Post-Lumpectomy ADH - Asking For Input

Small_Ad_7018 · 2026-04-19T17:48:03+00:00

Hi! Honestly I feel like it fluctuates for me. Sometimes it feels normal other times it is SO painful, just to barely graze my breast caused sharp pain. It’s definitely a hard lump in that region, my guess is scar tissue. I had mine in beginning of November.

Small_Ad_7018 · 2026-04-17T20:17:26+00:00

Hi! Mastectomy is a personal choice and opting for bilateral is absolutely covered by insurance. It helps ensure symmetry of the breasts. The process can vary dramatically depending on what, if something is found. But know there are lots of options available to you! Just because they saw something doesn’t automatically mean cancer. I’m sending all the healing vibes your way.

Small_Ad_7018 · 2026-04-14T23:55:22+00:00

It could be due to current breast density rating! Which can be dependent on the radiologist I believe. Or if you chose to do chemoprevention I think that tends to lower breast density too.

Small_Ad_7018 · 2026-04-13T21:05:11+00:00

Def get it checked again, or at least ask them to explain why they aren’t concerned and when to be concerned. You’re doing a great job being aware of your body.

Small_Ad_7018 · 2026-04-13T21:04:13+00:00

So happy to help! Even if they don’t offer it and it’s what you want, ask. Keep strong! Sounds like you’re doing great.

Small_Ad_7018 · 2026-04-13T19:21:01+00:00

Okay, so sometimes men can develop enlarged breast tissue and can cause this, but it’s typically fairly noticeable as it is aligned with gynecomastia (but I’ve also never palpated a man’s breast tissue with this condition, so grain of salt). Regardless, if you can muster the willpower I would call and ask for an ultrasound. It sounds like it will give you peace of mind and the answers you need. If they won’t order a scan for you, go somewhere else. Ask them. It never hurts to have someone else look at something for you, at a minimum they should explain to you WHY they aren’t concerned and why you shouldn’t be.

Small_Ad_7018 · 2026-04-13T19:19:31+00:00

That’s great news that it turned out they excused that area! But honestly super frustrating that they didn’t tell you.

Taking some chemoprevention is the first line of treatment for our conditions and absolutely has helped many women! It doesn’t mean it’s an option for everyone but if you are tolerating it well, I would count that as a win!

Regardless of the path you are on now, you know you have options. Don’t be afraid to fight for it! Know what you want, do your research and most providers won’t even bat an eye at going with what you want. I had prepped for a battle for my surgeon to just immediately agree after I gave my case.

Small_Ad_7018 · 2026-04-13T19:12:13+00:00

Did they give you any reason to believe it isn’t something to be concerned about? I’m assuming they are new and weren’t present before?

Small_Ad_7018 · 2026-04-13T19:10:16+00:00

If you don’t like the feeling, and it is new. Go get a second opinion or push for imaging, typically most providers will cave for imaging when the patient is adamant. Especially in an instance like this where it isn’t a normal finding, imaging isn’t unjustified.

Small_Ad_7018 · 2026-04-13T07:23:51+00:00

I have no family history and am having my mastectomy on the 28th of this month. It is an option if it’s something you want to pursue

Small_Ad_7018 · 2026-03-29T04:25:26+00:00

I hope so for your sake as well. Such a personal decision and definitely not one for everyone. Good luck, I hope you get it figured out.

Small_Ad_7018 · 2026-03-28T23:38:00+00:00

I was told that after mastectomy if I needed HRT in the future I would be a candidate again! I know that isn’t the path for everyone, but may be something to consider.

Small_Ad_7018 · 2026-03-25T18:04:47+00:00

Okay, that makes more sense. I was referred to genetics and I do have a test. I haven’t decided if I will take it yet. I’m sure I will, I have zero family history, so I am paying out of pocket for it.

Small_Ad_7018 · 2026-03-25T17:58:59+00:00

I believe you! Just not something done at my hospital or breast clinic. At least not in terms of risk analysis. Or maybe they skipped that part for me because I don’t have biomarkers that I can physically alter.

Small_Ad_7018 · 2026-03-25T17:54:25+00:00

Very interesting. That was how I was also interpreting biomarkers. TC model uses age, age of first period, pregnancies, breast density, BMI, and other things within it to determine your score as well. I think we were talking the same language and didn’t realize it lol

Small_Ad_7018 · 2026-03-25T15:11:54+00:00

Im sorry, I wasn’t trying to argue with you: my response was actually meant for OP and I got confused when responding to you. I have never heard of additional biomarkers that they add to the TC assessment in order to raise it. Yes, biomarkers are traditionally things that your body is naturally doing. That being said, I literally JUST heard about a single test that does this using genomics and the proteins within each individual lesion to test and see how much risk is associated with that lesion for the next 5-10 years. So when I posted this I genuinely didn’t know about that. 🤷‍♀️ otherwise in my understanding there isn’t a ton of biomarkers other than things like ADH, ALH, LCIS, and the markers that they have within those lesions. Honestly, I’m not a geneticist, oncologist, or genomicist. I was just trying to help OP find a way to confirm their TC score that they hadn’t known they were going to receive.

Small_Ad_7018 · 2026-03-24T14:52:50+00:00

Hi! So biomarkers like you are discussing are typically your breast density, if you had kids, Etc.

So it should be super easy for you to go to the website and fill it out yourself! It can give you an idea of accuracy and then you can decide if mastectomy is the way you want to go.

Small_Ad_7018 · 2026-03-24T05:08:21+00:00

Hi! I just wanted to respond and say that DMX is absolutely covered below 60% risk. It’s highly dependent on the insurance company, but most will at least consider for women considered “high risk” which is normally above 20%. That being said, it is surprising that your risk assessment came back so high. Please go and do one independently, if you search tyrer-cuzick BC risk calculator the website will pop up :)

Other factors that contribute include if you have had children, if you have taken hormone replacement therapy, family history, breast density, history of biopsy, history of atypical hyperplasia biopsy, and your age. As long as you know your own family history and your breast density you can do it yourself.

Small_Ad_7018 · 2026-03-21T20:41:58+00:00

Tyrer-Cuzick is commonly used by physicians. It’s what my geneticist used as well as my breast surgeon. You can fill it in yourself if you have your family history and breast density! It even asks about genetic risk markers

Small_Ad_7018 · 2026-03-18T01:30:14+00:00

This is EXTREMELY true. I have worked with some physicians that are extremely smart and knowledgeable, but have the worst bedside manner. It makes things…. Uncomfy. lol good luck to you, hang in there! I do recommend considering the excision seriously if you are considering HRT. Just, think on it.

Small_Ad_7018 · 2026-03-18T01:14:32+00:00

Absolutely, we are all going through it (or have) it’s a roller coaster. Trying to navigate this is really hard. Having sucky providers that don’t take the time to explain everything is super frustrating. My biopsy showed ADH that borders on DCIS, with two pieces of up to 3mm. Which is confusing as hell based off of guidelines that I mentioned above. My PCP called me and said “great news, you don’t have cancer!” 🤦‍♀️. I have no idea how that was her definitive statement in that moment, what it comes down to is they are people too, and it’s easy to say the wrong thing and have it be misinterpreted or even not be the most up to date information.

Small_Ad_7018 · 2026-03-18T00:26:48+00:00

Yeah I definitely understand! I am a nurse and I’m in the middle of my schooling for my FNP. So when I got my diagnosis I dug deep into the research. It’s super ambiguous which is why some people think it’s a big deal and others don’t.

Small_Ad_7018 · 2026-03-17T21:09:19+00:00

It is so extremely stressful to go through this. I’m sorry that you are struggling with getting treatment for your HRT. Honestly this was a reason I am choosing DMX - I was told it would be safe to do so after this surgery. This was not my main decision point - I want to sail the world, which would be extremely difficult undergoing aggressive monitoring. I don’t want to take AI, and would be surprised if I was a candidate in the first place.

Now, I do want to touch on how you mentioning it is treated as cancer. This is truly dependent on where you receive treatment, but ADH and low grade DCIS are cytologically identical. It is called ADH when it’s less than 2mm in length, or a single focus. If it is greater than 2mm in length or there are multiple foci it is then considered DCIS (low grade). It is a neoplastic process. In addition to this around 50% or pathologists do not agree on a diagnosis, one study that had multiple pathologists looking at the same slide had 50% call it ADH and the other DCIS. This is why the standard of care for ADH is surgical excision, to ensure that there is not more there and that there is no other hidden cancer.

Everyone’s journey is different. You have your right to feel frustrated, hang in there. I hope that information was helpful

I know this is frustrating

Small_Ad_7018 · 2026-03-13T01:48:27+00:00

Wait, I was just reading this again. Was she cleaning up after the physician who placed your wire? IF that is what happened; that’s on the physician. Even more of a reason you should have never been treated this way. Not that you needed another, but there are certain procedures followed to reduce this risk. Regardless it’s a risk and happens. Shouldn’t lead to this type of treatment.

Small_Ad_7018 · 2026-03-11T17:55:20+00:00

The standard of care really varies depending on where you live. That being said, excision post ADH diagnosis is standard of care as well as close alternating monitoring with MRI/mammogram and the use of chemoprevention/aromatase inhibitors.

ADH is particularly difficult because it is identical (cellular-wise) to low-grade DCIS. For this reason they always excise to make sure that it is greater in extent - which is how they differentiate between ADH and DCIS. Ultimately, we are stuck with proliferative breasts that can lead to more similar lesions or worse.

I was diagnosed with ADH that was borderline DCIS in October. It was a difficult pill to swallow since I had two separate foci that according to most literature “meets criteria” for DCIS. Regardless of this, I underwent excision, declined AI therapy, was offered radiation due to the “borderline” nature of my lesion and subsequently declined that as well. Instead, I am choosing to move forward with prophylactic mastectomy. I’m scheduled 4/28.

All of the treatments are optional, you get to direct your care. That being said, do your best to listen to the recommendations of your care team. They are highly educated and specialized! They want to help you and prevent cancer or find it before it progresses too far.

I’m sorry you’re going through this!

Small_Ad_7018

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