absolutely the quintessential engineer problem solver; he never reacts until all of the data is in. I, on the other hand, am actually a very logical thinker and need to learn everything I can about every aspect of whatever situation I’m dealing with, but while I can calmly research and run through and plan for every possible scenario that could be coming, I cannot turn off that emotional switch for long before I have a random meltdown at a completely illogical time.

I grew up barrel racing - my 76 year old dad just sold his last horse this last year, but had been a very successful rider and trainer for over 50 years. Being around them has always fed my soul, so I know exactly what you mean by it being your therapy! We have two 225 lb goats (Oliver and Captain Amerigoat) who thinks they are dogs and two wonderful Border Collies (a 13 year old and an almost 2 year old) that keep me entertained and laughing even when it’s the last thing I feel like doing. I love to have a glass of wine when I cook dinner and I haven’t cut that completely out just yet. I figure I will allow myself that indulgence for now, but know the day may soon come when I will likely need to make that change.

Take care and keep us posted!

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Sep 18, 2021 02:26AM BCinfoseeker wrote:

Hey Jen --

I posted a reply a couple hours ago but don't see it (oddly) though I see something else I posted afterwards, lol. Anyway, yes yes yes get out as much as you can now. Plus I think I need to up my game and color code everything hahaha. And horses are the best though every animal is just 100% awesome. We'll have to share pics of our animals :) I love riding western and I go to Montana every year to blast though the forests and flats and climb mountains and cross rivers. Here are home though, I ride dressage - or as I call it, going around in circles badly.

I hope your biopsy went well the other day; did you have it? Please keep us informed. Once you get your path report you will know A LOT more. One thing my MO said that made me feel a lot better about the multifocal bit is that eventually the disparate masses grow together to form a larger one. So that means it was caught earlier than that. I don't want to say "caught early" - because we don't know that. So let that kind of ease your mind.

Have a fantastic weekend xoxo

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 18, 2021 04:03PM Jen2957 wrote:

I did have my biopsies Thursday. They were able to do all four, so I was happy about that. I am currently icing the most abused side because it is still swollen and a bit more sore today.

Oddly, the only mass on my left side- the 4 mm little guy- was an absolutely BEAST to biopsy. The doctor absolutely could not get through the breast tissue bc it was so incredibly dense in that area. I watched the ultrasound throughout all of them and on this particular one (the first one she did), I worried that we would ever get a sample, but she man-handled everything into submission and, I almost cried with joy when she said that one dissipated when the needle went in. She said it looked much more cyst like that day than it had before. Fingers crossed, that may give me one clear breast. I’ll take every victory I can get!

The right breast had three and they were also difficult to biopsy through the dense tissue, but not nearly as difficult as the mass on my left. There was a complex cyst with some solid tissue in it that was partially obscured and a bit of air was not cleared when she went to inject more xylocaine, which caused it to be more obscured, so I don’t know how it behaved when biopsies. I was hoping it would mostly dissipate, too. The other two masses still looked highly suspicious and I’m confident she got good samples from them.

NOW…for the kicker!!!!!! I asked the radiologist which specific characteristics caused my mammo and ultrasound to be BIRADS 5 and she said, “Well, actually, at this hospital, our system doesn’t currently allow us to divide category 4 into a, b, and c subcategories. We can only choose the whole numbers. So I would have used 4c, but since it wasn’t an option [and the masses were so highly suspicious], I rated it a 5.” Now, I realize that the rating doesn’t change a thing as far as what is living in my body, but that BIRADS 5 rating packs a huge gut punch with very little room for any hope whatsoever. 4c’s 50-95% is very different from 5’s >95%! In my case, my cousin had a BIRADS 4c, was introduced to an oncology nurse, and they were all but certain her mass was malignant. It was not. The two weeks between imaging and biopsies would have still been stressful and scary, but I feel like I would have had a little more room to breathe some days.

Nonetheless, we are past that now and I am expecting pathology reports next week. They will go to my doctor (texted to support me multiple times the day of and the day after my biopsies) and she said she will call me the moment she receives them.

Thanks so much to everyone for sending any good vibes, prayers, thoughts, or energies my way. You have all already been amazing!

BC Inforseeker- We absolutely need to share our animal pics! Always good for the soul!!!

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Sep 20, 2021 09:20PM BCinfoseeker wrote:

Hey Jen --

I also iced the sh*t out of my boob after both the biopsy and lumpectomy and it really helped. I didn't have real pain after either procedure; just some soreness. I wasn't given the option to watch the biopsy or I surely would have! My husband did though lol. Even though it biopsied as negative, I do know that it was performed correctly because the pathology report for the lumpectomy showed the missing sections in the dissection slices.

All of the news sounds really reassuring for sure. It sounds like you are really being supported by your doctors which is fantastic. Report back with your results!

xoxo

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 24, 2021 05:29AM Jen2957 wrote:

Well, the results are in as of this afternoon.

The one lesion on the left breast was from benign, fibrocystic changes.

One lesion on the right- the larger of the three at 10 mm - is a prior ruptured cyst with chronic inflammation. No atypical findings.

The two other lesions were confirmed as IDC. Both the 7mm and the 9 mm lesions are listed as “Invasive Ductal Carcinoma, Nottingham combined histologic grade 2. Associated intermediate grade ductal carcinoma in situ

Both malignant lesions are ER+/PR+ @3+ intensity and both are HER2- @1+ intensity

So…a little farther down the rabbit hole we go! I assume things will happen very quickly over the next few days and weeks. I would love to hear any tips for helping me become as informed and organized as possible to prepare for the options I will be presented. I have a binder I’ve been trying to keep everything in so far. And I have been reading some of the relatively recent new studies that have analyzed treatment options for various situations and whether there is a significant difference in outcome for certain combinations.


My biggest question for all of you who have “been there, done that” is, “what thing or things do you wish you would have approached differently and why?” I find such comfort in the supportive, but REAL discussions in this group and apprecaite as much insight as I can get

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Sep 24, 2021 07:45PM LivinLife wrote:

Best when you get results BC!

Jen, sorry to hear about the IDC! Hoping you get an effective plan you're comfortable with and that you're comfortable with your team! Both are really important! So if you're not already checking out the IDC forums do so - you'll get helpful info and support from folks who are dealing with IDC..... Best to you!

with expansive comedo necrosis & weak ER/PR Dx 7/2020, DCIS, Left, 2cm, Stage 0, Grade 3, 0/1 nodes, ER+/PR+ Surgery 8/31/2020 Mastectomy: Left; Prophylactic mastectomy: Right
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Sep 24, 2021 08:20PM Beaverntx wrote:

Jen, also read the IDC and treatment information on the BCO main site. I found the main site extremely helpful when this was all new to me.


Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 27, 2021 05:06AM BCinfoseeker wrote:

Oh Jen I am so so sorry to read this :( A club none of us wanted to join but here we are.

After my dx, I spent a couple of days shell-shocked - I downloaded this PDF (scroll down to see link), printed it, got out the pathology report, took a deep breath, and filled it out. It took me a couple of hours to feel like I understood what the terms meant and their implications specifically for me, but it helped me immensely. If you haven't done it, I highly recommend it.

Good news for you as I see it: it's still localized to your right breast. The lesions are still small and haven't "joined". The grade 2 means its a "middle" speed growing. ER/PR+ means it can be treated with hormone blockers/inhibitors. HER- is good. So while cancer is never good news, so many others have more concerning dxes. You might still be waiting for Ocotype or mammaprint results - check to be sure that something like that is still coming.

I don't think you could have done anything different thus far. Everything upcoming will matter.

You already know my story of not yet having my sentinel node biopsied - DO NOT MAKE THAT MISTAKE lol. It's standard of care to get it now that you are dxed, but just saying.

If there is a nurse navigator or just someone you can reach out to with questions and concerns at your practice, do that - especially do it online as you will have a record of communication.

Get as many of your test results yourself so that you have them. Sign up for the online health portals for your cancer practice and the imaging companies that provide results - you can sometimes see them before they are provided by your physicians.

Start a diary if you haven't. My spreadsheet has everything, including questions I want to ask, the names/contact of all of my doctors and staff, all communication and appointment notes logged, even my recent flu shot and shingles vax info. Again - perfect for type A control FreaksRUs.

If you have cancer in your family, get the genetic testing if you can - beyond BRCA1 & 2. Because of family history, I got it done and thankfully, no cancer genes of the 150+ searched tested positive. That informed my decision to do lumpectomy vs double mastectomy even though I had a negative initial biopsy. I'm not sorry I did lumpectomy even with my new cancer positive dx. I can always opt for more surgery if indicated.

When is your next appointment??

Dx at 61. Three masses detected right breast; Bi-Rads 5. Initial biopsy false negative. Lumpectomy pathology: Multi-focal IDC. Surgery 8/27/2021 Lumpectomy: Right Dx 9/2/2021, DCIS/IDC/IDC: Cribriform, Right, 1cm, Stage IA, Grade 1, 3/0 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy Arimidex (anastrozole) Surgery 11/17/2021 Mastectomy: Right; Prophylactic mastectomy: Left
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Sep 28, 2021 05:47AM Jen2957 wrote:

BCInfoseeker, I have no doubt we are cut from the same bolt of cloth and that the bolt was ordered from a very organized warehouse with neat, visible labels on each bolt. Haha

I have researched until I feel like I could do a Ted Talk overview of studies and at least not get booed off stage. 😆 I am an avid learner and enjoy knowing about all the aspects of a particular subject; this one’s been tougher for some reason. Maybe my age? I feel like I’m in a sweet spot as far as that goes, and it’s difficult to acknowledge the real possibility that this disease will ultimately catch up with me when I am still relatively young and otherwise healthy. I have to work through that stuff, I know. The “in between time” has definitely given me time to get myself moderately educated on the myriad pieces of this big, craptastic puzzle. I felt that part was imperative bc I will probably be operating on very little bandwidth during my surgical consult- I don’t need to have to translate terminology while also processing the actual surgical option information. I’m not sure Ive ever had this much information for any topic since grad school!

Haven’t spoken to anyone about Mammoprint or OncoDx yet. Hoping that conversation will occur Friday. (I found out today that my surgical consultation is this Friday). I am also going to push for lymph node analysis. Mine were pathologically clear on ultrasound, but that is certainly not fully reliable, and it’s like I can just imagine those stupid cells whisking themselves right into those nodes.

I may steal your spreadsheet idea. I LOVE spreadsheets and used them all the time for data reporting when I was still teaching. May be time to break the ole Excel back out for a while. I added a Billing section to my binder so I could keep up with what the costs are, what insurance has paid, what is pending, what I truly need to pay AFTER insurance, etc. A spreadsheet would be great for just that section.

I believe I am also going to set up an appointment at another hospital (first appointment at The Markey Cancer Center in Lexington, Ky at UK) for a second opinion. That will be at Norton Hospital group in Louisville, KY. We love almost exactly equidistant from each, so neither team would be more or less convenient to see. It is overwhelming to consider going through this part of the process twice, but I feel like I will likely be glad I did so later.

thanks again to each of you for your amazing support. I invariably feel better after checking in with all of you

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Sep 29, 2021 03:40AM - edited Sep 29, 2021 03:40AM by wondering44

@Jen2957

I got second opinions from the breast surgeons, medical oncologists, and radiation oncologists. Lots of appointments. Glad I did it. I found the treatment plan I wanted was with a mix of doctors from two hospitals and opted to do different parts of treatment at two different hospitals with the doctors I worked with the best. Really has made a difference in my level of comfort and level of care.

Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/3 nodes Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/3 nodes, ER+/PR+ Radiation Therapy Whole-breast: Breast, Lymph nodes

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