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DCIS recurrence 4 years out from IDC

lb13
lb13 Member Posts: 41

Hello all,

I love all of you but really never wanted to revisit these boards!!! However, I need some sanity and most of you know the anxiety, worry and sick feeling in the pit of your stomach with a diagnosis - let alone a recurrence. Jan 2020 - diagnosed with IDC ER, PR+, HER2- Grade 2 - KI67<5% - 2 tumors and one lymph node involved. Had a lumpectomy, 30 radiation treatments and been on tamoxifen faithfully ever since. Have been doing well other than some mild lymphedema and residual telangiectasia.

Fast forward to now - 2 mammos and biopsy with results of DCIS High Grade with comedonecrosis ER, PR-. Different than what I had before, but considered a recurrence. I want to throw up.

I have a breast MRI scheduled, see my oncologist on Monday and see the surgeon on Tuesday morning. I don't even know what I am asking here at this point - just trying not to spiral. I work for the health network, although I am not clinical. (Just know enough to be dangerous). I am so angry at the moment, because I feel like I did everything right (lumpectomy, radiation, tamoxifen, lost weight, stayed active, etc.) On the other hand I am grateful that we have technology that can find things at an early stage. Back and forth…. up and down…… grrrrrr.

Without jumping the gun, I am already thinking bilateral mastectomy - had I done that in the first place, maybe I wouldn't be here now. Take the stupid boobies that are nothing but trouble!! I turn 55 tomorrow. I am on my second marriage and the last 10 years in this relationship have been the best times of my life - I LOVE my life and just want to be here to live it!

I am PETRIFIED because the surgeon already mentioned scans, etc. looking for distant mets even though no one 'thinks' that will be the case. Every little pain I have now I am freaking out!! Sorry I am rambling - just need to type it all out to even make sense of it. So many feelings, questions, worries, etc.

Comments

  • maggie15
    maggie15 Member Posts: 769
    edited January 24

    Hi @lb13 , I'm so sorry that you have a new diagnosis. Don't blame yourself; while a healthy lifestyle statistically reduces the number of people who have a recurrence within a large population it does not prevent it happening to some individuals. Your improved fitness will help your recovery from surgery and other treatment so all your hard work will benefit you. The scans are done as matter of course just to make sure there is nothing distant. You will have peace of mind knowing that they checked. Once you know what your treatment will be come back and connect with others with similar plans. I hope all goes well and you can get back to living your wonderful life worry free.

  • moderators
    moderators Posts: 7,685

    Hi @lb13,

    We're so sorry you find yourself back here. We're sending big hugs to you as you learn more about your diagnosis and upcoming treatment. We know it isn't easy, but you've done it once, and you can do it again. We're all here for you as you navigate your care.

    You might be interested in this page to help understand what you're dealing with:

    Please continue to let us know what information you find out, so we can keep supporting you. We're sending you happy birthday wishes, despite this news. We hope you can find some ways to celebrate tomorrow! 🎂

    —The Mods

  • mandy23
    mandy23 Member Posts: 92

    Hi @lb13 !

    Really sorry you have to come back here, but know that we are all here to hold your hand through this next challenge. Having to go through this once is bad enough….twice is really not 'fair'! It really hits you in the pit of your stomach, doesn't it?

    Try and take a deep breath. Take things one day, one appointment at a time. You got through this the first time, you WILL get through it again! Once you get a plan put in place, it does help. Know that any decisions you make are your decisions and once made, they are the RIGHT ones.

    There is a forum for those of us 'lucky' enough to have bodies that seem to want to make breast cancer more than once. Maybe some of our experiences will help you:

    https://community.breastcancer.org/en/categories/second-or-third-breast-cancer

    Hang in there! You've 'got' this!

    Take care.

  • lb13
    lb13 Member Posts: 41

    The meeting today with the surgeon went well. Option A : I am having a breast MRI on Friday morning, and as long as those results do not show any more extensive disease, then I will have a lumpectomy on February 22 and some additional radiation. (Not as much as I had 4 yrs ago) We spent about an hour with him, and he firmly believes that my prognosis would not change with a bilateral mastectomy by more than about 3%

    If the breast MRI shows more involved disease, I will opt for the mastectomy. But as of right now, the plan is to move forward with option a. I will know MRI results for sure on Monday. 

    I am praying I am making the best decision since the docs cannot agree if this is a recurrence or a new primary. The current diagnosis is stage 0 DCIS but high grade and ER, PR negative. My MO also ordered a nuclear bone scan and abdominal CT at my request.

  • moderators
    moderators Posts: 7,685

    Thank you for keeping us in the loop, @lb13! We'll be awaiting your updates after the breast MRI on Friday once you get the results. How are you feeling right now with everything?

  • salamandra
    salamandra Member Posts: 725

    Hi lb,

    I had IDC five years ago and this fall, got IDC again in the breast on the other side.

    It sucked in some ways worse than the first time, but in some ways the second time through has been easier just because things are familiar and I already have doctors I know I like.

    I am starting more intense hormone treatment, but I did have another lumpectomy and radiation.

    We made it through once, we'll make it through again!

  • lb13
    lb13 Member Posts: 41

    Hi Salamandra - Thank you for your kind response.

    I am having the breast MRI tomorrow, and I guess this will make my final determination if I can go with lumpectomy/radiation or need a mastectomy. Of course I have scanxiety and just want to throw up thinking about all the things that 'could' be on the MRI. I am praying SO hard that this MRI doesn't show anything more extensive. I just can't deal with any more 'surprises'!! I have a consultation scheduled with plastics on Wednesday that I am hoping I will not need. I met with the Radiation Oncologist yesterday - and I am a little disheartened because he told me 'if I qualify' it would be an additional 25 radiation treatments. (surgeon originally thought 5 or 10) (MRI will give him the final answer if we can do this or not) I had such horrific skin breakdown the first time when I had 30 treatments. But, that was whole breast radiation and this would be partial - but this would be a higher dose…. A total of 55 radiation treatments between two diagnoses if I end up getting this round - YIKES

    All the docs have been great and very thorough. (one small perk of working for the network) Two of them believe this is 'leftover' from my first diagnosis - one thinks it is a new primary. I guess the MRI will give some more info. I just can't help but think that if I would have had a breast MRI the first time, maybe this would have been found. Also - if I had the 30 rad treatments, why the heck wasn't it 'fried' out of there??? I know I can't go down the rabbit hole of what-ifs, but I really wish I had concrete answers.

    Overall, I am very positive and just want to get this done and over. I pray I am making the right decision to only go with lumpectomy and radiation. Praying it is 'only' DCIS, stage 0 and stays that way until I get it out of there.

    Thanks again for my rambling rant. Hoping you are all in my pocket tomorrow at the MRI :)

  • lb13
    lb13 Member Posts: 41

    My breast MRI was 'best case scenario' according to three different doctors. No increased presence of disease in either breast, and the DCIS actually looked like a smaller area on MRI. So, I am scheduled for a lumpectomy on 2/22 with 25 radiation treatments to start April 1st. still very scared because it is a second cancer and second round of treatment, but I am telling myself it is a blessing I found it and it could have been SO. MUCH. WORSE. Thankful and grateful for all of you and your input.

  • maggie15
    maggie15 Member Posts: 769

    Hi lb13, I'm glad things worked out to be the best case scenario. I hope your treatment plan goes well.

  • ginna
    ginna Member Posts: 2

    Hi Ib13


    I was just DX with a second cancer in the same breast. Right breast cancer DCIS 2006 had lumpectomy 30 radiation tamoxifen - only took 1 year

    fast forward to today

    DX Feb 2,2024 IDC 1.4 cm

    I was wondering if they are doing a second lumpectomy and radiation on your same breast . I would hope for that as well but every thing I am reading says they dont do two lumpectomies on the same breast, and they won’t radiate same breast twice.

    I don’t see the surgeon until Thursday .

    thank you

    Ginna

  • maggie15
    maggie15 Member Posts: 769

    Hi Ginna, Whether or not you can have radiation again depends on the previous dosage, the tumor location and the amount of time that has passed. An RO will have to analyze your previous treatment to see if it is feasible. While it is more likely that a mastectomy will be recommended some people can have a second lumpectomy. I hope things go well whatever is decided.

  • moderators
    moderators Posts: 7,685

    @ginna - We’re so sorry you have to go through this again, but glad you reached out to us! It's understandable to have questions and concerns about the treatment plan moving forward. As Maggie has said, your medical team needs to take into account the treatments you have received in the past when deciding on a new treatment plan. Here is one of our articles that may be of help to you: Understanding Breast Cancer Recurrence

    Hope it helps! Information is power, and when you're prepared, you can have a more productive discussion about your treatment options. Please, come back to let us know what you learn next Thursday. We're thinking of you!

    Sincerely,

    The Mods

  • lb13
    lb13 Member Posts: 41

    @ginna I am also very sorry to hear you have been diagnosed a second time. It is SO unsettling and SO scary! Yes, I am having a second lumpectomy and reirradiation on the same breast. All of the doctors I consulted with said it is possible after carefully reviewing my breast MRI.

    I am not sure what your situation with rads was like - mine was in 2020, but I had horrific skin breakdown and have telangiectasia (permanent discoloration close to my armpit) Initially, I was diagnosed with IDC ER+, PR+, HER 2- - this time, it is DCIS ER-, PR- for me. I have faithfully taken my tamoxifen daily for the last four years (never missed a dose) My rad onc told me it is a 'lifetime limit' for rads, rather than if you can have it more than once. My surgeon also explained to me that a bilateral mastectomy still would not mean it could not recur - as they can never get 'ALL' of the tissue, and only changes my odds by 3-7 %.

    Another thing that was a factor, is that I am about a D/DD cup. I have a little more breast to work with for a second lumpectomy so apparently that helped. I also have a very small area of DCIS (less than 1 inch), so I will have bracketing for mag seed placement this Thursday morning (they put one seed on each end of the line of calcifications) to make sure they get it all out without guessing where it starts and ends. I work for the network where I am having surgery/treatment (although not clinical), and we are a teaching hospital.

    I am happy to help answer any additional questions you have, and I am sure you will be well-armed when you meet with your surgeon this Thursday! I ask a TON of questions!! I hope and pray you come up with a treatment plan that gives you the most peace of mind in dealing with this evil disease. Thinking of you. :)

  • lb13
    lb13 Member Posts: 41

    @ginna Thinking of you and wondering how your appointment with the surgeon went?