Just diagnosed DCIS

tsmc4

Just got the diagnosis yesterday.....I am 40 and went for my first mammo and here I am.  Not real pleased right now, I have 3 little girls to take care of and really dont need me to have issues.....they have enough of their own!  I have very little info and would love to hear if anyone knows what these numbers mean, my Dr. didnt have a clue and I don't have an appt with the surgion untill next Fri.  I have a tubule score of 3, nuclear score of 2 and mitotic index of 1.....the overall histologic grade 2.  Also, what kind of questions do I need to be asking the surgion on Fri.

CandDsMom

tsmc4- so sorry you have reason to be here too, but you have come to the right place - the women (and men) on these boards are very supportive.  I have 2 young kids myself and I know that has been the hardest part for me...You will get through this.  Right now I think is the scariest time because you are in limbo land waiting to find out more info from the surgeon, etc, but you will get through it!

I am not sure what the tubule/nuclear/mitotic scores mean other than they are descriptions of how your DCIS cells look under the microscope so this is probably a better question for the breast surgeon.

I am sure that others will have a more definitive list, but in retrospect these are basic questions I would ask are:

-estrogen/progesteron receptor status (can tell you if hormonal medications like tamoxifen would be helpful in preventing a recurrence)

-type of DCIS (papillary, comedo, cribriform) and is necrosis present (tells you how aggressive the DCIS is and/or if it is likely to be in multiple spots in the breast)

-are any other tests like breast MRI recommended? (to see if there are other spots of DCIS are in the breast since mammo and ultrasound don't always show everything)

-how large does the area of DCIS appear to be? is it in one spot? multiple spots?

-you are on the young side at 40 - is there any indication of a family history of breast or prostate or ovarian cancer and should BRCA 1 and 2 genetic tests be considered (helps determine if you are at increased risk of breast/ovarian cancer which might change what you to in terms of surgery) 

-there is a very interesting NY times article on DCIS from last week (see thread lower down) about how DCIS is diagnosed.  Having had some pathology issues myself I would recommend a 2nd opinion at least of the biopsy slides by a NCI (national cancer institute) center to make sure you know what you are dealing with http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

-I personally also feel that a medical oncologist's opinion is important in helping you to sift through what your surgeon tells you and to be your advocate as you move through this process.  Perhaps your primary care doc can recommend one?

I remember when I was first diagnosed and all I could think about was "get it out of me now!"  but please take some time to really think and talk things over.  With DCIS, you fortunately do have some time to research, get informed and make the right decision for you.  Take care!

CandDsMom

I would also start requesting copies of all:

-mammogram/ultrasound reports

-pathology reports

It is important to have these for your own records and so you can be as informed as possible about everything.

mjh69

Hi,

I am about one month ahead of you..my first mammo at age 41 with subsequent biopsies showed DCIS...I have 4 young kids...the scariest part is the beginning, once you meet with your sugeon and get your plan of action, things are much better...I had surgery last week and feel great this week, I elected a bmx with immediate reconstruction, I feel like it was the best decision for my family and I, and the recovery hasn't been bad at all.  I am sorry you are in this position, you will get through it..There are lots of us in the same boat, God Bless you and your family, you will be fine.  Ask questions, feel comfortable with your medical team, take comfort in the many options available to us for treatment.

Mags

tsmc4

Thank you everyone for the info...I am feeling quite a bit better thanks to a little helper from my Dr.  I am going to take the weekend off and go on a little vacation to clear my mind and pretend like this is not happening and will be back on Monday asking many questions and try to get my ducks in a row for my appt on Friday.  Have a good weekend and God Bless everyone!

chita

I'm sorry you have to go through this.  You have time to make a decision, get all the facts, seek two to three opinions. Make sure you are comfortable with all your doctors.  If there is a large cancer center nearby, I would recommend going there. Make sure the surgeon specializes in breast cancer.

Anonymous

tsmc4- CandDsMom had some really great advice.  Basically, what it is going to come down to is a choice of lumpectomy or mastectomy.  With lumpectomy they will more than likely recommend that you do radiation afterwards and then take some kind of hormonal therapy for 5 years afterwards.  Downside of both?  Radiation can make you extremely fatigued for the duration of the treatment and can change the skin of the breast.  Down the road, should you need reconstruction, or mastectomy with reconstruction, it can make it kind of difficult but certainly not impossible.  If you choose mastectomy just on one side, or if your final pathology report shows something different than what they're seeing now, your doctor may or may not still order radiation and hormone therapy.  If you choose double mastectomy, provided again that the final path report doesn't show something different, you usually do not have to have radiation, hormones or even another mammogram ever again.  But it is major surgery and there are many emotional consequences, as well as physical, to think about.  One thing I did want to make you aware of is some surgeons, but not all, are performing nipple sparing mastectomies for those women considered good candidates.  There are certain criteria to be able to have this type of mastectomy but the two main ones are your DCIS cannot be too close to the nipple and it usually is not too successful if you are too large breasted.  (Most surgeons will only do NSM if you are about a C cup or smaller as the blood supply to the nipple has to travel too far on larger breasts.)  My first surgeon never let me know about this option because she was not trained in it.  I found out by doing my own research before scheduling my surgery.  When I found out I immediately scheduled a consultation with an experienced breast surgeon in this procedure.  I found out I was an excellent candidate and had it done in March.  I know, for me, being able to keep my nipples (although you do those the sensation in them) went a long way towards me feeling whole again after mastectomy.  That being said, though, if you decide to have a mastectomy and are not a candidate for this surgeons can do amazing things today in creating new nipples.  Good luck with your appointment and your decision on how to proceed.

Anonymous

My post was already too long but did want you to know there is a member on here named Beesie who knows just about everything there is to know about DCIS.  I'm sure if you have any questions she would be happy to answer them for you.

CTMOM1234

Just wanted to comment on my experience, which differs from previous poster a bit. Quite similar to you, I'm here in this group that no one wants to be in after only my second annual mammo (micro-calc. cluster seen on routine mammo -- didn't even know what that was, and no family history at all), DCIS grade 2 diagnosed from subsequent stereo. biopsy.

I was happy to be given the option of having a lumpectomy (as you read these boards, you will find that many women unfortunately are not given that option, and have no choice but mastectomy). Radiation and/or tamoxifen aren't always the course if you have a lumpectomy. In fact, I'm not taking tamox. but did go through the standard 6 weeks of radiation -- Rads were fine, I felt very little fatigue (and I mean very little, almost none) and my skin looks and feels virtually the same as it did when I began treatment back in March '10. The hardest part is mental, once you get your plan in place, it's fine.

I am so thankful to still have both breasts, including full sensation in them, and just wanted to make sure that you proceed carefully, as you are at the most scary point and often we "just want to take 'em off." I initially felt that way, even went so far as to consult with a very well-known plastic surgeon before telling my breast surgeon whether it'd be mast. or lump. I also asked plastic surgeon if my options were limited if I had the lumpectomy and then later needed a mastectomy, because I'd read on these boards about skin changes from rads. The likelihood of said recurrence is low, but I just wanted to make a very educated decision. He assured me that I could still have reconstruction post-rads if needs be (I would never want implants, I was only interested in using my own natural body, and spoke with him specifically about DIEP, which ps said was fine).

Mastectomy is not reversable.

NotAgain2015

Hi tsmc, 

Welcome to our club.  Sorry you have had to join us, but you'll find this board is invaluable. All of the responses above are spot-on.  Where you are right now is the toughest time of all.  So many questions, so much waiting.  You will soon start to learn alot about what you have and you will feel better - your path will become clear to you. 

I thought I would chime in and second CandDsMom and CTMOM's notes above. It is so difficult in the beginning and you do feel like you just want to have a double mastectomy and be done with it.   Some choose that and I too considered it - and see the value in it.  I'm not saying one decision is better than another - absolutely not.  Everyone's decision is their own and there are so many facts that lead up to each and every one.  You just have to weigh the pros and cons for you.  Just thought I'd share mine too. 

Like the others here, I recommend that you take your time.  I initially had ADH.  I had my biopsy surgery and that came back DCIS with clear margins, so I didn't have to do a second surgery.  After that, I met with a geneticist (to rule out BRCA gene).  I also had a 2nd opinion at a well respected university hospital and had a 2nd opinion of my surgery pathology as well.  I learned more from that 2nd pathology result and highly recommend it.  I had a last minute panic and also met with a plastic surgeon.  Even with my family history, all physicians suggested lumpectomy with radiation as their primary suggestion.  In the end, I went with the overwhelming consistency of recommendations.  As of yesterday, I've had 22 out of 30 radiation treatments, and like CTMOM I have not felt fatigued yet - at all.  I work full-time and live in the South and have been outside in the heat this summer.  Even the skin irritation has been very tolerable.  I'm not crazy about having to do it, but once I made the decision, I'm fine with it.  I still haven't made up my mind about taking Tamoxifen. 

In hindsight, and if I'm reading your situation correctly, that you found DCIS after needle biopsy but before surgical biopsy, you are in a great position to do alot of research now before your upcoming surgery.  That way, you can have your plan and quickly execute it - whether you end up with mastectomy or lumpectomy/radiation.  When your diagnosis is DCIS, you have more time to learn and decide than if your result were invasive. I mistakenly thought I had more time  post surgery - but they like to get a move on if you are doing lumpectomy/rads.  So the sooner you can start radiation the better.  I didn't schedule all of my 2nd opinions,etc. fast enough and didn't start radiation treatment until 9 weeks post surgery.  Something that I hope won't be my undoing later on.

Search for posts by Beesie.  She has some wonderful summary posts here.  I had started a thread when I panicked titled "Radiation vs. Mastectomy, Decisions, Decisions..." and many wonderful women posted their experiences there - choosing one way or the other and why.  I found it very helpful.

Let us know how things go.  I know it's tough right now, but we're here for you!!

tsmc4

On the way home from my vacation i got a call from my gyn (who I called and asked to look at all my mammograms and biopsy, because my general practitioner is the one who had all my info),  and she told my that my reports say invasive DCIS!!  Now....just when I thought I could handle all this, I am totally stressed again and do not understand, because I didnt think these two words went together....does anyone understand this? 

Also, I have one appt on Friday and feel like I need to get a couple more opinions, how do I find a good place to go...I also live in the south and my husband said he was fine with me going wherever we need to go.

I am also wondering how some of you that have children dealt with telling them...they are 18 (boy), 8, 6(almost 7) and 4year olds are all girls.  And do I speak with their teachers and coaches (6 and 8yr old are with them 12-16 hours a week)?  My 8 year old is already asking many questions about why all the Dr. appts, where did you go last night, why are you taking notes.

At this point, I am afraid to even call another Dr. and ask anything else, because it just seems to keep getting worse...and to be honest I really dont like any of the options  i'm reading about! 

Thanks again for all the invaluable information, I would be lost without it!  

Lovegolf

Breathe......Get a full copy of all your reports for yourself.  Go talk to your Gyn.  You have options and you can and will get to the other side of this thing.....This part is the worst ...once you have all the information and come with a plan you will feel better.

Anonymous

tsmc4- You are right about one thing.  There is no such thing as invasive DCIS.  DCIS stands for ductal carcinoma meaning it is contained within the ducts.  Once it becomes invasive it is no longer DCIS.  I will PM Beesie as she really is the expert on here about DCIS.  You can also do a member search on her and read her posts.  They are filled with lots of good information.  As far as how to tell the kids we just told my son very basic information in little bits.  I asked him if he had any questions and kind of gauged how much detail to go into based on what he asked.  Only you know your kids and what they can handle but I just didn't want to throw everything at my son all at once.

Beesie

tsmc4, when you see the surgeon on Friday, ask to get a copy of the pathology report. Or even better, go to your gyn's office and get a copy sooner than that.  The problem in dealing with a GP and a gyn is that they aren't experts on breast cancer so it's easy for them to misinterpret a pathology report. As you already know and Kate confirmed, there is no such thing as invasive DCIS.  So obviously your gyn is not the right person to be talking to about this.  The surgeon is the expert so he's the one who should be able to answer all your questions but in the meantime, if you get a copy of the pathology report, some of us here may be able to help out.

It sounds as though the question now is whether your biopsy showed only DCIS or both DCIS and some invasive cancer.  That's a very important question to get answered.  If I understand correctly, up to now you've just had a stereotactic (needle) biopsy, is that right?  Because if that's the case, then it's important to know that whatever was found in this biopsy sample may not provide the whole picture of your diagnosis.  Usually the final diagnosis after surgery is not significantly different from the preliminary diagnosis after a biopsy but there's always the possibility that something different might be found once all of the suspicious tissue is examined under a microscope.  So if all you have so far is a needle biopsy result, keep in mind that these are preliminary findings.

CandDsMom has given you a good list of questions to ask when you see the surgeon on Friday. I'd suggest many of the same questions, focused in two main areas:

First, you need to understand the diagnosis from the biopsy.

- Is it just DCIS or DCIS plus IDC?

- What is the ER/PR status?

- What is the grade (from what you've already said, it sounds as though it's Grade 2).

- Is there any comedonecrosis?

Next, you need to understand what the surgeon believes to be happening and based on that, what your options are.  This information will all be a guess but it will be an educated guess, based on your pathology results and what was seen on your mammo film:

- Does it appear that you have a single focus of cancer or could there be multiple areas? 

- Overall how large is the total area of concern? i.e. what's the surgeon's estimate of the size of the cancer?

- Based on this, does it appear that a lumpectomy will be feasible?  Or does it appear that a mastectomy is likely to be necessary?

- What does the surgeon recommend as a next step?  Should you have an MRI (I'd highly recommend that)?  What surgery does the surgeon think makes the most sense in your situation? Keep in mind that this is the surgeon's opinion only - the decision on what type of surgery to have is yours - but knowing what the surgeon thinks is reasonable helps you understand your options.

Good luck with the appointment on Friday.  And get a copy of that pathology report before hand, if you can.  Also, try not to stress (I know, that's impossible!).  Remember that even if some invasive cancer was found in the biopsy, it doesn't mean that you have a lot of invasive cancer or even that it would change your treatment plan vs what it would be if you have only DCIS. From your previous posts it sounds as though you may have only a small area of cancer; if that's the case, then having a small amount of invasive cancer will hardly change anything at all.  At this point you know so little.  That makes it easy for your mind to go to the worst places, but try not to let that happen.  "Invasive" and "DCIS" don't go together, but it's very possible to have invasive cancer that is very early stage breast cancer. 

Anonymous

Beesie- I should have known you'd come along!  Didn't even need to PM you! :-D

tsmc4

Wow, thank you so much Bessie  and Kate for all the info...I did think about getting the pathology report myself, but a part of me said that i dont think I want to see it.  I now am assuming that maybe she ment DCIS plus something invasive also.  I now have a good list of questions and feel comfortable in that I have a good basis to start from with the appt with the surgeon. 

I think I have a good oncology surgeon to start with, but am wondering how do I go about finding a good second opinion.....how do I do this, my friends are not dealing with this kind of stuff yet and they have no idea.  Is it neccesary or worth traveling to well known dr's ?

Also, what is ER/PR?

Aussie00

Hi tsmc4 - seem to be in the same boat as you. Waiting to see surgeon next week. Radiologist seems to think its DCIS. I am 39 with 2 girls, ages 13 & 10. No breast cancer history in my family. Wish you luck & hope that you & myself can get all the advice we need from all these loving people

CandDsMom

tsmc4 - ER/PR refers to estrogen receptor and progesterone receptor - basically are your cancer cells hormone receptive or not.  If it turns out that you do have an invasive component, they will also likely check you for HER2/neu receptors as well.  All of this can help to inform you of your options and in your decision making assessment.  I would also strongly urge a consultation with an oncologist before you decide on any surgical decision either way.  take care...

Aussie00 - I am sorry you have to be here too.  I have found women on these boards to be so supportive that I am glad you have found it (I wish I had found BCO before my surgery!)

take care yourself too... 

tsmc4

Aussie good luck on your appt, I sure hope you get good news.  Was this your first mammo too?  I have 3 aunts, mom, grandmother and no bc anywhere to be found....i find it very bizzare!  I have learned so much from this website and now feel like i really can go to my appt on friday and will be able to understand what they are telling me....I took me several days if not a week before I could even read anything and if I did read anything I was not comprehending.  I took a weekend vacation and put it to the side as much as I could and now can function much better and I reread all the post that all these wonderful women have sent me over and over again.....a little valium helped a lot to!  I was sooooo embarrased to ask for the valium, but am so glad I did and wished I would have earlier, I think they should just automatically offer it before the biopsy!

CandDsmom, I am going to a surgical oncologist that specializes in BC only....should I be going to a nonsurgical oncologist also?

CandDsMom

Yes, I would also go to a medical oncologist who has a special interest in BC as well as your surgical oncologist.  It is also worth a 2nd opinion as well.  Do you have an NCI (national cancer institute) near you? http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html. 

The surgeons I have found are helpful but they are more focused on the surgical management (lump vs mast) and I think a medical oncologist is really helpful to help you understand what the data all mean and what all your options are surgically as well as from the medical management side (like will any treatments such as tamoxifen be recommended, what is your risk of developing BC on the other side, etc).  They may also be more available to you to get questions answered since they will be in their office (versus the OR) and to help guide you through the process. 

With regards to telling your kids, mine are younger than yours and I could get away with "mommy has some boo boos" with him so perhaps some other ladies have some suggestions for you with regards to this...

Keep hanging in there!  We are all with you!

tsmc4

Well crap, it looks like I have to go join the IDC crowd.....i'm sure they are great too, but sure was hoping I could stay here with you gals!  I go for a MRI on Monday morning and have appt's with the radiologist and plastic surgeon also to help me decide between lumpectomy/radiation or masectomy and possibly chemo after either way I decide.....if I have a decision, I guess MRI will tell. 

CandDsMom

tsmc4- so sorry to hear the latest.  you are in my thoughts as you continue along this journey.  take care...

CTMOM1234

tsmc4 - It is awful hearing that there's IDC in addition to DCIS, I'm sorry. And it's a shock, I know (been there), but depending upon the extent of the IDC, the treatment may or may not differ much from just pure DCIS. You are wise to get as much information as you can so that you can make the best decision for you.

Although my final lump.pathology report moved me "up" from stage 0 to stage 1, I still find I have the most involvement with this board (along with the March '10 radiation board which was a wonderful way to work through rad.issues with others going through the same things at the very same time).

Good luck with the MRI and that all goes well.

Beesie

tsmc4, I'm so sorry to hear that.  Do you have a copy of your pathology report?  I know that you've mentioned that you are triple negative.  That isn't the best (because it means that you won't benefit from Tamoxifen) but it's good that you aren't HER2+.  Your hormone status is one big factor in your treatment; the other is the size of the area of IDC.  Is there any estimate from the surgeon on how large your IDC may be?  I know that there can't be a definitive answer on this until after your surgery but usually doctors can provide an estimate.

tsmc4

.02 cm  or 2 mm...but I also asked if that means that this is the amount they took out with the steotactic needle biopsy or if it is the whole amount that is there and she said that is the amount they took out and she assumed it was small......??  She also said that she did not feel a knot....i suppose this is good??  I really want to make a decision by friday what to do....she says that the recurrence rate is the same whichever I choose, I really dont know what to do and I am so sick at my stomach I can not eat a thing!

tsmc4

Well my decision came pretty clear last week when I saw the radiologist.  My MRI showed two more areas of concern that they wanted to biopsy, if they were cancer then I no longer had a choice of lumpectomy/radiation, so I decided real quick to not even have them biopsied and go for the double mastectomy and be done.  Well, not really be done, they said I would have to have chemo, whether it was in lymph nodes or not.  Does anyone know how much time you get betweeen mastectomy and chemo?