Just Diagnosed - Double Mastectomy Scheduled

Herky-Well, so sorry you are going through this. Good for you for getting mammograms even before age 40!!! You've gotten great results already through your biopsy...with DCIS and negative IM node. I'm not real familiar with DCIS, because mine was IDC. You WILL feel much better when you know exactly what you are dealing with.

My SNB showed 2 sentinel nodes. One was axillary and one was an IM node. Both were removed and were positive. This is VERY rare for an IM node to be a sentinel node. Probably 99% of the time, if there is any spread, it goes to the axillary node first. So, yes as you say "like, never, right".

I also chose bilateral mx, though one was delayed and was done during my recent DIEP reconstruction.

Hopefully you're SNB is soon, and you will get some answers, and then you can research and get a plan in place. This board is a great resource, so please feel free to continue asking questions. I'm sure some ladies with a DCIS diagnosis will be along soon to add some insight to your situation.

Take a deep breath, and know you are not alone here, and among friends.

Hugs to you,

Joni 

Herky-- I had a bilateral mx in June 2008 for extensive high grade DCIS.No invasion turned up (I had 3 different pathologists at different hospitals examine the specimens).  I chose to do a prophy on the left because the MRI looked suspicious and I'm a worrier by nature, plus I had some blood issues that made taking tamoxifen risky for me.  One thing that made the surgery a bit easier for me was to do a nipple sparing mx on the prophy side (this was discussed by my PS and BS-- the BS said no to the procedure for the cancer side- -- and the PS did a nipple sharing graft to make my new nipple, followed by the areola tattoo)-- Just keeping the nipple on the healthy breast made the prophy side still look "natural" and emotionally this helped a lot. I don't know what your plans are for reconstruction (or not), since you're at the start of all this, but be sure to discuss all your options with both your BS and PS in agreement.

 My daughter was 2 1/2 at the time-- she has no memory of my surgeries and recovery and when I've undressed in front of her she's never commented on my scars--  my breasts look fairly real now and this is all she really knows anyway.  At the time my sister came to help so my husband could take care of me and my daughter's routine wasn't disrupted. I think we just said "mommy has some booboos to take care of," and I needed to be careful about her getting too close, or lifting her for a while after the surgery (that's hard with little ones!).  I didn't want to scare her (I was scared enough) and I did all my crying in the car. I think if she were older she would have been more aware and worried.  

Hang in there-- this is the hardest part-- I think even tougher than the surgery-- just waiting and not knowing what to expect. The women on this board are amazing. I discovered it after my surgery, which I regret, but since then it's been very useful and emotionally supportive. And don't beat yourself up about not finding the cancer sooner. I had a clean mammogram the year before, but I wondered, "did I wait long enough after I stopped nursing for a mammogram," or should I have insisted on an MRI since I had dense breasts? Who knows if it would have shown up sooner-- but you found it now and need to get rid of it. Be kind to yourself.

--Julie

It's good to have a plan for the drains - especially in the shower.  My hospital gave out little pouches that hang around your neck and attach to a strap with velcro.  Up to 2 drains fit in each pouch, and it worked great for showering.  I know some people tie something around their waist to hold up the drains.  A nurse friend of mine gave her patients name tag holders (the kind that go around your neck and hang fairly low and the name tag clips on) to string their drains through while showering.

I had my mastectomy in October, and the recovery wasn't bad at all.  I was too naive  at that point to realize that there was any significant likelihood that I might have invasive cancer in with the DCIS (I guess ignorance was bliss in that situation, as I am a worrier).  Thankfully, my pathology came back as all DCIS.

Good luck with your surgery!  Keep us posted.

Heidi

Hi Ladies.  I haven't been on this board in months...I was dgxd via mammogram December 2009, needle biopsy confirmed 12/24/2009.  I had a double mx on January 25, 2010.  Cancer Free One Year!!!!  Woo Hoo!!!!  Just here to say that it will get better.  I was really worried also before the surgery:  MRI showed 3 hot spots, widespread right breast.  Post surgery, my path slides showed ALL DCIS in 2 quadrants (grade 2 and 3).  I chose to do both sides with fm hx and glad I did....other side had precancerous cells!  I am so grateful l did both sides! And although it took some time, I can say life will get back to normal.  I know it doesn't seem like it now, but this is just a bump in your life.  DCIS is CURABLE and your life is not in danger since you are addressing the issue....hard not to worry while your going through it, but with time, you too will see that your future is bright.  My biggest advice is to talk to your surgeon about physical therapy.  No one recommended it to me and it took forever to heal.  My PT said this is especially important in young women since we heal quickly.  I was 43.  Now after 24 sessions of PT, reconstructive surgery (implants), and a year to heal, I can honestly say I feel BETTER than before I was diagnosed.   Good luck and God Bless!!!

Hi Herky,

I am sorry to hear about this latest round of news. There's nothing like adding more uncertainty to the picture! Hopefully they are just being extra cautious and that the liver lesions will be benign, and you will wind up with only DCIS!

For what it's worth, I am another story of someone who had extensive high grade DCIS (9.5cm) that turned out to be pure DCIS after final pathology, and grade 2/3 instead of all grade 3. I was of course worried about invasion and the waiting between my Oct 6 diagnosis and my Nov 19 path results was very anxiety-filled! As others have said, it was actually the worst part.

I am now 10.5 weeks post mastectomy, done with fills, and am awaiting my exchange surgery. Life has actually gone pretty much back to normal and I don't think much about cancer -- or maybe I should say, it doesn't strike the same existential fear in me that it did at first. It very much feels like a "bump in the road" as you say. Hopefully it will turn out similarly for you! 

Sounds like you are getting a very thorough workup and that is a good thing.  Really good thing.  I looked for the same stats you did regarding how often pure in situ cancer turns up to have an invasive component at mastectomy.  I found MD Anderson did a study on that and found it happened 6% of the time.  So odds are good for you not having anything worse.  Hang in there and take it as easy as possible.

That a girl  Way to go!

That is great news. Take it easy. I really hit the wall about 3 weeks out. I also found 3:30pm naps to be great.....now I have replaced with 3:30pm expresso