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Right breast biopsy confirmed ADH, ALH & LCIS what’s next?”

Posted by kmcb1117 @kmcb1117, Sep 8 5:28pm

Hello, I’m 45 years old and recently had two biopsies in my right breast. Apparently a total of 18 core samples were taken. The pathology results showed atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH), and lobular carcinoma in situ (LCIS) which all mean nothing to me other then it’s made me fall into a high risk. I wasn’t told much other then I’ve been referred to the breast surgeon who will go over the pathology results and provide me with next steps. I am having genetic testing done next month also. My mom had breast cancer twice but is still living and my dad had prostate cancer that metastasized to his bones and has passed.
I am aware and excepted to be high risk due to family history as well as with having heterogeneous dense breast but what would or should i expect when meeting with the surgeon? I just haven’t been given much information other then a phone call hearing no cancer is the good news BUT there was ALH ADH and LCIS?
Any one else experience and if so what path did you take? Second opinion etc?
Thank you!!

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Profile picture for 1ek
1ek | @1ek | Sep 10 12:13pm

I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area of ADH. My 2nd surgeon advised that the IDC & DCIS needed to be removed. She said that if I only had the ADH she would recommend monitoring for any changes, but since I needed surgery anyway, the right thing was to remove it at the same time.

Having 3 separate areas removed and preserving the breast isn’t something every surgeon can do. My first surgeon said that my only option was mastectomy … thankfully I had done my research & knew that wasn’t the case, so I got a second opinion.

Keep in mind that each case is different, and the specific size & location of each area affects what can/can’t be done.

I had all 3 areas removed & had oncoplastic surgery to rearrange the rest of the tissue, and a reduction on the other breast so the sizes would match. (I went down about 1/2 a cup size.)

Seems like you’re in a good headspace with this - stay there, and don’t rush into anything you’re not comfortable with.

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3 replies
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kmcb1117 | @kmcb1117 | Sep 10 1:46pm

Thank you so much for taking your time out to sharing your experience it really helps to hear how others have navigated in similar circumstances . I’m still waiting to meet with the breast surgeon scheduled for next Tuesday and have genetic testing next month, so your reminder not to rush and to consider a second opinion if needed is definitely worth the time and mental clarity. Thank you and I wish you all the best as well. 🙏🩷🙏

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Profile picture for eleanorrigby
eleanorrigby | @eleanorrigby | Sep 13 3:37pm
In reply to @1ek "I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area..." + (show)
Profile picture for 1ek @1ek

I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area of ADH. My 2nd surgeon advised that the IDC & DCIS needed to be removed. She said that if I only had the ADH she would recommend monitoring for any changes, but since I needed surgery anyway, the right thing was to remove it at the same time.

Having 3 separate areas removed and preserving the breast isn’t something every surgeon can do. My first surgeon said that my only option was mastectomy … thankfully I had done my research & knew that wasn’t the case, so I got a second opinion.

Keep in mind that each case is different, and the specific size & location of each area affects what can/can’t be done.

I had all 3 areas removed & had oncoplastic surgery to rearrange the rest of the tissue, and a reduction on the other breast so the sizes would match. (I went down about 1/2 a cup size.)

Seems like you’re in a good headspace with this - stay there, and don’t rush into anything you’re not comfortable with.

Jump to this post

You have the exact same issue I have - one of each. Your post has helped me tremendously today! NO ONE has even hinted at the type of surgery you had and that is actually what I had dreamed up in my head as to what I would be comfortable with! When I see the doc in a few days, I will bring this up. Thanks so much, and I am very happy for you that you are doing well!

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1 reply
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1ek | @1ek | Sep 13 7:50pm
In reply to @eleanorrigby "You have the exact same issue I have - one of each. Your post has helped..." + (show)
Profile picture for eleanorrigby @eleanorrigby

You have the exact same issue I have - one of each. Your post has helped me tremendously today! NO ONE has even hinted at the type of surgery you had and that is actually what I had dreamed up in my head as to what I would be comfortable with! When I see the doc in a few days, I will bring this up. Thanks so much, and I am very happy for you that you are doing well!

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Glad sharing my experience helps! The specific research was from the 2022 San Antonio Breast Cancer Symposium … I can’t seem to copy the PDF or a link so hoping you or your surgeon can find it. NIH website has some info but the San Antonio symposium was easier to understand.
My second opinion was at a dedicated cancer center (yes, further from my home) and the surgeon was already familiar with this procedure, and has a partnership with oncoplastic surgeons so it was seamless, and 2 years out I’m in great shape …. You haven’t dreamed this up, in many cases it can be done🎈
I wish you all the best!

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Profile picture for eleanorrigby
eleanorrigby | @eleanorrigby | Sep 13 10:11pm
In reply to @1ek "I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area..." + (show)
Profile picture for 1ek @1ek

I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area of ADH. My 2nd surgeon advised that the IDC & DCIS needed to be removed. She said that if I only had the ADH she would recommend monitoring for any changes, but since I needed surgery anyway, the right thing was to remove it at the same time.

Having 3 separate areas removed and preserving the breast isn’t something every surgeon can do. My first surgeon said that my only option was mastectomy … thankfully I had done my research & knew that wasn’t the case, so I got a second opinion.

Keep in mind that each case is different, and the specific size & location of each area affects what can/can’t be done.

I had all 3 areas removed & had oncoplastic surgery to rearrange the rest of the tissue, and a reduction on the other breast so the sizes would match. (I went down about 1/2 a cup size.)

Seems like you’re in a good headspace with this - stay there, and don’t rush into anything you’re not comfortable with.

Jump to this post

@tek Tell me if I'm asking too much! Where did you get this done? And do you mind telling me the name of your surgeon and oncoplastic surgeon? Depends where they are located but nothing is inconceivable if I'm a good candidate!
Can't believe you had the same three problems in your one boob, just like me. Did the oncoplastic happen immediately after the removal? Or at a later date? And if all at one time, how long were you in surgery?
much gratitude!!! I go see the doctor who can guide me, who I have great respect for, on Tuesday, so I am gathering all the info I need to talk sensibly. Thanks so much!

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1 reply
Profile picture for eleanorrigby
eleanorrigby | @eleanorrigby | Sep 13 10:27pm
In reply to @1ek "I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area..." + (show)
Profile picture for 1ek @1ek

I had a stage 1 invasive ductal tumor (IDC), plus one DCIS tumor, and one area of ADH. My 2nd surgeon advised that the IDC & DCIS needed to be removed. She said that if I only had the ADH she would recommend monitoring for any changes, but since I needed surgery anyway, the right thing was to remove it at the same time.

Having 3 separate areas removed and preserving the breast isn’t something every surgeon can do. My first surgeon said that my only option was mastectomy … thankfully I had done my research & knew that wasn’t the case, so I got a second opinion.

Keep in mind that each case is different, and the specific size & location of each area affects what can/can’t be done.

I had all 3 areas removed & had oncoplastic surgery to rearrange the rest of the tissue, and a reduction on the other breast so the sizes would match. (I went down about 1/2 a cup size.)

Seems like you’re in a good headspace with this - stay there, and don’t rush into anything you’re not comfortable with.

Jump to this post

Is this the paper you were referring to - "Breast-conserving Therapy May be a Treatment Option for Some Patients with Multiple Breast Lesions"?
Also, did you have any radiation?
Thanks again!

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1 reply
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1ek | @1ek | Sep 14 10:24am
In reply to @eleanorrigby "Is this the paper you were referring to - "Breast-conserving Therapy May be a Treatment Option..." + (show)
Profile picture for eleanorrigby @eleanorrigby

Is this the paper you were referring to - "Breast-conserving Therapy May be a Treatment Option for Some Patients with Multiple Breast Lesions"?
Also, did you have any radiation?
Thanks again!

Jump to this post

Yes, that is the paper!
Ask all the questions you want - it is important to be informed.
My surgery was at IU Health, Simon Cancer Center in Indianapolis. It’s a teaching hospital so they tend to perform procedures that others can’t.
Oncoplastic was done at the same time the tumors were removed, surgery took about 4 hours.
Since one of the tumors was invasive ductal carcinoma (IDC) I had 5 radiation treatments.

Hope your appointment on Tuesday gives you the answers/info you need!

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1 reply
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lifetraveler | @lifetraveler | Sep 16 6:06pm
In reply to @eleanorrigby "@tek Tell me if I'm asking too much! Where did you get this done? And do..." + (show)
Profile picture for eleanorrigby @eleanorrigby

@tek Tell me if I'm asking too much! Where did you get this done? And do you mind telling me the name of your surgeon and oncoplastic surgeon? Depends where they are located but nothing is inconceivable if I'm a good candidate!
Can't believe you had the same three problems in your one boob, just like me. Did the oncoplastic happen immediately after the removal? Or at a later date? And if all at one time, how long were you in surgery?
much gratitude!!! I go see the doctor who can guide me, who I have great respect for, on Tuesday, so I am gathering all the info I need to talk sensibly. Thanks so much!

Jump to this post

Hi! @eleanorrigby

Just've been thinking of you and your visit with the expert today... Hopefully you've received the best advice & treatment plan from the good doctor to make the informed and wise decision going forward:)

Best wishes to all on the journey ahead!

REPLY
Profile picture for eleanorrigby
eleanorrigby | @eleanorrigby | Sep 16 7:20pm
In reply to @1ek "Yes, that is the paper! Ask all the questions you want - it is important to..." + (show)
Profile picture for 1ek @1ek

Yes, that is the paper!
Ask all the questions you want - it is important to be informed.
My surgery was at IU Health, Simon Cancer Center in Indianapolis. It’s a teaching hospital so they tend to perform procedures that others can’t.
Oncoplastic was done at the same time the tumors were removed, surgery took about 4 hours.
Since one of the tumors was invasive ductal carcinoma (IDC) I had 5 radiation treatments.

Hope your appointment on Tuesday gives you the answers/info you need!

Jump to this post

@lifetraveler @1ek Well ladies, I met with the doc today and..she suggested we do a LUMPECTOMY with RADIATION...exactly what you did, Tek!!! She is meeting with a particular surgeon and a particular radiation oncologist to talk to them about this and see that they all agree, and then I will meet with each of the other two. My doctor that I went to see was really not the least freaked out about doing exactly what you had done. She is the one who brought it up first thing,not me, so I was pretty happy. Hopefully the other two doctors are on the same page, and if so, I should have it done before Christmas!!
Crazy how I stumbled on this discussion group, and how you found my comment, and had your comment that led me where I am at this moment, so thank you, Tek.! Thank you, lifetraveler for thinking of me. Hopefully this will work out; we'll see! I appreciate you both!❤️

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1ek | @1ek | Sep 16 8:24pm

So glad things are working out! sounds like your doc is informed and already has the connections to do what’s right for you🎈
Yes, this is an awesome forum, definitely helped me while I was figuring out the whole thing - happy to pay it forward!
Keep us updated with your progress and any other questions

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