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History of ADH; breast biopsies in April to May 2023

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lotusconnie1999
lotusconnie1999 Member Posts: 39

Hi All,

Thank you very much for your kind support this past month. I really appreciate it.

I had core needle biopsies and an excisional biopsy in 2009 when I was found to have fairly diffuse atypical ductal hyperplasia (ADH) on the right side.

I have been on the 6 month screening alternating MRI with mammograms for about 10 years.

I was found to have an abnormal MRI in April 2023 and went through a few imaging tests and breast biopsies. Thankfully the results were overall benign, though there are areas with uncertainties and need to be closely monitored. I am going to see a breast surgeon in June and discuss my options.

Thank you all for the support here, and I deeply appreciate it… Good luck to everyone and us all. Praying.

Gratefully,

Lotusconnie

(updated on May 18, 2023)

Comments

  • maggie15
    maggie15 Member Posts: 855
    edited April 2023
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    Connie, I'm sorry that you have to return here with suspicious imaging and another biopsy. Although you are familiar with the procedure and the waiting involved it is stressful no matter how many times you go through it. I hope the results come soon and that they are benign. Let us know how it all works out.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Maggie15, thank you so much for your sweetest reply. I really appreciate it. You are so kind to show your understanding to my anxiety and that means a lot to me…

    (updated on 5/6/23: I worked to transfer my image results to another hospital during this time)

    Thanks for listening…

    Connie

  • moderators
    moderators Posts: 7,911
    edited April 2023
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    lotusconnie1999, it is all very difficult to navigate. You'll have more information soon, and be able to sort it out when all the results are in. Here is an article about prophylactic mastectomy, in case it could be helpful.

    Warmly, The Mods

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited April 2023
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    Thank you so much dear Mods. Will read the article now.
    Best regards,

    Connie

  • maggie15
    maggie15 Member Posts: 855
    edited April 2023
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    Connie, Would you be able to get the second biopsy done sooner at the bigger hospital? I live in a rural area with a small hospital and they are very short staffed, too. While my biopsy was done locally I did go to a larger hospital 100 miles away for surgery. The local hospital would only do a mastectomy with no reconstruction since that is all the general surgeons working there had training in. I figured the results would be better if a doctor who specialized in breast surgery performed the operation. Also, there were plastic surgeons on staff if I needed them. I ended out having a lumpectomy with excellent cosmetic results despite my bigger than average tumor. Of course, your smaller hospital might have better resources than mine.

    Whether or not to have a prophylactic mastectomy is a tough decision. Once you get your second biopsy report you'll have more information to guide you. The type of surgery you have will probably not change the recommendation for hormone therapy if it is warranted. I have other health problems it would adversely affect so I am not taking it. It's a harder decision for you since you have a young family. You don't need to decide anything now but doing the research ahead of time will help you make more informed choices if/when you need to.

    Good luck with scheduling, results and information gathering.


  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Maggie15, reading your kind reply is calming and healing…to talk with someone who listens and understands exactly how I feel. Thanks so much!

    My left side biopsy result was benign. My right side biopsy at local hospital is in 3 weeks (Later transferred to another hospital as summarized in my updated first post).

    The past few days have been long…only people like us understand how it feels. I learned a lot from every time going through this and always met with kindness wherever I turn to…especially here. This gives me a lot of warmth and comfort. I will keep my fingers crossed for myself and for everybody going through this.

    Best,

    Connie

  • maggie15
    maggie15 Member Posts: 855
    edited April 2023
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    Connie, Good news that the first biopsy was benign. I hope the second one will be, too.

    If you get concerning results from the second biopsy at the smaller hospital you can have them send the slides to the bigger hospital you would prefer to be treated at. I brought CDs of my imaging with me as well but the bigger hospital redid the mammogram and ultrasound. Their equipment was newer and gave a much more accurate picture of the actual tumor size.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited April 2023
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    Dear Maggie15, yes you are absolutely right. Thank you. What you suggested is exactly what I want to do.

  • maggie15
    maggie15 Member Posts: 855
    edited April 2023
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    Hi Connie, Given the difference in radiology reads it is probably a good idea to continue at the bigger hospital. You will probably need a provider other than the radiologist but at this point an NP in breast care or women's health would do. If warranted you would be referred to a breast surgeon. The coordinator will know who could take you as a patient without a long wait.

    Small hospitals have radiologists and pathologists who do everything and are not experts in any one area. Specialization can backfire, however. I ended up with a serious side effect from radiation at the big hospital. The pulmonologist I was referred to told me that a lung cancer RO (as opposed to a breast cancer RO) would have seen the red flags in my medical history and recommended a mastectomy with no radiation rather than the lumpectomy I had. There are no guarantees so go where you feel you will get the best care.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Dear Maggie15, I hope you are fine with your lungs…thank you so much for sharing your experience and support.

    Thank you very much for sharing your insights and it is very helpful. Later this afternoon I scheduled diagnostic mammo and ultrasound at the bigger hospital in 10 days and right side MRI guided biopsy in the beginning of May.

    Love,

    Connie

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    In this post I reviewed my interaction with my friends in reality. I deeply appreciate their input. My main issue is my own anxiety facing up to this uncertainty I think. I am way too sensitive at times.

  • maggie15
    maggie15 Member Posts: 855
    edited April 2023
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    Hi Connie, Deciding who to tell can be complicated. I told almost no one since as a high school teacher I did not want my students to worry. I let my department head know in case of emergency but nobody else at work knew. I was being treated for osteomyelitis of my jawbone at the time of my diagnosis so the students just attributed any absences for cancer treatment to my terrible infected tooth (no hiding my chipmunk face.) I had witnessed how fellow teachers with cancer had been criticized by some staff members for not carrying their weight so I wanted to avoid that, too.

    Many people don't like discussing terminal illnesses since it reminds them of their own mortality. Even your friends can be uncomfortable with that aspect of your life. Since I have to avoid all respiratory infections (RIPF) I am still living the lockdown life. I am really looking forward to spring and the ability to do more outdoors. I never really appreciated how much eating and drinking is involved in any social activity or how much happens inside no matter what the season, especially since covid restrictions have ended.

    People in the same situation as you are more sympathetic since they understand. This site is an outlet for some of the emotions friends and family don't appreciate or want to be reminded of.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Maggie, what you said makes total sense. I did not think of the issue in that way before and what you said made me think and understand the matter better. You are right. Hope you enjoy the spring time..sorry to know about your RIPF. Hope it would be stable for years to come.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
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    I had mammogram and ultrasound this week. Ultrasound identified a right side mass that needs biopsy. Radiologist called me that I will need 3 biopsies.

    1. Right side US guided biopsy.
    2. Right and left MRI guided biopsy.

    I left voicemail with the scheduler and waiting for a call back. Am at work right now.

  • maggie15
    maggie15 Member Posts: 855
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    Hi Connie, Biopsies in three locations sounds like a lot but it means that they are taking a very thorough look. I hope they can schedule you soon.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Thank you Maggie. It is so nice to hear from you again. Yes the scheduler kindly called me and scheduled them in the middle of May.

    As far as your RIPF, forgive me if I read it wrong — but I read that you mentioned somewhere that you only have (I hope I read it wrong) a life expectancy of 6-8 years??? That is unfair!!! It is a side effect of radiation. I hope it is not true!!! Will you be a candidate for lung transplant… Hope the best for you. For me. For all of us…

    Sorry after I wrote the above I realized that whether the history of BC will be in the way for a candidacy for lung transplant. I’m ignorant on that. Also are you taking medication for PF? Like OFEV?

  • maggie15
    maggie15 Member Posts: 855
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    Thanks for the info, Connie. I'm not a lung transplant candidate because I am too old and have had a solid tumor cancer outside the lung.

    RIPF is a bit different from IPF and is treated with corticosteroids. If they stop working OFEV is a possibility but I'm not sure how effective it would be. One woman in an online PF group (only about 10 RIPF members since it is so rare) is now taking it but is not having much success. My pulmonologist is the head of an ILD specialty team at a major hospital and is doing really well keeping progression at bay while preventing my bones from collapsing from too much prednisone.

    As a math teacher I understand that averages are just that and don't tell what will happen in any individual case. The quoted average LE for RIPF is better than that for MBC so I'll take what I have. Life isn't fair but you have to do the best you can with what you get. I'm glad you got an appointment that is not too far off.

  • triscuit
    triscuit Member Posts: 32
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    @lotusconnie1999 it's a tough decision. I hope your biopsy results are benign. I was in somewhat of a similar situation with benign findings over the years and multiple biopsies. The every 6 months surveillance and stress really wore on me too. I did not really want to do preventative mastectomy, but I kept wondering if I should be (I have a chek2 genetic mutation also). Then my last biopsy showed DCIS and suddenly it was no longer hypothetical and I moved forward with bilateral mastectomy. I feel lucky that only DCIS was found and no IDC. Thankful that the years of surveillance are over and I (hopefully) dodged a bullet and didn't need chemo or radiation either. It's a very tough call to make though. I wish you the best in deciding once you have your biopsy results.

  • maggie15
    maggie15 Member Posts: 855
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    Connie, Gathering information but not getting ahead of the process is a good idea. Whatever you end up doing should be what you are most comfortable with. Those close to you have opinions but you have to live with the outcome.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited April 2023
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    Triscuit and Maggie, thank you both so much for your kind and insightful input. You understand me…I really appreciate it…

    Triscuit, glad that you caught it early and admire that you are so brave. What you described is so informative and helpful. I would probably bother you more for some questions, if you don’t mind, when these biopsies are done. Keep my fingers crossed.

    Maggie, thank you for being so considerate and supportive. This means tremendously to me…thank you. Again, I hope your condition will remain stable for years and years to come…maybe at that time we will have better medicine for everything.

  • triscuit
    triscuit Member Posts: 32
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    You are welcome to ask anything. I've benefitted so much from talking through things and hearing other experiences. Fingers crossed for you.

  • harley07
    harley07 Member Posts: 273
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    Preparation is good but try not to get ahead of yourself. If treatment is needed, a plan should be discussed between you and your doctors to make sure you understand your options and the pros and cons of each.

    A mastectomy for ADH only without a genetic mutation may not be covered by your health insurance and some surgeons can be reluctant to undertake a major surgery without a cancer diagnosis. I was diagnosed with IDC with a genetic mutation at the height of the Covid pandemic and my surgeon would not even discuss the possibility of a mastectomy, although I am older than you and this may have affected her decision. YMMV.

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Thanks again Triscuit. I will definitely use your help. I really appreciate it. I read your other posts too. Very helpful.

    Harley, you are absolutely right. Sorry to know that the pandemic limited your options. Thank you for your input.

  • harley07
    harley07 Member Posts: 273
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    I have no advice. Ultimately only you can decide the best way forward given your history. I’m sure it’s scary and frustrating to have less than definitive answers. Hopefully your doctor can provide more insight that helps you with a decision.

    Best Wishes.

  • maggie15
    maggie15 Member Posts: 855
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    Hi Connie,

    I'm glad that nothing more than ADH was found but it does leave you with a tough decision. What the doctor has to say and insurance coverage will probably guide what you do next. Discovering that healthy eating, sleep and exercise are effective at preventing BC will hopefully make a difference in your health going forward. I've enjoyed chatting with you.

    Maggie

  • lotusconnie1999
    lotusconnie1999 Member Posts: 39
    edited May 2023
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    Dear Maggie, I’ve truly enjoyed our conversation and thank you very much for your kindness to me and everyone on this forum…you are amazing!

    Yes, both Harley and you are right. I will talk to my doctors. Thanks a lot. Connie