Small, low-grade DCIS; what to do?

percy4

I was diagnosed with lowest grade, non-comedo, ER+ DCIS.  First had suspicious mammogram, 2nd one showed Birad 4 (low side) so had stereotactic biopsy, vacuum-assisted.  Only 2 samples taken, as the whole area involved is less than a centimeter.  I don't understand why a biopsy the size of a walnut-to-golfball is going to be taken out of my small breast for this tiny area.  Clear margins is one thing, but; seriously.  There is a clip marker there, and it was the gummy kind with collagen (which is then absorbed) to make it not migrate much between placing it and after-biopsy mammogram.  Also was told it had less chance of migration as I have dense breasts.  So they pretty much know where the one-third inch area is.  Isn't that a large lumectomy in this case?  Also, I know there is a chance they will find a higher grade DCIS, or more, upon lumpectomy, but if they don't and have 2 mm margins at least, why am I having radiation and tamoxifen for 5 years?  The disfiguring surgery is hard enough, but I get it (though not the size of tissue being removed).  But the other stuff, in my case?  Would appreciate any input from anyone who really feels they know something about  case like this.  I am 56.

ballet12

Hi Percy, I'm not an "expert" on this, so you'll need to defer to Beesie, who has a tremendous store of knowledge about DCIS, available on the DCIS threads. She will also probably respond to your post. Beyond that, what I will say is that if you are contemplating foregoing radiation, which may be a real possibility, you shouldn't be afraid of attaining wide, clear margins. Although 2 mm is the minimum to be considered "clear", it would be much better to have wider margins in the scenario of foregoing the rads. In addition, I would definitely wait until they do the lumpectomy before getting too definitive in your mind about the treatment plan. There could be higher grade DCIS or lots more DCIS, especially since they only took two samples, which isn't much at all. You may or may not be recommended for radiation and tamoxifen (or aromatase inhibitor if your oncologist believes in using it for post-menopausal dcis). I am not taking tamoxifen or an AI because of concerns regarding side effects, combined with some issues in my medical history. I didn't have a strong ER response on the larger lumpectomy and no PR response.

gtgirl

I am really freaked out now! I just read on someone's dx that they had DCIS high grade 3 opted BMX and it came back as IDC. Ugh. My path report never mentioned Comendo, but it did state focal and necrosis. I fell into intermediate high. I wish I could understand my path report 100%.

percy4

Thank you, my sisters.  There is no cancer in my family at all, so I'm still reeling from being newly in cancer-world.  Never joined a forum before in my life, but this is the time.  Yes; I'd love to hear from Beesie.  Have been lookng at this forum for a few days before joining, and as you must know, Beesie, you're the rock for all of us here.  What do you think, addressing my original questions?

percy4

And, to be honest, I'm afraid of pissing off my surgeon (she's good, and nice, but clearly only thinking about the going standard treatment, which she honestly believes in).  I'm tied into Kaiser (which I've always liked), income an issue, and really can't afford to go outside of Kaiser for other opinions (though I can do so, within KP).  Will talk to radiation people, but I know what they will say, and if you refuse the recommendations, then how do they feel about you?  Think I need to ask radiology people about different options, without telling them my possible intentions, as I don't want them to presume I will refuse radiation, and advise my surgeon to take an even bigger piece.  Are you blamed/ penalized for your choices?  Ballet12, really appreciate your input, and advice about big margins.  I agree.  Still, a golfball for a third of inch area?  Seems like that's 3-4 times bigger margins than one would need.  Is there a way to let Beesie in on this (I'm new to it), or will she just probally see my Posts?

percy4

And, then (it's all coming to me now), I'll have to quit alcohol.  Not a heavy drinker, but enjoy 2-4 glasses of wine a week.  Let's be honest.  How can I think of refusing an estrogen-blocker, and still consider adding estrogen to my body from alcohol?  That would be stupid.  So, I now have to become either a never-drinker, or a VERY occasional, like holidays only, drinker.  And no soy.  And no Estriol, though I've really needed it for vaginal comfort, even without intercourse.  Sorry for all the Postings, but all this is a lot.

Beesie

Wow, a rock star? Thank you , but I don't think so. I've just been hanging around here for a long time now so I've seen a lot!

I agree with everything ballet12 said. First is that you really don't know your diagnosis until you've had surgery. Hopefully this will turn out to be just a single focus of low grade DCIS, but from a needle biopsy, you don't know that yet. So the surgery is important in order to know the true diagnosis.

Second is that if it turns out that you do have just a single focus of low grade DCIS, it may be possible to skip rads and skip Tamoxifen - this is becoming more accepted these days, given the concern about over-treatment of DCIS. However, to ensure that you are not putting yourself at too much risk of recurrence, you really want to ensure that you have wide clear margins. As ballet said, 2mm is considered the minimum acceptable margin. "Ideal" margins are 1cm (over 3/4 of an inch). So if you have a small lesion that is in the center of the removed tissue, and you have at least 1cm of clear margins all around, you are looking at the removal of an area of tissue that about the size of a large walnut (but probably is smaller than a golf ball, which is about 4cm in diameter - yes, I just measured one!).

Personally, while I have no fear of rads and would gladly have rads if it was necessary, I'd also be glad to avoid rads if my recurrence risk was low enough (recognizing that "low enough" is in the eye of the beholder). With a small low grade DCIS, for me I think that would be possible. So I'd go for larger margins in order to feel confident passing on rads. In fact, if my margins were not at least 1cm all around, I'd probably opt for a re-excision in order to get wider margins, and then I would pass on rads.

As for Tamoxifen, that's a different story. Tamoxifen can cut your recurrence risk by about 45%, but if you already have a very low recurrence risk after a lumpectomy, then the primary benefit from Tamoxifen will be protection against the development of a new breast cancer in the future. Anyone diagnosed with breast cancer one time is higher risk (than the average woman) to be diagnosed again. But whether you feel the need to take Tamoxifen for this is a completely personal decision.

Hope that helps!

Beesie

As for alcohol, that's a personal decision. Alcohol is a low risk factor for breast cancer and breast cancer recurrence - not a high risk factor. It gets a lot of attention however because it is one of the few risk factors that we can affect. Personally I've looked at the numbers and have decided that the amount that I increase my risk by consuming wine with dinner (pretty much every night - so it's more than 2-4 glasses a week) is not enough to get me to stop consuming something I enjoy.

I have stopped drinking soy milk, however and have replaced it with almond milk.

If you feel better cutting back on alcohol, or eliminating it completely, that's great. But if you don't want to, I'd suggest that you dig into the data in more detail so that you understand how much it affects your risk, and then you can decide from there.

exbrnxgrl

Beesie is indeed the expert here. I would like to add one thing, though it has little bearing on your ultimate dx or tx. Breast cancer, from what is currently known, is genetic in a very, very small number of cases.So, lack of family history is not much of a shield against developing it. Wishing you the best.

percy4

Thank you, Beesie, for getting involved in my story.  I know, from reading other Posts, that (before lumpectomy results) I have a really nice case, if you have to have one.  I am so happy to be here; you know that no matter how much people love you, it becomes wearing on them to talk and talk about this.  Only we have the ability, and desire, to analyze this over and over with each other. And, as I said, I am not a group person, but I think this is my group.  May have many other questions as this goes along, and now I feel I have a place to come to.  Thank you all so much.  Love - P.

percy4

Just wanted to say to gtgirl; haven't ignored you.  I am worried about your concerns, but I'm new here, and don't have the knowledge yet to give you advice.  But you were heard.  Ask more again, if you want to.  Someone who knows more than me will help you. xx

wyo

HI percy

I am also a kaiser member and no one told me I had to do anything- all options were presented and I had to pick what I wanted to do.

I hope you don't feel like you have to just do what your surgeon says so they are not mad at you- who cares if they are? Physicians don't like being questioned sometimes but you are the patient and its your life and your breast so your decision.

Kaiser has a tremendous amount of research on breast disease and treatment given their large database of members so don't feel like you are getting second tier care- given all I have read here I am more convinced I got exceptional care and all my team knows what is going on- love the integrated model.

I am also not "well-endowed" but had a small IDC cancer and got fantastically clear margins- yes I lost a fair amount of breast tissue which I am happy to loose to not have anything hiding in the margins etc. I am also having radiation- 16 days- I am not having chemo oncotype score 13. Unfortunately I am not menopausal so the plan is to start on Tamoxifen and move to AI once I can. Again all of that is what I selected- my surgeon said she would do bi-lat mastectomy with plastic surgeon immediate reconstruction if that was my choice.

You have the biggest investment in your diagnosis and treatment- no one cares more than you do

Keep us posted

ballet12

gtgirl, it does happen 20 percent of the time that after lumpectomy or mx, the DCIS diagnosis is upgraded to IDC, but it doesn't happen 80 percent of the time. Hope your mx goes well and you don't have this issue.

Beesie

Percy, yes this is your group and you do have a place to come to ask questions and analyze things over and over. I'd say that we are glad to have you join us but honestly I like it better when no one has any reason to join us!

gtgirl, to add to what ballet12 said, of those who start with DCIS (from a needle biopsy) but who end up with a diagnosis of invasive cancer once the surgery is done, about 15% of that 20% have just one or a couple of microinvasions. A microinvasion is a very tiny (1mm or smaller) area of invasive cancer. Generally the treatment plan doesn't change at all for those who have DCIS with a microinvasion (which is my diagnosis) vs. pure DCIS, and the long term prognosis is almost as favorable. So only about 5% of women initially diagnosed with DCIS end up with significant changes in their diagnosis after surgery.

Pokemom1959

Beesie - Does that statistic change for a woman who has had a stereotactic biopsy as opposed to a needle biopsy? Thank you again for all of your information - you are very comforting.

Debbie

Beesie

Debbie, around here the term "needle biopsy" usually is used to refer to core needle biopsies or vacuum-assist needle biopsies, whether they are mammogram guided (a stereotactic biopsy), MRI guided or ultrasound guided (sometimes called a core needle biopsy although core needles are used with stereotactic and MRI biopsies too).

Technically a fine needle aspiration is also a biopsy but FNAs usually are used to drain fluid-filled cysts; fine needles rarely are used for biopsy/diagnosis purposes because the sample retrieved from a solid mass (including calcifications) is usually too tiny to make a clear diagnosis. The occasional exception is if someone has a mass that is almost certain to be a benign, a fibroadenoma for example - sometimes in that case rather than subject the patient to a core needle or vacuum-assist needle biopsy, a doctor might try first to retrieve a very tiny sample with a fine needle so that it can be confirmed that the mass is in fact just a fibroadenoma. Personally I don't consider FNAs to be a biopsy, but that's probably just me. I've had 6 biopsies over the years, and if I were to add in all my FNAs, I'd probably be over 20 on the number of biopsies. I prefer to say that I've just had the 6.

So that's my long answer to your question. The 20% figure is referring to those diagnosed with DCIS through a mammogram guided (stereotactic) or MRI guided or ultrasound guided core needle or vacuum-assist needle biopsies.

percy4

OK; now I'm scared, and this is why.  Left alone, if low-grade, small DCIS is all that was in there, and there were no calcifications only 2 years ago, it might have taken years to change, or never.  Looked at my path report, and now see they had to send it on to SF to rule out a micro-invasion.  Their conclusion was that "no unequivical IDC could be found".  Does not sound reassuring, but rather as if they think it might be there, just not unequivicably.  Same report referred to their conclusion that the "abnormality" was probably caused by the stereotactic biopsy itself.  So.  How can piercing the duct during the biopsy NOT cause a micro-invasion?  How would that even be possible, if what the non-invasive DCIS was contained in was punctured (as it was)?  The in-situ part was changed by the biopsy, so how could anyone's later lumpectomy show no invasion, and still be in-situ?  Have they caused me an invasion?  And, if that is probable, doesn't it mean I need the lumpectomy ASAP to prevent any invasion worsening?  If I had known this could happen (was not told) I might have opted for a surgical biospy (which could have, with clear margins, ended up actually being the lumpectomy).  Please tell me all you know about these different questions.  Really appreciate it.

Beesie

percy, a DCIS cell is not the same as an IDC cell. A DCIS cell is about 90% of the way to being an invasive cancer cell, but it needs to undergo a final change at the molecular level before it has the ability to break through the milk duct and survive outside the milk duct.

During a biopsy and during surgery, it's possible that the needle or a surgical instrument might displace some DCIS cells, moving them into the open breast tissue. But a displaced DCIS cell does not become a microinvasion - a displaced DCIS cell eventually dies off on it's own.

If the needle puncture or the cutting of the duct from a biopsy could cause DCIS to become invasive cancer, you would expect a high percentage of women initially diagnosed with DCIS to be found to have invasive cancer once they have surgery, but that's just not the case. When I had my excisional biopsy, I had two areas of very aggressive high grade DCIS and not a single clean margin around either area. I didn't have my MX until 2 1/2 months later - and so you would think that with all those ducts cut open and all those DCIS cells right at the edge of those ducts, my final pathology would have found lots of invasive cancer or at least a few microinvasions. Nope, none at all. I did have a microinvasion, but that was found during my excisional biopsy. My MX surgery only found DCIS.

So no, this is not something you need to worry about. And with DCIS, and particularly low grade DCIS, there is no rush to get into surgery.

percy4

Thanks so much, Beesie.  My surgeon told me a surgical (exisional?) biopsy would be as large as a treatment lumpectomy.  I have trouble understanding how that can be true.  I know I'm trying to go in baby steps here, and did have a stereotactic biopsy, but why not the in-between step of an excisional biopsy before larger lumpectomy?  My less-than-centimeter area is so small, and they've marked it.  Maybe the margins will turn out to be clear.  Or am I being silly?  Is a surgical biopsy the same thing as an excisional; biospy?

ballet12

Hi percy4, technically, if you have already been diagnosed with DCIS, what you would be having now is a lumpectomy, or as you call it, a treatment lumpectomy. They are going for clean margins. Yes, they are also ruling out IDC, but it's a lumpectomy not an excisional biopsy. An excisional biopsy is when they really aren't sure about the diagnosis, as in when they find atypical cells on the stereotactic biopsy and they are going in to either confirm the atypical cells and rule out DCIS. In that situation, they are not going for clean margins. They don't need to. In your case, this would be the treatment lumpectomy, so it would be helpful for you to discuss with them that you want wide clean margins, on the order of 1 cm, rather than the minimal 2mm situation (if that is what you want). They are trying to get the margins around the less than 1 cm area you referred to. I had three surgeries, myself, with the first being an excisional biopsy (as my stereotactic core biopsy showed atypical ductal hyperplasia.) For the second surgery, called a lumpectomy or lumpectomy re-excision, they tried for clean margins, and got most of them. I had to go for a third surgery, and I asked for wide margins and got them. I still had to do radiation, but it was good to get the wide clean margins, nonetheless.

percy4

Thanks, ballet.  I think what I'm trying to do right now is to have the smallest treatment and still be healthy, looking for any possible way to do that.  Maybe I just have not really processed what's in front of me, though compared to so many others, I know I'm lucky, as it doesn't look really bad, so far.  But, to me, it all seems awful, from grieving the appearance of my breast (after going through a series of losses, my pretty little body was one of the few things I had left, and felt happy about), to not wanting to feel poisoned by rads and drugs (even if they help me) and their side-effects, to not having the money to get through this financially, etc., etc.  It's only been three weeks since the first routine mammogram, when, for all I knew, all was well with my health.  My Life has been quite difficult for many reasons the last five years, so my spirit was already a little broken; just been getting back to my old self lately.  And now this.  To me, it all seems surreal.  Even if it goes well.  Thanks for listening.  I know this particular Post isn't so much about DCIS.  But, maybe it really is, when you think about it.  I do realize I will have to make a mental adjustment, be a big girl, and just deal with it.  I do have a loving family, though not that I live with.  Those waking moments alone can be pretty scary.  Thanks again.

ballet12

I completely understand. This is traumatic, even though it's DCIS and even though, so far, it's low grade and small.

I had already had three excisional biopsies on my right breast before I had the excisional biopsy which found the DCIS. That breast had already been through the mill. I completely understand the issue of the appearance of the breast. After three more surgeries, there was definite further change; although, ironically, the radiation improved it somewhat. I was just happy to still have the breast. I would have wanted to do the absolute minimal in your situation (small, low grade). It just feels like such an assault for something so tiny and maybe not so threatening. It's so hard to know what to do. I asked the radiation oncologist at my world-renowned treatment facility if there was ever a situation (with DCIS) where she didn't recommend radiation, and she said that she hoped to find that situation, but her research results found otherwise. I do know, however, that there are women, even at my facility, who are given the option of bypassing radiation. I hope you can. I understand that this must be very difficult, when you don't have the safety net of family surrounding you, and you have suffered other losses. You don't have to do anything you don't want to do.

percy4

You women are wonderful.  Have SOON appts. with oncologist, breast specialist for 2nd opinion, radiation oncologist, and Plastics (for questions about how to leave things closing in surgery).  Kaiser certainly is very good as a network for making these referrals ASAP.  So, by the time I start treatment of any kind (hopefully Dec., maybe early Jan.) I think I will feel I've left no stone unturned, other than what I could learn ouside of Kaiser.  Though I do think they are good.  Very worrisome being unemployed right now, but it's obviously best.  I work in the restaurant business, and no new restaurant job would ever hire/keep me having all these appts., surgery, and possibly weeks of rads (which is not in a facility nearby; like 40 miles away).  Not like an office at all, where there is sick pay, personal leave, etc.  So, guess that's the (only) silver lining to the unemployment.  Thank you all again; will keep you posted. - P.

percy4

Oops; was trying to edit my last Post, and deleted it by mistake.  Was saying I have appts. with oncologist, 2nd opinion breast surgeon, Plastics (possibly for the future) and radiation oncologist, so feel I will have done my research well before deciding.  Also, thanking all the wonderful women out there for your support and advice.  This group has made all the difference to me as far as knowing the important questions to ask.  Will keep you posted (and probably have more questions as time goes along). - P.