Atypical Hypersplasia with "Borderline" DCIS

Posted by lindaalexis @lindaalexis, Aug 28 1:02am

Hello Everyone,

I wish we were all meeting on better circumstances. 😉

I am 58 and for the first time ever, I had an abnormal mammogram with a single cluster of microcalcifications. I was called back for magnification views, and last week, I had a stereotactic biopsy.

My breast surgeon called, said no cancer BUT that I'm somewhere in between. I have Atypical Ductal Hyperslasia (ADH) "bordering" on "low grade" Ductal Carcinoma in SITU (DCIS.)

She is recommending an MRI (I can't do contrast,) followed by surgical removal of the area of concern in October. We'll go from there.

I've done a lot of research and because I fall between the lines here, I am feeling like this is extreme. Of course, I could be wrong. I am not in denial, just seeking some other opinions from either those who have experienced the same and / or medical advice.

She also mentioned a drug, like Tamoxifen. No radiation….yet. I asked if this could be a "wait and see" kind of scenario, but she said NO! I just don't know what to think.

I AM considering seeking a second or third opinion on this while I wait for surgery and I understand this could be a pre-cancer, but since it's a fine line…I just feel this is extreme.

I have seen a lot during my research. I pray for all of you, this is not an easy path no matter where we are. I DO feel blessed, that I most likely caught it early.

Sorry for rambling, I hope you understand. It's hard to sum up easily in text.

Thank you, and enjoy your Sunday.

Lexy

Interested in more discussions like this? Go to the Breast Cancer group.

You specifically mean a lumpectomy, or “breast conserving surgery?”
I had mine July 25 and it was so easy. I took Tylenol once or twice. My sore throat from the anesthesia was the worst part.
I would have been thrilled to get precancerous cells removed before they spread.
Instead, even though my tumor was very small, I am facing chemo, radiation, Verzenio for 2 years, letrozole for 10, and Zometa for 3-5.
To me, it doesn’t seem like overreacting at all. This area is not going to go away. It will only get more difficult to treat.
I am not a breast surgeon, so please do get a second opinion, but consider what you will do if the second disagrees. Will you seek a third?
I would go to the very best breast center you can, because that will give you tremendous peace of mind with the recommendations.
Best of luck to you!

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I would at least get a second opinion (and possibly a second biopsy). I would not want do surgery without that added input as, I'm assuming, the surgeon would also suggest doing a sentinel node excision and biopsy as well. If both oncologists are in agreement, it makes the right decision easier to feel comfortable about.

And I would ask both about which genomic tests apply and might provide valuable data. That will rely upon the kind of cancer cells, if any, found and the biopsy would show that.

I would also get a copy of the biopsy so you can get it quickly to any other oncologist you might want to see as doctors' offices are still understaffed due to covid fallout.

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Hugs going out to you. These types of decisions are so difficult. I want to say something about ‘wait & see’. I had DCIS that was found in a mammogram. Prior to that I was going to hump and he felt something in my breast. He said come back on 6 months. I did then he still felt it & when asked of larger he got very snarky with me. I was out of there. Saw a breast surgeon. He told me that why wait & see. See that it will turn onto cancer. If something is on your breast that should not be – remove it. We biopsied and it was DCIS. I had lumpectomy, tamoxifen and all good.
Praying you come to decision tight for you. A second opinion will be a good thing to do. Borderline means ot could go either way. 🙏🏼

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I totally understand the anxiety and not wanting to rush into anything. I to have the same delima from another part of my body (liver area) from an atypical lymph node found 9 and a half years after breast cancer treatment. My biopsy findings were classified Atypical. Still waiting for follow up consult with surgical and medical oncologists.
I have found that getting another opinion ie: oncologist/radiologist is good advise. The more information we have about our situation can help bring clarity to whatever decision we make that feels right for us.
When you do speak with the Drs try and take someone with you for another set of ears as to what you are being told. I take my daughter.
I put all of my information, scans, medical records, etc in a binder to take with me to Dr appts so I can reference them while I am speaking to the Dr. Also write down your questions before the appt so you are clear headed about what concerns or questions you have. That helps me stay focused when I am at the appointment.
Waiting for everything to fall into place can be very stressful. I find meditation, talking with those I trust for my best interest to be helpful. Whether to do one procedure or another is your decision based on your knowledge and guidance from the drs involved. But I have tried to quiet myself and make an informed decision on what I need to do based on facts not fear.
I don’t like drs who immediately jump on the surgery wagon and who are not willing to listen to your questions and concerns. One size does not fit all when it comes to making these important decisions.
I wish you a clear mind and peace as you move forward through this process and that you find drs you trust and are willing to explain all your options.

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I am in the school of thought with @sequoia , why wait until it is invasive carcinoma. If it is already considered DCIS, this is carcinoma it just hasn’t invaded surrounding tissue yet.
If I were like @meme5 , and not calling it DCIS, and a history of surgical complications I might feel differently.
My hindsight is, that if I was doing it all over again and diagnosed today with DCIS, and knew what I know, that icky bit would be gone as fast as I could get it scheduled.
By all means I would get a second opinion, preferably at a cancer center you trust.
Here is Mayo Clinic’s DCIS page.
https://www.mayoclinic.org/diseases-conditions/dcis/symptoms-causes/syc-20371889
Is there a good breast clinic or cancer near you?

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Hi Lexy,
I am 60years old with no risk factors wxcept overweight, and had exactly the same mammogram findings like yours. The diagnosis is DCIS. MRI confirmed it but also showed a non mass thickened area for which I am having an MRI guided biopsy today.
My treatment plan if everything remains the same is lumpectomy and depending on the oncotype test results radiation. (Hope I don’t need it)
My advice would be to get a second opinion asap and go ahead with the lumpectomy.
A big hig😊

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Hi Lexy,
I too, wish we were all meeting under different circumstances. I was diagnosed with Invasive DCIS, which was considered stage 1 cancer, and I was lucky in that it had not spread to my nodes. I am in agreement with @auntieoakley and @sequoia in not taking the "wait and see" stance. If it does become invasive, you run the chance of it spreading to other parts of your body. I had a lumpectomy, lift/reduction, radiation, and chemo. I did the oncotype test to see if I would benefit from chemo based on the oncotype test score and other risk factors. I received a score of 25, and a score of 26 would have put me in the category of needing chemo. I went the route of having chemo because I did not want to miss any of the cancer cells that might have passed through my nodes (which I believe is rare). Everyone's journey is different and I am just giving you my perspective based on my own experience. I hope this helps and sending positive energy your way. Making these types of decisions are never easy! Take care and the best of luck!

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Hi @lindaalexis, I just wanted to check in and see how you are doing with your decisions. Your question got a lot of responses that I hope you saw. I look forward to hearing what you decided to do and what further questions you might have.

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