DCIS - third operation coming up

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Tink100
Tink100 Member Posts: 4
edited August 2018 in DCIS (Ductal Carcinoma In Situ)

hi

I don't normally post in forums but I'm going slightly mad and I'm hoping for some re-assurance - back in June I had a wide wire excision treatment for high grade DCIS - after this initial operation they told me that the clear margin was not quite wide enough so they just needed to repeat the operation and take a “shaving" from one side - so I had the second operation two weeks ago - today I went to see the surgeon for the results and he says that they are still unable to get a clear margin. So he says there are two ways to treat this - go for a third try at the breast preserving operation or mastectomy with immediate reconstruction - he said the “new area of DCIS" is medium not high grade (previous area was high grade) so he would recommend trying for the third time with the breast preserving operation - I’m now struggling as all the way through this thing it’s been - “don’t think it’s anything but to be sure let’s do the needle biopsy” then the next appointment it was”nothing there but we need a bit more because the biopsy missed what we were trying to get so let’s get vax biopsy” then it was “it’s high grade”. So it just seems to be getting worse each time - am I overreacting by being so worried - should I just calm down

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  • Dhanno
    Dhanno Member Posts: 104
    edited August 2018

    I had the same problem .Went for re excision still no clear margins. I asked my BS to go for second reexcision. He said no .With extensive DCIS you can never be sure how much breast is full of it .I went for mastectomy .If you have very big size breast then you should go for second re excision .My BS did not do it because of my breast size. A second re excision would have scooped out the entire breast .My DCIS was grade 2

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  • Tink100
    Tink100 Member Posts: 4
    edited August 2018


    thanks for the reply - this is going to be the third excision and I have small breasts (A cup) - not exactly sure how much they are taking each time - 22.2mm was the original size - all I can say is the first time I noted no real difference in shape or size - second time only noticeable when I lent over (definite flattened shape and a dent) so not sure what it will be like this time but he did say he would be taking a “larger area" - it just seems madness to me that they say it is not cancer but they are talking about the possibility of major surgery - I'm just finding it all a little overwhelming

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  • Dhanno
    Dhanno Member Posts: 104
    edited August 2018

    Hi Tink .My first lumpectomy was so perfect that I could not believe my eyes .It was after the re excision I saw the difference .I feel you must go for second re excision . You must do everything to save your breast as long as your BS can remove the DCIS .

    After mastectomy the reconstruction process is very painful .My total DCIS was 9 cm so the BS did not try for the third time .

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  • Tink100
    Tink100 Member Posts: 4
    edited August 2018

    hi Dhanno - i am defiantly going to have the third re excision (sorry that was not clear in my initial post) - I was also surprised after the first op as I could really not see any difference - the second op did show a difference but again it was not that bad (the surgeon did say that it was still swollen) so it may be it will look worse in the next few weeks but I’m thinking I can deal with any potential cosmetic outcome of the third op - I do want to avoid a mastectomy if possible. The emotional side I’m not dealing with well - very few people know what’s going on (husband, adult daughter and two close friends) and I am unfailing positive and I downplay any anxiety I’m having - I don’t want to worry them so I do the whole “it’s nothing to worry about” “I’m fine with it all” but actually I am worried and I’m not fine with it - then I feel guilty for feeling this way - I know it could be worse so I keep telling myself I should be grateful it’s “only” DCIS
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  • Dhanno
    Dhanno Member Posts: 104
    edited August 2018

    Hi Tink

    Today I met my breast surgeon My mastectomy pathology report shows no evidence of cancer There is not a single trace of cancer .There was no need for mastectomy . BS and radiation oncologist scared me that there may be more DCIS and IDC and they cannot be sure .

    Imagine my shock when I came to know that my breast had zero cancer and I could have just had radiation after re excision and moved on with my life

    Moral of the story is never trust everything that your doctor says. Trust your instinct .We are so frozen with our cancer diagnosis that we lose our decision making skills

    Like you even I made sure that very few people know about my diagnosis .Except for my parents and sisters nobody knows about my cancer .I strictly told my husband not to share with his family members . And this has been a very wise decision . I have completed my treatment with a great sense of privacy .No body has hounded me for updates and expressing sympathy I think you made an excellent decision by keeping your diagnosis private . With in one month you will be done with your treatment and nobody will ever come to know you had cancer unless you choose to tell them .Best of luck .

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  • Tink100
    Tink100 Member Posts: 4
    edited August 2018

    hello Dhanno

    I am so sorry you have had to go through this - and to have the major surgery when it was not absolutely necessary seems madness - it does make me wonder if they (doctors) are over treating rather than waiting and watching - but then I think about how we would feel if the DCIS changed and spread quickly - when we could have done something to stop

    I hope you are no longer in pain and find a way through to the other side of this.






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