Diagnosis DCIS so many questions!

nwshannon

Thank you so much Beesie for all the info. I am really trying to be pro active in my treatment and educate myself as much as my crazy mind will let me right now. I asked him the same question and his answer regarding the node was that he wanted to save me from having more than 1 surgery however now as I am reading I think my decision friday the day of surgery is to do the lumpectomy and ONLY if there is microinvasion will I approve the node biopsy at the same time. I agree the lymphedema is terrible and I just do not want to deal with that if I do not have to. I will do another surgery if necessary for the node removal, I think he is trying to cover all basis in 1 shot however I do not want to have long term problems if I do not have to. I do have to go in the day before for the dye but again I am only going to approve this if there is evidence of the invasion is that something they can do after the surgery? I just pray that there is no IDC detected as Dee1402 had, Dee how large of an area of DCIS did you have? And is it common to find this only on the surgical pathology but not on the original pathology? I am just so confused and I cannot tell all of you what help you have all been, I am again only 38 and feel like I am just beginning my life right now, oh and to top all of this off I am casually dating someone that I really like and I guess I will know if he is the right one after I tell him everything that is going on, ha talk about a wake up call! Beesie I love the fact that you have educated yourself so well in regards to your diagnosis and it is so helpful for me to go back and see the info, I cannot thank you enough. When I get thru all of this I really hope to pay it forward as well.

Dee1402

Hi....what is SNB?

Dee1402

nwshannon.......the size of the tumor was close to 7cm and according to the surgeon has been there for a number of years. But i had never been for a mamo before.........only went due to  me finding the lump by mistake

sunnyhou

I think you really need to go with your gut instinct on this one.  On my mammo, mri and biopsy there it was not noted that there were suspicion for micro invasion. I am wondering what they saw to have noted that. If the dr thinks there is a high likely hood that there is one then this is why he wants to do the snb. I read that with the snb the risk of lymphadema is less than 5%. I had it done with my mastecomy and I can tell you it has given me a huge peice of mind. I would always be wondering if it was in there and I missed it. But I am a worry wart. We are both young and have alot of years with estrogen left. I am not advocating it and not oppossing it just want you to follow what is best for you. We all have had our experiences and can share those with you but it is your choice at this point. Ask yourself if they do not find micro invasions and you do not get the SNb done are you going to wonder if they missed something. If not and you are not a worrier/wonderer then maybe not checking it is the right thing to do. Also, will you be ok with the lumpectomy and doing radiation and tamoxofin? Have the dr explain the side effects of all of this. I know my dr told me that the statistics out there for recurrance or a new primary are not for our age group. This is because at our age it is unusual to have this disease so the numbers are primarily for women over 50. I can tell you first hand I got rid of my breast. But I did this because I have anxiety esp related to health issues. I miss the feeling in my breast and the surgeries were rough. But I can rest easier at night knowing that my risk of a recurrance is 1% or less. You have a lot to think about and I hope your doctor is helping you. This is a tough, tough time and I think ultimately we all have some regrets in our decisions but we did what we thought was right at the time and we live with it. I know I have come here for comfort and to alleviate fears and these woman have helped me tremendously. I am praying for you and will be thinking of you this week

xxoo

sweatyspice

Dee1402 - SNB is an abbreviation for Sentinal Node Biopsy, a procedure in which only the first, or sentinel, nodes in the breast lymphatic system are removed and checked.  The alternative is known as an axillary dissection, in which many more nodes are removed.   An SNB will put you at risk for lymphedema, but the risk is far less than with an axillary dissection. 

nwshannon - they will not know if there is evidence of a microinvasion during the surgery, you will have to wait a few days until the final pathology report comes back.   At that point, in the very unlikely event that there is microinvasion you can schedule the node biopsy.  I think you need to talk to your Dr. about this early in the week, so you can agree on a plan.   BTW - I did not have a SNB, my Dr and I agreed that if there was invasion, or microinvasion, we'd do it as a second surgery.  She did not feel it was worth the risk of lymphedema.  Other Drs had other opinions, and to what extent their opinions were tied to ease in scheduling or their profit margins, I don't know... 

I had two areas of DCIS, one was grade 2-3, the other was grade 3 with comedonecrosis.  All the Drs mentioned the possibility of microinvasion, in the end I didn't have any and didn't have my nodes removed.  Do I worry that they missed something?  No, not really.  To the extent that I worry, I worry about recurrence.  I pretty much trust that all I had was DCIS and that it was all removed.

Beesie

nwshannon, as sweatyspice said, there unfortunately will be no way to know if there are any microinvasions present until after your breast tissue has been thoroughly examined under a microscope.  So the decision on the SNB has to be made before hand - either you have it when you have the lumpectomy, or you don't.  What are the possibilities?

• If you don't have the SNB and there are no microinvasions, then you avoided exposing yourself to the risk of lymphedema.  There are different studies on the percent of women who get lymphedema after an SNB.  I've seen numbers in the range of 3% to 7%.  But if you take this route, will you be opening yourself up to worry?
• If you don't have the SNB and there is a microinvasion, then you will need to go back into surgery for the SNB.  It's a quick surgery. 
• If you have the SNB and there is a microinvasion, then you saved yourself from needing to go back into surgery.
• If you have the SNB and there are no microinvasions, then you exposed yourself to the risk of lymphedema unnecessarily.  But, did you give yourself greater peace of mind? 

So, to the question about peace of mind.  In the end, only you can know how much you will worry if you don't have the SNB.  What I can tell you are the risks of what could happen. 

The fact is that there is very real - but small - risk that you could have a microinvasion that's so tiny that it's never found when your breast tissue is examined under the microscope.  But here's the thing about a microinvasion. Once it's removed, it can't do any harm.  So even if you have a microinvasion that isn't found, there really isn't much risk to it.  

The only real concern is if you have an undetected microinvasion AND if this microinvasion has already released cancer cells that have moved into your lymph nodes.  What are odds that this might happen?  I don't know but I can give you an estimate based on what I do know.  I know that approx. 20% of women diagnosed with DCIS via a needle biopsy will end up having some IDC, usually just a microinvasion or two.  Pulling a number out of the air, let's say that 25% of these microinvasions aren't detected - that's probably a very high estimate.  But using this number, it means that there is a 5% chance that you might have a microinvasion that is never found.  With any microinvasion, there is a risk of lymph node invasion; studies have been consistent in showing that there is lymph node invasion in approx.10% of cases where there is a microinvasion. So this means that the risk that you might have an undetected microinvasion AND that this microinvasion has already led to lymph node invasion is 0.5%, or 1/2 of a percent.

This is where treatment comes into play. By taking Tamoxifen after a lumpectomy, you not only reduce your risk of local recurrence (i.e. in the breast) by approx. 50% but you also reduce your risk of distant recurrence (i.e. mets, which is the risk that is most concerning if you have lymph node invasion) by about the same percent.  So Tamoxifen can reduce this 0.5% risk to 0.25%, or 1/4 of a percent.  (By the way, this is why many doctors actually consider a lumpectomy + radiation & Tamoxifen to be a more aggressive treatment than a mastectomy.) 

If you don't have an SNB, will you worry about this risk?  Only you can know how much this small amount of uncertainty will affect you.  What I can tell you is that having spent 4+ years on this board, what I've seen is that people who are prone to worry will worry.  I've seen as much fear from women who've had bilateral mastectomies and SNBs as I've seen from women who've had lumpectomies with no SNB and without even having any other treatment. Frankly, the fact is that pretty much all of us will worry for some period of time after our treatment is done.  That's human nature.  But in the end I think it's our personalities that determine how much we worry and not the type of surgery or treatment we have.  If you are a worrier, you will find a reason to worry.  And keep in mind as well that if you have the SNB, you will have the worry about lymphedema.  Personally I'm not the worrying type but I do worry about lymphedema every time I get a cut on my hand.

All of this is not to you convince one way or the other but is an attempt to explain the risks and possibilities if you do have the SNB or if you don't.  Only you can decide which approach is best for you.  As sweatyspice said, if you decide that you don't want the SNB at the time of your lumpectomy, you probably should tell your surgeon as early in the week as you can.

nwshannon

Thank you ladies so much! I have alot to decide on before friday. I will call the Dr. tomorrow am & discuss a few more things and ask some questions as well. I am not sure what they saw on the initial biopsy that leads them to believe that I may have 2 areas of microinvasion but because I worry so much I think I will allow the 1 node to be checked! I just do not think I would sleep without a constant worry in the back of my mind. I see the stats are fairly low for haveing problems after 1 node is removed and I think I am willing to deal with that rather than my mind making me CRAZY! Ahhh the mind is a powerful thing, not to sure about any of you ladies but since the day I found all this out every little ache in my body is noticeable and of course my head tells me that it has spread everywhere and in turn my body starts aching! My friends think I am nuts

Anonymous

nwshannon- I look at it this way.  If you have to do the SNB in a later surgery it is one day out of your life.  If you do the SNB during this one, find out it was unnecessary and end up getting lymphedema, that is something you have to deal with for the rest of your life.  Beesie is right when she said the risk of LE is about 3-7% but there just hasn't been enough long term research to get accurate numbers.  I think the numbers could be even higher but of those 3-7% how many were diligent about taking LE precautions every time and how many didn't do anything different in their lives?  I had SNB but now will worry about LE forever because the risks weren't adequately explained to me.  My BS told me I didn't have to take precautions afterwards which is what a lot of women are told.  Unfortunately, new research shows that just isn't the case but not all the BS are adequately trained in LE risks.  I'm not advising you what to do but just make sure you have all the facts and then decide what will worry you more.

nwshannon

I have alot to think about! Now that I know that the microinvasion cannot be seen right away until after a careful examination of the tissue removed I am going to discuss a few things with the surgeon regarding the node removal. I think I would rather go in another time to remove the node if in fact there is a microinvasion found, I just looked online regarding lymphedema and it just made my stomache turn and I am not sure if I want to expose myself to that if it is not necessary. Thank you for all your input on this it appreciate it from the bottom of my heart. I like knowing from peoples personal experiences it speaks volumes!

Now my next fear is tomorrow I have a MRI & I think what is making me so scared is them finding more problems. I have read that they seem to always find more in there and I am so scared about that. I think everything scares me right now, I wake up thinking about it my body is tired as I have not releaxed since all of this happened. On a positive note I guess I could have lived my life for another yr or two who knows not knowing what was going on until that nasty lump was already invasive cancer so early detection has really come into play in my situation! I will check in tomorrow evening after my scary MRI.

Dee1402

nwshannon - I am probably a procedure ahead of you at this stage.  The doctor never discussed the risk of lymphedema with me, and i have just googled it too.  Scary.  But, he did tell me that the only way to check if the cancer has spread was to do a lymph node biopsy which he did do.  Through this, he said that the DCIS had not gone further than my breast, but through the lumptectomy has picked up invasive cells.  As you are feeling right now, the past two weeks has been a spiral for me too. Best of luck for your results for the MRI.. Thinking and praying for you xxx

Binney4

Hi, all,

I just wanted to drop in here and suggest that it's possible (and very wise!) to request -- or even insist on -- an evaluation by a well-trained lymphedema therapist even before your surgery. S/he will do baseline arm measurements for future reference, give you personalized risk reduction tips, teach you a gentle lymph massage you can use prophylactically, and fit you for a compression sleeve and glove or gauntlet to use prophylactically for travel, exercise, or any strenuous activity. Here's a site for finding a well-trained lymphedema therapist near you:
http://www.mylymphedema.com/therapist.htm

Dee, until recently there were no lymphedema therapists in South Africa (which may help explain why your doctor never discussed it with you!), but the Norton School has trained therapists there within the past two years, and they should be able to help you find one somewhere in your vacinity (Norton School is one of the links on the website above).

Kate, I can taste your regret about not being told about lymphedema. I see you're in Mesa, where you're in luck because there are at least five excellent lymphedema therapists in your town, at Banner Desert (outpatient PT) and the Desert Pain Institute.

Any breast cancer surgery presents some lymphedema risk, but there are simple life-style adjustments we can make to reduce our risk. And awareness and early detection make for much easier treatment and better long-term control. Knowledge is power!

Here are two websites with risk reduction information:

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

http://www.lymphnet.org   (See their Position Papers on Risk Reduction, Exercise, and Air Travel)

I hope that's an encouragement, Shannon, as the breast cancer itself is worry enough without dreading later side effects as well.

Be well!
Binney

Dee1402

Binney, THANK YOU!!!!

mdwriter

I am responding to lymphtherapist's July 17th post: like her, I am a health professional. That didn't change the panic I felt when I first was told my biopsy was positive for DCIS- mainly because it is called a "carcinoma" despite the fact that technically it is NOT cancer. However, after taking a deep breath and frankly, because of a few wonderful ladies on this site, my husband and I dug in and began reading all the current medical literature on DCIS. The fact is, DCIS is not one entity, There are many different subsets of DCIS depending on many elements including nuclear grade, cell architecture, size of tumor and more. But all DCIS is stage 0 by definition which means the cells have not left the duct (they are in situ) and theoretically do not possess the capability to do so. Something like 65,000 of us are getting diagnosed with DCIS yearly- primarily because of screening mammograms. The problem is doctors really do not yet understand the natural history of DCIS- they have yet to really tease out which patients will go on to have new, invasive disease and which won't. If you pin down your doctors and ask what is a "recurrence", some will admit that that could mean your surgeon didn't get good clear margins when they did the lumpectomy - so I wouldn't call that a recurrence, I'd call that a poor surgical result. And that's why most doctors recommend radiation after a lumpectomy- figuring you can kill those remaining cells that were not removed adequately at surgery. However, there are respected experts who argue that if you do get wide, clear margins and the tumor is low to intermediate grade plus a few other variables including age, you can predict the odds of a recurrence or new invasive cancer. Dr. Mel Silverstein, a surgeon in Los Angeles, has developed the Van Nuys Predictive Index (VNPI) which he has used to identify which of his patients do not need radiation and which would get a greater benefit from radiation despite the significant short and long term risks from radiation. And BTW, lymphtherapist was correct when she said that if you have radiation in the breast with DCIS, you can never have it again in that breast- the tissue is so changed so that your only option is a radical mastectomy, but now you can not have reconstruction. In Dr. Silverstein's 2007 editorial "One Size Does Not Fit All" he even suggests that it is more difficult to pick up changes in patients who have had radiation after a lumpectomy and therefore the time from lumpectomy with radiation to recurrence or new cancers is longer and these are more often invasive as compared to those low risk patients who only had lumpectomies with wide clear margins. After I had my lumpectomy  and SNB on June 22, 2010, I spoke with Dr. Silverstein. Based on my pathology he said I would very likely be a low risk patient and could opt out of radiation. However he suggested I send my slides to his colleague, Dr. Michael Lagios in San Francisco for review. Dr. Lagios is a pathologist who has spent most of his life studying DCIS. He now does consultation for patients like me. I sent him my slides and all my other studies (mammogram, MRI, ultrasound). He spent over an hour on the phone with me and my husband as well as writing a long consult and basically confirmed what Dr. Silverstein had said: radiation would not reduce my risk of recurrence or invasive cancer more than 2%, but my risk of possible lung and heart damage (my DCIS is on the left),rib fractures (I already have osteoporosis) as well as potential long term non breast cancer from the radiation was significant. He also recommended that I not take either Tamoxifen or an aromatase inhibitor because their side effects weren't worth the small reduction (1%) in risk of recurrence or invasive breast. When I discussed this with my oncologist, she first tried to talk me out of my decision to refuse radiation, but then agreed that I had done my homework and was making a rational choice. She has agreed to follow me with MRIs, mammograms and ultrasound. If I do have a recurrence of DCIS or even IC, as long as it is low grade, there is no reason I can not have another lumpectomy. Or should I decide at that point that I do want a mastectomy, I have the option to have reconstruction. Hopefully in the very near future, we will be able to look at biomarkers within the tumors to better predict how aggressive the tumor really is. In the meantime, we (patients) need to push our doctors to be more honest about what our specific situation is. One size does not fit all! Sadly, many women become so panicked by a diagnosis that is not even cancer, they opt for the most aggressive surgery (radical mastectomy) when that may not be called for. So there's my 2 cents. Hope it helps someone out there.

JAT

I know we've had this discussion at great length in the past, but I just want to poiint out that DCIS IS cancer. I agree with all of MDWriter's points, except for her reference to DCIS as not cancer. It's pre-invasive, but it is cancer. My neighbor just had prostate surgery for cancer-- it was pre-invasive, but no one has ever told him, "it's not cancer"-- same goes with any other cancer that has been caught in the early stages.  I really don't think it's just an issue of semantics-- as I discovered when my oncologist's fellow kept telling me I should stop worrying about my health because I "only had a pre-cancer."  If this attitude shapes future treatments for DCIS patients, I think it could be dangerous for us.

lymphtherapist

I agree mdwriter.  I would like to add one thing that I discovered.  After a lengthy discussion with Mark E. Sherman, M.D. Senior Clinician, at the DCEG - Division of Cancer Epidemiology & Genetics at the National Cancer Institue in US National Instutues of Health about DCIS and use of tamoxifen, I decided to take this medication.  He discussed the side effects and the evidenced based research. With all the data, he stated two things that made me reasses my decision to take this medication. 1: IBIS study.  More than 45% of the women who took tamoxifen had their breast density drop by 10%, and this IS extremely helpful for more accurate mammogram interpretation to rule out recurrence or new onset breast cancer,  2. Although this sounds silly, it made sense and logic to me.  He said, between the DCIS which was excised, and now having ADH residually,my breast is "very busy".  Tamoxifen can "calm" or "rest" the breast from all of this and provide "prevention" for the contralateral breast.  I had my baseline trans/vaginal ultrasound and opthomology appointment, as well as labs.  I will begin prophylactic Effexor for hot flashes and menopausal symptoms and will discuss baby aspirin for risk of blood clots.  So I was adamant about not wanting SNB and radiation, which my oncologist supported (albeit had to talk her into this to support me), but I now have agreed to Tamoxifen

Beesie

The recent posts highlight something that I have been saying (okay, harping on) for quite some time on this board:  ALL DCIS IS NOT ALIKE and when it comes to treatment, ONE SIZE DOES NOT FIT ALL.  So often we see posts on this board asking "what would you do?" or we see women try to explain to others why the treatments they chose are right for someone else ("Don't you want to do everything you can to treat this?"  "Won't you worry if you don't do this?"  "Don't you know about the side effects of this treatment?" etc. etc.). 

What we all need to remember is that every one of us has a different diagnosis and/or health history and/or tolerance of risk.  So for each of us, the rationale for each treatment and the benefit/risk assessment of each treatment will be different.  Lumpectomy vs. Mastectomy?  Bilateral vs. Single Mastectomy?  Reconstruction or Not?  SNB or not?  Radiation or Not?  Tamoxifen or Not?  The reasons why I made each of my treatment decisions are my reasons alone.  While I often explain my rationale, I do this only to help someone who is in the decision-making process understand the types of things I considered in making my decision,  Importantly though, I don't expect to sway anyone else to my decision.  In fact, if someone looks at my rationale and thinks "I see things completely differently" and as a result makes a very different decision, I'm glad that my information was able to help them make their decision.

Most of this probably doesn't need to be said but with all the different treatment examples and opinions being discussed here, I think it's important to highlight there there is no single "right" decision.  What was the "right" treatment choice for me might be the completely wrong treatment choice for someone else, even if their diagnosis was similar to mine.  This is because what was important to me more than anything else might not be important at all to someone else.

There's a lot of great information in this thread and a lot of good discussion about how decisions were made and what was important.  nwshannon, what you need to do is weed through all of this and decide what's important to you.  It's not easy, I know!

JAT, I agree with you.  From everything I've read, I've landed on defining DCIS as being a pre-invasive cancer. Yes, there are some doctors who choose to define DCIS as a pre-cancer but they are not the majority.  While calling DCIS a pre-cancer might be appropriate for some low risk subsets of the disease, it is entirely inappropriate for the high risk subsets of the disease where a pre-cancer definition could lead to undertreatment, with serious consequences. So until the scientific and medical communities are able to divide DCIS into two different diseases, one that is low risk and is more similar to other pre-cancers, and one that is high risk and must be treated similarly to an early invasive cancer, I think it's proper to define DCIS as cancer. 

Anonymous

Binney- You are definitely right about tasting my regret about not being prepared for the risks of LE.  I used to be a flight attendant and quit to stay home with my son with the understanding that I would try to return to to when he was older.  I was in the midst of interviewing when I got my DX.  Now I have to seriously reconsider returning to a job I loved because of the risks of LE.  

mdwriter

As per my last post, please read this New York Times article from today: http://www.nytimes.com/2010/07/20/health/20cancer.html?_r=1&emc=eta1 It is why everyone should get a second read on their pathology slides. 

nwshannon

Well ladies I am headed in tomorrow am for my lumpectomy surgery. Nervous and so scared that it is going to be worse when they get in there, MRI was done Wed. but still have not heard the results, keeping my fingers crossed that there were no surprises found. Not to sure about all of you but when my phone rings and I do not know the # my heart skips a beat everytime. I have been on edge and a crazy non sleeping maniac for 3 weeks now so I just hope my surgery goes well.  I will check in as soon as I can. Thanks for all the support, I have met some new friends here that will be life long friends

BarbaraA

Calming thoughts and big HUGS coming at you Shannon. Think peaceful thoughts. We are there with you holding your hand.

Beesie

Good luck tomorrow!  I'll be thinking good thoughts for you and hoping for only good news surprises.

digger

mdwriter,

I was just reading through your earlier post and came across your statement:  the tissue is so changed so that your only option is a radical mastectomy, but now you can not have reconstruction. 

That is patently untrue and I wouldn't want anyone else reading that statement to believe it is true.  There are many, many women on these boards who have had radiation after lumpectomy and then gone on to have reconstruction after a mastectomy was needed.  It is harder to get a good result after radiation, but it is definitely possible given the variety of reconstruction options available today.

nwshannon

Well surgery went well with my lumbectomy, Dr. said everything went great & that he got clear margins and the Nodes were clear....PHEW! Just will wait for final pathology to see exactly what it all was. I ended up having also the 12 O'clock cluster of cells removed as well on the same breast as the DCIS because according to the 1st biopsy it said benign but Dr. said it still looked suspicious on the mri and was not ok leaving it there he said it looked like it could turn into DCIS later on down the road as well, he also took the cyst that brough me in there originally. I have a sense of relief now and will learn more in the next few weeks but as he said looks like radiation and hormone therapy. My mind was just obsessed with the whole lymphnode business & was so scared it was there so the news that they were clear was refreshing. Thanks for all the prayers and positive thoughts it was a huge help! I have an appt with the oncologist this Wed. but not sure if they will have my final path results or not. Still nervous but everyone says that the treatment that I have been told I will have will probabally not change. It has been nice to sleep thats for sure.

Anonymous

So glad everything went well for you and your doctor was so optimistic.  I'm sure your path report will be positive as well.  Good luck!

nwshannon

I am cetainly hoping it all comes back as good as he was saying. I was so out of it but I think as my surgeon explained it to me that while they were operating they send the tissues and the lymphnode to be examined at the path dept. of the hospital is that how they know that they got clear margins and that the node was negative for cancer? It is all so confusing and the gal at the radiology dept said they also send things up to them during the surgery to have pics taken and examined. It is so overwhelming but still feeling uneasy when I read some of the stories on the board about having surgery 3 or 4 times to get clear margins. Not sure how it all works still.

Dilly

Lymphtherapist:  FYI, DCIS was my 50th bday 'gift.'   On the advice of my bs, in 1996 I had bct lumpectomy with reexcision for margins, on a 4mm Stage 0 DCIS in the rb. (while there, she biopsied 1 more rb and 2 lb benign calcifications; this was found through screening mammo)

The bs took no nodes, and I did no adjuvant therapy.  Except for regular followups, mammos, pelvic us, blood work, etc. it was easy to just get on with my life.  I was cured and I believed it, and my right side still would be open to SNB or radiation if necessary in future.  In 2003 the pelvic us showed suspicious and I had an oopherectomy, which turned out benign.  I was then 57 and just beginning menopause, the ooph was no fun, but certainly an estrogen drop.

Continued vigilance with well-care & mammos revealed a new primary in the other breast this April: IDC <1cm, Stage 1b, grade 2, 0/2 (or 3?) nodes ER95%+/PR-, HER2-. Oncotype DX 25.  With that oncotype I had more choices to make for tx but radiation was pretty much a given (ongoing as we speak), while I chose not to have chemo.  With this ER, I will try the AI and hope to get along with it..  

QOL.  I'm a chronic worrier, an independent thinker with trust issues.  For 14 really good years, I didn't worry about lymphedema, or side effects from any number of therapies or treatments that can be taken with DCIS.  I have a really good surgeon and my scars faded long before my cancer fears did. 

I worried about cancer, sure, but I believed in my health care providers, and my choice of therapy, and [eventually] I believed that I was cured.  I was cured of that, this is an entirely different dx. That was my choice then, and it worked for me. You might find something of interest in my numbers. My bs is doing a small clinical trial for treating DCIS, and if that was my dx now, I'd certainly give it a shot.

With the new IDC primary, I know I won't be cured in the same way, and of course I wonder if it would have made a difference in my earlier choice, but even so, my prognosis "is excellent" and I still have options, and the same good doctors, and places like this to share and learn.  If I was younger, my choices might have been different, both times. It's probably the most personal disease of all, and each of us has our own hard choices to make.  It's a comfort for me to think I will more likely die of onery than of bc, but it still stinks.

My hope is for the best life for us all.

Beesie

nwshannon, Congrats on getting through the surgery!  That's one big thing that's out of the way.

As for the results, sometimes surgeons send the sentinel node (or nodes) and some of the breast tissue to the pathology lab during surgery, and sometimes they don't.  If there are cancer cells in the nodes or in the margins, this pathology check might find them and in that case, since the surgeon is still operating, he can take more breast tissue or more nodes.  That's the reason for doing this check while the surgery is going on.  The thing to keep in mind however is that cancer cells are really really tiny and the pathology review that's done while you are in surgery is a quick check only.  So while it's really good news that there are no obvious areas of cancer in the margins and no obvious signs of cancer in the node, it is still possible that the second patholgy review - the more thorough review of the node and the breast tissue that is done after the surgery is completed - could still uncover a some cancer cells in the margins or in the node.  Still, if there is anything there, it's not likely to be much, since the first check would have found any larger areas of cancer cells.  Usually the final pathology report doesn't find anything new, but you should aware that this is possible.  And that's why it sometimes takes several surgeries to get clear margins.  Cancer cells are too small for the surgeon to see, so he doesn't know if he has clear margins or not, and the quick pathology review during surgery isn't 100% accurate.  If it turns out that there are cancer cells in the margin, then a re-excision is necessary.

Good luck with appointment with the oncologist on Wednesday.  Fingers crossed that your final pathology results are the same as the preliminary results, with clean margins and no nodal involvement.

nwshannon

Final surgical pathology in from lumbectomy on July 23rd. Pure DCIS, 2nd area of concern removed as well as it was benign however looked suspicious on MRI & my cyst taken as well. 7 nodes taken all negative, clear margins. No Micro-Invasion found. Starting raidiation 5 days a week for 6 weeks. Opting out of Tamoxafin for several reasons. Both opinions agree on that decision as I am 38 & want to possibly have a family in the next few years, I have also reviewed the studies and I am comfortable with this decision. I will be getting the genetic testing soon as well. I am so grateful for all of you wonderful ladies helping me through all of this & to some wonderful new friends that I will have for a lifetime. I know I will never be alone in this fight.

CTMOM1234

nwshannon - Congratulations on the good news, it's nice to have a test go our way, right? Don't worry about some of the drama folks are posting about rads -- 30 zap sessions later, I'm still glad to have gone through this added "insurance." I met with a plastic surgery when the BS gave me an option of lumpectomy w/ rads. or mastectomy, just wanted to have all of the info. before making the right decision for me, and am happy to have my breast; He also explained to me the reconstruction options even if unfortunately I were to need to have a mastectomy after having rads. and I'm satisfied.

Good luck with the genetic testing (did that, too) and like you, I also was given the option of starting or not starting tamoxifen after rads ended, and I opted not to (but always keep the door open if I change my mind).

Carrol2

I am confused. My pathology report says invasive ductal carcinoma with necrosis.

This is not DCIS is it? 

I had a bilateral mastectomy 18 days ago. I was going to get a lumpectomy but the MRI showed a 7cm lump. The final pathology showed only a 1.2 focus.  

The surgery was not so bad so even if you do need it or decide you want it for peace of mind, it is not as bad as you might think. I was very anxious about the whole thing and now that the surgery is done I feel much better. Now I am waiting for my oncotype to come back to see if I need chemo.