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.
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.
