DCIS and overwhelmed

I was lucky in that even I could see on the mammo that with 3 separate clusters, the breast would have to go. Initial core biopsy pre surgery showed only DCIS. Path results following masectomy showed DCIS with  2 separate IDC's and micro IDC in a lymph node. And I had a second op to remove more lymph nodes once they got the path results back.

 BC is a sneaky bugger. They just dont know till they open us up and get path results, so your options are to go with the lumpectomy, all goes well, its all found and you move on with your life. Alternatively you could go the masectomy, but if you do only have only a small amount of dcis, will you be okay mentally and emotionally with losing that breast?

Personally, I would find a BS that you research and confirm is hugely experienced and go with his/her recommendations. If neither of the ones youve seen thus far give you a feeling of confidence, then keep looking till you find one that does. Once on the path, having faith and confidence in a BS who not only just performs this surgery but who also follows up with you every 6 months is vital in my opinion.

Im sorry your in this position and hope you find a solution that fits you and helps you move with confidence into the future

I agree that there is no clear path.  I think that this is especially true for DCIS, which my BS is not very up-to-date on and my MO simply poo-pooed as not being cancer and not a cause for concern.  From the information I have found on this site, I have taught my doctors a few things!  I am staying with my BS because he is listening to me and is not afraid to tell me when he is not aware of recent research.  You have to be informed and be somewhat in charge of your treatment, unfortunately.  If you trust that they know everything, you may regret not asking for something later.  I wish that I'd had an MRI before my lumpectomy.  MRI does not pick up calcifications but it can be better at detecting the extent of high-grade DCIS (which I have).  My mammogram was not able to accurately detect the extent of my high-grade DCIS and now I am having a re-excision after getting unclear margins the first time.  Since your DCIS is internediate grade, an MRI might not be helpful but it might not hurt if you want to try to get more information.  

I have found a lot of great information on this web site, espceically the links to clinical research, that have helped me make my decision to go ahead with a lumpectomy.  Mastectomy was not off the table -- I considered every option.  This site also prepared me for the possibility that the treatment process may not be as straightforward as the imagined flowchart.  There is a lot of waiting for test results or appointments, and sometimes unexpected things pop up.  It reminds me of being in labor!  My doula told me to enjoy the time between the contractions and to not worry about the next one.  BC treatment can be a long process that can be painful at times, but in between those painful times it's best not to worry and anticipate the next event (biopsy, surgery, appointment).  Take advantage of the time you are not recovering from surgery or fatigued from radiation and get work done, clean the house, have tea with friends, exercise -- just live your life and give your mind a break from the worry.  It gives me a feeling of having some control over my life!  Some days this is easier said than done, but I let myself be grumpy and stressed on those days and let it go on other days.  

The lumpectomy was pretty easy.  Mine was almost 3 weeks ago and I didn't need much help with pain afterward.  I am back to almost all of my normal activities, especially if I'm wearing a good bra!  My breast also looks really good.  Having been through it, I am way less anxious about going through it again.  Microscopic DCIS without calcifications was found in the margins of my excised tissue, and this had not been picked up on the mammogram.  Before my surgery, I told the BS that I'd rather have clear margins than be beautiful and to take more tissue if needed.  He did but it still wasn't enough.  He was also working on the premise that 2mm is a clear margin.  I told him that I want 5 to 10mm based on the research I've read, so he is going to take more off the clear margins too when I have my re-excision.  

It's a crash course in BC!  Good luck navigating through it all.  Beesie's posts are always good to check -- she keeps a high level of scientific rigor in her posts that I really appreciate.   I just bumped the post called "NIH Consensus Conference DCIS" -- there is a lot of good information here.  All the best!

Given there has been some high-grade DCIS found, I would recommend asking for an MRI.  I'm still waiting for my MRI results, but I hope it will inform the surgeon when we do the re-excision. I'm definitely hoping that there won't be any surprises, but I'd rather know now than after 1 or 2 more unsuccessful re-excisions.  

Jackie,

From what I understand (and please, someone else correct me if I am wrong), since you path report specifies "low to intermediate", this would mean somewhere between grades 1 and 2.  Your stage, on the other hand, is zero, as there is no indication that there is any invasion.  With an excisional biopsy, however, there is some chance that this could change.  Is the size .6 mm or .6 cm?  You cite both, so I am confused.  The other thing the report indicates is that you have a mixture of DCIS & LCIS, mixed in with a large amount of ADH (atypical ductal hyperplasia), which are benign cellular changes that put you at further risk of developing BC in the future. 

Hi Jackier,

   I had a pretty similar situation.  Tiny area of calcification, found the DCIS on biopsy.    First surgeon did a lumpectomy, found an area that was approximately 7 cm by 4 cm with DCIS. Mixed grades - low, intermediate, and very small area of high.  She claimed clear margins, but there was LCIS in the margin.  She recommended raditation and Tamoxifen.  I went for a second opinion, and this surgeon recommended mastectomy due to the size of the DCIS. 

The hardest part of this whole journey was the emotional toil when I was diagnosed and the weight of making the decision.  Once the treatment is over, whatever you decide, it will get better. 

Everyone in my family, including aunts with whom I barely spoke, had an opinion.   My daughters and my husband who matter most to me compared the risk of something returning (8-15 percent) with radiation/tamoxifin versus risk with a MX (1-2 percent) and liked the 1-2 percent a lot better.  

I opted for the BMX, since I'd had 4 biopsies in the "good" breast in the past five years, and wanted to be through with the whole thing.  They found another 3 cm of DCIS in the right breast, none in the left. I had my BMX, no recon, a year ago - and I'm feeling great about it.  Actually, Im feeling great generally. I am not staying up nights worrying about it coming back as invasive- which I would have if I'd gone the other route.  I am back to all my activities before the surgery.  I will note for the record that there are downsides of BMX beyond appearance - loss of sensation, the possibility of lymphedema, and the possibility of on-going pain.  I've had some of these problems, but since I'm back to doing everything I care about, it's ok.  Another side benefit, I never have to have a mammogram again, and I like wearing tanks without bras.  Another thought, a few days ago I found an article from December 2010 stating that a study showed that removing the noncancerous breast reduced BC deaths by 23 percent over 17 years.  That being said, this is an incredibly personal decision.  It is based on how important it is to you to keep your breasts - (for me, not very) - and how much keeping your breasts will impact your life in terms of anxiety.     

Thinking good thoughts for you whatever you decide.

ek25 - Every single solitary word in your post (including the flow chart reference) rang true for me, even 2+ years out. You are in the toughest phase right now, the testing and waiting and educating and having to make extremely important and personal decisions. Heck, I didn't even know what a micro-calcification was, let alone that they'd appear as a cluster on a routine annual mammogram in my early 40s, when I'd never seen them before nor has anyone in my family ever had such a mammogram result.

Although difficult, you are fortunate that you have the option between lump. and mx, because many do not. For me (and this is a very personal decision), I was not ready to lose the breast and sensation, so I opted for a lump. and reserved the right to have a more drastic surgery IF needs be. Mastectomy is irreversible, and I just knew I'd have regrets if I didn't try to save my breast (I'd never really thought about this before, so it took a lot of sole searching to come to peace with the right decision for me -- not my bs or children or husband).

Even if a trace amount of totally unexpected idc shows up in the final lumpectomy pathology report (see my below bio), often it doesn't change the course of treatment. There has not been a single day that I've wished I had a mx over lump., although the night before and morning of my annual mammograms are a bit worrisomely tearful (still worth it though). 

Wishing you good inner peace. 

She sounds like a great surgeon!  Coming out of a meeting with lots of information and a range of possible treatments is a great outcome.  The MRI will hopefully give you the missing information.  I took a few weeks to make my initial treatment decisions because, in our cases, there is not a huge rush to decide.  It was good to have time to do some research, but it was also good to take time away from it now and then.  Some thoughts:

 1.  Yikes -- path reports are subjectively interpreted??  

2.  Great to hear that high-grade DCIS is easier to remove. 

3.  That clinical trial sounds very interesting! 

I am recovering from my lumpectomy two days ago. The BS also removed three nodes. I was diagnosed with DCIS, grade II, comedonecrosis, 3cm. The most worrisome part for me on the day of surgery was the needle localization and sentinel node mapping. Both were a piece of cake and not painful as I read others claiming. Right now I'm icing and sleeping a lot. I appreciate everyone's comments on here as it proves we are not alone! I was diagnosed on April 3rd while I was on vacation. It was nice to have time to process it without having to worry about work. I returned to work for a week to settle some things. I'm not planning on returning for another three weeks. I am anxious to get my path back, maybe by end of week. BRCA testing came back negative day of surgery. Whew!

ek25,

You've been presented with an interesting list of options. I can appreciate your confusion, considering that you're looking at anything from MX to watchful waiting.  I can't offer advice on what to do - only you will be able to figure out what's right for you - but I do want to comment on a few of the things that you've been told.

First,  "I need to have an MRI to begin this process anyway so I agreed to sign up for the clinical trial. It begins with an MRI to find out the extent of the DCIS and whether there is any invasive component."  Wow, I didn't know that an MRI could distinguish between DCIS and IDC.  Oh right, it can't, not really.  When doing an MRI, invasive cancer almost always enhances with the gadolinium, and usually quite quickly.  DCIS doesn't always enhance.  But sometimes it does, and sometimes it enhances quickly.  And benign lesions may enhance as well.  So while there may be indicators that invasive cancer might be present, it's far from being in any way precise. And if you happen to have DCIS that enhances quickly, then there will be no way to know if any invasive cancer is also present. I'm not suggesting that it's not a good idea to have an MRI - I think it's a great idea to have an MRI because it can be very helpful in determining whether there are more areas of suspicion in your breast (which may or may not be DCIS or IDC), but I just don't think you can rely on an MRI to tell you if there is invasive cancer present or not. Here's an article about breast MRIs:  BREAST MAGNETIC RESONANCE IMAGING

"Knowing that the majority of DCIS cases won't turn into invasive"  Did your doctor tell you this? Somehow this "fact" seems to get repeated a lot, to the point where people believe it.  But the truth is that nobody knows what percent of DCIS will eventually turn invasive. Anyone who tells you otherwise is lying. Most DCIS is surgically removed so in fact there are no valid studies on what percent of DCIS will become invasive.  The only studies that have been done are either based on situations where the DCIS was so small that it was missed or so low grade that it was misdiagnosed as ADH or so small and low grade that a decision was made to not do surgery.  In those cases, only about 25% - 40% become invasive but those cases are far from representative (except for those who have small areas of grade 1 DCIS).  What is known is that after DCIS has been surgically removed, if there are some cancer cells left in the breast that eventually develop into a recurrence, in 50% of cases the recurrence will not be found until the DCIS has already evolved to become invasive. So that suggests to me that at least 50% of DCIS becomes invasive and we can't say what percent of the remaining 50% would have also become invasive if the recurrence had not been caught when it was. 

As for having multi-focal disease, there are studies that suggest that this does not preclude having a lumpectomy.  The following study found the close to the same recurrence risk (with no statistically significant difference) for those with a single focus vs. those with multi-focal DCIS, provided that those with multi-focal DCIS had radiation.  Significance of Multifocality in Ductal Carcinoma In Situ: Outcomes of Women Treated With Breast-Conserving Therapy

One last point about grade and multi-focality. I know that it is believed that lower grade DCIS is more likely to be multifocal whereas high grade DCIS tends to be in one area but that was certainly not my experience, nor is it my observation from my time on this board. I had high grade DCIS with comedonecrosis, and my DCIS was multi-focal and multi-central - it was everywhere.  Most of the women I can recall from here who've had large areas of DCIS or multi-focal DCIS have also had high grade DCIS. I've tried several times to find studies that support the contention that lower grades of DCIS are more likely to be multi-focal, but I've yet to find anything.  What I have found are a number of articles and studies that suggest that it is the biology of the DCIS, or the subtype, that determines whether DCIS is single focus or multi-focal.  Here's a reference to one study which interestingly says that low grade is multi-focal, intermediate grade is unifocus and high grade is diffuse (i.e. really spread out).

"A recent report has proposed that the natural history of different DCIS subtypes relates to the pattern of development of DCIS within the breast lobe. This hypothesis, based on extensive review of large two- and three-dimensional histological sections of DCIS, suggests that DCIS may appear as unifocal, multifocal or diffuse disease due to involvement of individual terminal ductal-lobular units, several distant terminal ductal-lobular units or involvement of larger ducts. They found that low-grade DCIS tends to be multifocal, intermediate grade unifocal and diffuse with duct neogenesis almost exclusively high grade and this has an impact on recurrence."  Progression of ductal carcinoma in situ: the pathological perspective

Here is the actual study... it's a bit complicated! Mammographic-Pathologic Correlation of Ductal Carcinoma In Situ of the Breast Using Two- and Three-Dimensional Large Histologic Sections 

I wonder if the confusion comes from the fact that invasive cancer is more likely to be unifocal and people think that high grade DCIS is closest to invasive cancer so it must be similar.  The reason IDC tends to be unifocal is because the cancer cells, as they multiply, can grow into a larger and larger lump, just in that one spot.  But DCIS is confined to the milk ducts, so as DCIS cancer cells multiply, they have nowhere to go except further out into the duct.  High grade DCIS is the most aggressive and multiplies at the fastest rate, which is why high grade DCIS tends to be diffuse.  So don't think that high grade is in any way better.  It's more aggressive, it's more likely to be spread out and it's more likely to include a hidden area of invasive cancer. 

Not sure how much any of this helps you with your decisions... or if it just adds to the confusion.  

To help everyone who's wrestling with the various terms in pathology reports, the Your Diagnosis section of the main Breastcancer.org site will walk you through every line, with links to more info.

The Mods

Alexandria 58 -  Well had my MRI last week and we met with the BS on Monday.  She indicated that the MRI showed in the right breast someting suspicious. She put this way: Since you have been diagnosed with DCIS in your left breast, "anything" we see will count as suspicious.  I had an ultrasound biopsy yesterday on one section of my breast. The doctor who does this, really did not see anything in the ultrasound and maybe a dense area of tissue, and her "gut" feelings was that it is nothing but in order to "clear me" she did a biopsy anyway.. I just told her "go ahead and poke me again" at this point.. what the heck!  

When we met with the BS on monday we talked about the options. I just realized that my math was bad  (0.6mm equals to 6cm) duh!  We talked about doing the lumpectomy, followed by radiation and later by hormone therapy vs mastectomy.   I opted for doing the lumpectomy as it seems the most wise and immediate choice.. but what I  did understand then, is that she will take out the area and some clear margins of healthy tissue and again it will go to the pathology and if the margins of healthy tissue are good, then we move to the radiation in 2-3 weeks depending on my healing, BUT, if there is some dcis in the marginal tissue, that means that we may have to consider mastectomy.   How crazy is that?   Anyway, i opted for the lumpectomy as the first logical step and hopefully it is done with that and then prepare for radiation.  My major concern, from what I read, is the hormone therapy the Tamoxifen and the side effects... I have not had menopause yet, so it looks like that will speed it up and then all those hot flashes, etc.etc. 

I was glad to have my husband with me as he had many questions and it is best for the doctor to answer to him directly. I feel comfortable with this breast care center and the surgeon itself. She met with us for an hour and made sure to answer as much of our questions needed.  

We decided that we would do the lumpectomy second week of June as my May is busy with my daughter's graduaton and a wedding of a good friend...   The doctor was okay with that.. Glad hubby heard this as he was not in agreement to wait and prolong the concerning situation.

hopeing that what is being sampled in the second breast is NOTHING so we can focus in the left one as it is a "busy one" per the nurses!  

thanks for listening.. it is nice to have chats like this with similar situations and understand it from different perspectives... 

How has your experience been with radiation? side effect?   how bad if the fatigue? or maybe not bad?

How about the experience with Tamoxifen or similar?  Just trying to be prepared...