40 yr old - just dx with extensive DCIS & reeling from the news

decemberbear

Glad to have found this site - but scared out of my mind.  Don't know all there is to know yet about my dx.  Went for mammo about 3 weeks ago - got called back for magnified mammo & then underwent stereotactic biospy.  Was orginally told that it was DCIS in 3 areas of my left breast.  Went for MRI last week & they found extensive DCIS with very swollen lymph node.  (Only good news was right breast was clear).  Have scheduled a mastectomy (bi-lateral - more for cosmetic reasons on the right) on August 4 (two weeks from today).  I have a 9 year old daughter & a 6 year old son & I'm finding it so hard not to seem depressed (or cry) around them.

 Am SO scared they will find micro invasion and/or spread to the lymph nodes due to the "extensive" nature of the DCIS & the swollen lymph node.  How do you get through this time period?  How do you stay positive?  I am scared my final path will show Stage I or Stage II cancer.

BarbaraA

December - this is the absolute most terrifying time so try to take a very deep breath and think calming thoughts. Unfortunately, you can't hurry up the process. A couple thing to note: DCIS is a stage 0 cancer. If you have read some of the threads on these boards you will see that there are many women with stage 0-4 cancer beating this disease. Another is that as a new member, you are limited to 5 posts a day until you reach a certain number of posts but if you have a question, feel free to reach out to anyone and send a private message (you can do as many of these as you like). To do that, click on the member name then it will open their profile and on the right is a link that says send a private message.

Use the two weeks from now until your surgery to gather information. You will find this site to be full of excellent information. Research surgery before and after so you will know what to expect. Also research chemotherapy, hormone therapy and radiation so you will be informed about all the different treatment options. If you have questions, just PM any one of us and we will be happy to help or find someone who knows the answer.

Gentle (((HUGS))))) to you and prayers are coming for you and your family.

chrissyb

Hi Decemberbear, so sorry to hear that you have joined us, but so glad you did.  You have found the best place to learn about your disease and the best place to talk with women who reeaallyy understand where you are coming from.  My own little piece of advice at this point is please just take one day at a time and deal with right now.  No-one knows what will happen tomorrow or any of the tomorrows to come, and if you project you only cause yourself fear and anxiety neither of which is good for you.  I know its hard but it really is the best way to get through the next few weeks and months.  You will begin to have a little less fear when you have a full treatment plan and that will come once all the pathology results are in.  I hope this helps you a little.  Love n hugs. chrissyb

sweatyspice

Decemberbear, I'm not a believer in "staying positive."  I think it's better to allow yourself to feel what you feel, and not decide that any of your feelings are "wrong."  I think your reaction is normal.

How do you get through it?  Some of us eat less, some eat more, some don't cry, some cry a lot, some crawl under the covers and sleep, some can't sleep and take pills to help with the anxiety. 

This part, the waiting for test results and feeling like you've been hit by a truck, is really difficult.  But the days will pass and things will become more clear.

In the meantime, you can research your surgery so you can be best prepared for your recovery - what to buy, how to prepare the house, etc. etc. etc.  Best of luck!

Lovegolf

I had lumpectomy 4/17/09 and then bilat mx 5/1/09.  i can tell you the waiting is the worst part.  Breathe...that this time to do things that you want.  Be good to yourself.  You will make it.  Surgery will leave you sore and tired for awhile but it is doable.  It really did not hurt as much as thought it would.  I was only taking pain meds at night to sleep after few day.  I am glad to answer any question you have.  You will find you are stronger than you ever knew.

CrunchyPoodleMama

Ugh, so many of us know the feeling all too well!! It's true that this initial waiting is definitely the worst part... right now you're flailing and imagining the worst which is only natural... once you have your final path you'll be able to rest much more easily. In the meantime, take comfort knowing that you're acting as aggressively as possible on a cancer that is not life-threatening.

BTW, it's VERY possible to have extensive DCIS with no invasive component... I had a 9cm-long area of DCIS removed with my lumpectomy, still didn't have clear margins, so had more removed, all with a ton of DCIS, but no micro-invasions... and it wouldn't have been the end of the world if I had... you are going to be fine!!

flash

Sorry you're joining the club no one wants to join.  Like everyone said, take some breaths.  If you need, don't feel badly about asking for something for the anxiety.  This is exactly what the meds were designed to be used to help.  You won't become a druggy and it may help your kids have their "normal" mom around.  Kids are incredibly perceptive and resilient.  There are several threads you can search on how much or little to tell them.  Right now, normalcy is the best and take whatever you need to be there.

Cancer is very different from the perception on tv and the media.  things are constantly changing (even in the time I've been here it's changed) and treatments are not anythign like the boogeyman you have in your mind.  You have very good stats on your side for things being good.  DCIS, has a tendency to be slow growing so take heart.  Odds are good for you.  Even if its not, NED (no evidence of disease) is a very friendly fellow and would love to visit you and dance with you.  You are doing the right things to "dance with NED."  It is scary but you'll get through it, one day at a time. Take the time to hug your kids and learn what you need.  good luck on your surgery.

3monstmama

Take a deep breathe---feeling scared is normal. I also have kids--3 of them actually.  But as someone has already noted, at this point, what you know you have is DCIS and that won't kill you. First and foremost, you need to keep reminding your self of that.  Second if you need to cry, then cry.  Its okay--thats normal too.

And one more thing, take time now to inform yourself before you make final decisions. There is a recent NYT article about DCIS that you should probably read.  It is not meant to minimize your diagnois but to help you understand your situation more.

You say you have already scheduled surgery---have you had a second opinion?  I know when I was diagnoised, after the first meeting with a breast surgeon, I thought I knew exactly what I was doing.  But after a couple of days I realized that it was not so clear and that i had questions--lots of questions.  On advice of a doctor friend, I went for a second opinion and I also met with 2 plastic surgeons AND the oncologist AND the radiation oncologist.  After that, I really understood what was going on.  I went from thinking I had little choice but a mastectomy to a lumpectomy [1 do-over but good results].  I have to say, the person who helped me the most was the first plastic surgeon I spoke to. When I realized what a mastectomy entailed and how much it would impact my relationship with my kids for the next 6 months at least, I decided it was better to go with a lumpectomy and get over my fear of Zaps aka radiation.  Oh and I also learned that a mastectomy does NOT mean you automatically skip Zaps.  This is what I mean by educating before making a decision.

I guess what I'm saying is as much as you want it to be over so you can go back to life as normal, I think you should take a deep breath before you do anything.  Even if GFB, your ultimate diagnois is more than DCIS, remember that cancer treatment has changed a lot.  Odds are still in your favor.

CTMOM1234

You are in the worst point in the process right now, the waiting and gathering info. phase!  It is a shock to get the news from a routine mammo.(I'm also in my 40s), but hopefully you can find comfort in how early it was found and believe all of us who were once in your same place that you'll be OK.

Like FLASH so effectively wrote a few posts us, cancer isn't like we see and hear on TV. Nor is even the concept of a micro-invasion. My treatment was exactly the same as pure DCIS, even though micro-invasion was found in final lumpectomy pathology report.

NSWTD

I am sorry you had to join too, but there are great people on these boards willing to answer any question imaginable and offer incredible support.     I also was dx with DCIS, only rt breast, but extensive and I am small breasted.  The recommended treatment was mast.   I cried so long I didn't know I could still produce tears.  Then, I felt like being sick to my stomach.   Then, as I had more appts with docs seeking second opinions and meeting with BC docs and PS docs....it all came together. I was amazing calm as I walked to surgery.      It was not so bad, not nearly the pain I thought.   I had a SIEA flap (similar to DIEP) as I wanted immediate reconstruction and did not want any foreign object in my body.     I could not be happier with my outcome. 

In days to come you will find the right treatment for you.  Best of luck to you.    

decemberbear

Thank you all so much for your replies.  I cannot tell you how comforting it is to have this support!  I actually wound up having an anxiety attack yesterday with vertigo, nausea & vomitting.  I wound up in the ER cause I was so dehydrated.  It's so funny....I'm a fairly intelligent woman - I've gathered a lot of information & know that whatever I'm facing I can handle it...but my body just doesn't want to listen to reason.  I've always been like this...I react much for physically than I do mentally.  Anyway - feeling much better today.  I think I'm just going to stay on some meds for the week to keep myself in a more calm place.

 My husband & I are meeting with the oncologist today...so hopefully I'll gather some more information to guide me.  Also - my BI MAST has been moved up to a week from today.  I feel pretty confident about my decision.  Funny thing is - I'm not nearly afraid of the surgery as I am about the confirmation of the dx after (whether it has spread to the nodes & what my stage is.)  I actually went through plastic surgery in '07 with a tummy tuck & a breast lift & reduction.  In some ways I screwed myself as I am now not a candidate for a trans flap & I have to go with implants.  But in other ways...I feel I'm a little more prepared for recovery from the surgery & what's involved.

 Thanks again everyone...I will post updates as they come.