just diagnosed with DCIS

mercurialqueen

Friday the radiologist called me and said I have DCIS.  I already knew the prognosis of this, but still I was very scared to hear it.  I was so scared and nervous that I did not ask many questions, like the size, the grade.  The only thing I asked was for the treatment.  He didn't say much just that the surgeon has to call me to set up an appointment to see him, and that the treatment does not involve "medicine", I guessed he ment no chemo.

If they do radiations, which I am sure I'm gonna get,  how many are there?  I heard six weeks, but is it 6 weeks every day or so many days a week?  I would really appreciate some more enlightment, I learned so much from this site.  Thank you in advance.

AmyD

Have you had a biopsy?   A MRI?  The biopsy provided important information as did the MRI and a decision of treatment was made due in large part to these two things.

I had a mastectomy because of the size of my DCIS and the small size of my breast (a lumpectomy would have been too disfiguring).  I did not receive radiation after the mastectomy.

If you have a lumpectomy, it will likely be recommended that you have some type of radiation.

     

DCIS 4.5 cm, grade 3.  Mastectomy 7/27/09, ER+/PR+, 0/2 nodes.  No chemo.  No radiation. 

ordinarymammal

Diagnosis is a very scary time.  There is so much you have to learn, and it feels like you have to learn it so very fast.  But with DCIS, you probably have ample time to think things through before making decisions.  DCIS, by its very nature is "in situ" which means it is not invasive and not life threatening.

Not all women who have DCIS need radiation.  For instance, the extent and location of my DCIS does not make me eligible for a lumpectomy; but the surgeon is expecting to get nice big margins with the mastectomy, and most likely I will not need radiation.  This is not guaranteed, though, as we find out more after surgery.

I think women with low grade DCIS and good surgical margins might opt for no radiation--but I could be wrong. I have not researched this much, since that is not my situation.

Which brings me to something I think is very important.  You need to find out what YOUR own situation is before you worry about different treatments.  Please call your radiologist and ask for a copy of the pathology report.  The members here are awesome at helping you decipher it, and it always helps to know what you are dealing with, instead of guessing at unknowns.

Best of luck.  Breathe.  You are not alone.  You will get through this.

flyingdutchess

There are 2 ways to go.  One is called brachytherapy where they insert a "balloon" in your breast where they removed the tissue during the lumpectomy.  You then have radiation two times a day for five days.  The other is whole breast radiation.  It varies from 5 to 7 weeks depending on the radiation oncologist's decision about where the cancer was and how big the site and a whole lot of things I don't know.  Anyway for the whole breast radiation you go once a day, 5 days a week for 5 to 7 weeks.  They tried the brachytherapy on me but since I had 3 lumpectomies to get clear margins (there has to be a margin of clear normal tissue surrounding the bad stuff they take out to make sure they got it all) I had started to heal from the first lumpectomy and the brachytherapy wasn't getting all the areas they needed to zap.  So they wound up doing the whole breast radiation.  Neither type of radiation was painful.  The whole breast radiation makes alot of people very fatigued.  It did not affect me this way.  You have to slather your breast with a lot of lotion to prevent a "sunburn".  I had some burning but not bad or painful.  The whole thing takes just a few minutes and is not painful.  The set up, changing you clothes and positioning you for the radiation takes a little time, but I was in and out of the office in about 20 to 30 minutes each time.  I don't know if you have had any children.  I remember when I was pregnant, people told me all sorts of horror stories of knowing someone who had deformed babies or miscarriages.  Thats what people do when you tell them of your diagnosis.  DON'T LISTEN.  You will be fine.  The worst part of the whole thing is hearing the diagnosis and not knowing where to turn.  If you need to you can PM me (you just click on flyingdutchess by this email and the site will talk you through).  This forum is a wonderful support.  Hugs across the miles.  YOU WILL BE OK.

mercurialqueen

Thank you.  Yes. I had a biopsy last thursday and they called me Friday with a diagnosis of DCIS.  And it's true, I have to find what MY own situation.  Tomorrow I will go to the radiologist and have him show me the pathology, today is a holiday in Massachusetts and the place was closed.  I am still riding the rollercoaster of being petrified to being confident.  I want to get off this ride!!!!

dsj

You will feel better after you've talked to the breast surgeon, who can explain your options.  Whether you have radiation or not depends on what kind of surgery you have and what they find in the surgery.  But if you have DCIS and only DCIS, you will not have chemo.  This is because DCIS is not invasive and can't travel around your body.  Chemo is a systemic treatment (goes through your whole body and attacks any cancer cell that may be lurking around),  and DCIS is confined to the ducts.  If you do have to have radiation, flyingdutchess is right, it's usually 5 to 7 weeks, every day (unless you have the balloons), but the radiation itself is completely painless and quick.  I am in and out in about 15 minutes. There is a lot of great information and support on this site.  Lots of people here to help you.

mercurialqueen

Thank you everybody.  knowing something in advance eases the anxiety.

schipmom

I am in my 5th week of radiation (undergoing 6 weeks of rads).  It's really not that bad.  Usually I'm in and out within a half hour.  No real bad side effects yet either.  I know how scary it is, especially at the beginning when just diagnosed.  Let us know what you find out today.  Please PM me if you'd like more info or just would like to chat.  I'm from Massachusetts too by the way!  Have a good day.

CTMOM1234

Yesterday was my last radiation treatment (30 sessions in all, it wasn't bad) and I was in your shoes 6 months ago. I'm much happier now than I was when first diagnosed, and so will you!  The scariest part is where you are now, just the absorbing of the diagnosis, having further testing and then developing your plan of attack. I, too, was told that with DCIS you have some time, but the waiting is so hard and there are a lot of doctors appointments to follow as you can see from my below.

My DCIS was suspected after a routine annual mammogram at age 44 showed some calcilfications and they appeared clustered. I had zero known other medical issues, never had any surgery, no one in my family has ever had an irregular mammogram, and no calcs have been reported on my previous mammograms, so I was pretty thrown by the news. Here's some of what you may go through:

The following week I had a stereo.biopsy and the pathology report stated it was grade 2 DCIS. I then met with a breast surgeon who scheduled me for both an MRI (which resulted in another biopsy on the other breast, thankfully was benign) and genetic testing (which thankfully was negative). In our second meeting, the breast surgeon gave me the option of lumpectomy with radiation or mastectomy.

I then met with a radiation oncologist to discuss radiation treatments in case I chose the lumpectomy route, and she suggested a 6 week (5 days a week) full-breast course of treatments rather than implanted mammosite due to the believed extensiveness of the DCIS. I also met with a plastic surgeon to discuss immediate reconstruction if I opted for a mastectomy; after both consultations, I decided for the lumpectomy with radiation, knowing that if the margins weren't clean, I might need to have a further surgery or ultimately a mastectomy, and if there turned out to be invasion too, I might need chemo. It was also explained to me that radiation is typically a one-time thing, so if there was a recurrence in that breast, I would likely have a subsequent mastectomy. I know, neither option is perfect.

The pathology report from my lumpectomy surgery stated the margins were clean but that there was 1.75 mm of invasive IDC not detected from the MRI or mammogram. I had a second surgery in which my sentinel nodes were checked (thankfully 0/3 were reported fine). Also before starting radiation, I met with an oncologist who did not recommend chemotherapy because the IDC was less than 1 cm. She gave me a 60-40 recommendation to go on tamoxifen (hormone therapy) after radiation for the next 5 years, and I have the prescription

The radiation oncologist had me take a baseline (post-lumpectomy/pre-radiation) mammogram on the affected breast before beginning radiation and it was fine.

This summer I will have a 6 month follow-up with my breast surgeon and also mammograms on both breasts.  I believe for the next couple of years, I'll have 6 month mammos. and possibly an annual MRI, insurance dependent. I have chosen to experience peri- and menopause without hormone treatments, but may revisit this if my mind changes. It is nice to have choices, even though they are difficult to make.

Good luck and I am sure you will find much comfort and information from the wonderful people on these boards.

mercurialqueen

I called my primary care MD today to read me the pathology, she said it was high grade so "it's a little more aggressive".  They are going to call me soon for the surgeon appointment.  After seein him I'm Brasing for the worst, I don't know why.

Lonib07

mercurialqueen I too was very anxious when I was diagonsed.  Make sure you get a copy of your pathology report and research the information in it and ask as many questions as you need.  Once I received my pathology report, I read it and did lots of research and was able to understand more about my particular diagnosis.  This board has lots of valuable information too that is helpful,

Each of us has to make the decisions we feel comfortable with for our particular diagnosis. Take the time to educate yourself on your diagnosis and don't feel rushed or pressured to make any decision with treatment you're not comfortable with.

I was diagosed 2/15/10 and finally made my decision last week to have a double mastectomy with reconstruction. My surgery is scheduled for 5/20/10. 

You will be in my thoughts.  Take a deep breathe.   

hope01

I was diagnosis on 3-30-10.  I have DCIS -Grade 3.  I have had a MRI, Catscan and this week go in for bone scan.  Today, my breast are both very tender has anyone had this issue?  Is this normal or should I be worry about my other breast?  I have been in shock since I was informed, but this week I have been very angry.   Trying to stay positive.....

robinlbe

Hope....stay true to your name

It is all scary at first, but with DCIS we have the best possible diagnosis.  It sounds as if your doctors are being very aggressive and thorough.  I didn't have a CT or bone scan.  My DCIS was grade 3 at the main area and then grade 2 as it spread.  It was all throughout my entire left breast.  I seem to remember my breast being tender last fall, but I don;t know if there was any correlation with the dCIS or not.  My cancer was found on my routine mammogram.  It was done Oct. 1, 2009.  Calcifications showed up and requred a magnified mammo.  That was done about 10 days later.  The cluster was an area of concern, so they tried to do a stereotactic biopsy on Oct 22, but were unable to do so because the area was too shallow.  On Nov. 4, I had a surgical biopsy, and I found out my diagnosis on Nov. 6.  I had a lumpectomy (which was more like half of my breast - literally!!) on Nov 18....and I ended up with a bilateral (double) mastectomy on Jan. 6, 2010,  Because it was caught early - before it was invasive (which is what DCIS is) - my nodes were all clear, and chemo was not needed.

As much as possible, try to relax.  Let other people surround you with love, care , and concern.  People will come out of the woodwork with breast cancer stories - some good, some bad, some completely stupid,  - but let people help you.....

blessings...robin