mastectomy for 9 cm DCIS

I was diagnosed with DCIS in 2015.  I had lumpectomy followed by 15 sessions of radiotherapy and then annual mammogram for 5 years .  I'm a G cup and had two areas of concern   10 & 5 mm.  only the larger area high grade DCIS.  There are other ladies in this site who have had mastectomy for DCIS due to size,  Hopefully one will come along .

Your original biopsy will give indication of type/malignancy and then after surgery they do more testing and sometimes diagnosis changes.  Mine went from intermediate to high grade but my treat remained the same x

Thank you Carol,

It's hard to come to terms with losing my whole breast just for DCIS which they keep saying is completely curable is not very serious. Seems everyone on here who has DCIS did not need a mastectomy as I have had no other replies. But thanks so much for replying- I just need to talk to someone who has been through this. Everyone seems so positive but I am not feeling positive about losing my best body part for something that definitely isn't life threatening.

Sometimes feel like screaming.

Lara 

Hello, I have recently had a mastectomy due to having 2 dcis in my left breast 58mm apart so therefore had to have the breast removed along with 2 lymph nodes. The removal of the nodes were to clarify if it was going to give any further trouble but thankfully it didn't and now I'm clear . It's only 3 weeks since my OP so I'm still sore but I didn't want  a reconstruction ..I hope this helps xxx

Thank you,

They are removing 2 lymph nodes for me as well. Did they tell you the results of what they actually found in the rest of your breast? I also have several clusters of cysts they say are harmless, which is why l went to doctor. I'm confused and am wondering if there is any connection to these and the cancer cells.

No all I was told I had 2sets of calcifications in my left breast which needed to be removed but the whole breast had to be removed because of the distance between them but they tested the 2 lymph nodes to make sure it hadn't gone any further. If they have said the cysts are  harmless dont let it make you worry as if they were connected they would tell you. Try and stay positive if I can help you I will do my best xx

It's natural to grieve for losing something and you  need to tell family & friends you are grieving.  It's not your job to make them feel better about your diagnosis so don't just join in with their brushing it under the carpet .  
Northerner. I think chose mastectomy for DCIS

Thank you both of you. I have told friends and family and all are very supportive. There seems to be a lot of debate as to whether DCIS is cancer or pre-cancer and therefore not as dangerous as cancer. Everyone says l should go ahead with the mastectomy and I do get it. I wouldn't mind chopping off my little finger of even big finger to possibly save me from developing invasive 'proper' cancer at some later point, but my breast???? I suppose I am grieving.

Anyway I'm going to auction it off . My friend is making a life size model to sell to the highest bidder. Proceeds to Breast Cancer research. I know it's crazy but it gives me a better reason to lose it than 'What if...' And it's helping me to accept it.

As I've big boobs I had to have  mould made of my chest ti hold in place for radiotherapy!  A lovely clear mould of my boobs !  I should have asked for it as garden feature !!!!

I debated radiotherapy as once you've had it on breast it can't be repeated if you gave recurrence and it's a belt & braces approach.  My surgeon told me this about surgery considered over treatment by many for DCIS but it's her preferred route if she has any suspicion on areas of concern .  In fact same say o had surgery smother women in bed next to me having same op for benign area as surgeon concerned biopsy missed something .  I have no regrets but I still gave both my breasts . 

Perhaps you should think how you would feel if you wait & watch !  Would you be constantly wondering what's going on !  

Hi Lara click on my profile to read my story 

I had calcification no lump to feel or seen on ultra sound even surgeon couldn't feel anything ..only mammogram .

Firstly it is your body therefore your decision but this is my story 

As Grogg says I made choice of mastectomy surgeon was willing to do lumpectomy.. he works on principal if cancer is 45mm or less then Lumpectomy but after that MX . He explained that because I had large cup boobs he could still do lumpectomy .when asked he said non aggressive with a strong possibility of no further treatment 

My response was remove breast he argued point to make sure I knew what I was saying .

My decision was based on following

Immediate reaction get rid of cancer .

Info given was two areas adding up to significant size of over 50mm small area invasive  and another non invasive 

Disagreement about size between radiography and surgeon re size because radiography thought one area had not change in previous three years ( I hadn't been told calcification there three year previous .)

I asked and had a second biopsy ...there had been a change . 

Previously on breast clinic day I was told calcification was usually found to be non suspicious ,Suspicious then positive or neg biopsy .

I didn't ask what was change I just said no more question remove .

All this was very quick I had mastectomy 8 days after diagnosis with sentinel node (5) ..results were no spread and clear margins given .

Then I was told op biopsy results were Her2+ grade 3 ....so chemo etc needed 

This told me that I had made the correct decision 

Its important for me to say this is my story and we're all different you need to get as much info as you can to help you make an informed decision  

Age does come into it also how you personally feel bout losing a boob. I was fine I didn't want or have any reconstruction . I live with a prosthesis who gets called Clarrisa and can honestly say I'm confident nobody can tell . 

Others may come on with their stories and I hope it helps you to make a decision you are comfortable with .

take care keep posting we're all here to help and support 

Thank you Margaret, it's so good of you to reply to me because everyone else seems to have had a less widespread area. I'm not okay at all about losing my breast and I'm having silicon put in straight away. I've been reading on Internet far too much to try and find out if they really need to touch it because I'm told it's only medium grade not high. I believe 9 cm is quite widespread though as I'm only a 36D cup. They said I don't have enough tummy fat to do a tuck to make new breast out of. I have my appointment on the 12th to ask more questions and l have loads but what they all boil down to is this. What percentage of my ducts are infected with this and because it's large does that mean it's more likely bto get invasive more quickly? They are operating on the 27th April.

Thanks so much for your support. Xxxxx 

Lara

Oh I forgot, I'm starting a crazy campaign to make something positive come out of this. I'm going to auction off Leftie', my best breast, to raise money for Cancer Research. I'm just waiting for them to answer my email and for the clay breast my friend has made to dry. Obviously the clay one is what we are selling!