Sister just diagnosed

I will be the first to say Welcome,  there are other caregivers that post on this site that are trying to assist their loved ones.  Please feel free to ask questions

SydSyd,  Welcome!  Of course you can post here on your sister's behalf.   

So what does she know so far about her diagnosis, beyond that it's DCIS grade 3 with comedonecrosis?  Has she had an MRI?  If not, many of us (and more importantly, our surgeons) feel it's a good idea to have one prior to surgery since MRIs are sometimes (but not aways) more accurate in estimating the size of the area of cancer. From the films done to-date, does it appear that this is a single focus of DCIS or might there be more than one area with DCIS? Of course the films and the biopsy don't provide a complete picture but it's a starting point .... 

So your sister has a lump.  DCIS found in the form of a lump - that's more unusual but there have been some women who've been through this board who've had this.  More often, DCIS is found in the form of tiny little calcifications, seen as little white specs on the mammogram.

With a defined lump, it should be easier to determine the size of the area of cancer.  With calcifications, it's always possible that there are calcs in the breast that are too small to be seen by the mammo - that happened in my case so while my mammo showed the calcs (and therefore the DCIS), it didn't show the whole area that was affected. That's why the MRI was so helpful for me.

The "7 cores" refer to the 7 samples that would have been taken from the mass during the biopsy. It doesn't mean that there are 7 nodules.   

To your question about why lymph nodes are checked when someone is diagnosed with DCIS, the reason is because until all the cancer is removed, no one can be sure that it is just pure DCIS.  So for those with DCIS who have mastectomies, because a sentinel node biopsy can't be easily done after a mastectomy, if the DCIS is aggressive (and therefore there is a greater risk that some invasive cancer might be found), an SNB often will be done at the time of the mastectomy.  For those who have lumpectomies, the question of whether an SNB should be done for those with DCIS is more controversial, since it can always be done later if any invasive cancer is found. Still, some doctors prefer to do it at the time of the lumpectomy, if the DCIS is high risk.  

What does it mean if cancer has spread to the lymph nodes?  First, it means that the diagnosis is not DCIS - it means that there is some invasive cancer present.  With nodal involvement, unless it's just micromets (0.2mm or smaller), the staging automatically moves to at least Stage II (micromets would be Stage I, assuming that the invasive tumor is no larger than 2cm in size). Nodal involvement usually means chemo and even for those with mastectomies, it might mean radiation, depending on the extent of nodal involvement. Certainly having positive nodes means that the cancer is further advanced however it's important to realize that Stage II is still considered to be "early stage breast cancer".  So while nodal involvement will change the treatment plan and will impact the prognosis, many women who've had nodal involvement go through their treatment and never have to deal with breast cancer again.

About the MRI, I assume that your sister will be having a breast MRI, which means that she will be lying on her stomach with her breasts hanging in special containers - and the MRI will only be done on her breasts.  I doubt that she would get her results right away; I certainly never have.  As for what the MRI might show, she needs to realize that no diagnostic tool is capable of showing what is and isn't cancer with 100% certainty.  So if something "lights up" and appears to be invasive cancer, it might turn out to be a false positive - and either it's just DCIS or it's nothing at all.  There have been a few situations on this board where MRIs have shows something in the other breast; that leads to another biopsy and most of the time, the biopsy has ended up being benign. The good thing about MRIs is that they are super sensitive.  The bad thing about MRIs is that they are super sensitive.  So while the MRI will give your sister's doctor a better idea of what may be going on inside her breast, it won't provide any definitive answers.  Only surgery - and a review of the tissue under a microscope - can do that.

My suggestion is that your sister find herself a breast surgeon.  Don't worry about titles - all breast surgeons are "general surgeons" and some use that title while others call themselves breast specialists - but what she wants is a surgeon who exclusively or almost exclusively does breast cancer surgery.  What your sister's replacement gyne said was inappropriate but the fact is that gynes specialize in stuff that's below the belt; breast cancer is not something that most know very well.  With the diagnosis of breast cancer, it's time for your sister to get herself into the hands of a breast cancer specialist, a breast surgeon. (And note that this is not the same as a plastic surgeon who does breast surgery. A plastic surgeon comes into play if your sister has a mastectomy and wants reconstruction.) 

About the choice of surgery, with calcifications, because they are interspersed with the breast tissue, a large area of DCIS usually means that a mastectomy is necessary.  With a defined lump, this might not be the case.  If your sister would prefer to have a mastectomy, then that would be the way to go.  But if she is unsure or if she would prefer not to have a mastectomy, then she should mention this to the breast surgeon to get his/her opinion and advice.

As for your sister's concern that she might have made things worse by touching her lump, no that didn't happen. That's not how breast cancer develops or spreads.  Similarly, if you look at the risk factors for developing breast cancer, there are dozens of things that might contribute to the develop of cancer and most of the higher risk factors are things that we can't even control.  It's impossible to say just what caused the cancer for any one of us - and chances are that there wasn't any one thing that did it but more a combination of factors.  Your sister should not beat herself up for what she did or didn't do because I can promise you that there are women who didn't do what she did, and who did do what she didn't, who got breast cancer nonetheless.  

Hope some of this helps! 

SydSyd-

I am one of the DCIS lumpers. What I understand is the bad news is DCIS lumps are more likely to be grade 3 (faster multiplying and/or less like normal cells), but the good news is that they are well, in a lump/concentrated! not spread out throughout the ducts, with gaps. I believe it might be easier for the surgeon to estimate the location and size of the actual tumor and remove it with acceptable margins than when the tumor is (often)  lower grade, more diffuse DCIS over a larger area. And yes, margins come into play at the lumpectomy or mastectomy.

Microcalcifications may have shown up in the past on your sister's mammos.  they are normal by themselves, but it when they are in a pattern that they raise alarms -  I didn't have microcalcifications. 

You can use the search function on the top right of this page, perhaps san diego breast surgeon or something like that. There are many women from the SD area using this board and I bet they have discussed surgeons. 

Regarding Stage 0 going to Stage IV, sure it is a possibility, but not very likely. This is the worst period, when your sister is still being diagnosed, and she doesn't have a plan of care, there are so many unknowns.  It is impossible not to worry, but try not to torture yourself.

Your sister is so lucky to have you, take care of yourself.

Julie E

 SydSyd

I was 58 when diagnosed, so older than your sister. I did no research between the time I had my biopsy and lumpectomy - I was totally focused on simply hoping that the lumpectomy pathology would confirm DCIS - only, and luckily it did. After the lumpectomy and because the margin closest to my skin was close (1.5 mm), instead of removing my nipple -  in addition to normal radiation, I had 8 boosts - targeted at the tumor site. Because the tumor was ER+, a 5 year regimen of Tamoxifen was recommended and that is what I am doing - with few side effects. Chemo is not recommended for DCIS, nor is HER2 usually tested for.With regards to follow-up, I had an MRI right after the lumpectomy (probably should have been before) and I am getting one every 12 months, and also a mammogram every 12 months (6 months apart). Tamoxifen is recommended for DCIS regardless of whether you are pre- or post-menopause. For the other stages of BC, post-menopausal women are offered Aromatase (sp?) Inhibitors. 

Here are some urls for information on DCIS which we both hope your sister's diagnosis will remain.

breast cancer.org info: http://www.breastcancer.org/symptoms/types/dcis/

I am interpreting "solid" as "lump"

another basic explanation: http://www.dcis.info/dcis.html

alot of info, current research, speculation about the future of DCIS treatment: http://consensus.nih.gov/2009/dcis.htm

treatment guidelines  http://www.nccn.com/index.php

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

Julie E

SydSyd,

Great news that your sister's MRI didn't show anything new!  And good news too that she 'clicked' with her surgeon.  It's not necessary that we like or get along with our doctors but it sure helps when we do.

With regard to how fast your sister needs to move, usually with DCIS there is no urgency.  Of course that doesn't mean that she should sit back for 6 months but if it takes an extra month or so get all the opinions, most docs would say that with DCIS, that isn't a problem. 

To your question about taking out a node during the lumpectomy, yes, that is the same as having an SNB.  One thing that your sister should ask her family doctor to find out from the other breast surgeon is whether he agrees that the pathology warrants an SNB.  If your sister was having a mastectomy, then with high grade DCIS most surgeons would do the SNB.  But since she's planning to have a lumpectomy, it's worth finding out if another surgeon agrees that the SNB should be done.   

As for the doctor's 91% margin success rate, well that's good news but it also could be bad news. Cancer cells are microscopic and when the doctor is operating, he/she is in effect operating blind. Surgeons know from the films approximately how large the area of cancer is and so they remove an area of breast tissue that is about that size, with a small amount extra all around, in an attempt to get clear margins.  However until the breast tissue is examined under a microscope, it's not possible to know if clean margins have been achieved. While all doctors of course want to achieve clear margins, they also want to preserve the breast, so they walk (or more to the point, operate on) a fine line, trying to remove enough breast tissue to get good margins but trying not to remove more breast tissue than necessary. So requiring a re-excision after surgery isn't a sign that the surgeon made a mistake; it's a normal part of the process in a percentage of cases. I've seen studies that show that anywhere from 25% to 60% of women need re-excisions after lumpectomy surgery.  So here's the catch: If a doctor gets clean margins almost all the time, this is a sign that the doctor may be removing more breast tissue than is necessary.  

The good news is that in your sister's case, because she has a defined lump, margins probably won't be an issue. The doctor will remove the lump and a small area around the lump and hopefully that will result in clear margins.  But if your sister had diffuse calcifications, such a high rate of success on margins on the first surgery might actually be a red flag rather than good news.

Let us know what your sister hears back from her family doctor, once he consults with the breast surgeon. 

Yes, a wait of a month or so usually isn't considered to be a problem for someone diagnosed with DCIS, even if the DCIS is high grade with comedonecrosis.  I had Grade 3 DCIS with comedonecrosis and after my excisional biopsy, I had dirty margins all around two areas of DCIS and a microinvasion had already been found.  Yet for various good reasons, I didn't have my mastectomy surgery for another 2 1/2 months.  My surgeon wasn't concerned one bit and it turned out to not affect my diagnosis at all.

I don't understand what your sister was told about the SNB.  Normally with an SNB the surgeon will remove 1 - 3 nodes.  Sometimes, if the dye or radioactive isotopes travel to more nodes, they will remove more but removing only 1 node is common practice for an SNB - it's sort of the definition of what an SNB is.  If the surgeon is planning to remove a node without doing the dye or radioactive isotope injection, then your sister should run away from that surgeon.  Lymph nodes are all lumped together and the only way to know which node is the "sentinel node" (i.e. the guard node at the head of the string of nodes that everything travels when entering the nodal system) is by doing this injection.  To remove a node and not know if it's the sentinel node is absurd because it exposes the patient to lymphedema and it doesn't tell you anything about whether there might be cancer in the nodes.

There have been other women here who've had brachytherapy radiation.  If you do a search on the discussion board I'm sure you'll find some discussion threads about this, even here in the DCIS forum.  Use the search box in the upper right corner of this page.

Stress is normal and so is losing weight.  When I have a major shock, I instantly lose 3-5 pounds.  It's weird.  Your sister having her friends tell her that she's getting too thin isn't helping - and that's why I only told a handful of people about my diagnosis.  I didn't want all those "helpful" comments or all the sad looks and hushed questions "so how are you doing?"  We're all different and some people choose to tell everyone but I found that I felt a lot better and a lot less stressed because everyone treated me normally and most people didn't even know that I had BC.  I think your sister should try to find ways to deal with the stress - for me, that was to constantly remind myself that I had a good diagnosis and an excellent prognosis and that in a few months this would all be past me.  I had to remind myself of that often but it did work (most of the time, anyway).  And sometimes I just gave into the stress and let myself get upset; I'd curl up in bed for a while until I realized that I now longer felt upset. Your sister has to find the approach that works best for her.  Personally I would recommend against a PET scan unless it's medically warranted, and with DCIS, it's not medically warranted.  A PET scan exposes you to a lot of radiation so why do that if it's not necessary?  And a PET scan can present false positives that will just end up scaring your sister more.  I know that some women get comfort in having the PET scan but personally I would be more worried about what it might show (even knowing that anything it shows is almost certain to be a false positive). 

SydSyd,

It's interesting that the surgeon says that she "won't let her off the table until she has a clean margin". Sometimes doctors do have the pathology checked while the patient is in surgery but as far as I know, most surgeons don't bother with this because it's impossible to get a definitive answer about margins with just a quick pathology check. Cancer cells are microscopic and the breast tissue sample has to be sliced and diced so that it can be viewed from all angles. Certainly if there is a large amount of cancer in the margin, that's something that can be spotted quickly.  But a thorough pathology review takes time and I doubt that the doctor would stand there in the operating room for as long as necessary.  This is similar to what happens when a sentinel node biopsy is done.  Usually the node is sent back for a quick analysis while the patient is in surgery.  The patient may be told after surgery that the node appears to be clear but until the final pathology report is issued later, after a more thorough review, that info is preliminary only. There have been lots of women who've come through this board who've had clear nodes after surgery only to find out from the final pathology report that in fact their nodes were't clear.  I think the same could happen with margins.

Again, I honestly don't think margins will be a problem because your sister has a distinct lump. But some of what her surgeon just doesn't sound right to me.

About the surgery being guided, what the surgeon means is that a wire guide will be placed in the breast prior to surgery.  The wire will be placed probably using an ultrasound (since she had an ultrasound guided biopsy) to locate the lump and then the wire will be placed where the lump is seen. That helps the surgeon locate where to start operating. Sometimes dye is injected into the whole area of suspicion and that too can help the surgeon know what area of breast tissue to remove.  But still, the surgeon can't see the cancer cells so if any cancer goes beyond the dye there is no way for the surgeon to know this.  So while the guide tells the surgeon where to remove breast tissue based on what's seen on the ultrasound or mammogram, it doesn't tell the surgeon where the cancer cells are.    

The pathology report you have now probably is all there is, seeing as your sister has only had a needle biopsy. There will be a bigger report once there is more breast tissue to analyse.  And yes, you can get another pathologist to look at the actual slides.  Personally I think it would be better to do this after the next surgery.  At this point, based on the core biopsy results your sister knows she needs surgery. Nothing is going to change that.  All the other decisions will come after the next surgery. So those are the results that she wants to be certain about. 

Lastly about the blood work results.  With DCIS, it's simply not possible to have cancer in the blood so your sister shouldn't be worried.  Yes, it could be that in the end some invasive cancer might be found during the surgery but even then, the odds of finding cancer in her blood are extremely extremely slim. And remember that the blood was taken for surgery;  I don't know that they even would be doing the tests necessary to determine if there is cancer in the blood - usually that's ordered by the oncologist and for someone with DCIS, it's not a test that's usually done. Honestly, she shouldn't even think about it. 

thought you might like this info for your sister.

I am a caregiver, too. First advice is take a voice recorder with you to all appointments. The amount of info is overwhelming. Second, write down all your questions and then don't hesitate to ask them. Your sister has a great sister.