Help needed with a few questions please - DCIS and second WLE

Hi, I din't have the personal experience myself to help you, but I noticed you’ve not had any replies yet. My response will bump your post back up the page and hopefully someone will be along soon to support. Best wishes 

Thank you X 

I'm not sure if I'll be using the correct words - but hopefully you will get what I am trying to say. ....

Trying to keep this short as my story is a little longer and diverts off based on different treatment....

With regards to 'clear margins' - before my lumpectomy/wide local excision I said to my NHS consultant that I would be 'happy' for them to 'take more than needed - with the view to getting clear margins'.

The Consultant told me 'its not as simple as that'..... they have to take as minimal amount as they can - all with the main intention of getting clear margins.  They aren't allowed to take 'larger amounts' (that may ensure clear margins) I believe it is because of the 'claim world' we are now living in - that patients will make claims that 'too much was taken/the area is like 'x' due to taking too much, etc'.  I said I'd be happy to sign a form waiver any rights for me to claim - however, this isn't an option.

The consultant would like nothing more than to take that little extra few millimetres - but, they have to go be what is in the guidelines.

I believe the MRI would be to give them a better outline of where or how big the area is - to give them a better chance of clearance - or if its a full body scan could they be looking and checking the whole body.

My treatment changed, I went private to enable me to have 'combined lumpectomy and internal radiotherapy' both carried out at the same time - within 'one' operation.  

Due to fear, I said to my new consultant that I was prepared to have a mastectomy have both boobs removed, anything to remove it.....

My consultant told me - there was no point in this, the one boob is okay, nothing there and could stay that way, so why remove it and then the other boob - he said it was 'in the one part, the part that he can remove' so again no point in having remainder of boob removed - no benefit and with time my body would 'fill in' the area that was removed.

(I am large boobed, I think area removed was approx 75mm x 75mm (3" x 3" ) - it did leave a big dent and I it took me a long while to look in the mirror - and over months the area did 'fill in'.

We are all different and feel different about our choices - I will say 'ask questions' educate yourself - even blame family members if you feel awkward asking anything.

If you find you have difficulty sleeping or just want a chat or to ask a question - look out for the "AWAKE" thread - we all tend to hang out there and the knowledge and information is incredible.

Sending love and hugs.

Hi Buzzz,

I can't answer all your questions.

I did have a lumpectomy to remove a DCIS. It was only small (mm). My surgeon did a 'nipple lift' at the same time - mine was below my nipple, towards the centre of my body/the left of my right boob as your look down at it (what a description!). The nipple lift was to try to offset any 'drooping' that might be caused by the lumpectomy. I'm a B cup.

I did have a visible 'groove' and have ended up with fat necrosis on that part of the breast (I believe, where my surgeon tried to 'shift' some of the fat to fill in any gap). I don't think it's too visible now - more so when I'm wearing a bra as I have to have the bra to fit the left side (mastectomy and implant). I find that if I slouch/am sitting at an angle there's a gap at the side of the bra. I think it's only me who's conscious of it. The boob as a whole does seem a bit droopier than it was (but that could also be in comparison to the extremely 'pert' left side).

It sounds like we have quite different experiences, so I'm not sure if what I've said will help. My surgeon did say she'd consider a 'mini tummy tuck', ie moving a bit of fatty tissue from my tummy to my right breast if I was unhappy about it when I go for my annual check-up. I'll see how I feel, and what she says, nearer the time.

Take care, and good luck,

Diane.

Hi Buzzz,  My situation is a little different but has some similarities.  I am small breasted, 34A, and was worried too about the cosmetic outcome. I live in US and MRI is done pretty routinely on breast cancer patients.  I had lumpectomy in both breasts as I had MRI’s done and it showed something in left breast that did not show up on mammogram or US. The left breast had stage 1 invasive and DCIS.  3 mm tumor and 6 mm DCIS.  Surgery went well and my incision is barely visible.  Surgeon did a great job and other than the small scar on the side looks like before operation.  
I had DCIS in right breast and MRI showed another small area of concern .  Could not do MRI biopsy as breast volume too small so had to be removed at time of lumpectomy.  That was only fibrocystic changes, no cancer.  
My DCIS right breast was at 1:00 o'clock central right breast.  
Surgeon used one incision to remove the DCIS and the fibrocystic disease too.  He did a peri aerola incision With DCIS the goal is 2mm margins.  
Dcis is challenging as sometimes it is scattered in the specimen and more difficult to get clear margins.  To make a long story shorter the surgeon removed more than I anticipated but did move around some tissue.  My breasts are symmetrical but I do notice a little less volume in my right breast but looks good.  Healed up well and I am very thankful and satisfied too.
I think it is important to realize that when tissue gets removed etc that there may be changes to the appearance.  I know that the surgeons do their best to get a good cosmetic outcome.  I asked a lot of questions too as I was concerned because of having small breasts there is not that much that can be removed.   Another challenge was the surgeon who did my first operation had a family emergency and was off work for over 2 months so I had to see one of his partners.  I was scared but had to move along cause radiation was next.  
I am thinking positive thoughts.  
Barbara

Hi all, thanks for your responses and sorry for my slowness in responding. 

I think my mind still felt a bit muddled about things when I posted here, however I've since spoken to the breast nurse and my surgeon and had a good conversation. 

I've just had my second WLE this week as my original 2 X DCIS areas (6mm and 8mm) turned out to be much bigger (very common apparently) where he didn't get clear margins on 3 edges. He's taken another 'golf ball' lump and still managed to move around alot of breast tissue - which shows just how dense the tissue is, and also problematic!

My results are in another week. There is still an option to do a 3rd WLE if there is still one more edge to get clear, but like you, it's persistence most likely indicates a bigger DCIS problem where a mastectomy would be a next discussion. However, first things first. 

I'm feeling fairly bright about things (apart from the eve of the second surgery (pre anaesthetic stress)). 

Wishing you the best results from this operation.  You are getting closer to good news.  DCIS is a difficult thing for sure.  My breasts are dense too.  Smaller breasted women have that issue more than larger breasts.  Your surgeon sounds very good snd not rushing into anything.  That is important and mastectomy is final.  I will be thinking of you.

Barbara

Thanks Barb, DCIS is indeed tricky! I do have a good surgeon and am very fortunate. 

You're right, a mastectomy is a big decision, and I guess that was at the heart of this post, not quite feeling that we'd exhausted all avenues.

We still haven't, but I'm far more comfortable that this is where it may go than I was before - then they'll be a whole new journey as I deal with the different roads that leads to and a whole load new questions and decisions. First things first though

For sure as you will have important decisions to make.  Take it easy.

Barbara