Just Dx w/DCIS results given by receptionist

pat1154

I'm frozen with fear....2 weeks ago I went for my yearly mammogram(was 5 months late). 2 days later received a call, mammogramm was abnormal.Went back for a spot compression and ultra sound a day later received a call from my Dr. telling me that results showed possible DCIS,met with surgeon this past Monday,had byopsy and Thursday received a call at work , it was the surgeon's receptionist who told me byiopsy was positive for DCIS,cancer cells were found. When I asked to speak to the Dr. I was told that she was out of town and nurse was not in either.She set me up with an appointment for next Tuesday.At this point all I know is what I wrote down from the report when I asked receptionist to read it to me; "Highgrade DCIS Comodo"Please help I don't know how I'm going to deal with this fear for an other 3 days,can't sleep, eat or sometime even breath...what is going on?Thank you

sunnyhou

Take a deep breath. First that was terrible for them to do to you. Having the receptionist call you? ughhhh.. I would be angry with the Dr for not giving you the news herself. DCIS is non life threatening. So try to relax and you will get more info on Tuesday. In the meantime, look at all of us who have gone through this.. we are all still here and we can help calm you down. I have been where you are.. and I know how hard it is. I am now on the other side and enjoying life and glad that it is all over.. YOU WILL GET THROUGH THIS..

DCIS is almost 100% curable.. say that a hundred times..

sunnyhou

by the way I had high grade comedo. grade 2..

wich is stage 0

Beesie

Okay, take a deep breath!  It's frightening - I know! - but chances are that this isn't going to be nearly as bad as what you probably are now thinking.  While your diagnosis at this point is preliminary only - you won't know the full diagnosis until after your surgery - at this point what's known is that you have DCIS.  DCIS is the very earliest stage of breast cancer.  No one ever wants to be diagnosed with breast cancer but if it's going to happen, DCIS is actually what you want to hear. DCIS is pre-invasive breast cancer, which means that the cancer is still at a stage where it doesn't yet have the capability to move beyond the breast.  Over time DCIS can develop to become invasive cancer, but if DCIS is caught, removed and completely eliminated before this happens, then the survival rate is 100%. This is true even of high grade DCIS. 

I will bump to the top of the list of posts two older posts that provide a good explanation of what DCIS is all about.  One is called ""No Radiation after a Mastectomy"... and other misconceptions" and the other is called "Past post from Beesie on understanding DCIS".  Reading those posts should give you a start on understanding DCIS.

Jelson

pat115

and don't go blaming yourself for any of this - the fact that you were 5 months late for your mammogram might have been a good thing. Perhaps if you had had your mammo earlier, it would not have been seen. Maybe when you had your mammo was just the right time, So there.

read Beesie's posts, write down the questions you want answered by the surgeon, Bring someone with you to your appt.to prompt you on your questions and to take notes. Ask for copies of your mammos, pathology reports, visit reports,  You will get through this. 

Julie E 

pat1154

Thank you all for all the info and words of encouragement. I can't stop thinking of one word I heard the surgeon  wisper to her assistant  while looking at films during biopsy "has migrated" it first I didn't give it much thought now all I think about is that she was referring to the cancer having moved outside the duct...I know I probably sound crazy and paranoid....Still, I feel better after reading all your wonderful posts. Thank you again,will keep you posted.

ishobie

I can't believe they would allow a receptionist to tell you those type of results. Even though as everyone says DCIS is not the worst DX, just hearing cancer is enough to scare anyone. When I had my mammo on 4/16 I could tell by the mammo tech that something was wrong. I actually saw her RUN down the hall to bring it to the radiologist. I thought okay I am dead. How unprofessional.  Don't freak out, easy for me to say, just try to think positive and each day will bring you more information.

good luck and take care

Susie123

If the biopsy came back DCIS then it hasn't migrated. When the cancer moves outside of the duct it's called IDC. As the other ladies said, if you have too get BC, then DCIS is what you want. If cancer is this big pool of bad, you're barely dipping you toe in the edge of that pool of bad. Of course I know in the beginning when you hear the word "cancer" you feel hopeless and all the particulars are not comforting yet.. Hang in there, it will get better. My Dr actually called me at work to give me my diagnosis. After she said the word "Invasive" ( I had IDC ) the rest of the conversation might as well have been blah blah blah, because I didn't comprehend a word she said after that. Just remember that breast cancer is not the death sentence that it used to be. DCIS is the absolute earliest and is contained. It's so early that it has not became invasive yet. Very treatable, Very Curable. I know it's cancer and that is such a scary word. Just concentrate on the Very Treatable, Very Curable part of it! Sending you hugs and keeping you in my prayers.

((( HUGS )))

Susie 

dsj

It is the pits that you got your news from the receptionist.  (I have changed gynecologists because he didn't call me after referring me for a biopsy, and I was just dangling out there over the weekend having spoken to no one except a radiologist I had never met until he did the procedure).  BUT once I saw a breast surgeon and talked it through with him, I felt MUCH better.  Read up on DCIS (Beesie's posts are really, really helpful).  As long as you only have DCIS, and if more had shown up on the biopsy that would be on the pathology report the receptionist conveyed to you, you have non-invasive cancer.  That means, by definition, it's contained in the ducts and can't spread or migrate outside the ducts.   Nobody knows for sure if they have only DCIS until they have the lumpectomy or mastectomy.  So of course you will worry til then.  But in the meantime, try to keep the news in proportion.  You have to take DCIS seriously but it doesn't change  your life in the way that invasive cancer does.  Keeping you in my thoughts.  dsj

pat1154

Thank you,I will try to stay positive,but as you know its hard.....I thought I  had found all I needed to know about DCIS,I was not aware that the surgery will actually reveal the true extent of the Ca.I was under the impression that as bad as it may  have sound once removed that would have been it. didn't know about additional testing after surgery and possibly more serious results,I guess I'm confused,So, path results may be wrong?Sorry to be such a pest but this Dx came out of nowhere,feels like a nightmare from which I can't wake up I dread next Tuesday when I will meet with surgeon,I keep thinking the worst....

Beesie

Pathology results from a biopsy aren't wrong, but needle biopsies only test a few tiny samples.  Cancer is often a combination of many different conditions.  I had ADH (a high risk condition), about 4 or 5 different types of DCIS and a microinvasion of invasive cancer.  A tiny needle sample isn't going to uncover all that.  So until the entire area with cancer is removed and analysed, no one can know for sure what the final diagnosis is.  The good news however is that for those who are initially diagnosed with DCIS via a needle biopsy, in about 80% - 85% of cases, the final diagnosis will be DCIS, and nothing more serious.

sunnyhou

Hi there

like Beesie said they really do not know the whole story but most of the time the biopsy is correct. I think she quoted the statistics above. My biopsy said DCIS and once I had my surgery I still had only DCIS. So the story stayed the same. BUT oh how I worried night after night while I waited for surgery. I wasted ALOT Of time worrying about something that never happened

hope you can relax a little.

good news is Tuesday is right around the corner

pat1154

Beesie,I'm sure I'm speaking for all of us on this board You Are Wonderful!! Thank you .Pat

MariannaLaFrance

So sorry you've had to find out like that and then kept hanging. I hope you get some news this week. What a tough couple of days. Take a hot bath, relax as best you can, and don't be afraid to take a sleeping aid if that helps you sleep. Then get on the phone and call them first thing on Tuesday! If there's another doc in the practice, I'd suggest even calling on Monday to see if she/he would read your results to you. By the way, what the receptionist did was highly inappropriate, and I'm fairly sure that she might get fired over releasing information in that manner.

You've found a good group of women who can listen to you and offer up what happened to them in their DCIS journey. Peace to you , and please keep us posted as you get your results.

pat1154

Thank you Marianna,

I was ready to let them have it when I went for my appointment following biopsy results but when I got there I froze. I felt as someone had me by the throat.I just listen to the Dr. go on and on "yes it is  DCIS High grade, been there a long time, may be there for an other 50 years....will do lumpectomy about a golf size ball,low chance of invasion between 4% and 20% yours probably 20% Lets do MRI to see extent of invasion if any and size.Pics  of Stereotactic not great,not digital couldn't realy see calcifications"....?

I'm more confused now than before also terrofied that phone might ring with  even worse results from MRI. I think I'm loosing my mind.... my underarm feels a little sore or maybe just a twich, is it lymphnodes....?, the biopsy...? or am I just going crazy? Never hurt before Mammo

Thank you for letting me vent.

CTMOM1234

Pat - Believe me when I say that all of the head spinning you are going through is now at its peak, BUT IT WILL GET BETTER! This period of waiting, testing, fact gathering, and appointments was most certainly among the most stressful part of this entire journey.

 We've all been there -- ALL OF US -- and you keep venting and typing, it really does help.

pat1154

Thank you for understanding,the last four weeks I don't recognized myself,I've always been  a strong  woman with a positive attitude and (I'm told)"good sense of humor",where has all gone...? I'm going for a second opinion tomorrow,not that it will change the DX,but was not comfortable with first surgeon. Been living with constant anxiety. Thursday I had an MRI,today I kept the phone off the hook all day,too afraid of hearing that results were worse than original biopsy I'm not even sure they would have called since my appt.is tomorrow.I was beggining to accept the DCIS,because so many of you are brave enough to support and encourage those of us just diagnosed,but when I heard,of MRI, lumpectomy... I undestood that pathology results were only the "tip of the iceberg". Still venting and typing........thank you

tweetybird

Pat,

Wow! I can't belivet that the receptionist actually called you! My Doctor didn't even call me at work, because she wanted to make sure I was around my family when I found out I had cancer. I had a biopsy scare in February, and she called me at work with the results from that. Thank God they were b9.

I would definitly mention it to your Doctor when you see him/her tomorrow, about the receptionist calling you. I changed places where I get my mamo/ultrasounds done, because I just didn't feel comfortible, and a Doctor didn't talk to me at all. I was always prone to calcifications, and I always had at least 3 different mamos when I went, and the old place only did 1, and said we'll see you in a year. Needless to say, I never went back, and the next mamo that I had was the one that they found my DCIS.

Hang in there! I'll be praying for you, and come in here and vent as often as you want, it's the perfect place for it!

lvtwoqlt

Pat, take a deep breath, I got the call on a Friday afternoon (4:00) on my cell phone while I was at work. The first thing the nurse asked, 'This is nurse xx from dr xx office, are you at home alone?' I knew right then. She went on to read the results low grade DCIS, and it was a 'good' dx. She then said I see you have a follow-up appointment in 3 weeks (that had been scheduled the day before) but with this path report he will want to see you before then - probably the next week, but the front staff had already left. They would call me the beginning of the next week to schedule me to come in as soon as they could find an open slot. Due to previous problems (2 other biopsies for ADH) I had already discussed with my surgeon what I wanted to do should any other problems arise. We didn't need to do the MRI because I opted for bilat mast and not lumpectomy and after my surgery, the final path report showed additional ADH in both breasts but no more DCIS.

Kristinka

Pat, can you bring somebody to your appt tomorrow to take notes?  Also, I recommend that you write down some of your questions and even your worst fears and bring this list to your appt.  I found that writing lists of questions actually calmed me down, because it gave me some power.  Sometimes I printed out two copies of the list and gave one to the doctor to look at during our appt.

 YOu can also bring a small tape recorder to tape your session with the doctor -  you might do that if nobody can come with you.  I taped one session with a pathologist, and it was so informative to be able to listen to that tape.

I was diagnosed with DCIS almost exactly a year ago, so I remember all of the fears you have now.  If you'd like to talk by phone this evening, please PM me, ok?

best wishes to you,

Kristen