Confused can anyone help DCIS ?

just had my 2nd operation as margins weren’t clear.after the first … No true cancer but high grade DCIS ?

asked him what happen if these margins are not clear and he said they continue, the M word was mentioned !!!

cant understand if there’s no true cancer why I may need a mastectomy (he did say very unlikely but it’s in my head now )

anyone had anything similar ?

thanks 

Hi Annie, my original diagnosis was high grade DCIS. High grade DCIS go on to become invasive so they have to make sure they get it all out. I was told if I didn’t have clear margins (at least 1mm) I would need a mastectomy, which no one wants to hear but if it saves your life it is worth it xxxxx

Hi Annie I’m in the exact same situation, I had my 2nd op to remove dcis today. I had grade 3 IDC which was removed 4 weeks ago and close to the margin they found dcis. I haven’t actually asked what happens if no clear margins this time but I’m guessing mastectomy. Hope we both get the results we want x

Hi Annie, 

 

I think it must have done, it’s the only explanation I can think of. Just as well I/they found the DCIS when they biopsied and did the WLE for that otherwise the IDC (grade 3 HER+) may not have been found until it was a lot bigger.  I didn’t need a mastectomy.  I am having chemo, etc. Take care lovely, it is all so hard to come to terms with and right up until I read the pathology report I thought there has to be a mistake xxx

I meant to add Annie, that is sounds promising that yours is ‘only’ (though that is difficult enough) DCIS xxx

Thank you all I well let you know xxx

And I’m another one…tiny calcifications found in December,  2 WLEs Jan Feb, margins not clear and the big M recommended. How can it go from tiny calcs to a mastectomy, I cried. So seen a second surgeon, I had MRI yesterday to see if margins can be imaged. But don’t think he’s optimistic that it will be definitive and I feel he will agree with first surgeon. So… massively greatful that screening caught this and massively greatful to the NHS, but so sad that I’mprobably heading to lose my breast. It’s that strange swing between thank heavens it’s caught and noninvasive, but how miserable to face this.

 

I did think I was reasonably well informed, but clearly not… I didn’t know that a mastectomy was  not unlikely for DCIS. It’s hard to get my head round, and I’m not the only one, am I? It is hard to understand.

So, it seems that if the extent of the DCIS is not easy to remove with  one or two WLEs then it’s the M, I’m trying to negotiate another WLE and some lipofilling, but as I say, I’m not holding my hopes up.

 

So, I’m trying to stay calm and level, but very weepy and keep trying to keep it in perspective, then weepy again.

I can’t offer any words of comfort, Annie, I’m dealing with it by looking at homemade bosoms sites, but that might be the last place you want to go! 

I send big hugs, girlie, and if you want me to tell you how things go, I will, but if not, hope things go well for you and you are never alone in this, Caroline

Sorry to hear you are facing this ladies. I was told you can have 3 x WLE before mastectomy becomes inevitable. I think it also depends on how large your boobs are. Obviously if small, each WLE takes an increasingly large proportion of it & a mastectomy + reconstruction may give a better cosmetic effect in certain cases. Some ladies opt straight for it to ensure they catch it all. All the best. xx

I think whether you can leave DCIS depends totally on it’s grade. A friend of mine is in a ‘wait & see’ NHS area & hers has just gone invasive. She did have 3 years of both boobs normality before that happened. Honestly, my personality type would worry about what was going on in there between mammos, but others are more relaxed. We’re all different ladies. I have come across a lot of ladies that had to have 2xWLE & almost no-one that had 3 or progressed to full mastectomy after a lot of WLE, so try & keep your positive heads on until u know the second one hasn’t cleared it. I know that’s a tall order … I have NEVER in my whole life been as nervous as I was waiting for those 2nd results. Fortunately a couple of other ladies were there I had chatted to whilst waiting for the ops, so we distracted ourselves & I did some deep breathing to try & calm down. I’m sending you big cyber hugs & positive vibes. xx