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Juneebarb's avatar
Juneebarb
Member
14 years ago

High grade DCIS

After a mammogram guided core biopsy my surgeon rang to say I had DCIS and he would need to remove a small area which would probably be all that was necessary.  

A few days later he did a lumpectomy - it was down as partial mastectomy on the paperwork which freaked me out a bit.  I was in overnight and before I left he said he was quite confident that all would be well.

I got a phone call last Wednesday to say there were more cells in the margin and more surgery was required, possibly a mastectomy with immediate reconstruction.  I was floored.

Saw my GP Friday and found out that its high grade DCIS in margins. As there's family history of bc its probably prudent to have mastectomy rather than larger excision plus radiation.  I'm starting to come to terms with it but it terrifies me all the same.

It may not be my decision after seeing the surgeon tomorrow but I'm now trying to find out best way to go with reconstruction - immediate or later - implant or tissue.  My boobs are not very big but I do like wearing strappy tops.

My hands are very shaky writing this, its my very first blog,  I'm not an 'out there person' but you all seem so supportive so I thought I'd put some thoughts down.

I know I'm very lucky and I'm trying to be positive but nevertheless its a difficult time.

Thank you all for being there x

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  • sillysam83's avatar
    sillysam83
    Member
    14 years ago

    I was diagnosed with high grade DCIS aswell, feb this yr. had lumpectomy no clear margins so mastectomy a month later. followed by reconstruction via tissue expander. ur surgeon will recommend the best option for u I'm sure, so try not to worry right now. Ask your questions and dont be shy! :) Hear if you need to chat. private message me if you have any questions. Hope ur ok. 

    Merylee

  • Juneebarb's avatar
    Juneebarb
    Member
    14 years ago

    Thanks for replying Tonya,

    I didn't realise how important it would be to have contact with women who'd been through this and much more, its giving me courage.

    I was given the booklet, DCIS Understanding your diagnosis and treatment after I'd had the first operation and feel it may have been a greater benefit to have read it beforehand - or maybe i'd have been more scared.

    I have a long list of questions so hopefully by the end of tomorrow I'll be able to start on a plan and I'm going to try not to rush into a decision before I feel comfortable with it.

    xx J

  • TonyaM's avatar
    TonyaM
    Member
    14 years ago

    So sorry to hear about your breast cancer.You are abit shell shocked at first  because it all moves along so quickly.Sounds like you've had the goal posts moved on you.You psyche yourself up for one op and then cop another. Unfortunately this happens when they don't get clear margins-it's not uncommon.You need time to research reconstruction so don't rush your decision.It's something you can do down the track without a problem.There are basically 2  types.With an implant you have to have an expander put in first which gradually gets filled with saline and then you go back for another op to get the silicon implant.The other one  (diep) is where they take a roll of belly fat and turn it into a boob-that's a very basic description.The recovery is much longer and it's very expensive.If you have another lumpectomy then you'll most likely have radiation(for 6wks)after it. If you have a mastectomy then you probably won't- your doctor will tell you. I had a lumpectomy and radiation back in 2003.I was in the unlucky 8% who get it again despite radiation.It came back last year in the same breast,same spot,so had to have a mastectomy and chemo.I wear a prosthesis in my bra and you'd never know.But a mastectomy scar is more confronting and poses a few problems(for me anyway).If I want a reconstruction in the future then I'm limited to the diep one.This is because I've had radiation which destroys elasticity in the skin.You are on a steep learning curve so gather opinions/information/goolge.Then write down all the questions to take with you to the doctor's and preferably have someone with you.It's such an anxious time for you but once you have a plan then you can get your head around it all and move forward.We are all anxious and sick to the pit of our stomachs when we get a bc diagnosis.Lots of love and support from family and friends will get you through.We are here for you too so blog any time you are scared or want to vent- we understand cos we've gone through it and survived and you will too.

                                 Tonya xx