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Surprise upgrade of benign radial scar to IDC grade 1 t1b

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Hi all,

I am a new member of this club and I am glad I found this forum. Brief history about my case: I was diagnosed with radial scar during routine mammogram. When a core needle biopsy was done it came back as benign but my doctor insisted on getting a lumpectomy. Now my doctor called me and told me that actually they found a tumor - 5.5mm IDC grade 1 , ER and PR +. Don’t know the stage yet and I have to get sentinel biopsy scheduled. I am having complete emotional breakdown and can’t wrap my head around anything.

Just totally lost…

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Comments

  • moderators
    moderators Posts: 7,913
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    Welcome, @ichan. We're so sorry you're here, but we're glad you've joined out community. We know that this is all so overwhelming, but we're all here for you.

    Our Just Diagnosed and Just Diagnosed and Waiting for Results forums are great resources for these early days and weeks. We know there's a lot you don't know yet, and you'll have questions and concerns and need guidance on how to navigate the initial stages after a diagnosis. There's a lot of info and resources in both of these forums, and members who you can connect with for support, now and as you continue through this.

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 164
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    Dear @ichan. I’m so sorry you just received such a “surprise”!! Many of us can relate to your feelings of shock and it being surreal. Everyone reassures us that is a normal reaction - it takes a while to absorb and process the news. Going from “benign” to IDC is a lot to wrap your head around!

    It might feel like there’s no possible good news in your diagnosis … I was told having early stage IDC that is ER/PR+ is a good thing, and is very treatable, I was going to live and be just fine. It didn’t feel so good to me at first (mine was 1.5cm and ended up being stage t1c, grade 2). At first all the letters and numbers didn’t mean a thing (IDC, t1c, ER/PR+, grade, etc) and that was part of what made me feel so overwhelmed! But gradually I’m learning what it all means and am feeling more in control.

    Of what you have for information so far, your stage is stage 1 (t1b) and that’s because of the small size (5.5mm) and being Grade 1 shows that it is a slower growing cancer (grade 2 is moderate, and grade 3 is the highest grade - a faster growing cancer). In breast cancer world, those are considered good news … I know it doesn’t feel good though. It can be a crazy whirlwind of doctors appointments and getting tests and information before knowing what the recommended treatment plan will be.

    I’m sure others here who are way more experienced will share good advice with you! I just wanted to say Hello and welcome.

  • kalla
    kalla Member Posts: 8
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    @ichan what a terrible shock, but your doctor sounds amazing -- I'm thankful that they caught this so early. You've got this, and we're all here with you.

  • maggie15
    maggie15 Member Posts: 858
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    Hi @ichan , I'm sorry that you have to join us here. Radial scars are uncommon benign lesions but they grow in a tissue environment that is favorable for breast cancer. Unfortunately they can prevent bc tumors from showing up on imaging.

    I sympathize with the feeling of being blindsided. After a mammogram callback where there was a slight abnormality on only one view I had four clear mammograms. Two and a half years later an oral surgeon (really!) ordered a diagnostic ultrasound; he was convinced I had cancer since a jawbone infection wasn't responding to antibiotics. Calcifications were seen and a biopsy gave me a diagnosis of 1.6 cm of DCIS. After surgery my tumor was reclassified as 3.2 cm IDC with 1/3 nodes positive. There were multiple radial scars in the margins which, according to my surgeon, hid the tumor. You are fortunate that your doctor insisted on the lumpectomy which found the tumor when it was small.

    The double surprise was a shock but once I focused on the fact that it was still early stage and being treated I calmed down. I hope your sentinel node biopsy finds nothing unusual and there are no more surprises along the way.

  • ichan
    ichan Member Posts: 39
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    thank you very much all of you for responding. Next few weeks will be very challenging as I have to go through a sentinel node biopsy and now my doctor wants to biopsy my right breast as well which showed to have a benign fibroadenoma during my ultra sound to make sure that they are not missing anything in the light of this new information. I am totally stressed out. I feel everything is so not real. I hope there will be no more surprises but I am not confident anymore.

  • ichan
    ichan Member Posts: 39
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    Hi all sisters who went through the diagnosis to treatment journey, how long did it take for you folks from getting a diagnosis to actually starting some kind of treatment. Mine is a little twisted case as a grade 1 5mm tumor was found after lumpectomy . So I am still waiting for sentinel node biopsy which might be in the next three weeks. I am really worried and paranoid thinking about not doing anything for the next three weeks. Is this waiting normal? Please share your experiences.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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    Hi @ichan. It still doesn’t feel real to me and I’m not sure when it will finally sink in!

    My timeline from diagnosis to surgery was 6/15/23 to 8/10/23 = 8 weeks

    When I met with my breast surgeon on 6/26, he kept saying he wanted my mastectomy done within 30 days but they couldn’t get OR time that worked with both the breast and plastic surgeon within that timeframe so on 8/10/2023 I had my mastectomy and sentinel node biopsy. My 6 lymph nodes were thankfully clear. I’m now waiting for my Oncotype test results and will meet with my oncologist mid-September to find out what comes next. It’s been hard to live life or make any plans while waiting for all these test results and appointments!

  • maggie15
    maggie15 Member Posts: 858
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    Hi @ichan , It is recommended to have surgery by 8 weeks after diagnosis. You have already had your lumpectomy. With the size and grade of your tumor it is very unlikely (but not impossible) that lymph nodes would be involved.

    As in needs.a.nap's case scheduling can delay surgery. Mine was delayed because I was on IV antibiotics for an infected jawbone and the surgeon would not operate until that was cleared up.

    Things move slowly in the breast cancer world which can be frustrating. Most of us come out of treatment more patient than we were going into it since there is so much waiting involved.

  • ichan
    ichan Member Posts: 39
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    @needs.a.nap @maggie15 you both are so kind. Thank you very much. Hoping that this phase will pass soon. Fingers crossed.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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    @ichan There’s nothing about this process that’s easy. It tests our patience at every turn. I hope you can keep healing and find ways to stay calm-ish while waiting for the next step.

    I love @maggie15 ‘s words of encouragement!!

    I find myself second guessing everything when someone questions me and as I do research … for example, in the beginning I had an insurance case nurse speaking to me asking questions about my care and she asked if I had a pet scan. Uh, no. So now I’m a little anxious about if I needed one. Hopefully not! Or ki-67. I’ve been seeing many posts with that number but I never received that. Is that important? I am getting Oncotype at least. I will ask my oncologist about the ki-67. I’m such a newbie. Of course we are going to second guess stuff! Because I never saw breast cancer coming and now I don’t trust my body! Everyone in my life was super anxious about me having to wait “so long” for my mastectomy - I was too at first - but after a while I found myself not minding the extra days before my surgery because it gave me a chance to enjoy summer a little, get prepared and organized and take better care of myself. But it did feel wrong, knowing I had cancer happily replicating inside me and doing nothing for weeks! It’s a helpless feeling. Hang in there!!!

  • maggie15
    maggie15 Member Posts: 858
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    Hi @needs.a.nap , PET scans are generally done for people with large tumors and nodal involvement to check for spread to other organs (usually stage III.) While the Oncotype report does not show it, my MO was able to access my levels of gene expression tested (including ki-67) on the physician portal. You can ask about that at your appointment. I hope you don't need chemo but you will cope if you do.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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    Hi @maggie15 . Thank you so much for explaining this! I do keep reminding myself that I have a highly skilled breast surgeon who knows his stuff and I need to try to relax and trust him. So far everything he predicted has been confirmed by pathology and there have been no surprises. I like his calm, confident manner very much. And that I can take this a step at a time. But I’m eager to find out my Oncotype score and find out what’s next. I will ask about the ki-67. Thank you again!!

  • katg
    katg Member Posts: 206
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    I had my biopsy in late june and by Aug 14th I had chemo in 2021. Started with a Mammogram, then and ultrasound with a guided Biopsy, then a CT scan and for me a genetic test. I got chemo.

    Your treatment is guided by what stage and such. For you, you are in treatment, results re coming and those are what doctors work with. Waiting? I think that is a word you will learn comes often as has been said.

    Keep coming here and share your fear and concern, then take a walk or do some dishes. You are powerless over speeding the medical staff up, but know that most breast surgeons and oncologists are there to cure us. Be good to yourself. Trust you are doing the right thing…… The treatments today are vastly different then just a few years ago.

    Plug around the topics around here. Many women are in your shoes, many of us have been there.

  • margecandoit
    margecandoit Member Posts: 133
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    Ichan,

    I am sorry that you are going through this. I had a intraductal papalomia and radial scar that I just seen it was benign and thought I was good. Went back the next year for my mammogram and the radiologist said I was good but then called me back and ask why I didn’t have it removed. I was like I didn’t know I was suppose to have it remove and she said yes you should have it removed. So got referred to a breast surgeon who removed it and it was all benign but she said she wanted to watch me closely and I was doing mammogram and 6 months later doing MRI. Then in one of the 6 month intervals I was diagnosed with IDC that was 1.8 cm in less than 6 months was aggressive. I was happy she was watching me closely. When I had my lumpectomy for my cancer I had another radial scar around it also. Was glad for the first radial scar that made her watch me more closely.

    It takes a little bit to wrap your head around being diagnose but we all have our own time frame of dealing with it. I am sorry you had join this club but glad you’re here to get support that you need.

  • ichan
    ichan Member Posts: 39
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    I have a quick question. Can one of you help me understand? Newbie here. How is the M status in TNM status decided. My doctor just told me mine is M0 but no specific tests were done other than the pathology report saying 5.5 mm IDC with clear margins and no LVI.

  • ichan
    ichan Member Posts: 39
    edited September 2023
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    @margecandoit thank you very much for your comment. I am really feeling hopeless sometimes but this group is keeping me sane. I am reading through other’s experiences and learning from all of you. Also were your nodes negative?

  • ichan
    ichan Member Posts: 39
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    @katg thank you very much for your kind words. All this is very scary but trying to stay positive.

  • maggie15
    maggie15 Member Posts: 858
    edited September 2023
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    Hi @ichan , M stands for metastasis, spread of the cancer to other organs like the liver. Doctors often order a PET scan for stage III patients with heavy nodal involvement to check but don't generally do one for earlier stage patients unless they have symptoms. LVI stands for lymphovascular invasion where cancer cells are seen in the lymph channels or blood vessels near the tumor. No LVI and clear (cancer free) margins are favorable. There are so many abbreviations and new terms to become familiar with.

  • ichan
    ichan Member Posts: 39
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    @maggie15 do you know how it is determined that the cancer has not spread? Any blood tests or scans done to determine that? Can you share ?

  • maggie15
    maggie15 Member Posts: 858
    edited September 2023
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    Hi @ichan , I just edited my comment above since I realized I hadn't explained how M0 is determined. I had a positive lymph node and LVI (lymphatic) but did not have a PET scan since from experience oncologists know that it would be extremely unusual for cancer that had just started to spread to have reached other organs. There are guidelines oncologists follow for ordering tests and treatments (NCCN) so that patients are cared for appropriately but not over scanned or over treated.

  • margecandoit
    margecandoit Member Posts: 133
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    Ichan,

    It didn’t spread to my lymph nodes. It is in the begin of your diagnosis so its seems hopeless but it really isn’t hopeless.. Your feelings are quit normal. You will fine your way to make it through and work it out. It’s not easy but you will fine the way you can deal with it. Sometime a therapist helps or just talking it through with a support systems. I found a support group in my town that has help a lot.

  • ichan
    ichan Member Posts: 39
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    @margecandoit @maggie15 thank you very much. I am driving myself crazy worrying about SLNB turning up positive. It will be performed in next few weeks. Is there any way I can estimate the chances? I know I am asking too many questions. Sorry.

  • maggie15
    maggie15 Member Posts: 858
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    Hi @ichan , The biopsy is the only way to know your situation but generally for a t1b tumor the chance of a positive node is less than 5%. Looking at it from an optimistic perspective there is a 95% or greater chance that your nodes will be clear. Since your tumor is grade 1 you are more likely to be clear than those with a higher grade tumor. A positive node is not the end of the world. I had one and did not need chemo since my Oncotype score was 24 and I'm older than 50. The only treatment change was lymph node radiation was added to my whole breast radiation plan.

    Living with uncertainty is another thing that comes with the territory. All of us here could have a recurrence, develop side effects from treatment or have a med that was keeping us stable for a while suddenly stop working. Since you have a new diagnosis it looms large but eventually it will be just part of your life. We don't worry about having a serious accident every time we start the car even though it's a possibility. You know that having a mechanically sound car, using your driving skills and people generally following the rules of the road makes that highly unlikely. Following your treatment plan, living a healthy lifestyle and attending your future checkups will be the new normal.

    Take margecandoit's advice and use a support group, therapist or antianxiety meds if it becomes too much. However, once you have a treatment plan in place things do get better.

  • ichan
    ichan Member Posts: 39
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    @maggie15 oh my god you are my savior. Your perspective eased my mind little bit. I hope I can have 5% or your positivity. Thank you very much. Yes I think my doctor mentioned something similar but I go into this dark tunnel almost everyday. I think once I know the treatment plan I might be in a better place but for that I need to wait for at least 4 more weeks which is driving me crazy.

  • skyefall
    skyefall Member Posts: 18
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    @ichan - I’m so glad I found your post. My situation is very similar with twits and turns. Reading through all this makes me feel better.

    I promise you will feel better after the SLNB I was going nuts until my lumpectomy and node biopsy. Both the ones they took were clear. I am a t1c.

    it’s such a long process, but it does give you opportunities to research and decide what’s best for you.

    hang in there.

  • ichan
    ichan Member Posts: 39
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    @Skyfall thank you very much for your encouraging words. I am in total shock still. This is completely unexpected. But on the positive side thanks to my doctors who were very persistent on getting it out, I hope we found this early. Mine t1b and grade 1.

  • ichan
    ichan Member Posts: 39
    edited September 2023
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    Another update. My doctor wants to revisit my right breast which was screened for a oval hypoechoic circumscribed mass which has been stable during the past few mammograms to rule out anything hiding. I am so lost now. In MRI and ultrasound this was clearly mentioned as probably benign. Anyone has similar experience? The mass did not grow during the last two ultrasounds and mri but actually reduced in size by 1mm. No associated calcifications. No vascularity. The size is .9mm. Please help me.

  • needs.a.nap
    needs.a.nap Member Posts: 164
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    Hi @ichan. Please hang in there!! Try not to give in to the dark, swirling, anxious thoughts! Your doctor is taking great care of you and is being thorough by re-examining the other breast. It seems good that the spot is not getting larger. I know it’s impossible to wait like you are having to wait and not imagine the worst. This is all so very new for you and it is hard to feel safe when we first hear the word cancer. We all needed lots of reassurance that we would be okay! I hope you are able to turn off your anxious thoughts for tonight and get some rest.

  • maggie15
    maggie15 Member Posts: 858
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    Hi @ichan , Your doctor is being ultra careful which is a good thing. You won't be left wondering if there might be something in the other breast in spite of the fact that what was seen is getting smaller. Checking just to be sure will help give you peace of mind. There are no instant answers but you will eventually get one.

  • ichan
    ichan Member Posts: 39
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    @needs.a.nap @maggie15 thank you very much for sharing some positivity. Sometimes I am feeling completely hopeless. Your comments helped me a lot. I wish things moved faster and I can get the treatment started which seems to be taking forever.