DCIS - WLE ? - confused

Hi All,

I have been diagnosed with low and intermediate grade DCIS and am booked in for a WLE on 8//4/08. Reading lots of posts on here it seems that a lot of you ladies either have a mastectomy or double mastectomy following a diagnosis like this due to family history. My father and an aunt on my mothers side both had breast cancer and my surgeon is aware of this but has told me a mastectomy is not necessary at this stage - what do you all think? I also asked if the WLE would be followed up by radiotherapy and he said that depended on the pathology results on the removed tissue. He did say I could have reconstruction and operate on my good boob too to even them up but I elected not to have this because there might be need for further surgery if they don’t get clear margins.

I had a WLE for invasive ductal cancer and when they analysed the lump there was also extensive DCIS that hadn’t shown on the mammo or ultrasound. There were clear margins except nearest the skin and I was told that rads would sort out anything left in the skin. It was my choice of whether to then have a mastectomy or not and I chose not to. My mother died of breat cancer 20 years ago. My consultant was very happy with my choice so I hope I haven’t make a mistake although it does worry me sometimes.
Good luck
Anne

Thanks Anne, hope everything works out for you. How long did it take you to recover from the WLE and is there much scarring? I have two dogs and one of them pulls a bit on the lead, so I’m giving him a fortnight of extensive training in the hope it won’t be too long before I can resume walking with them.

Hi Summerdays

I too have DCIS and have to have mx on 10-04-08 I have no family history of BC but my DCIS is wide spread, although I have no lump mine is Calcium but it is in several ducts. I too have been told that I shouldnt need radiotherapy so I am having immediate recon and reduction on good side. Im not understanding this thing about clear margins because Ive been told that they will remove the whole breast, so to my mind they cannot leave anything behind??

Take care

Jo

Hi Summerdays

I have just had WLE for DCIS a few weeks ago. I too went through wondering why there were so many treatments and I have read so much about it. If the DCIS is widespread or high grade cells, then often a mastectomy is the best treatment. If not, WLE aiming to cut out all the cancer cells is just as good as long as they have removed it all with good, clear margins. Radiotherapy used after surgery is the standard treatment in USA and Europe, but in the UK, only about 30% of patients have radiotherapy because it is thought that in some groups of patients depending on age, grade of cells, margins etc, their chance of the DCIS returning is very low. I was offered the choice of radiotherapy or not - my cells were graded intermediate and the amount of DCIS removed was small and the surgeon managed to get everything out with clear margins. After much researching over the weekend (how relaxing) I have come to the conclusion that I am going ahead with radiotherapy. I think if they are very sure yours won’t come back, they will recommend not to have and if there is a doubt, they probably will. I found that the Cancer Backup website and Cancer Research website have lots of really good information and you can contact them by email with your questions.

Cathy
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Hi Summerdays

It took me a couple of weeks to get over the WLE. I think I was off work for 3 weeks then went back for a while before I started chemo (for the invasive cancer). The scar for the WLE is virtually gone now (after 11 months). The scar where I had the sentinel node biopsy is longer than the other scar and still more noticeable.
Good luck
Anne

Hi Summerdays
I had WLE on Jan 31 for DCIS, intermediate grade (I think). I’m now having 16 sessions of radiotherapy.
As I had a breast ‘lift’ my scar is around my nipple and down the middle of my breast underneath the nipple if that makes sense. The scar is fine now. You’ll probably want to have the dog lead in your other hand! I have chording even though I religiously did the exercises! I, too, decided not to have the other breast reduced in case they didn’t get clear margins but that is an option for next year if I choose it.
I think we have to trust that the experts know what they are doing. That doesn’t mean we have to sit back and take whatever they tell us. If you have concerns, then ask for a second opinion.
All the best.
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