Diagnosed with DCIS and need a Mastectomy/double mastectomy

Hi there,

I’m 36 years old and was diagnosed with DCIS a month ago. I was initially told I would need to have a WLE and maybe radiotherapy. Had an MRI scan which was non contributory as didnt find anthing else but further investigations has revealed 5 areas of DCIS covering an area of 7cm and was told I need a mastectomy and am booked in for surgery in 2 weeks time. I am absolutely petrified.

I was also tested for BRCA genes as my mum has had bilateral breast cancer in the past (once at 49 and again at 57) and my grandmother too although this was in her 80s. The test came back negative but the geneticist said this doesnt rule out other genes that may be responsible. Because I’ve watched my mum go through BC twice (completely unrelated cases, both invasive (stage 2 and 3) and needed lumpectomy, chemo and radiotherapy) I have always thought that this would be something I would surely have to face one day in my life.

The fact that I’ve been found with DCIS at 36 I think there is a strong possibilty that this could be hereditery and my initial reaction to being told I needed a mastectomy other than complete and utter shock was that I needed to remove my healthy breast also. All I could think about was my two young children (3 and 1) and the fact that I don’t want to have to go through years of screening, anxiety and risk further surgery which would take me away from them if I could get prevetative surgery done now too.

Is there anyone out there that opted to do the same? Part of me thinks I’m crazy to do this as I am horified about having a single mastectomy let alone two but another part of me thinks I need to reduce my future risk and because of my mum and the fact that I have been found with this so young I would be anxious for evermore. I dont want to go through all this surgery and find out in a few years I have it in the other side or be tested for another gene and it come back positive and go through surgery again.

I am scared about the prospect of surgery in 2 weeks time, mourning the loss of my body as I know it, am scared that invasive cancer may be found or that it has gone to lymph nodes and am generally up and down emotionally. I have never had surgery in my life before so am more anxious because of that I think. I am going to be so overwhelmingly happy if I am told I am all clear after the opereration and that is the one thing keeping me going. This anxiety I am feeling is making me lean towards a bilateral mastectomy I will have more peace of mind in the future and I am booked in to have this procedure but a small part of me is thinking I am mad to treat the healthy side…but this is my chance to eliminate future risk and I also feel mad not to take it as I feel extremely lucky to have found this DCIS, totally by chance.

Anyone out there that can share their experiences with me would really help right now.

Thankyou

Dear laura_c

Welcome to the BCC Forum where I’m sure you will find a lot of help and support from fellow members.

You might also find it helpful to talk things over with one of our Helpline staff. They can offer practical information as well as emotional support. The opening times are 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000.

Very best wishes

Janet

BCC Moderator

Hi Laura_C

It is a very personal decision regarding ths type of surgery so just be confident that it is truly what you want .

I have just had a bilateral mastectomy as I have just had BC for the second time. I was tested 14 years ago for the BRCA gene but it came bak negative and I was adamant that this time it was the surgery for me. I was tested again and sure enough I had a BRCA gene mutation so it was a no brainer in my eyes. My daughter who is 31 also has my gene and she is going for surgery soon. As you say there are genes out there that they don’t know about yet so I can imagine it would be a constant worry for you. By having a bilateral mx you have done your utmost to ensure you stay healthy and be there for your little ones and I am sure that in itself will spur you on.

I had immediate reconstruction with Becker expander implants in May and my daughter is going straight to implant with strattice mesh.

If you want to know anything else re MX or recon. Would be happy to answer absolutely anything for you either on her or by private message.

Wishing you well with your journey and sending you a big hug

Wendy x x

Hi Wendy, thank you very much for your response I really appreciate it!
How is there reconstruction now after you’ve had a bit of time to get used to it? Are you uninvited or do you have sensation and do the implants feel alien to your body? I’m worried I won’t be able I feel cuddles with my girls, lie on my Front to sleep and just generally feel uneasy about by body afterwards. I have to put these thoughts out of my head at some point and just get on with it as its making me anxious about the op next week. I have pre op appointment on wednesday so guess I’ll get a lot of after while there about the op & recovery.
How was your recovery?
Good luck to your daughter. She sounds very brave.
Thanks again for your response. It’s buoyed me along a bit.
X

Hi Laura
I think you are doing the right thing having a double mastectomy. I had ovarian cancer aged 35 and had all my jiblets taken out. Two years after that I asked to have a double mastectomy as my mum had breast cancer prior to 60 and my gran had died of breast cancer. I was told that wasn’t an option and I had my breasts reduced. At 46 I was diagnosed with BC in my right breast. I had invasive lobular cancer and invasive ductal cancer totalling 7 cm. A Professor at Sheffield Hallam told me I was highly likely to get BC in my left breast so it was a no brainer for me. He also said if I had been listened to when I was 37 and had a double mastectomy and reconstructive surgery straight away I would not be where I am today. I have just completed 20 sessions of radiotherapy and am very burnt have had an allergic reaction to the creams I have been given. It has not been an easy ride, however I am still here!!
My BC was picked up on a mammorgrame as there were no lumps or bumps to feel so I am really lucky I am still coming to terms with a flat chest (as I had a lovely pert pair of bad boys lol) but at the end of the day they were killing me. I am seeing my consultant in 2 months time to discuss options for reconstructive surgery but am not convinced it is worth the pain and risk for a couple of lumps I won’t be able to feel…BUT everyone is different and we are allowed to be unique and make choices that others may not agree with.
Big hugs and lots of courage coming your way and try to see your experience as a really positive thing
Love Jen x

Thankyou Jen.
You have been through a lot over the years but sound very strong and positive. I really appreciate the advice I’ve received on here from you and Wendy. There is life beyond this!
I’m in a little pre-op vaccum at the moment and can’t think beyond it as dont know what to expect, how my recovery will be and results of the dreaded histology report! I will be elated if the SN biopsy is clear but feeling very negative about it as i started with 2 areas of DCIS but further reviews of mammograms has found 5 in total so worried what else might be lurking. Cant worry about it too much though as it could all be fine too!
Its good to hear people at the end or further along their journey as it makes me not worry too much. My mums been through BC twice and has said you get stronger at each step of the journey and that is proving true from reading your posts and with how I’m feeling.
Thanks again
laura x

Good luck with your appointment

Hi Laura_C. This is my first time on here and I have just read through this thread and like you feel a bit stronger than I did 20 minutes ago. I too have recently been diagnosed with DCIS spread over a large area of more than 100mm so must have an MX. I am opting for an immediate reconstruction…hopefully a DIEP flap which will involve travelling from the far north of Scotland to Edinburgh. I am having an SNB before the MX this Thursday and beginning to feel quite nervous about it. Has anyone else had an SNB before the main operation? I know that there are so many questions I will ask but just don’t know what they will be yet but from reading through this wonderful, helpful BCC site, it seems that they will be very quickly answered. Jen what an amazing woman you are and to sound so bouyant too!

Hi VSK - my thoughts with you for tomorrow. I had SN biopsy done day before the operation on 1st July. Like you I was so anxious but believe me, I hardly felt the 4 injections I had. The scan 3 hours later was okay, I hardly knew the scan was going on apart from my aching arms as had to keep arms still over my head for about 5/9 mins. I asked for the nodes to be tested (and removed if necessary) whilst I was under anaesthetic but luckily all was well.
On the funny side although I had read that your urine would turn blue I was still taken aback when it did happen!!

Good luck

Diamondlady

Just thought I’d update you. Im homr now. Had a double mastectomy last weds so almost 5 days ago. I still have a long way to go but feel so relieved about it all as the decision making is in the past and my mind is totally clear. I just know this was the right decision for me. I am also physically alot better than I thought id be. Im on painkillers so not too much pain, it just all feels v tight. I also have sensation in one of my breasts and partially in the other and they do feel part of me so am very happy. I didnt think id feel like this so soon so am suprised. I think I was so worried about the procedure and how I’d look and feel afterwards that in reality it has been alot better than I could have imagined. I just feel like me but with a great sense of relief which is priceless. I dont want to focus on what the results look like as I know this will change over time and I may get infections or set backs but I can honestly say if you looked at me.you wouldnt know id jusy had this done (apart from the drains im carrying around with me!) The drains are the worst part. Get them removed on friday hopefully.
diamond lady- I was shocked when I went to the loo after the op and it was blue too!
VSK- Good luck with everything. Let me know how it all goes. I was so scared about all this but its far worse in yourmind I now realise. I still have my final results to come but will deal with that when I need to. Just glad the ops behind me :slight_smile:
Take care all and thanks for your responses. They have really helped.me tremendously through this tough time
x

Hi I was diagnosed with 7cm high grade dcis this may and had to have left breast mastectomy and I’m 32 so your right it’s a complete shock. I have a friend who is having both removed due to history in the family and I think only you can decide but your thinking of it for the right reasons ie your children. I have my gene test too but the worry ill get it in my other breast makes me think I should have had both removed. My recovery afterwards was not as bad as I thought for the first week make sure you have someone who can help you dress and undress and get some baggy t shirts for ease and getting on and off xxx

I am 61 years old diagnosed with DCIS three weeks ago I have an appointment to hear the treatment plan this thursday Require total mastectomy because pre cancer in two areas
I really would prefer a double mastectomy to eliminate the risk of future breast cancer but been told this will not be considerd. WHY when they offered me reconstruction which I dont want to me this seems like I do not have a choice Like you I know How lucky I am at this being found early but I want to limit future risks I also have ME and Fibromyalgia long term

Hi Magsim

Welcome to the BCC forums, I am sure you will soon have lots of support and shared experiences and please also feel free to call our helpliners to talk any concerns/queries over, our team are on hand weekdays 9-5 and Sat 10-2 on 0808 800 6000

Take care

Lucy BCC

Hi Laura

I am 58 yrs old and having a double masectomy this thursday,I have early stage DCIS,I have been told I do not have the bracs gene,but could be carrying a rouge gene,as I had hysterectomy twice,one when I was 27 yrs where they removed my womb and bits but left my ovaries(which I wish they had not) due to the fact in 2007 had to go through it again as got two further tumours attached to ovaries so out they came,then from that op a year later had to have hernia op to repair damage from previous op as walls were thin due to being opened in same place. And due to the fact my mum died with breast cancer 7 yrs ago and aunt 6mths befor with the same and great aunt and gran  years befor them say’s it sure does run in the females in my family,so I decided along time ago if I got any form of breast cancer I was having mine removed,my surgeon agrees with me,as mentaly and physicaly it would be the wises descision I could make. I feel great relieve to this decision.