You've received great feedback here! I'm at the front end of this like you.... To Beesie's point what type of surgery is such an individual decision. When I first met with the local general surgeon just over a week ago I did not even know what was in my pathology report. Now I do: DCIS Grade 3 comedonecrosis - 2 foci in stereotactic biopsy, something about 1.5 mm - I need to look at that again. I also heard him saying I'm likely high risk for some type of invasion - he was referring to me as somewhat in between DCIS and invasive though that is yet to be determined of course. I don't think anyone will be surprised if I'm not upgraded, whether after this Friday's MRI or after surgery. I was initially only considering lumpectomy and felt MX would have been overkill for me. Now I've had 3 medical people tell me radiation is not a likely option for me due to having scleroderma. I would not be comfortable with lumpectomy and no radiation. I have yet to meet with RO though have appointments set up locally and at a distant breast care clinic associated with an academic-research center. I will see a breast care surgeon there as well. I have an extensive family history of various cancers with most dying in the 50's. That has me seriously rethinking LX (if I have that right - still very new) and considering MX - My breasts are very large with very dense tissue and reconstruction is not an option for me. I realized that prior to diagnosis (as odd as that may sound). So if I choose MX I'll likely choose BMX. Due to scleroderma I would never have implants and I don't heal well so any additional surgery is too risky. I'm a frequent flyer at the local wound clinic - so far limited to hands and feet. I can't afford to go through additional surgeries if possible - including multiple lumpectomies. I worry about healing with a MX or BMX too though I do heal ok (a little slower tho ok) except for hands and feet right now. That will worsen too over time. I've learned a lot on this site the last 4 days or so - and yet huge decisions in front of me, like you! It's awesome people open up and share about their experiences to help inform and support us. It also helps me consider pros and cons given my situation, what I'm comfortable with or not, or think I might be or not. I'm doing what I can to stay grounded, keep things as normal as possible in these earlier days especially while I can feel my anxiety increasing some with the MRI just 2 days + a handful of hours away. I will be surprised if additional things are not found. I've had two biopsies in my other breast several years ago as well though those came back ok - again extremely dense breasts so we'll see. So glad you posted here and thanks to Beesie and MinusTwo!

Great news that the pathology showed no surprises and that you are feeling well!

Radiation? Definitely not required after a MX for DCIS if the margins are clear. And not given for ADH/LCIS. You say want "to get aggressive to keep the recurrence risk down to minimum" - keep in mind that after a MX, with clear margins, your risk of recurrence from the DCIS diagnosis is only 1% - 2%. Because you will be taking endocrine therapy to address the contralateral risk, you will be cutting this 1%-2% by approx. 50%. Having radiation for a 0.5%-1% benefit puts your overall health at greater risk from the Rads than from the DCIS.

Medical Oncologist? I don't think you need to consult with a couple of them - that is nothing complicated or controversial about your diagnosis or treatment plan - but personally I would want to speak to one. A surgeon operates. An MO handles the rest. If you'd just had the DCIS in one breast, taking endocrine therapy (Tamoxifen or an AI) would be optional. With the LCIS and ADH in the remaining breast, while it's still optional, there certainly is more risk reduction benefit, relative to the develop of a new contralateral breast cancer. An MO should be able to discuss this risk with you, and an MO should monitor you while you are Tamoxifen - or at least arrange through your PCP for regular testing for side effects (vaginal ultrasound, for example, if you take Tamoxifen). I suppose some surgeons do this, but that's not normally within a surgeon's area of expertise.

HER2 is not relevant to DCIS. That's why it was not on the report - most facilities don't check for it with DCIS. Only a few do provide HER2 status for DCIS, but they don't do anything different if it's HER2+ or HER2- because there is no evidence that it holds any significance for DCIS and there is no difference in the treatment protocol.

Yes, I mention the Oncotype DX for DCIS in my "Topic: A layperson's guide to DCIS" thread that I referred you to almost a month ago.

There is no reason to discuss it with your surgeon. This Oncotype test is only for patients who have had a core needle biopsy (and no surgery yet) or a lumpectomy for DCIS. See the eligibility requirements on the Oncotype website.

As I explained in my earlier post, "Having radiation for a 0.5%-1% benefit puts your overall health at greater risk from the Rads than from the DCIS." For this reason, radiation after a MX for DCIS is never prescribed except in those rare situations where the chest wall margin is either involved or very very close. Even then, it is controversial as to whether rads is necessary and about 50% of women in that situation have rads and the rest don't.

I don't think there has been a study comparing 5mg of Tamoxifen to 20mg of Tamoxifen; the study I believe your surgeon is referring to compared 5mg of Tamoxifen to a placebo. However the 5 year reductions in ipsilateral recurrence and contralateral new primary with the 5mg Tamoxifen were similar to what previous studies had shown for 20mg, so the assumption is that 5mg is equally effective to 20mg for patients with DCIS, LCIS and ADH.

Randomized Placebo Controlled Trial of Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence in Breast Intraepithelial Neoplasia https://ascopubs.org/doi/10.1200/JCO.18.01779

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A 2% risk over 10 years for your right breast, after a left breast diagnosis of DCIS and with LCIS and ADH found in the right breast? That is significantly lower than anything I've seen in my reading on this stuff.

As I recall from our previous exchange of posts, the 14% risk that your surgeon had mentioned earlier (which was actually a 28% risk, reduced by 50% on the assumption that you take Tamoxifen for 5-10 years) seemed more in line with what I would expect. This is where the MO comes in, because this is not a surgeon's area of expertise.

Barb,

Whereas invasive cancer may develop directly from DCIS, LCIS in most cases is different in that it doesn't develop directly into cancer, but instead is a condition that puts you at higher risk to develop breast cancer anywhere in either breast. LCIS also tends to be widespread and may be found in both breasts. But LCIS is often invisible on imaging, so it usually is found incidentally when something else shows up. Therefore the fact that you have what appears to be clear margins from LCIS doesn't mean that there might not be more LCIS somewhere else in either breast, or that it might not develop again at some point in the future in either breast. And the fact that you had the LCIS increases your future breast cancer risk for both breasts.

I have read that after a diagnosis of breast cancer (including DCIS), our risk to be diagnosed again - with a new primary breast cancer, not a recurrence - ranges from 0.5% per year to 1% per year. While you have no family history of breast cancer, your personal history of DCIS is more important than that - you are your own closest family. I suspect that for someone with no other significant risk factors, the 0.5% per year risk is probably about right but for those who do have other risk factors, such as your LCIS, the 1% risk per year seems reasonable.

That said, for all women, risk both increases and decreases as we get older. It increases in that a woman's annual risk to be diagnosed with breast cancer increases as we get older. This chart shows the 10 year breast cancer risk the average woman faces over each decade of her life:

However as we get older, because we have fewer years ahead of us, our lifetime risk goes down. The average woman has approximately a 12.4% risk to develop breast cancer over her lifetime. But by age 60, that risk is down to 8%. This is because the risk from one's 20s, 30s, 40s, and 50s has all been "left behind" as we've passed those ages.

My MO told me that my risk to be diagnosed again, having had a UMX for DCIS-Mi, was about double what it would be for the average woman my age. I was 49: the average 49 year old has approx. a 10.5% chance of being diagnosed over the rest of her life (take 12.4% lifetime risk and subtract one's 30s (0.44) and most of one's 40s (90% of 1.47) plus an additional 0.1% for one's 20s) so that made my risk approx. 21%. Assuming a life expectancy to age 90, that's 0.51% per year. Without adding LCIS on top.

All that to say that what you were told seems consistent with what I've read and heard. But while your risk might average to 1% per year over your lifetime, it may in fact be a bit lower over the next 10 years and higher once you enter your 60s.

Hi Barbara, the oncologist gave me the same percentage - 1%. I asked out of curiosity since I had a bilateral and I have, according to the oncologist, less than a 1% chance overall to get breast cancer again.

"Then why the other member decided on bmx due to variant of this msh2? So hers is different than mine?"

• If she had a MSH2 positive and you had a MSH2 VUS, then yes, her variant was different than yours. For a single gene there can be hundreds of different mutation variants. Even two variants for the same gene that are both considered positive will not confer the same level of risk - some may be low risk while others may be high risk; some may confer risk for a particular disease while others don't. Many mutation variants are just a small error in the gene that don't confer any risk of disease at all - those are the ones that are considered negative even though they are a mutation. With a VUS, they just don't know yet where it lands, however eventually more VUS mutations end up being negative than positive.

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"No I do not know any known cancers in my families, but my grandparents on both sides passed away early in their 60s"

• People who have genetic mutations that predispose then to cancer generally (not always, of course) are diagnosed at a younger age than those who develop cancer due to aging (as cells are prone to fail) or an external (environmental, etc.) cause. If all your grandparents made it to their 60s without a cancer diagnosis and none of your parents or aunts and uncles have had cancer, it's unlikely that you have a high risk genetic mutation. Nothing is impossible of course but if that was my family history, it would never occur to me to be concerned about inherited risk. By comparison, in my family, 3 of my grandparents died of cancer (the 4th died in her early 30s), both my parents have had cancer, and my siblings and I have all had one or more cancers.
• Given that you had IVF (which may or may not increase breast cancer risk, depending on the study) and have no family history of breast cancer or any cancers at all, why did you have genetic testing? Sometimes testing just adds to the confusion rather than provides any answers.

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"also see if MO can follow up with me on bloodwork regularly."

• Why?

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"And see if I need to do vaginal ultrasound regularly. And any suggestions on ovrians."

• Read here: Follow up Care After Breast Cancer Treatment

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"I had ultrasound last year and it did not detect a thing! It is hard to believe that my DCIS grew from 0 to 8cm all in one year!"

• Ultrasounds as a rule do not 'see' calcifications or DCIS. So no surprise that your ultrasound saw nothing.
• It is extremely unlikely that your DCIS grew from 0 to 8cm in one year. More likely (almost certainly) the DCIS has been present for many years but the calcifications hadn't developed yet (calcs form as old cancer cells die off) or were too faint to be seen.

I agree with MelissaDallas.

everythingwillbefine, from a medical standpoint, there is nothing controversial or difficult about your base diagnosis and treatment. After a UMX for pure DCIS, with clear surgical margins, the only treatment decision is whether or not to take endocrine therapy (Tamoxifen or an AI) as protection for the remaining breast. MOs and patients are about 50/50 on that. What complicates your situation is the LCIS, which is a significant high factor. What I don't know is how much the addition of LCIS, on top of your DCIS diagnosis (which automatically increases your risk of being diagnosed again), further increases your risk. Is the LCIS already baked into your risk because you also had the DCIS diagnosis? Or does the LCIS add to your risk? From my perspective, this is the most important discussion to have with the MO.