Birads 5 with calcification
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@illimae Thank you much for this. I really needed to hear it. Everything you said: the overanalyzing every little symptom, the panic spirals, the feeling like death is around the corner… it all resonates so much right now. It’s oddly comforting to know that what feels like chaos in my head is actually a really common and normal reaction.
Your story about your thumb made me smile. It’s such a perfect example of how our minds go into overdrive when everything feels uncertain. And I appreciate your honesty about those early days and how intense they were for you. Knowing that you are years past that stage and able to laugh about some of it gives me a little thread of hope to hold onto. I’ll be so glad when I’m over the hardest part.Sadly, I know I won’t be the last person to hear the words “you have cancer”. But I hold onto the hope that 15 or more years from now, I might be a source of comfort to newly diagnosed, frightened mother. Or maybe (just maybe) by then, there’ll be a cure. Wishful thinking, I know.
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Lisa, My tumor was grade 3 with one positive node but ER+/HER2-. At the callback it was probably DCIS and developed into IDC over the next couple of years. While there are similarities everyone’s situation has unique twists and turns. The unknown is scary because we imagine the worst possible scenario but when you know what you are dealing with and are moving forward with treatment the fear fades some. The shock of finding out you have cancer knocks you over but you get back up and come to terms with it.
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@maggie15 Interesting! I wonder if something similar happened to me. As I mentioned in my original post, there are two tumors: one is a cluster of calcifications, and the other (the main concern) is a tumor with its own blood supply. The biopsy results show that the cluster of calcifications is DCIS, while the other tumor, the one they were more worried about, is IDC. According to the report, both tumors have originated from the same cancer.
I hope I’m explaining this clearly. I still have a lot of unanswered questions, though. I haven’t had a thorough discussion with my breast surgeon about the biopsy results yet. just a brief phone call when he shared the news, which I had already partially received by prematurely opening my report online. I have an appointment on Tuesday, so I’m hoping to get more clarity then.
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I received another call from my breast surgeon’s office today, as expected. They’ve scheduled me for two out of three upcoming appointments. My first appointment with the oncologist is on the 11th, and they’ve set up another ultrasound to check my lymph nodes on the 17th. Once my insurance approves it, they’ll schedule a breast MRI.
I wanted to get your thoughts on the timing of all this. I understand these things can take time, but I can’t help but feel that some of the delays could’ve been avoided. If my primary care doctor had taken my concerns seriously from the beginning, maybe I could’ve had a biopsy done at the same time as my initial mammogram and ultrasound instead of waiting for the results to confirm what I already suspected. The same goes for my breast surgeon. I told him the lump felt attached to my chest wall, but he dismissed it. If he had taken that seriously, maybe I could’ve had the MRI done alongside the biopsy.
It’s been almost two months since I first sought medical attention, and only now am I seeing an oncologist and getting tests for things I pointed out from the start.
I live in Tuscaloosa, Alabama, which is a smaller city about an hour from Birmingham. Am I overreacting in feeling frustrated with how things have been handled? Or would this situation make you consider traveling farther for more attentive care?
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Hi Lisa, I’m sorry that things are moving slowly. Rural life is great but rural healthcare not so much. Mind you, Tuscaloosa is a big city compared to Elkmont AL where I used to live. UAB is a national cancer center of excellence and it might be worth getting a second opinion (and transferring your care) there. They would have better imaging equipment, more specialized doctors and access to clinical trials. I wouldn’t cancel anything local just yet, however. Get CDs of any imaging to bring to UAB if you decide to get an appointment there. Insurance should pay for it if you specify it is for a second opinion.
I now live in rural NH but travel 3 hours to Boston for anything medically important. My local hospital is the only medical facility within an hour’s drive so I keep my PCP there even though it takes several months to get a family medicine appointment. I hate to generalize since my PCP in Decatur AR (population 707 as opposed to big town Decatur AL) was awesome. After a missed bc diagnosis for two and a half years as well as an incorrect biopsy path report I decided to ditch the single oncologist and three general surgeons for a breast cancer center in a teaching hospital. I’m typing this in Boston where tomorrow morning I have an appointment with a retina specialist to whom I was referred by the local ophthalmologist. The two medical systems do work with each other. They both use EPIC so doctors can read each other’s notes and test results. I get copies of imaging on CDs since the two systems don’t have access to each others’ imaging libraries. I’m grateful to have the option for medical care near home and the local doctors seem happy to have specialists take over when problems are no longer routine.
Don’t worry about hurt feelings since your health is more important.
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@maggie15 Wow, I’m honestly shocked to hear that you once lived in Alabama! I would’ve never guessed that. what a small world. It’s really comforting in a way to know someone else understands what it’s like trying to manage health care from a rural area. I couldn’t agree more with what you said. rural life has its charms, but when it comes to medical care, it’s a different story entirely.
I knew their specialists were more experienced. But I was completely oblivious of the fact that UAB has better imaging and more access to clinical trials. Thanks so much for that information. I hate that I didn’t start my care in Birmingham right from the beginning. I think I underestimated how much of a difference it could make. Waiting this long to consider transferring was definitely a mistake, but I’m hoping it’s not too late to make a better choice going forward.
Completely off subject. But did you have a soft lump near your tumor after your biopsy?
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@lisat8228 , I also had a soft lump after the biopsy. It was a hematoma caused by the core needle biopsy gun. I put small ice packs in my bra and eventually got freezable nursing pads since they fit better.
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@lisat8228 Im not sure if this applies to everyone but in my case, I had my breast mammo, ultrasound and biopsy done (at Methodist), then was referred to a breast surgeon. I think checking lymph nodes and anything beyond that comes from a different group within the hospital.
Will you find out your HER2 status today?0 -
@illimae That’s why I’m feeling so frustrated. I’ve even seen several women mention that they had their mammogram, ultrasound, and even biopsy done all in the same day. In my case, everything feels drawn out. they keep waiting for one result to come back before scheduling the next step, even when it seems like they could’ve checked everything during the same visit.
When I had my mammogram and ultrasound, the technicians clearly saw a highly suspicious area before I even left. If my doctor had ordered a biopsy at that point, I could’ve had it done right then and there. Instead, I was referred to a breast surgeon just to get the biopsy ordered.
Now, I’m waiting for yet another ultrasound this time to check my lymph nodes even though I’ve already been on the ultrasound table twice. It’s hard not to wonder why they didn’t just look at them during the earlier scans. I don’t know if it’s due to inexperience or something financial. In these smaller, rural areas, it’s hard to tell. Honestly, it wouldn’t shock me if they’re splitting up the imaging just to squeeze more out of insurance. Maybe I’m overthinking it but it’s hard not to feel that way.
Hopefully I will receive my Her2 status today. I’m definitely going to ask. I wonder why it didn’t post with the rest of my results?
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I had my mammo on a Friday and had to come back the following Tuesday for the ultrasound and biopsy with results on Thursday. I then got into MD Anderson the next Wednesday and had to do it all again with their equipment and techs and they checked my lymph nodes at that point, I don’t think that is typically done with the diagnostic breast testing.
If I recall correctly, HER2 is tested by IHC or FISH tests and may take a bit more time due to the specialized method. About 20% of breast cancer is HER2+ but it is more common in younger people and grows fast but shrinks fast too, once it’s treated.
If you have any questions about the medical vocabulary or process, just let us know. I remember having tons but forgot nearly everything in the doctors office because I had too much info to take in.0 -
@illimae That sounds so reasonable! You got your diagnosis in less than a week, which is amazing. I’m still trying to understand why mine took a month and a half. I’ve decided to trust my instincts and travel farther for better care. @maggie15 also gave some great advice about getting my images on a cd . I’m going to keep my local appointments for now, at least until I get everything set up at the larger hospital an hour away. My breast surgeon already told me that if I’m not happy with the oncologist they referred me to, I can switch, which I was planning to do anyway.
From what I’ve read (and heard from others), it seems like receiving care at a dedicated breast cancer center or hospital is more effective than seeing a solo oncologist. That’s definitely influenced my decision.
I’m actually on my way to an appointment with my surgeon right now. Thankfully, I’m not too nervous since I’ve already seen the results. Interestingly, I got a text from the radiology clinic today saying I have another appointment scheduled for tomorrow. I’m guessing it’s for the breast MRI, l the one I’ve been anxiously waiting on (I’m terrified). I assume my surgeon will confirm the time during our visit today.
I really appreciate all the advice from this group. Without it, I feel like I’d be going through this whole process completely in the dark. Grateful for you all! 💖
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Best of luck today!
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@lisat8228, The doctors at these small hospitals are “jacks of all trades but masters of none” by necessity. At my local hospital one oncologist treats everyone with cancer and couldn’t possibly be up to date on everything. It takes forever to get appointments and scans because there aren’t enough doctors and the same few imaging machines are used by all departments. The cancer care at small hospitals is better than nothing for people who can’t go elsewhere due to insurance restrictions or inability to travel but getting care at a large hospital with a dedicated breast cancer center can improve your outcome.
HER2 results can take up to three weeks if a sample is sent out to a large hospital for a FISH test. Mine was done in house and took about 10 days.
I hope your appointment today goes well and you get the MRI soon.
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@illimae @maggie15 My appointment today went well. it was mostly just talking. He checked my biopsy scar and reviewed my pathology report, just as expected. I have to be at the hospital tomorrow morning at 8:00am for my breast MRI. I’m feeling pretty nervous about it, especially because my breathing has felt off lately. It’s not exactly shortness of breath, I can take deep breath just fine but it’s more like I’m breathing in thick air through my nose. I’m scared they might find something on my lungs. I’m hoping it’s just anxiety.
I’ve also had an on-and-off headache for the past three days, which could also be from stress. I’m also still dealing with leg cramps in both legs. I’m trying not to read too much into it, especially since it’s affecting both legs, not just one but honestly, I don’t know what to think.
I’ve read so many stories from women who were diagnosed with breast cancer, and their symptoms were more “textbook”: a lump, stabbing pains in the breast, skin changes, arm pain, maybe a backache. Then there’s me, with symptoms that feel more like signs of something metastatic. I know I’ve mentioned this before, I probably even sound like a broken record but mentally, I’m all over the place. One moment I’m trying to stay positive, but then the breathing issues or the cramps remind me of the possibility of something more serious. They’re not severe, but they’re persistent, and it’s hard to ignore. I just overall don’t feel well at all.
I did bring up my anxiety with my breast surgeon. I’ve never been on any kind of medication before barely even birth control and that was briefly over a decade ago. I’ve always avoided meds, but right now, I’m just desperate for peace of mind, even if it’s medically induced. When I’m home, especially at night, my thoughts spiral. I’m only getting about 4–5 hours of sleep, and I’ve spent many nights crying, overwhelmed by fear of what could happen, and thinking about my kids.
Interestingly, my surgeon said I seemed very calm today and appeared to be handling it well in comparison to a lot of others and believes I’ll be fine without anxiety meds. He reassured me that what I’m feeling is normal and that it should improve once a treatment plan is in place. He’s hesitant to prescribe anything right now out of concern that I might become dependent on it.
So I wanted to ask: what are your thoughts or experiences with anxiety or depression medication? Do you take anything? If so, what kind? Has it helped you cope? Do you feel it’s made a difference in how you've managed this journey?
ps: Her2 status is still pending.0 -
@lisat8228, I didn’t need anything for anxiety but that might have been different if I had young children like you do. Women who have mentioned getting meds for anxiety usually have them prescribed by their PCP. It’s true that knowing what you are dealing with and having a treatment plan in place makes things better but you should consult your PCP if the anxiety persists.
It’s not unusual to blame strange symptoms on cancer but often there are other causes including stress. When I was diagnosed I was on IV antibiotics via a picc line for an infected jaw bone so I attributed anything abnormal to that.
I’m glad you are having the MRI tomorrow since it will add more clarity to your situation. I hope the news is good.
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@lisat8228 Like @maggie15, I don’t take anxiety meds either, except for the day of brain radiation, which had been 7 times in 8 years. It’s true that once you have a plan and get started, patients usually find an acceptance and determination that allows us some control in the chaos we experience in the diagnosis phase.
Of course there’s absolutely no shame in taking something to help with anxiety, I just personally don’t like taking pills and quickly realized it wasn’t necessary. Honestly, humor got me through a lot of difficult situations. It may seem like there’s nothing funny about cancer but I actually had a little fun with it. Here’s a pic of me during the “uncle fester” part of chemo.
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@illimae This is absolutely hilarious! You’ve truly perfected that expression. it had me laughing out loud. I hope I can get to that level soon. You ladies have honestly been such a lifesaver. Not only do you listen to my ramblings without judgment, but you also offer incredible advice and throw in a few great laughs along the way. 😂
My doctor was genuinely shocked at how much I knew during our discussion about cancer, the pathology report, and what to expect next. I told him I’ve been learning so much from the amazing women in this support group. He was smiling in disbelief, clearly impressed.
I know I’ve got a long road ahead, and I’m sure I’ll have countless questions as things progress. Hopefully I won’t get on your nerves too much along the way @illimae @maggie15 😅
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Lissat8238, you are receiving such amazing information and support from Illimae and Maggie. I am so glad they are there for you. I just want to address your doctor’s response about anxiety meds. “Appearing calm” is not even close to a method for assessing anxiety. I think of the hundreds of times I have handled a face to face appointment only to fall apart an hour later at home. Addiction to these meds is a real issue, but when used carefully, they can be a life saver. This is likely the highest anxiety period. You won’t necessarily require them except for specific periods later on. I would ask to see a therapist and express your actual anxiety along with fears of becoming dependent on medication (if that is a fear you share with your doctor). My psychiatrist, who specialized in cancer, assured me he would not allow me to face dependency. He got me through such a difficult time. Safely. I am not promoting medication, but want to express how they can be safely used during such stressful times. Be kind to yourself and take advantage of whatever can safely get you through this difficult time. At the same time, I think you are amazing at how you are using supports here to help you. But if you feel you need more, it’s your decision. Take care.
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Good luck this morning! Hopefully they don't make you wait too long for results. I was also going to suggest you check out this group I belong to on babycenter. Not terribly active, but you can follow people's stories from diagnosis through treatment. These ladies got me through treatment 5 years ago. Support groups are the best!
Here's mine if you ever have some serious time.. lol
https://community.babycenter.com/post/a76306592/newly-diagnosed-with-invasive-ductual-carcinoma
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@tb90 Thank you so much for your advice about the medication. your insights were really helpful. You made a great point about how it’s possible to hold it together during face to face conversations, only to fall apart once you're alone. It’s starting to become the story of my life. When I told my sisters the doctor said I seemed to be handling everything well, they laughed and said, “Maybe you should’ve let us talk to him so we could tell him how bad you actually carry on” lol
Even though it doesn't always feel like it, I can see that I've already see slight improvement. In the beginning, I was crying every single day, all day long. Now, there are actually some days when I make it through without crying at all. It’s still heavy, and I carry it with me constantly, but I can see progress.
I’ve decided to hold on a bit longer to see if things start to ease up once treatment begins. I've heard that from this support group, my surgeon, and even some lovely nurses I spoke with today during my MRI. So I’ll hang in there for now, and it helps knowing I can still take advantage of the resources available if I need them.
Part of me worries that even if I beat this, I’ll never be the same again. that I’ll live with this underlying fear and anxiety for the rest of my life. But who knows? I guess I just have to wait and see how things unfold. I appreciate all the kind words and advice! It means so much to me ❤️
@scaredme thanks so much for sharing that group with me. Turns out, I already had an account and just had to log in a join the breast cancer support group. I just did. The more support the better. I appreciate it ❤️
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My MRI results just came in on my patient portal, but I’m honestly too scared to open them. I’ve decided to wait and review them with my oncologist tomorrow. Lately, it feels like every other day brings a new test result or another appointment to be anxious about. I’m really trying to stay positive, but this is incredibly difficult.
I now understand why some people give up or choose to ignore their symptoms, facing something this overwhelming takes an unbelievable amount of strength. Dealing with a cancer diagnosis feels like living through a horror movie in real time.
There are ways to cope with many of life’s hardships, losing a job, a home, struggling to conceive, or financial stress. As hard as those are, life still moves forward. But when you’re staring down something like cancer, a true life or death situation that no amount of money can fix, it’s a different kind of fear altogether. Someone compared me having cancer to their experience with menopause on yesterday. Although, she meant good and her intentions were only to comfort me, I couldn’t help but think that that the 2 is no way comparable. It’s the most helpless, gut wrenching feeling I’ve ever experienced.
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I’m not sure if this is allowed. But I saw this TikTok and I thought about us! It’s the best way to sum up this entire experience
https://www.tiktok.com/t/ZT6R8Dg6C/
try copying and pasting it to your browser. It’ll give you the web version and you can listen from there.
The women in this group are the beautiful ppl on that side of the door with me. I truly appreciate y'all from the bottom of my heart ❤️
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I am amazed that you have the strength to not read the info on your portal!! It's definitely the best decision, but I'd have a very hard time not doing that!! Glad you will be able to find out the results sooner rather than later.
I honestly wish I had never read my pathology report. There are some things that you can never forget!
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Hi @lisat8228, Waiting to review your MRI results with your oncologist will lessen the stress and allow you to get your questions answered immediately. You may also get some sleep tonight.
A cancer diagnosis can’t be compared to any of life’s other difficulties and it’s unfortunate when other people trivialize it. You still don’t know exactly what you are dealing with but whatever happens you will be able to cope. I would never speak for anyone else but on this site I see people with all kinds of diagnoses and side effects from treatment focused on living the best life they can given their circumstances.
I hope your appointment tomorrow goes well but if you get indeterminate or not so good news you can handle it. (((Hugs)))
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@lisat8228 One really odd thing about a cancer diagnosis is that we’re stopped in our tracks but life still moves forward for everyone else.
Thinking of you and wishing you good luck today.0 -
Thanks so much for keeping me in your thoughts @illimae @scaredme @maggie15
Today’s oncology appointment went pretty well. finally some good news (at least for now). My MRI results came back and my oncologist said the tumor isn’t very deep. It’s just barely starting to irritate the first muscle layer, but that’s as far as it’s gone. They also checked my underarm lymph nodes during the MRI and didn’t see any signs of cancer there (though we’ll get full confirmation later).There are still a few lymph nodes near my collarbone that the MRI didn’t scan, those need to be checked. Hopefully they back clear too. The good news sounds like a relief, but I’m trying not to get too ahead of myself.
My oncologist ordered a PET scan to double-check everything and make sure the cancer hasn’t spread anywhere else. So my relief is short-lived until we get those results. Hoping the aches and pains I’ve been feeling are just from normal causes. Still waiting to get that PET scan scheduled (anxiety reactivated 😭)
If the collarbone lymph nodes and PET scan both come back clear, she thinks I’ll likely just need radiation and a mastectomy, no chemo.
P.S. My HER2 status is negative.
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Hi @lisat8228 , I’m glad the MRI provided good news. Every new scan brings some anxiety with it but having the PET will give you peace of mind. Things aren’t set in stone until after the surgical pathology but so far they’re better than you imagined. Hopefully they’ll stay that way.
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@maggie15 Thank you so much. Your words really mean a lot. You're absolutely right, each scan does come with its share of anxiety, but hearing encouraging results helps ease the weight. I’m holding onto hope and staying grounded until the final pathology. Grateful for the support and perspective. It truly helps more than you know. I know I keep saying “thank you”. It may sound repetitive but I truly mean it without you all, I wouldn’t have stayed above water or made it this far without ending up in a psych ward 😅
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@lisat8228 Yay for the good news! I know more testing is more anxiety but I’m happy they are being thorough and it’s great to have a solid baseline. You also won’t have you mind racing as much since you’ll know everything going on in your body with confidence.
I must admit to being stumped on the HER2 results. If you’re triple negative, then I wonder what caused the seemingly sudden growth that brought this to your attention in the first place?
I’m happy for you, you deserve a break and some rest.0 -
@illimae Thank you again. your kindness and support seriously helped lift my spirits. My ER receptor came back positive, but PR was negative. Does having both PR and HER2 negative automatically mean it's triple negative? I really hope that's not the case 😭😭.
I have my own theory about the lump, and I’ll do my best to explain it. Thirteen years ago, I had a breast reduction. At the time, I weighed about 130 lbs and wore an F cup. My surgeon removed about 2 lbs from each breast, which brought me down to a C cup. I was told clearly that my milk ducts had been cut during the surgery, and that I likely wouldn’t be able to breastfeed since the ducts were no longer connected to the nipples, there’s no way for milk or any other fluid to pass through.
Fast forward to now, 13 years later, and I’ve gained a significant amount of weight. I now weigh 245 lbs, and my breasts have grown with the weight gain. They’re no longer a C; they’re a DDD. From what I’ve read, severed ducts don’t necessarily expand or regrow with breast tissue, which might explain why my lump is located so deep in the tissue, near the chest wall. It could also explain why I haven’t had any nipple discharge, dimpling, or inversion because my ducts aren’t connected to the nipple anymore.
I really think the lump may have been there for a while, but because it’s so deep, it’s hard to detect without pressing firmly. That’s why I’m freaking out so bad. Because idk how long it’s been growing. I just lucked up and felt it.
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