Just Diagnosed with DCIS...

NotAgain2015

Hi Everyone...

I wish we all didn't have to meet this way, but thank goodness you are here and sharing your experience.  I was diagnosed this week with DCIS but I won't have the pathology results until Monday when I meet with the surgeon again.  I had SNB that came back with ADH and on 4/23 had an excisional biopsy that came back DCIS.  What I've heard so far is that it is small, .6 cm and that the nurse says I won't need further surgery, just radiation.  The doctor (away at a conf) called the next day and said he has to review the pathology to see how wide the clear margins are, was talking rads/tamoxifen.

My head is spinning, I'm reading as much as I can, I find myself withdrawing from everyone - not wanting to share the news - and I know I need to snap out of it.  My husband's reaction is to also distance himself - like he doesn't know what to say or do - and it just all feels so wierd.  I feel so alone. Partly self-inflicted.

Two of my sisters have had breast cancer.  One surviving 15 years post, one not.  My dearest sister that lost her battle initially had lumpectomy and radiation.  I need to find out exactly what her initial cancer was though.  Because of this, I'm worried that lumpectomy/rads might not be enough.  It's my left breast, so I'm concerned about rads and my heart and lungs.  If I do radiation and have cancer again down the road, reconstruction for that breast gets messier.  Then I think I should consider PBM at this stage - maybe I can be lucky enough to have the NSM kind with immediate reconstruction - and end up long term with even-looking breasts.  The thought of being maimed like this and how I feel about it emotionally - I want to be strong and say oh this is nothing - DCIS has such a high success/cure rate - but I am just devastated.  Then I feel guilty because I know the diagnosis could have been so much worse.

I know I just need to take a deep breath.  Wondered if you had any words of wisdom (good questions) for my next, post-excisional biopsy meeting with my surgeon.  I know this is just the beginning.  Part of me wants to go by myself this first time, but I know my husband wants to go. I need to work on not pushing him away. 

sweatyspice

Find out how large your margins were, what grade the DCIS was, whether there was comedonecrosis, your ER/PR status....

Have you had a MRI, would you want to have one? 

Given your family history would you want to have a BRCA (genetic) test? 

ADH in the SNB seems strange to me, but maybe that's just because I haven't heard of it before.  I'd ask for a thorough explanation of what that means.

And a long discussion about recurrence risk with the different treatment choices. 

Remember that this is not a life threatening situation and you have time to think about what you want to do, research, ask questions, breathe.  The solution that's right for you will eventually be clear.  I'm not saying you'll completely escape second-guessing yourself, but at least for me there was one choice which made me more comfortable than the alternatives - and no matter how much I sometimes wish I'd tried one of the alternatives, I know why I didn't and I'm OK with that.

Mostly, try not to panic and remember to keep breathing. 

NotAgain2015

Thanks for the advice.  I had a spot of micro calcifications on my diagnostic mammogram, three tiny grains of sand and the stereotactic needle biopsy removed it and it turned out to be ADH.  I hear what you are saying, I should have as many tests as I can to help me reach my decision.  I'm sure it will start to get clearer.  I like my surgeon alot, I'm hoping I'll feel better after that next meeting.  I also plan to get a 2nd pathology opinion at Duke. 

What did you end up choosing to do?

sweatyspice

I see.  SNB as stereotactic needle biopsy.  I assumed it meant sentinel node biopsy, which I thought was an odd place for ADH to turn up, but who knows, maybe it can!   LOL

Anyway, ADH in a stereotactic needle biopsy makes a LOT more sense to me.

I had multicentric DCIS, standard of care was mastectomy.  Some surgeons were willing to try a double lumpectomy.  At the end of a VERY long road, I ended up doing a very big lumpectomy (both areas of DCIS were removed in one big piece) combined with a bilateral reduction and lift. 

It was only possible due to the fact that, at the time, I had large breasts and the 2 areas just happened to be located exactly where you'd remove tissue anyway if you were going to do a reduction/lift.

Some days I think I should have gone for a mastectomy, some days I think I should have tried a double lumpectomy, but mostly I accept that I made the best decision I could. 

(Just be aware that usually people use SNB to mean sentinel node biopsy.  I didn't have one done.) 

Anonymous

Sorry to hear about your diagnosis but glad you found this site.  I was diagnosed with DCIS in December and I know how overwhelming it can be to figure everything out.  The good thing about DCIS, though, is you have time to do it.  

I was afraid of recurrence so opted for a bilateral skin-saving, nipple-saving mastectomy.  I also had a sentinel node biopsy done at the same time.  A week later I had a second surgery to place the tissue expanders.  (Most PS will do this the same time as MX but mine preferred to wait a week.  She said she got better results that way.)  I am now going through the expansion process and should get my permanent implants in about 2 months.

If you decide to go with MX and you are a candidate for the NSM I would definitely recommend it.  I have been very happy with the results.  Definitely find a surgeon who has a LOT of experience with this type of surgery, though- both your breast surgeon and plastic surgeon.  My surgeon did the excisions below the fold of the breast and when I am all done they say no one will even be able to tell I had a MX which is amazing.

Whichever way you go I guarantee you will find someone on here who can guide you and offer advice and support.  Good luck! 

NotAgain2015

Hi Kate,

Thanks for the reply.  It's so good to hear from someone with such great results.  The idea of a great result, no radiation and no tamox - you must be so relieved!

I met with my surgeon yesterday and I found out I'm not a candidate for nipple sparing   I was really hoping to be eligible for that.  I guess my tumor was too close to the nipple itself.  I'm starting in on gathering my family bc history records and will get genetic testing for the marker.  Now I've swung the other way.  Will I be brave enough to consider bilat mx?  Now what I wish I could find is a support group in my area of NC.  I think it would be helpful to meet others in the same boat in person.  I guess I have about 4-6 weeks before I start radiation to try and get this all figured out.

Anonymous

kickon2it-  I would definitely recommend a support group, but this site has helped me tremendously, especially when you're not feeling well enough to get dressed and drive to a support group.  Talk to your surgeon about all support services and take advantage of everything.  Most cancer centers and hospitals offer all kinds of amazing services that are free.  Mine had free counseling, facials, hair styling, wig styling (for women who had chemo), social workers, nutritionalist and more.  Sometimes if you don't know to ask  you aren't aware that all of that is available but more and more centers are offering these kinds of things.  Check out the American Cancer Society website, too.  They have great links on there that can help you find support groups I think.  Good luck with your treatment whichever way you go.  Sorry you are not able to have the NSM but they are able to do amazing things creating new nipples and I don't have any sensation in my anyway so there's probably not much difference.  Please keep us posted.  Let me know if you have any questions or just need someone to talk to.  You can post on here or just PM me.  Good luck again!

healthymom

Hi Kickon2it, I am glad this site is here also.  My BS told me about the website.  I can totally relate to your emotions and concerns on sharing your news.  For me last summer it was very similar to what you describe.  I think it is natural to not want to share the news if you are generally a positive person.  It was hard to think that for the very first time something was really wrong with me.  I also wanted to manage who I shared the news with since I trust some more than others and some more than others are good at respecting one's privacy.  My husband also did the distance thing.  That was very hard on me.  It took me weeks to break him down and get him to talk.  He was scared and also felt limited as I did not want to tell people I had DCIS right away.  Once I healed and got back on my feet I felt more comfortable with sharing because by then I had already "been through " it.  Does that make sense? 

I know time is on your side, but for me I wanted "it" out and wanted to move on with my life.  I went with my gut on most of my decisions after researching and talking with the BS.  I did have a lumpectomy and radiation (5 day brachytherapy, tx twice/day).  I am on Tamoxifen and the only real side effects I have had are lack of menses and thirst. 

Get some rest and try to relax or pray or whatever clears your mind.  Hugs to you lady!!! 

NotAgain2015

Kate and Healthymom,

It helps so much to read your responses.  Oh what a difference almost a week makes.  During that time I've swung from thinking double mastectomy back to rads/tamox.  (I'm sure I'll keep swinging until I finally decide.)  I met with a geneticist today who put my family history concerns to rest.  Two of my sisters have had BC but she says it is still 'random'.  I am getting tested for the BRCA genes but my chances are less than 5% for that - and it will take 2-3 weeks to hear back on that.  I met with my surgeon again this week, that consult always seems to help, but I found out I couldn't do the NSM mastectomy which was a disappointment.  Is it possible to spare the aerola but not the nipple?  I'll meet with a plastic surgeon at some point also.

I also found out a good friend in another state is in the same boat with DCIS and in the last week of her radiation treatments.  We talked for an hour.  Sharing helps so much!

I guess now I'm on my fact finding mission.  My husband and I finally were able to talk it through.  Just like you said Healthymom, he was just as scared too.  He met with the surgeon with me on Monday and that helped us both tremendously.

Healthymom, you are lucky you got to do the brachy treatments - just 5 days -- I like that idea.  Did you have any adverse side effects from the radiation - they inserted a baloon right? 

I'm still trying to throw off the 'weight' of it all and try to resume my normal life for the next few weeks interspersed with doctor appts.  I still feel pretty much stuck, but I'm working on it.