Topic: just diagnosed DCIS / LCIS

Jul 15, 2020 01:53AM MinusTwo wrote:

'everything' - it's usually better to stay with the thread you already created, which has extensive postings. People have been following your history to date and would be better able to comment.

That said, if you go to 'my profile' and add your diagnosis & planned treatment to date, it also helps other members know where you are.

Jul 15, 2020 05:32AM everythingwillbefine wrote:

does anyone have a recommendation of the breast center?

I live in Chicago

Thank you

Jul 15, 2020 08:05PM Beesie wrote:

Whoa. Take a deep breath. You are jumping to conclusions based on words you are reading that you don't understand. In reality, except for the diagnosis of DCIS, there is nothing concerning in the pathology report.

Your DCIS is intermediate grade (grade 2) and solid type. That's not the least aggressive but it's far from the most aggressive, which would be high grade (grade 3) with comedonecrosis. No reference to the presence of necrosis is good.

The sclerosing adenosis is a low risk factor but less than the DCIS or LCIS or ALH, so nothing to worry about. It's very common to find other conditions like these mixed in with DCIS or invasive cancer. I had about a 1/2 dozen (seriously!).

The staining done that shows an "intact myoepithelial cell layer" is confirmation that this is DCIS and not invasive cancer. The fact that there is no comment saying "the presence of invasive cancer can't be ruled out" is good - this is a comment that is often made on DCIS biopsy pathology reports. It doesn't mean that there's no chance of upgrade but it says that the area of DCIS examined shows no signs of movement towards invasive cancer.

The reference to "E-Cadherin shows a loss of staining" simply means that the atypical cells found in conjunction with the DCIS (which is very common) are lobular, i.e. ALH, and not ductal, i.e. ADH. Since you already have ALH in your other breast and it is common to find both LCIS and ALH in both breasts and since the ALH found here is a lesser condition than DCIS, this is nothing of concern.

The high % ER+ and PR+ is good, since this means that your cancer can be treated with endocrine therapy (anti-hormone pills). If your final diagnosis is pure DCIS and you opt for a BMX, you won't need to take endocrine therapy, but it's a good treatment option to have available. Those with ER-/PR- cancers don't have that option.

On average 20% of DCIS needle biopsy diagnoses are upgraded to invasive cancer once the surgery pathology is in. Most often, the upgrade is small - either a microinvasion or a small invasive cancer. There is nothing in your biopsy pathology to suggest that your risk is higher than average. Every case is different, of course, but it might help you to know that I had two areas of DCIS totalling over 7cm of grade 3 DCIS with comedonecrosis - that's as aggressive as DCIS gets - and while I was upgraded to Stage I, it was because of a tiny 1mm microinvasion of invasive cancer, which had no impact on my treatment plan. I've seen others with large aggressive DCIS who have not been upgraded; by comparison, your DCIS, while not indolent (no one is likely to suggest "watchful waiting") is not overly aggressive.

At this point it's impossible to know whether your diagnosis will be upgraded however there is nothing in your biopsy pathology to suggest or having you thinking the worst.

Jul 15, 2020 10:38PM Beesie wrote:

Keep away from the Stage IV forums. Are there some people who have Stage 0 DCIS who end up with metastasis? Yes, it can happen. But the long term survival rate for patients initially diagnosed with Stage 0 DCIS is 97%-99%.

What is very common is for people to be diagnosed with both IDC and DCIS together. When that happens, the diagnosis and treatment is based on the IDC; the DCIS needs to be surgically removed but can otherwise be ignored because anything done for the IDC will be more than sufficient to treat the DCIS. The problem is that sometimes someone diagnosed with both DCIS and IDC lists their diagnosis as DCIS. This is wrong but there are dozens of signature lines like that on this board. The other problem is that the profile page on this site is set up poorly, in that it allows for 2 different diagnoses at the same time in the same breast. As a result, many women who are diagnosed with a combination of DCIS and IDC state that they have DCIS Stage 0 and IDC Stage I (or whatever stage it is). This is wrong. DCIS, when found together with IDC, is not Stage 0. It is not staged because it is the lesser diagnosis.

All that to say that you can't believe everything you read, even on this site. You would think that everyone correctly states their diagnosis but unfortunately that's far from true. And while from my 14+ years here I know of a few of women who had an initial diagnosis of Stage 0 DCIS and subsequently had an invasive recurrence and went on to develop mets (3 women in particular come to mind), most of the "DCIS women" you see posting in the Stage IV forum never really had Stage 0 DCIS.

"I read some article saying the DCIS is treatable and have a life expectancy as normal population but from what I read on here I'm not sure." What you read is true. Trust medical articles from reliable sources over anecdotes from individuals.

As for Tamoxifen, don't start making decisions and presumptions without the facts. The reason Tamoxifen is generally not recommended after a BMX for pure Stage 0 DCIS is because the risk of recurrence after a BMX is usually (there can be exceptions) only 1%-2%. Tamox cuts this risk in half, so the benefit is between 0.5% and 1%. The risk of serious side effects from Tamox is greater than the benefit. So you would actually put your health at greater risk by taking Tamox than by not taking it. This benefit vs. risk equation shifts for those who have a lumpectomy and therefore face a higher recurrence risk, and for those with invasive cancer, who face both a risk of local recurrence and a risk of distance recurrence (metastasis).

Please, for your own sake (and mine - I can't keep writing these long explanations), take a step back, stop drawing conclusions from information that you don't yet understand (no one does when they are first thrown into this world), and most importantly, stop presuming the worst. None of this is easy - we've all been there, we all know - but you are making it much harder on yourself than it needs to be.

Jul 15, 2020 10:59PM - edited Jul 15, 2020 11:02PM by MinusTwo

You asked about doctors - here's the link to the NCI cancer centers so you can find one in your area.

https://www.cancer.gov/research/infrastructure/can...

I can't go back and comb through your posts. Will you please go to My Profile and add your diagnosis to date in a short tag line? You have to make it public for everyone HERE to see it.

Based on your questions on this and the other thread, you may want to talk to an oncologist (MO) before you do surgery. I didn't have chemo at first so technically didn't need to, but I was glad the oncologist was "driving the bus" and coordinating between the surgeon, the radiation oncologist, my OB/Gyn, etc. He took my tests before the hospital tumor boards so everyone got together with the same treatment. He answered all my questions - ad infinitum. Surgeon's cut. That's their job. Even though you select a specialist Breast Surgeon (BS) (which you should), many of them aren't good with lots of talking.

Edited to second Beesie. Way too much thinking ahead. Take a break and binge watch TV shows or take long walks, or whatever. Go buy the latest edition of Dr. Susan Love's Breast book. You can mark it up with highlighter or yellow sticky notes and take it with you to the doc.

Jul 15, 2020 11:56PM Beesie wrote:

MinusTwo, at this point the most serious condition found in the various biopsies is DCIS, so definitely no chemo prior to surgery and no need to see an MO until the final pathology from surgery is available. Usually with DCIS, an MO will not see a patient until after surgery so that they have all the info to make a recommendation on endocrine therapy.

everythingwillbefine, just so that you don't worry, chemo is never given for pure DCIS. Should your final diagnosis include invasive cancer, then chemo might be considered but there are many factors that go into that decision and most women with early stage ER+/PR+ breast cancer don't require chemo. Don't want you to panic on that one!

Jul 16, 2020 01:13AM MinusTwo wrote:

Beesie - I wasn't trying to worry her about an MO, but I did have pure DCIS the first time and the oncologist was my first port of call right along with the breast surgeon. There was no push back about seeing him and no one questioned me about scheduling an appointment. I wanted to discuss the whole picture (or what I thought I knew at that time - which was pitifully little looking back).

I think we all have doctors we like & trust, and doctors we find more abrupt. In my case, my MO was gold. No chemo. No endocrine therapy since I'm ER/PR negative. And since I had a BMX with clean margins, no radiation. Still, the MO is the one who made sense of everything for me, ordered all the pre-surgery testing and followed up for two years.

Jul 17, 2020 02:25PM - edited Jul 17, 2020 02:28PM by everythingwillbefine

how did you ladies decide to have a BMX or single mastectomy and ecsional biopsy on the other side?

I don't have firm decision yet.

my left side needs a mastectomy as the area is big DCIS. I plan to go flat on that side. The surgeon said the tumors are close to the skin so it would be more chanllenging to get a clean and wide margin if she has to save some skin for reconstruction and I am fine to go flat. And she is going to remove a few Sentinal nodes during the operation too.

however my right side is ADH LCIS and FEA. She said I have option to do an excisional biopsy during mastectomy and if no cancer then I might just take tamoxifen later.

I am not sure whether I should do a BMX just for preventio or not? Is BMX overly aggressive for my case?

Also is doing BMX make the recovery time longer?

Doing BMX better prevent recurrence?

Thank you

Jul 17, 2020 03:28PM - edited Jul 17, 2020 03:29PM by ctmbsikia

That's a decision only you can make. It is good you have the option. Looking back I was only given the option of left side mx.. A double mx was not given to me as an option. So, since BS felt she could get an OK cosmetic result with my size tumor I chose to keep my breast and did a LX. The LCIS on the right side was also removed during surgery. That breast seems very well behaved now, no mention of anything. I of course am on the AI therapy. I do feel good about my outcome. Good luck to you.

I also want to take a moment and do a huge shout out to Minus 2 and Beesie. They really help people here. It took me quite awhile to comprehend what was happening in my breasts with all this "in situ" stuff. It can be daunting trying to understand your pathology. Thanks to this site I understand I have dense breasts, probably had dcis in one and lcis in the other. Left side went invasive. Mine is actually a mixed type cancer which is a better than straight IDC however I could possibly be a higher risk for a 2nd primary. I don't worry as much these days but it's still there. Especially around testing and appt. times. Had a couple of benign biopsies of fibroadenoma, sclerosing adenosis, and most recently fat necrosis in my left side. Thank you ladies for a stellar job!

Jul 17, 2020 04:16PM everythingwillbefine wrote:

Thank you Beesie. After I posted my question this morning I went back to the beginning of the post and re read your reply and found the link you provided.

I am reading it now.

Thank you!

Jul 17, 2020 04:31PM MelissaDallas wrote:

everythingwillbefine, you need to have a conversation with a geneticist as to future risk if you are questioning the risk of the various atypia in your “good” breast

Jul 17, 2020 04:55PM MelissaDallas wrote:

LCIS is usually only found as an incidental finding on biopsy. It generally does not show on imaging and tends to be diffusely through both breasts. While typical models over-estimate the risk from LCIS, it is not insignificant.

Jul 18, 2020 04:52PM Beesie wrote:

"I read a lot of recurrence happened after mastectomy is invasive breast cancer and a lot of them mets to other part of already."

Where in the world did you read that??? You continue to scare yourself by misinterpreting what you are reading. Go back to my earlier post: "Keep away from the Stage IV forums. Are there some people who have Stage 0 DCIS who end up with metastasis? Yes, it can happen. But the long term survival rate for patients initially diagnosed with Stage 0 DCIS is 97%-99%."

After a mastectomy for DCIS, if there is a local recurrence, it is most likely to occur either against the chest wall or against the skin. Those are areas where, even after a MX, there will always be a few breast tissue cells left (including ductal tissue cells) - it's simply impossible for the surgeon to scrap everything away. Since you are planning to go flat, it will be easy to find that type of recurrence - much easier than it would be if you had a lumpectomy. After a MX, your skin is pressed up right against the chest muscle. So a recurrence either against the chest wall or against the skin will show up as a nodule under the skin. With no breast tissue in the way, as long as you do self exams (i.e. run your hand against your chest skin), it will be quite easy to pick up even the tiniest nodule.

This is why no screening is necessary after a MX for DCIS. And while I'm not a fan of drawing conclusions based on anecdotes, I mentioned in my earlier post that in "my 14+ years here I know of a few of women who had an initial diagnosis of Stage 0 DCIS and subsequently had an invasive recurrence and went on to develop mets (3 women in particular come to mind)". By coincidence (or not), all 3 of those women had lumpectomies, and did not find their localized recurrences until after they had developed into large and aggressive invasive cancers. That's not to say that it would be impossible to go straight from a DCIS MX to a combined localized & metastatic recurrence, but it would be extremely unusual.

As for whether your risk to have a localized recurrence will be higher after a MX because you have a large area of DCIS, that depends on what the surgical margins end up being. If the close margins are by the skin and you are going flat and removing the skin, then you have eliminated that risk. If the close margins are by the chest wall, that could increase the recurrence risk. This is the circumstance under which sometimes women who have a MX for DCIS end up having radiation or taking endocrine therapy (Tamoxifen or an AI) because both of those treatments reduce recurrence risk by approx. 50%. When the risk of recurrence is only 1% - 2%, which is the case after a MX if adequate margins are achieved, these treatments are over-treatment, presenting more risk than benefit. But if the surgical margins are close, the recurrence risk could be 5% or even as high as 16% (as per one study from a few years back), so at that point a 50% reduction in risk from rads and/or endocrine is significant and certainly outweighs the risks from those treatments.

As for whether you can take Tamoxifen if you have a UMX, I addressed this in My Layperson's Guide post:

"- Tamoxifen is usually recommended to those who have ER+ DCIS (except for those who've had a bilateral mastectomy) however the benefit from Tamoxifen varies by individual so it's best to assess your risk & benefit before deciding whether or not Tamoxifen is for you. As with radiation, how much benefit you get from Tamoxifen depends on what your risk was to begin with. Tamoxifen provides 3 benefits: 1) It reduces the risk of local recurrence by approx. 45%. For those who have a high risk of recurrence following a lumpectomy, this benefit can be quite significant. However for those with a low risk of recurrence after a lumpectomy and those who've had a mastectomy, this benefit might be quite low. 2) It reduces the risk of the development of a new breast cancer in either breast. If you've had a bilateral mastectomy, your risk to get a new BC is only 1% - 2% over your lifetime, so the benefit from Tamoxifen is minimal. But if you still have one or both breasts, your risk is higher and the benefit is greater. However it's important to remember that your risk to develop a new BC spans your entire lifetime whereas Tamoxifen, even if taken for the full 5 years, will provide risk reduction only for approx. 10 - 15 years. If you are 50 and your lifetime risk to develop a new BC (over 40 years to age 90) is 20%, this means your risk over the next 15 years is probably around 7%. Tamoxifen can reduce this risk by approx. 45%, taking it down to 4%. As a result, your lifetime risk would go from 20% to 17%. 3) It reduces the risk of a distant recurrence. This benefit isn't a factor for women who have DCIS, since by definition DCIS cannot move beyond the breast and develop into a distant recurrence (mets). The net of all this is that taking or not taking Tamoxifen is your choice, based on how you feel about your risk level and the benefits you'll get from Tamoxifen. Some women will get a significant risk reduction benefit from Tamoxifen whereas other women will get minimal benefit."

In your case, given that you have LCIS, ADH and FEA in your contralateral breast, it's likely that your risk reduction benefit from Tamoxifen after a UMX would be signficant.

Jul 18, 2020 10:11PM Beesie wrote:

Happy Birthday! Not the best circumstance to be celebrating, both with your diagnosis and with Covid, but just think what a big celebration you will have next year, once this is all behind you!

And for today, do what you can to have a great birthday... make sure to treat yourself (or have someone else treat you)!

Jul 19, 2020 01:37AM LiveLoveLaugh2020 wrote:

Sorry you had to join the club. Wishing you the best going forward and Happy Birthday! 🙂