Anyone with experience with multi-focal DCIS?

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Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 4/2/2005 9:46 AM (GMT -7)   
Preliminary report suggests that I have two areas of DCIS along with the invasive carcinoma part. I've been doing a ton of reading about it, but I'm wondering if anyone on this board has had experience with DCIS? Since it is no easily detectable by mammo, I'm seriously considering a mast. at this point.

What really makes me furious is that 4 years ago I had discharge sent to pathology and it had all the signs of being DCIS, yet no one did anything about that. They were more concerned that the benign condition, papilloma, might show up. 'xcuse me? I feel like whacking myself for not demanding more followup and second opinions etc.

Anyway, anything at all would be great. I'm gathering all the information I can for my trip to see the surgeon and get the full path. results.

L&H,
Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


ardee
Veteran Member


Date Joined Sep 2003
Total Posts : 854
   Posted 4/2/2005 10:51 AM (GMT -7)   
Hi Laure',

I had multifocal DCIS. My surgeon, a breast specialist, said it didn't matter whether I had a lumpectomy or a mastectomy, because they were close to each other and made no difference in my outcome. Afterward, my radiologist was irritated with me for having had a lumpectomy. He couldn't believe that the surgeon gave me a choice. But so far, so good.

The women on this board can tell you horror stories about inept medical professionals. They certainly aren't confined to one geographical area. Hope you trust the people you're dealing with right now. It really makes a difference.

Good luck. I'm sending prayers your way.

Hugs,
Rita


Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 4/2/2005 11:11 AM (GMT -7)   
Thanks for your response, Rita. I'm definitely preparing myself for a mastectomy. Bilateral, at that. I have watched two of my dear friends lose their battle, one dx with stage 3 10/21 positive nodes suffer for 3 years, and another with metastatic disease after 5 years clear (during the time my DH had his second bout with a cancer at age 34), so I'm am going to fight all I can to make this be the best possible outcome for me. I will be speaking to my surgeon on Thursday and will find out his take on all of this and whether he took out the whole duct or not (which seems to be a great part of the treatment/prognostic debate). Since we're in the middle of the move, I suppose I have an opportunity here to get second opinions after we move.

What stage in this dreadful disease are you at? I love seeing your name each time (my grandmother's name was Rita, and a dear friend shares your name as well), and your positive notes! Take care,

L&H,
Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 4/2/2005 2:39 PM (GMT -7)   
Well I just wrote a big long two dollars worth history to say I wish I had gone the bilateral route and never had recontruction. I had a tram flap done only because I did not want to feel lopsided. Somehow I hit some key that erased it all, so I guess that is just as well. My story is not the norm and no sense scaring anyone. The breast cancer was not the problem, nor was the new breast. Let's just say, make your decision and feel good about it. It is easier to match two reconstructions if you want to have that done. Without reconstruction a bilateral will not leave you feeling lopsided. Big hugs making your decision. MK


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 4/2/2005 3:18 PM (GMT -7)   
Hi Laure! I had multifocal and multicentric DCIS with microinvasions.  Multifocal means multiple lesions in the same quadrant of the breast while multicentric means lesions in more than one quadrant.  My cancer was not visible on mammo or u/s. Three lesions were found on an MRI, which turned out to be the DCIS. My surgeon recommended a mastectomy due to the multicentric issue. If the lesions were confined to a single quadrant, she said we could consider a lumpectomy with radiation.  She also felt there was a good chance there would be additional DCIS scattered throughout the breast, which would be likely to result in a recurrence if I chose a partial mastectomy.  Since I was very high risk anyway (mother and sister had bc) I chose a bilateral mastectomy with reconstruction (saline implants). I needed reconstruction on the mastectomy, so I felt it was worth the peace of mind to do the prophylactic mastectomy at the same time and the reconstruction would be symetrical. The final pathology revealed 5 additional areas of DCIS in the cancer breast and several areas of DCIS and LCIS on the prophylactic side! For me, this was obviously the right choice. If you have any specific questions, I would be happy to help. Good luck! Frayda

Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 4/5/2005 6:28 AM (GMT -7)   
Thanks, Frayda and MK and Rita,

I'll be getting more results on Thursday, moving Friday and will see the onco on Tuesday next week. Frayda, I will definitely love to get more information as my questions arise, so thank you for your offer!!! It is interesting to note that so much of the DCIS doesn't show up on mammos/us. And it seems that even the MRI didn't catch all of your DCIS. I'm going to go the safest way, even if it is a bilateral. Anyway, thanks again!!!!!

:-)
Laure'
The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


ardee
Veteran Member


Date Joined Sep 2003
Total Posts : 854
   Posted 4/5/2005 11:48 AM (GMT -7)   
Hi Laure',

I was stage 2b, no node involvement. Finished all treatments except Tamoxifen in March of last year. And I'm switching to Arimidex soon. Can't take another summer burning up!

Thank you for the kind words. I really needed them this week. You're in my prayers.

L&H,
Rita


Frayda
Regular Member


Date Joined Aug 2003
Total Posts : 248
   Posted 4/5/2005 1:46 PM (GMT -7)   
Laure, good luck with your move! You are coming up to New Jersey, right? I live in Edison which is north central NJ. Welcome to the "neighborhood"! Hope all goes well! Hugs, Frayda

Lmmackey
Regular Member


Date Joined Mar 2005
Total Posts : 316
   Posted 4/10/2005 7:24 AM (GMT -7)   

Hi ladies,

I'm now in Lafayette.  Turns out I have multifocal DCIS which is extensive (from nipple to antinipple) Who comes up with these terms, anyway?  The surgeon said it was all the way to the back of the duct, plus probably in other locations as well.  He does recommend a simple mast. and so I'll opt for bilateral.  Don't know about reconstruction - hard decision! 

Anyway, I do appreciate all of the support!  Have a wonderful day!

L&H,

Laure'


The finger of God touches your life when you make a friend.
----Mary Dawson Hughes---


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 4/10/2005 7:36 PM (GMT -7)   
Hi Laure, I'm wishing all the best for you. I had a recurrence that was multifocal with a 5c.m. tumor. I am now stage III a or b or whatever. But, I am now almost 5 years out from the recurrence. I had the mastectomy when I had the recurrence. To make a very long story short, I can't have reconstruction. I wish I could. This is due to radiation damage from double radiation. I agree with MK though. With one breast, you always have to wear a prothesis to be evened up. Something to think about as if you already didn't have enough. We are there for you. Hugs, DiVanDyke
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