DCIS - No surgery?

There is a lot of defensiveness here to be sure. I am against giving anyone medical advice or supporting them getting individual advice on the internet, I believe it isn't my place to tell anyone how to treat their DCIS. Treatment does not necessarily involve undergoing a medical procedure. Treatment can broadly be construed as deciding on a course of action based on medical information. The question at hand is certainly DCIS, so this sounds like the place to post it. 

HOWEVER, I strongly concur with the later part of itsjustme's post.

--Oktogo9: We are not sure if you have DCIS alone to begin with - that's what most jumps out at me, personally, from your situation. A key medical question remains unanswered. If you choose active surveillance, it is your right. But you have said you would feel differently if the cancer had an invasive component. That crucial question remains unanswered.  Only exploratory surgery can begin to answer that question.

Scans do get better and better with time but they an an imperfect technology. They don't begin to be as good as a pathologist's naked eye. A stereotactic biopsy is not even intended to describe the entire tumor - it is a woefully inadequate diagnostic tool by itself.

So, again, my suggestion is to not put the cart before the horse. You are interested in pursuing a certain course in the event that you have DCIS - but first you have to make sure there isn't anything else OR assume the risk of not knowing for sure what your diagnosis is.

http://community.breastcancer.org/forum/121/topic/787264?page=34#post_3109900

"Rena"'s thread, where this same topic was discussed most recently.

I sort of have to disagree about this particular post having people "jump on" them.  The OP asked a question, and then when data was provided that answered that question, the new line of questioning then started to digress - almost immediately, to a "yes, but", which was (point-of-fact) the same way that the "rena" post started to digress.  When a question is asked, "is there proof" and then the repy is, "well, there is no actual proof because X (in this case, very few women are likely to have no treatment at all), but here are some papers that point out Y" and the response is, "so, the treatment basically is being used to save a small percentage of women"  ... then, unfortunately, it might be construed as an exercise in futility.  

The point is, there are people (newbies) that ask questions because they want answers, and there are people who really aren't asking a question - but rather have already made up their mind about something - and are trying to "stir-up" a lot of emotion by framing the discussion around the question, with the sole purpose of refuting any evidence that is submitted.  That is how I had perceived this discussion was heading (I have been down that road before) - and why I reacted the way I did.  I since apologized to the OP - and the general community - because I could have been wrong.

I also think it is important to make the distinction between - "the is the treatment I had as being a subtle way of saying it is the right treatment" from, "these are the choices I made, and these were my reasons for making them".  

Question for SpecialK please.

You mentioned that Mammos and US failed to find the DCIS and 2cm of IDC. If it's okay to ask, did an MRI also fail to detect it?

NSJ -- removing sentinal nodes is no longer standard practice for DCIS, unless a MX is being performed.  It *used* to be standard practice in all cases, but not any more.  The "sentinal nodes" are those that are directly related to the site of the tumor, for some women this is 1, others it is more than 1.  The lymph system is like a bunch of branches from a tree, sometimes a branch has multiple sub-branches. 

Armywife,

Not to go off topic, but, if your lump was close to the nipple you may not have qualified for nipple sparing surgery. It is more than just a surgical technique. If the cancer is too close to the nipple, they probably wouldn't take the chance.

Caryn

Kelpie68 - it's interesting to me that your DCIS was Grade 1 - the "slow growing" one, which, from what I've read on this site, is the only DCIS that doctors consider a potential candidate for watchful waiting.  And now you regret not having taken a more proactive approach in the beginning.  That should be a consideration for any woman considering the course that OKtogo is considering.

Wishing you the very best!

Joan

Yorkie: There is evidence that some DCIS will disappear - that is a scientifically incontrovertible fact, and the idea of active surveillance has been thrown about in scientific circles for years.

The big problem is that no one knows WHICH DCIS disappears and which will not. Nor does anyone know how you ensure it is DCIS alone without exploratory surgery. I do think the OP should be more cautious about what information she has. I think she is ensconced in her belief - for DCIS. That is fine - but we don't know if that's the only cancer she has. Also, grade level can vary in a single tumor. Some DCIS patients have a variety of grades, and necrosis.

Exploratory surgery can answer these questions, without leading to the physical breast changes that some women fear.

But I think our OP has a set position at this point. She is sure, in her mind, that it is DCIS alone.

Oktogo9, I'm glad to see that you are still here.

With regard to the "number of nodes" question, BLinthedesert provided the answer.

Sentinel node biopsies are usually not recommended for those who have DCIS who are having a lumpectomy.  However because an SNB is difficult to do after a MX, usually if someone with DCIS (diagnosed from a needle biopsy) is opting for an MX, it will be recommended that they have an SNB.  As I've mentioned in another couple of threads recently, when I first came to this board 6 1/2 years ago, it wasn't unusual to find that those who did not have aggressive DCIS often didn't have an SNB even with a MX.  These days however it seems that everyone having a MX for DCIS gets an SNB.

When a surgeon does an SNB, there is no way to know in advance how many nodes he/she will have to remove.  The dye and/or isotopes are injected into the breast and travel on into the nodes.  Any nodes that "light up" with the dye/isotopes should be removed as part of the SNB surgery.  This is because the theory behind the SNB is that that dye/isotopes follow the same path that cancer cells would follow if they were to travel from the breast into the nodes.  So if the dye/isotopes move quickly into 3 nodes, then cancer cells could easily have done the same thing.  One could argue that only the first node needs to be removed, even if several nodes light up, but there are a couple of reasons why that's not advisable. First, with the nodes packed so closely together, it's not always clear which is the first node. Second, even if there does appear to be one node that is front of the others, it's possible that cancer cells could pass through a node and move onto the next node, leaving no trace. So if the dye/isotopes are able to travel quickly to and through more than one node, removing just one node may not provide an accurate result.  In cases where someone has been found to have nodal involvement and more than one node "lit up" with the dye/isotopes, it's not always the first node that is the one found to have cancer.

Hope that makes sense. In my case, my surgeon told me in advance that if only one node were to light up, he would take that node plus the one closest to it, just in case some cancer had passed through the first node undetected.  As it turned out, 3 of my nodes "lit up" so I had 3 nodes removed during my SNB.  

yorkiemom, to your comment, "only a total fool would leave cancer inside her/him", what happens if a bunch of very vocal doctors get their way and DCIS is reclassified as a pre-cancer? If DCIS is renamed "high-grade dysplasia", as has been proposed, what happens then?  Someone who chooses to not treat her "high-grade dysplasia" would not be leaving a "cancer" inside herself.  

Personally I think the renaming of DCIS would be irresponsible, at least at this time, before we can clearly identify which cases are low risk and which cases are high risk. So I'm not suggesting that I agree with this approach; I don't agree with it at all. But I do acknowledge that at some point in the future, once we are able segregate low risk cases from high risk cases, it might make sense to split DCIS in two, moving some diagnoses into the pre-cancer category and leaving others as Stage 0 breast cancer.

The interesting question would be where Oktogo9's DCIS would fall. Based on what we know today, grade 1 DCIS is generally low risk and usually takes years - 10 years, 15 years, 30 years - before it becomes invasive, if it ever does. On the other hand, Oktogo9 has a large area of grade 1 DCIS, and large amounts of DCIS are known to be more likely to harbor invasive cancer or develop into invasive cancer. Then there is all that we don't know yet about which biological factors within the make-up of the DCIS influence progression or indicate that a particular case of DCIS is unlikely to ever progress.  It's a complex issue. Personally I would not choose to go without surgery, even for grade 1 DCIS, because I'd be concerned about whether or not the diagnosis really was just grade 1 DCIS. But that's me. With what we know today about DCIS, with all the media hype about over-diagnosis and over-treatment, and with so much discussion about whether DCIS is really a "pre-cancer" and not breast cancer at all, I can understand why someone would ask these questions and would consider the option of no surgery. I can even understand, just a little bit anyway, why someone who is more risk tolerant than I might make that decision.  There's nothing foolish about it, if this individual accurately understands the risks involved.  We are surrounded by risks in life and every day we choose which ones we will avoid, which ones we will accept but try to mitigate and which ones we will ignore. 

By the way, I'll admit that I don't understand how someone with grade 3 DCIS could pass on surgery (Rena, for example).  At that point the risk is so great that I'd think that anyone who accurately understands the risks involved would choose to take at least some action to mitigate the risk.  And that's the thing about DCIS.  It's not "one size fits all".

NSJ2 - I had a mammogram and ultrasound on the same day followed by an immediate consult with the radiologist.  The DCIS and IDC was missed by the mammo, and I had one every year faithfully, but a "mass" was seen on the ultrasound.  This led to a biopsy with Mammoprint (genetic assay, similar to Oncotype DX), so by the time I got to the pre-surgical MRI I already knew that I had DCIS and IDC.  The purpose of doing the MRI prior to surgery was to confirm the findings of the biopsy, which it did, and also to check to see if there was anything else that had not been seen by other imaging.  The MRI report confirms the biopsy findings of a mass and was consistent with the size noted on the US report, but does not delineate between IDC and DCIS. What the MRI failed to show was the ADH and ALH in the left breast, and the 2 positive nodes, one which was 6mm, associated with the cancer in the right breast. These were all found on post-op pathology reports, and a complete surprise to my BS.  My BMX was elective - I was a lumpectomy candidate, so the ADH and ALH would never have been discovered until perhaps they had become another primary cancer if I had not done the BMX.

Losing sleep - I had a similar situation in that on imaging and with a birads score of 5 I had core needle biopsies which came back benign, so I had them all redone and again they came back benign.  The consultant was insistent it came out to see if it was all infact benign (it was a big lump) and to make sure nothing else was hiding.

I had a lumpectomy and indeed DCIS grade 2 was found on the outside edge of a big benign lump.  Fortunately for me they got clear margins first time round so that is me done, no rads, no tamoxfen - just careful follow up.

I am so glad they took it out. x

NSJ2, 

Sometimes MRIs pick up ADH and ALH, sometimes they don't. Similarly, sometimes there is enhancement on the MRI that accurately indicates the presence of IDC, and sometimes the MRI shows a mass but there is no way to distinguish if it's DCIS or IDC, and sometimes the enhancement is benign. MRIs, just like mammograms and ultrasounds, are an imperfect diagnostic tool. There are no perfect diagnostic tools for breast cancer.

I had an excisional biopsy with no clear margins so we knew that I likely had more DCIS in my breast and more surgery was needed. That's when I had an MRI. My surgeon told me that the MRI showed my breast to be full of "stuff".  His use of the word "stuff" was very intentional because there was no way to know if the "stuff" was more DCIS or more ADH (I'd had some of that too), or IDC (a microinvasion of IDC had already been discovered during my excisional biopsy).  All we knew is that there was something going on.   

On the other hand, I'd just had a stereotactic biopsy on my other breast, also for calcifications. This biopsy was benign. The MRI on this breast came back perfectly clear. Based on that, I had a single MX (no choice about having the MX on the other side, with all that "stuff" in there).  In 7 years since the only problem I've had with my remaining breast have been a couple of small benign cysts.  

As a general rule, if you've been diagnosed with BC, the combination of a mammogram, an ultrasound and an MRI will give your surgeon the best idea of what might be going on inside your breast. Each tool uses a different method to "see" inside the breast so each is best at showing different types of problems, and each shows the problem in a different way. By comparing the films, the surgeon can get the best idea of what's happening.  But even then, there are no guarantees and sometimes there are surprises.  The surprises can be positive - there is less cancer than thought - or they can be negative - there is more cancer than thought, or perhaps invasive cancer when only DCIS was expected.

One very important thing for you to keep in mind. Before her MRI, SpecialK already knew that she had grade 3 DCIS and IDC. Very different than your situation. So the risk of nodal involvement was there from the start, which is not the case with pure DCIS. The other thing to keep in mind is that ADH and ALH are high risk conditions, not cancer. Most ADH and ALH (70% - 80%) never develops into cancer. So while the presence of ADH or ALH after a prophylactic MX is a sign that maybe you did the right thing, most women diagnosed with ADH and ALH don't have mastectomies and never develop breast cancer. They might live their entire lives never knowing that the ADH or ALH is there. 

FYI, normally lymph nodes are tiny - when you feel just behind/below your ears or under your arms or in your groin area, you can't usually feel them.  But the role of lymph nodes is to catch infection and keep that infection from moving further into your body. This is why lymph nodes frequently swell when you have a cold or any sort of infection. So an enlarged swollen lymph node is usually still a "healthy" lymph node - it's just doing it's job. I had shingles a few years ago. I had a few suspicious signs but what gave it away to me was when the lymph nodes in my groin hugely swelled up and became very sore.  When I googled that in combination with my other symptoms, it was 100% clear to me that I had shingles. So in most cases having swollen lymph nodes is actually a good thing, because it means that your body is working properly and the nodes are keeping your infection in check. 

Edited for typos / grammar only. 

Yorkiemom, I appreciate that you aren't into gambling, but if someone else knows the risks and is willing to take the chance, that's her decision, isn't it? Many of us have explained to Oktogo9 that there is a risk (10% - 20%, perhaps) that her DCIS might already not be just DCIS; I am assuming therefore that she understands and will weigh this risk into her decision. While it's true that most IDC develops from DCIS, there are vastly different patterns in how this happens. From your post I'm guessing that your tumor was mostly IDC with a small amount of DCIS.  Oktogo's tumor appears to be 6cm of DCIS. This suggests that the biology of her diagnosis and your diagnosis (if I guessed right) are probably worlds apart.  In any case what it comes down to for me is that we can't apply our decision criteria and risk profile to anyone but ourselves. Other people make their decisions based on their own criteria and risk profiles. 

As for the reclassification of DCIS, if they change DCIS to being a pre-cancer, they would in fact be changing the name and therefore the acronym. The proposed name is "high grade dysplasia".  So maybe DCIS would become "HGD".  I guess you are saying that if that Oktogo9 were diagnosed in the future rather than today and her diagnosis was HGD and not DCIS, you would re-evaluate whether you think she's foolish to pass on surgery. Of course nothing would be different except the name of the disease. 

I've been here a long time.  I've seen lots of women come to the DCIS forum, determined to pass on traditional treatment or in some cases, any treatment.  Certainly there is more of that recently, thanks to the focus in the media on the over-diagnosis and over-treatment of DCIS.  But the same questions have been asked by newbies coming here for a long time. Maybe that's why I don't automatically see "Rena" every time the question is asked. I also have the advantage of having seen lots of different reactions to the information that's been provided here in response to these types of questions. I've seen women change their minds as they've learned more about DCIS and the risks of their particular diagnoses. I can think of a couple of women who had needle biopsies showing grade 3 DCIS who came here determined to not have surgery, but who ended up with surgery and unfortunately, a finding of IDC. I can think many others who had grade 3 or lower grade DCIS who decided on surgery and were found to have pure DCIS. Most then opted out of any further treatment. And I can think of a few - but only very few - who decided to pass surgery. Some opted for Tamoxifen instead; others did nothing. The point is that I do see value in treating these types of posts and questions as being legitimate, because most who ask these questions have an honest interest in learning more. And even if the person who started the post doesn't take the information to heart, there probably are others reading who will.   

I'm thinking if they did indeed formerly re-classify DCIS to "pre-cancerous", I wonder and worry what that would do to insurance coverage for women wanting treatments. For example, will it be denied. 

IMHO, reclassification should not change unless and until technology/science can determine whether a DCIS area will or will not become invasive.

My apologies for probably stating the obvious, but just wanted to throw in my 2 cents.

Thank you yet again Beesie. Always very informative and helpful!!