Second re-excision

Kitchenwitch

I had my 1st re-excision lastI Wednesday and the doc just called to say they didn't get clean margins so I'm going back for a second one. I guess in about a month. The margin she wants to clear is right at the chest wall, so she says a mastectomy is not going to help things - good news I guess since I don't want one... but ... I also don't want to keep on going through this... and I'm also seeing some things online here and there that indicate your risk of local recurrence rises with every re-excision.

Really not the happiest news of the day.

3monstmama

<<hugs>>  I'm so sorry.  That stinks.  Did they tell you how far off the margin was?  Is it significant like no margin at all or just not as big as they want it to be?

Have they set a date for your next surgery?

Kitchenwitch

Thanks... no date yet. I'll be seeing her for post-surgery followup on Thurs and will jjst set a date then. She said the margin was unacceptably small - and it wasn;t clean. She's going to go all the way back to the chest wall which I kinda thought she already did.

mom3band1g

So sorry to hear this...it stinks for sure!  Mine went all the way to the chest wall too and I had a mast.  Hope this will 'fix' it for you and you can move on soon.

Kitchenwitch

thanks... i never would have that for somethingless than 1 cm (even two diff. spots) I'd have to have three surgeries.

3monstmama

Hey Kitchenwitch,  have they changed what they believe to be the size of the DCIS?  When I did the biopsy, they thought they got it "all" but when they did lumpectomy 1.0 on me, they went from saying I was significantly less than 1cm to 1.1 cm.  Also, I'm wondering if its an issue with the grade of your DCIS--mine has always been a 3 which is the worst per my understanding and, well, dare I say it, Martina Navitarlova [sp]'s based on her interviews.  Did your grade change when they did the second lumpectomy and is that perhaps why they are being more picky?

Kitchenwitch

I'll know more Thursday when I get the path report. My grade was between 2 and 3; no one's mentioned any size change. I get the feeling that it's more a matter of lurking microscopic cells that are still showing up in what should be clear margin tissue. I also get the feeling that there's a zero-tolerance policy in this dept toward random tiny cells. Not a bad policy. Can understand why.

 I think that if I hadn't had a mammogram for a couple of years perhaps my breast would have presented with several (or quite a few) tiny 6- or 7-mm different spots of DCIS all in the same area. They would have taken a much larger chunk the first time. I THINK. I don't really know. I'm not a doctor. And sadly, even though they are doctors, they don't seem to know either.

dsj

I am so sorry you have to go back again.  I think the margin thing is the single most confusing issue about the whole DCIS business.  I read a ton of material about margin status, and apparently there is a lot of controversy about what constitutes an acceptable margin.  (Also a lot of different ways in which the tissue is handled and marked and measured for pathology.)  I am doing extra boost radiation beause I had close margins that no one (breast surgeon, oncologist, radiation oncologist plus a tumor board) thought should be re-excised.  So I don't really have a clue at this point. 

sweatyspice

Oh, man.  I know how much you looooove the hospital in question at this point.  REALLY sorry to hear this.  Call Karen or Cynthia and ask them to fax the path report to you if you don't want to wait 'till Thurs. *hugs*

flyingdutchess

This whole reexcision thing sucks.  I had 3 before they got all the margins.  I had to fight the BS on the last one.  She wanted to do a mastectomy which I thought was overkill for DCIS.  The one thing I learned from all this is that although my body has become unpredictable I am the one in charge of how I am medically treated.  I guess I am in charge of how I am psychologically treated as I dropped a toxic friend.  I have to have another breast surgery on May 18 (I set the date around prior vacation plans).  It is not for cancer I had a real crappy tech for an echocardiogram who pressed hard on my incision site last September even though I warned her that I had 3 recent lumpectomies.  When I cried and screamed as it was excruciatingly painful she acted like I was ready for the loony bin.  The next day I had a hematoma in my breast the size of an orange.  My BS has been watching it and following up with ultrasounds and MRIs of my left breast.  Yesterday she told me that there was NO chance that it was cancerous but that she needed to remove it as she was concerned that it would turn to scar tissue making it absolutely impossible to catch an cancer reoccurance with a mammo as the scar tissue would make reading a mammo very difficult to catch CA early.  The surgery is only a 45 minute procedure and will be done under light sedation, but I can't say I am thrilled with the prospect.  

Kitchenwitch

Flyingdutchess - I read your post on another thread about dumping the toxic friend. I said I really really liked your response! So sorry about the careless, clumsy, uncaring tech. I had someone stick my hand about 3 or 4 times trying to get a blood draw for my pre-surgical testing. This is crazy, since my veins are very easy to find.

When I went back for the testing she wasn't there, but I would have immediately asked for someone else. It's sad how we learn from each other and each other's experiences how we deserve to be treated.

I'm taking heart (haha) from your example and hoping that the third one really does get the margins. I mean, chest wall. Where else can she go?? I'm secretly worried that when I go in Thursday she'll say, Oh we've been talking about you and we (the dept) think you shoudl have a mastectomy. Then i'll have a battle on my hands.

diapermaker64

You aren't the only one wondering about recurrence after re-excision.I had two surgeries to get clean margins with grade 3 DCIS and am worried that when they didn't get clean margins on the first try then isn't there a possibility that they cut the duct with the cancer,causing cells to escape to breast tissue?  I do have a lot of scar tissue as well and also worry that they won't be able to read future mamograms with scar tussue in the way.

dsj

diapermaker, even if DCIS cells did get out of the duct during surgery, they lack the capacity to invade other tissue.  As long as it's just DCIS, it is not invasive cancer.   

flyingdutchess

Kitchenwitch , Good luck on lumpectomy #3.  I think what this whole experience has taught me is that I need to be in charge of my treatment.  Ultimately it is MY body, not the surgeons,  So listen to various doctors advice and to your own gut feeling.  I have read many people on this forum stating they were sorry that they listened to someone else.  I have never read someone say they are sorry that they listened to their heart.  With DCIS we  have the luxury of more options than those who have stage III or have.  And we have time to think things over.