Diagnosed w/DCIS yesterday

Hi Robyn,

My life has been complicated these past months & sorry I haven't kept in touch. I have had you in my heart a lot and can't believe everything you have been through. How are you feeling about your upcoming surgery? Sept 23rd? I had mine in June & implants this Oct. I know I just read this, (brain fog) so forgive me, but where did you decide to have your surgery done and how do you feel about your dr.s? Did you decide to do one side or two? With your diagnosis, was nipple/skin sparring an option? Have you seen the picture forum? It has been a huge encouragement to me going through MX & Recon. The end results look amazing and it is nice to see the progression from beginning to end. It has been good for me to see what to expect, what's normal & normal/weird and that most ladies look fabulous at the end. Oh yeah, they'll re-sign your breast. I had thought about drawing a big smiley faces on mine with permanent marker, but forgot. Good they do it though to mark the right spot/side; I actually heard of a man who went in for something totally different and came out with a mastectomy on a breast he didn't have cancer in. Now that sucks! I say sign it wide and loud! You are in my heart & thinking about you with all those students & a class to hold down. My daughters' classes, 4th & 5th grade, all drew me pictures and notes before my surgery. At first I didn't want anyone to know, but found a surprising support of love & kindness. Wishing that for all of you.

robyn,

I understand your concern about chemo.  However, has your oncologist explained that whether or not you need chemo has nothing to do with the type of surgery you have (mastectomy vs. lumpectomy)?  Even if the surgeon is successful at removing all the cancer in your breast (which is the objective of any surgery, lumpectomy or mastectomy), that doesn't mean that chemo might not be necessary. 

Chemo is not given to treat cancer in the breast.  Chemo is given when there is a risk that some cancer cells may have already escaped the breast prior to surgery.  The role of chemo is to track down those cancer cells wherever they might be in your body, and kill them off.  For anyone with invasive cancer (this does not apply to those with pure DCIS), even with negative nodes there is a risk that some cancer cells may have escaped, either undetected through the nodes or through the bloodstream.  The larger the amount of invasive cancer (i.e. the greater the number of cancer cells in the body), the more aggressive the invasive cancer (grade, hormone status), the greater the risk.  This is why chemo is given to women who are node-negative if they have larger tumors (sometimes 1cm or greater, almost always 2cm or greater) or if they have smaller tumors that are aggressive (triple negative or HER2+). 

So if someone needs chemo, they need chemo whether they have a lumpectomy or a mastectomy, and they need chemo whether the surgical margins are great or whether the surgical margins are small. 

Radiation, on the other hand, is given to address any rogue cancer cells that might be left in the breast or nodes.  So if you have clear margins after your surgery and no nodal involvement, then hopefully you will be able to avoid needing radiation.

Enjoy your time at the beach!

Hi everyone, I posted before when I was waiting for my biopsy. Well I'm not waiting anymore. Got the call yesterday and the doctor said that I have DCIS. Having surgery next week. She said she will remove the small lump that I have long with my calcifications. The area that she will be removing is the size of a golf ball. She said hihg grade, radiation but I didn't hear her. I was shocked, cried all night, I'm scared, terrified.... I'm 30 with two little kids. I feel so depressed, is this normal? How did all of you are getting thru this? She said that she needs to biopsy my lumph node , is that standard procedure or is there something she is not telling me? I don't know what to think, the fear is killing me...help

Zlota

So sorry to hear of your dx. I can only share my very brief experience. I got my biopsy results on 8-25-10 and consulted with a surgical oncologist that specializes in breast cancer on 8-30-10. I was told I have DCIS with estrogen positive receptors, stage "0" which means there was no evidence that it had spread to surrounding tissue beyond the duct. It appeared small - 17mm and localized to the duct. I had a lumpectomy on 9-10-10, just a week ago. In addiction to removing the tumor, my surgeon also removed the sentinal lymph node (1 or 2, not sure). I see her tommorrow for follow up and pathology report. I expect to do radiation and follow up with tomoxifen for 5 years. Not really looking forward to that, but it's not so bad when looking at the big picture. I also had BRCA testing done and am waiting on those results. I am almost 44 years old and have a history of breast and ovarian cancer in my family - most were dx. in their 50s and have lived 20 plus years with no recurrence.

 THis is a scary dx., but as the previous post stated, you will feel better once you get more information, consult with your doctor and get a plan. It may feel like a monster in your body, but it is not, it is a disease that is treatable! I am just amazed at how much is known about this illness and how many different ways there are to treat it. So far I have felt very fortunate to have good insurance, a good medical team and that my disease was caught early. Even if the news I get tomorrow is not as good as I hope, all I can do is take the next step and stay positive. I returned to work about 5 days after my surgery. I'm soar, but the pain was never overwhelming and you will get all the pain meds you need, as well as something to help you sleep if you need it. Write down you questions for your doctor. Find a surgeon and oncology team that specialized in breast cancers. The information provided on this site is pretty good and your doctor will probably also give you a lot info. You have time to make your decisions. If you are married or involved with anyone, ask them to go to your appointment with you - or take a friend - sometimes two sets of ears are better than one. Don't assume the worst - my aunt was dx. with stage 3 breast cancer about 6 months ago, is undergoing alot of tretment, but responding well!! So enjoy your kids and live your life - you'll deal with this! There is alot of hope! Enough advice from me....Good Luck, let us know how it goes!

 Jennifer

Robyn, I was thinking about my previous post and wanted to clarify something I said. In determining whether or not chemo is necessary, it's the size of the invasive portion of the tumor that is relevant, not the size of the whole area of cancer.  So the fact that you have a 5cm area of cancer doesn't mean that you will definitely need chemo; it's all a question of how much of the 5cm area is invasive cancer vs. DCIS. 

I notice too that your signature line states ILC.  Is this now your diagnosis or is it still tubular carcinoma (which is a form of IDC)?  If it's tubular, then because this is usually a non-aggressive form of cancer, it's less likely that chemo will be required, unless your area of invasive cancer is quite large.

I hope the beach has been great (I'm envious!).

robyn, if your breast surgeon is assuming that you won't need chemo after your bilateral, it's not because you are having the bilateral.  If he's making that assumption, it's because of the amount of invasive cancer that he's found so far (a small enough amount that normally chemo wouldn't be warranted), and the fact that it isn't a very aggressive cancer.  These factors would hold true whatever surgery you have (lumpectomy or mastectomy).

You're right though that until the pathology report is available after your surgery, everything is just an assumption.  Hopefully no more invasive cancer will be found during your next surgery; if so, then it sounds as though chemo probably won't be necessary, which would be great news.  Of course it's your oncologist - not your BS - who ultimately will make this recommendation.  But most breast surgeons have a pretty good idea of what to expect so hopefully your breast surgeon's assumption turns out to be correct.

Hello to all, my lumpectomy was  cancelled on monday cause just before putting me dowm they did another mammo and found more calcifications which are very far from the "original ones' so they biopsied it turned out to be more DCIS (still high grade) and looking at mx.

God this is horrible, I'm glad they found it but I just wanted to get this stuff out and have my final path report. I'm so scared that there will be a lot of invasive cancer. Right now I met with a plastic surgeon today and i WILL BE HAVING AN EXPANDER PUT IN AFTER MY MX, that is so scary,

Only a week ago I was hoping for b9 biopsy results and since last tuesday I had 3 biopsies my left boob is one big bruise, and then they going to cut it off....

How do I deal with all this?

Can't take xanax anymore.