Forum Discussion

Frenchbee's avatar
Frenchbee
Member
10 months ago

DCIS

Hi everyone,

I am new to this forum - and any forum really - I have a horror of any sort of social media. 

But I am struggling so badly emotionally right now.

I have been diagnosed with extensive DCIS in my left breast - 60mm high grade (grade 3) with comodo necrosis - confirmed via lumpectomy surgery.  Another 5mm high grade DCIS found under the left nipple in a separate nipple delay surgery.

They have also found focal LCIS as part of the lumpectomy pathology.

I still do not have clear margins.  DCIS has been classified as ER/PR- and HER2+. 

Family history - my mother was diagnosed with breast cancer at age 44 and died at age 47.  Youngest sister diagnosed at age 42 (triple positive type) and underwent double mastectomy and chemo.  She is still thankfully NED 8-9 years later.  

I have one sister left who has no diagnosis (as yet).  My mother and all three of us daughters have been noted to have dense breast tissue.

I am 53 years old however given the extensive size of this lesion and looking back at some of the mammograms which did show mild calcifications several years ago- I expect this has been growing since my late 40's (if not earlier).  The mammogram only showed a 15mm area calcifications, so the bulk of this DCIS lesion did not ever show on imaging.

My sister underwent genetic testing at the time of her diagnosis which did not show any known genetic mutation.  However, geneticist does believe there is likely some genetic link due to the very young age of both my mother and my sister at diagnosis. I will be having genetic testing at some stage as my sister's testing was 8-9 years ago now.

Breast surgeon has now recommended mastectomy of the left breast including removal of the left nipple due to involvement in the DCIS lesion.

He has said that I could reasonably argue "both ways" with regards to my right breast (i.e. there is an argument to take both breasts given family history etc.  However, could also make an argument to keep the right breast and monitor.  So it's my decision.

I have (at this stage) decided to have a double mastectomy with Diep Flap reconstruction.  The surgery is scheduled for 10th July.  Part of my decision to go bilateral is because the diep flap is a "one chance only" surgery.

I also have already had some biopsies on the right breast (benign to date) but am aware LCIS is generally bilateral and may indicate a higher ongoing risk to the right side.

It's also a very big surgery and I do not want to have to ever face this again if possible. 

I am so so terrified of the surgery.

Here's the main thing -  I am absolutely shattered about losing my breasts.  It seems such a radical surgery for a non-life threatening diagnosis.  I am in so much mental and emotional pain and I have been having a LOT of suicidal ideation (although I don't think I would act on it - I just literally don't want to wake up most days). 

I can't bear the thought of having no feeling in my chest.  I am so worried about possible ongoing permanent nerve pain and post mastectomy pain syndrome and "iron bra" syndrome. 

My breasts are the ONLY part of my body that I actually like.  I already know that I will have massive body image issues and loss of confidence after this. I am incredibly depressed.  I am seeing a psychologist (Dr Charlotte Tottman actually - she's so wonderful).  I am trying very hard to deal with all this.

I feel like I will be so judged that is my key pain when so many others would do anything to change places with me and my diagnosis. I am so very aware of that and it's very hard to be honest about this because I feel like I should be focussing on the health part and not my physical loss.

It's not that I'm not very grateful that this was found so early and I should be able to avoid all the awful treatments (radiation/chemo etc) and even more so, that my life is not at risk like so many others.

I just can't believe I still have to lose my breasts and nipples with this very early diagnosis.  I can't believe it.

I'm also really struggling with some health professionals (including my breast surgeon and plastic surgeon) calling DCIS "pre cancer" or saying it's not "real" cancer.  I just can't bear it.  I can deal with calling this bloody thing Stage 0 breast cancer or pre-invasive cancer. 

But to hear health professionals say DCIS is not even cancer when I have to suffer such a radical lifechanging permanent surgery - it feels like such a slap in the face. 

It also makes it SO much harder to accept this recommended surgical treatment.  If it's not 'real' cancer, I'll keep my breasts thanks very much.  

Why do they do this?  I cannot understand it - if it's to keep us "calm" - I can deal without being patronised??

So sorry for the long post.  I don't know what to do with myself.
breast-reconstruction
dcis
mastectomy
  • Maree72's avatar
    Maree72
    Member
    10 months ago
    @Frenchbee
    Yes having those tools is so important, I too don't have all mine either, and heading back into the hospital will be yet another test I will face that will trigger me, so I'm hoping on my next appointment with my phycologist she is able to help me find those in time.

    I thinking joining that online support group is a wonderful idea and a good starting point for you,
    Fingers crossed you may find a few more of us boob loving women in there :)

    I guess after thinking about your situation - I feel that until you get through this part of your journey ( the operation), as absolutely horrific as it is, getting onto the next phase seems harder and so far away.
    if that makes any sense.

    Once I had been re diagnosed the send time, my surgeon put me through so many test, biopsy etc, what she found was another wee cancer tumour, manifesting away way deep into the breast, so now instead of the cancer being in the lymph nodes from the 1st botched surgery, (thanks so much) plus the reoccurrence at the original site of the 1st lump removal, there was now another one just waiting to go surprise. Good thing they found it when they did, or I guess I wouldn't be passing this years mammogram.
    Because I'm dammed if I can do this again.

    So 3 hook wires later, and a long surgery for the surgeon, apparently I was on the table way longer than I should have been, I'm delighted to say it was all removed successfully. For that I'm truly grateful.

    I already no what I plan to lobby for once I'm out of this hole bloody mess, and I've even taken steps to get educated with enrolling into a Tafe certificate, to get started.

    I wasn't meaning your boobs were trying to kill you, it was a line that had been said to me by a few people. but I like your response, that they are having a good try,

    What has pulled me through most of the time was my dark and sarcastic sense of humour, if I had lost that, who knows where I would of ended up.

    Just a random thought, but maybe take your boobs (or the girls as I like to call mine from time to time) on one last hoarer, by that I mean, put on your most favourite clothing, go do you most favourite things, celebrate, as much as you can. 

    A bit like how we honour our beloved dogs when they are in their final days, I miss my dog so much, he passed away in late Sep last year, but we also gave him his best final day. With all his favourite treats and his buddy who came to say good bye to him came for one last visit, they ate schmacko's and sat in the sun, got lots of pats, many tears by us were shed.

    Maybe go and buy yourself something nice to come home in from the hospital? as your new you top or something like that?

    Grief comes in may ways and in waves, and you are going through that grift of loosing your breast, and now coming to terms with a new you.
    I think we all face a new me, once we are hit with cancer, and what ever medical treatment we all have.

    My phycologist said to me on one of our very 1st sessions is like  cancer is like having that concrete pad that we have build our lives on, shatter, and we can never put it back to what it once was, we just now have to put it back bit by bit with the glue we have, 
    And hopefully it will come out completely beautiful like Kintsugi the beautiful Japanese repair work of their pottery with gold left,
    And for me that truly hit home.

    I hope when you get to see your phycologist she is able to help you work your way through everything you are going through.


    And you are more than welcome that I reached out, cause I too thought I was the only one who loved their boobs, glade to know I'm not alone.

    Take care :) let us know how you get on,
  • Frenchbee's avatar
    Frenchbee
    Member
    10 months ago
    @Maree72

    Oh WOW - yet ANOTHER tumour.  Bloody hell Maree.  What an absolute nightmare.  No wonder you've been struggling.  It must feel never-ending for you.

    I wasn't meaning your boobs were trying to kill you, it was a line that had been said to me by a few people. but I like your response, that they are having a good try,

    I knew exactly what you meant - apologies for my clumsy response! 

    People are saying that to me all the time too - just whip 'em off.   And I totally get why women would feel like that too.  But I agree with you - for girls like us, that is just as hard to hear as any other bad news because I don't feel the same way.  At all.

    I think right now I'm just in a spiral of grief and despair as the days tick down to the surgery.  I really hope that once it's over, I can try and come to terms with it. 

    But I'm really worried I'll get worse instead as the surgery is irreversible and permanent and my breasts are irreplaceable (to me).
  • bgadke77's avatar
    bgadke77
    Member
    10 months ago
    @Frenchbee i cried reading your post... the very first one i read from signing in. I am here to with a similar situation and feel a lot of what you said. I'm trying so hard to get my head around it all too. Thank you for sharing your thoughts, I feel less alone. 
  • Frenchbee's avatar
    Frenchbee
    Member
    10 months ago
    @bgadke77

    I am so so sorry you are in this position.  My heart breaks for you. 

    It's such a lonely place to be, isn't it? 

    I'm so grateful that my post has helped you feel a little bit less alone, and I was so touched to see your message this morning  

    I was very apprehensive to post at first as I really thought I might be the only one feeling like this. 

    I am so glad I did now -there does seem to be a small pool of us feeling the same way.

    I know nearly all women experience loss and grief and many complex emotions with this surgery and the physical losses.  There seems to be a wide spectrum of the intensity of that grief. 

    So many women express the desire to "get them off" and run from the danger they represent - and then they must also deal with their loss and grief. 

    It's such a logical and sensible response.  I totally get it.  I wish I felt that way too - but I don't.

    My breast surgeon has said that he treats some women who will absolutely refuse the surgery regardless of the medical implications.  He respects their decision and treats them as best he can whilst undertaking their wishes. 

    I feel like I am right at that end of the spectrum - and this is necessarily a smaller pool of women from the breast cancer cohort (hence feeling very alone)

    I think my surgeon was very surprised at my reaction given the family history with the loss of my mum at such a young age and my baby sister's very young diagnosis too. I'm surprised too, to be honest.

    I think he thought I would immediately choose mastectomy.  He told me from the outset that was the likely outcome given the extent of the DCIS shown on the scans. 

    He has already undertaken two smaller surgeries first to see if I could get away with a lumpectomy.  That is why I am forcing myself to accept his recommendation - he has really tried to help me. 

    He's also very senior at Peter Mac (I won't say his position as not sure if we are supposed to identify doctors) and I know he would not be recommending unless he really thought I needed it. 

    I have been seeing him for years (since 2009) for monitoring due to my family history.  At least I feel like I have a relationship with him already and I trust him and his depth of experience.

    I am FORCING myself to accept the medical recommendation - but every cell in my body and mind rejects it. 

    It's like I'm constantly at war with myself and it's so mentally and emotionally exhausting.  I can't sleep and can barely eat.  I've lost a fair bit of weight (silver lining I guess).  I don't want to see any of my family or friends.  I just have nothing to give.

    Please reach out if you need to chat at any time. 

    Sending you much love this morning.

  • arpie's avatar
    arpie
    Member
    10 months ago
    Hi @bgadke77

    Welcome to the forum - feel free to start your own thread on 'Newly Diagnosed' and tell us your story so far .... 

    take care

  • MelCBusby's avatar
    MelCBusby
    Member
    9 months ago
    @Frenchbee you’re not alone. This is my first time in this forum, and I looked for comments on DCIS. I also have a high grade DCIS diagnosis.
    I’ve had two surgeries so far since diagnosis  in May and I have another one 8th August, this time a mastectomy on my right breast.
    i was also told this was “pre-cancer” at the early stages of diagnosis, and this plays a massive part of my self-consciousness- I beat myself up when I feel depressed and anxious- “this is only Pre-cancer, why am I so upset??? “ 
    Im struggling with the changes to my body and coming to terms with my upcoming surgery.
    i may be considered “pre-cancer”, and they may be trying to appease, but it only feels like they’re belittling your condition, and it makes you feel like you’re over-reacting.
    Maybe this should be addressed within the medical field 


  • Frenchbee's avatar
    Frenchbee
    Member
    9 months ago
    @MelCBusby

    I'm so sorry for the long delay in replying Mel. 

    I had the mastectomy/diep reconstruction surgery on 10th July and just now resurfacing a bit.

    I cannot agree with you more - I have felt quite isolated with this diagnosis and like I don't "belong" in the breast cancer world.

    Yet the medical interventions that many DCIS patients must endure are sometimes at the extreme end of things - particularly the surgeries.

    I have had multiple mammograms, ultrasounds, MRI, core needle biopsies, MRI guided biopsy, lumpectomy surgery, nipple shave surgery, mastectomy and now phase 1 diep flap surgery.  I still have at least one more surgery to go plus a nipple reconstruction

    Honestly - it feels like... a lot?

    I am so so grateful that my mastectomy pathology has confirmed that (finally) I have clear margins - I know how lucky I am that I don't have to face chemotherapy and/or radiation like so many of our further advanced sisters.

    I told my husband that I feel like I've been through a woodchipper after the latest surgery, and I just can't imagine the feeling that women who must then face chemotherapy/radiation must have.  My heart just goes out to them so much.

    I told my breast surgeon that the term "pre-cancer" or people saying it's not "real" cancer is very upsetting and invalidating to women like me.

    I told him that I prefer to use the term Stage 0 Pre-invasive cancer - I feel like that is more accurate for my condition and what I have been through.

    He said that the condition is certainly malignant - and that sometimes women find it more comforting to be told it's NOT cancer (because it's not yet invasive).

    Personally - whilst I understand that may be comforting to some women, and particularly those women who have to undergo much less dramatic treatment - the condition either is or it isn't cancer.  We can't change the classification to make people feel better.

    Frankly, that feels quite paternalistic to me - just tell me what it is - I will cope with it accordingly.  It's much more confusing and upsetting that some medicos and medical paper classifications say it is cancer and some say it is not.

    Seems that some of the trouble is that the medical world itself cannot decide how to classify it - there is such a range of DCIS from a small Grade 1 lesion right up to the large Grade 3 lesions that you and I have.  Perhaps they need to have sub-grades within the DCIS category to more accurately represent the particular diagnosis?

    I can totally understand the struggle with changes to your body - so so much. 

    I am going to put up a new post about that exact issue.  Again, I may be in a smaller pool of women with how strongly it has impacted me, however, I now feel more confident that there ARE other women out there who feel like me.  I hope that posting raw honest feelings about this might help someone else feel less alone.

    I'm also going to post about the mastectomy and diep experience (so far) to try and help those who are facing this too.

    Please please feel free to reach out to me if you want to talk about the surgery at all - if there is anything I can do to help you, I would be so happy to do that.

    Sending you so much good wishes and thoughts as you go through this awful thing.

    T xx
  • Frenchbee's avatar
    Frenchbee
    Member
    4 months ago
    @maree72  Hi Maree.  I've been thinking about you.  Hope you are going ok and your daughter's wedding went well?  T x