Hi, I have just been told I have high grade DCIS in r breast and need a mastectomy early May! I am in shock. Reading a lot of the posts here I can see there are many women going or gone through the same. I feel numb and bewildered. I have read loads now and am having to decide whether to have reconstruction or not. Pros and cons for both. Wanted to hear what others say. Apparently you can have silicone or saline, nipple saved sometimes. Do they balance them out so they match? What about rejection/infection/leaking? So many questions, just so shocked 
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Hi,
I was diagnosed in Feb 2025 with high grade DCIS. I had a lumpectomy so canāt advise about mastectomy Iām afraid. I had 5 sessions of radiotherapy but you may not need that.
Recovery from both was easier than I thought. Mentally it takes a toll more.
I am still in shock over a year later tbh.
Keep asking questions and message me anytime. I will help if I can or just be a listening ear
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I can imagine you are in total shock. I too had DCIS high grade back in 2022. Because mine was contained within the duct I too only had to have lumpectomy and 5 days of radiotherapy, so clearly yours is presenting differently to need mastectomy. Iām really sorry to read this.
If it is any consolation I am back in Cancerworld again 3 years later. I developed HER2 +ve BC which is āin the skinā, so there was no lump. This has resulted in a mastectomy which I had 10 days ago. Youāre right, it is such a big decision to make at a hugely stressful time.
Iām sorry I canāt give any advice regarding reconstruction as I opted to go flat, but Iām sure there will be lots of people who will be able to offer you their experiences and advice.
I just thought I would share my story because while this might feel really radical for you, the long and short of it is that I sort of wish theyād done mastectomy 3 years ago. Maybe I wouldnāt be in this position now if they had. That is something I will never know. Iām no expert, but my logic says that you are at least minimising the risk of recurrence by having the MX now.
I wish you well with it, and note that while the operation sounds very daunting, on a pain level it really is not nearly as bad as Iād imagined. I hope this offers a shred of comfort. xx
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Hi, wow I was so happy to see someone has replied as I have felt quite lonely since finding out on Friday. I am surrounded by lovely friends and family but I do not feel connected to them somehow as they have no understanding of it. My husband is so work obsessed and stressy I just want to be away from him at the moment unfortunately, so feel quite lonely.
Thanks for your reply. Sorry to hear what you have been through. It is amazing how prevalent bc is, I am shocked. What was radiotherapy like? I can imagine being in shock for a long time, it is such a quick diagnosis with quick treatment which is brilliant but leaves you still processing it all. It is a life changing experience really
Hiya. Radiotherapy is fine. Iām imagining if you have it that it will be just 5 days. I had 5 days and it was really a breeze. The worst part of it was the slog to the hospital every day.
The team are lovely, youāre in and out very quickly and if my radiographers were anything to go by, theyāre up for a little boogie to the music that was blaring out as you make your way to the machine. You might get a bit of redness, but there will be sound instructions on care and you might feel a bit more tired than normal. Oh and avoid direct sunlight too.
Sorry youāre feeling lonely. Youāve got an army of instant friends here though. We get it, weāre doing it and we know what it feels like. Friends and family can be great, but they donāt necessarily know what to do for the best. Weāll look after you. xxx
I had a diagnosis of high grade DCIS back in 2020. I had found a lump which a biopsy showed to be DCIS and the surgeon discussed a lumpectomy with me. However an MRI revealed further areas, meaning a mastectomy was the only option to be certain it was all removed.
I chose to stay flat afterwards so canāt advise on the reconstruction side of things. After surgery I didnāt need any further treatment.
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As Jaygo says if radiotherapy is needed itās really not bad at all. Just having to travel an hour away each day was a bit of a pain but they were all very nice.
I hope you feel a bit more supported and less alone now youāve joined the forum.
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Hello, I would just like to highly recommend going flat. Like you I was bewildered, time pressured and confused but when I was told about all the possible additional operations and risks with reconstruction I asked if I could have it later if I couldnāt live with being flat. Absolutely no regrets! I am very comfortable with how I am, some wouldnāt be, weāre all different. But, you can try it, you can experience being flat and if you donāt like it you can then have reconstruction. I wish you well, as others have said, you will likely look back and think it was not as bad as you had imagined. I hope it all goes well x
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Yep Iām with you @laneycass. Iām 12 days post op and actually rather like my flat side. Sort of wish theyād taken them both off now but I will be careful what I wish for. x
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Hi @jellykatbean its a lot to take in and process in such a short space of time. I was diagnosed with high grade DCIS in Jan last year and had a mastectomy.
I never wanted to go flat so it wasnāt an option for me when thinking about what I wanted to do. I went down the implant route and currently have a tissue expander (half silicone / half saline) which can be filled. Radiotherapy was part of my plan & as I didnāt want to go flat the tissue expander was the best option to reduce any potential damage from radiotherapy.
I love my expander, and have had no issues with it, even after 15 rounds of radiotherapy. I will have it switched at some point for a permanent implant but for now whilst everything heals from radiotherapy Iām really happy with it.
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Hi
Not sure if this will help or make you more unsure. I was diagnosed with medium grade DCIS in July 2024, had lumpectomy but margins not clear so mastectomy advised due to size of DCIS.
I knew I did not want to go flat but the decision re reconstruction choice was painful, so much information, so many pros and cons. My advice:
Buy a big pad and draw a table with pros and cons, and think about which ones are more important to you. Iām a size 34b so wanted a natural look to match the other side.
Ask the breast cancer nurses to show you pre and post pictures of both options to help your decision, preferably pictures of surgeries your consultant has done.
Use breast cancer now someone like me
Ask if there is an option to keep your nipple? I did this and glad I did, it doesnāt have the same feeling but looks the same
Re implants ask to see them as there are different shapes,
Ask to be put in touch with someone who has had similar surgery with a similar breast size (this is important as I got to see a lady with DD cup and the outcome was very different)
I opted for teardrop implant, as BRACA results not back and only enough fat for 1 Diep flat reconstruction. I had surgery in Oct 24 and unfortunately I have been in pain and discomfort ever since. The implant rippling is very visible and it feels like the implant is rubbing me from the inside.
Iām due to have implant out later this month and have Diep flat, keeping my nipple hoping my body prefers my own tissue. This has been hard decision as donāt have crystal ball and it may not be better, but hoping it will, I cannot live with the implant.
I canāt offer much advice on Diep as I have t had it yet but I did meet with a lady 11 weeks post surgery and her results were very natural if you can accept large tummy scar.
things to consider with implant:
It will need changed at some point in the future
I was told by nurse they have more post surgery complications with implants compared with Diep?
It is cold to touch and stands to attention compared to other side, I find it uncomfortable to lie on, however to look at apart from the rippling it looks ok.
If you sunbathe it gets boiling hot!
I think I have been unlucky and lots of women love their implants but wanted to give you an honest view.
Happy for you to contact me individually if I can help with more detail
Sending you a hug as the decision making is so difficult, get as much info as you can to make an informed decision then go with your gut, I donāt think you will ever be 100%, Iām certainly not. Xx
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Hi, I had DCIS which was wide spread and had a mastectomy 2 year ago. I also had a breast reduction at the same time in remaining breast. I went from 38F to 38C and was difficult to get used to at first, once the dressings were removed I used to look at myself daily to get used to the new me. I had a nipple sparing expander implant which remains insitu. I have no rippling and 2 year on it is not as uncomfortable and Im not aware of it constantly (looks good too). I have loss of sensation in both nipples and my implant side is cold and hard to the touch. Im pleased I had the implant but it hasnāt been easy to come to terms with. Ask your surgeon lots of questions. I hope this helps, feel free to get in touch if you need to ask me anything x
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Hi Jellycatbean. What a great name! I am an art therapist at cheese pickles studio so we make a great pairā¦as well, sigh, I will be having a right side mastectomy this coming Tuesday after the Easter bank holiday. I have had 2 breast saving surgeries but the second came back with no clear margins for DCIS so like others here there is no other choice. I pray that it has not reached the lymph nodes. I will have a sentinel node biopsy during the beast surgery and then the long wait for the pathology results. But I have made peace with that wait as the more I worry and fear of what is next I weaken my body for the healing that is taking place in the moment! So each day is what it is and keep the joy! I have chosen to go flat for sure because I dont want to have any complications that could have be knowingly avoided. But every decision is personal and right. Today a lovely woman for Boost.. they make the mandala breast formsā¦ is calling me today to explain their fitting process. All good wishes, I am so thankful that I found this forum and it feels good to know that the exercises that we all do are from the Breast cancer Now pamphlet.
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Hiya. I had the same shock diagnosis at the end of January and I opted for immediate implant reconstruction. I had high grade dcis over too large an area for a lumpectomy to be an issue. Im also quite slim so an implant would be my only option for a reconstruction and they might struggle to harvest skin from another site if Iād gone down the mastectomy and reconstruction at a later date route. My radial margin was a little below what is required so I have an appointment with oncology in around 10 days time. Im hoping it is close enough to not warrant radiotherapy as that might cause capsulare contracture to the implant. I decided to opt for immediate reconstruction as I wanted to have one surgery only one scan. Im 6 weeks post op and healing well. My new girl looks fabulous albeit with a scar where my nipple was. I do plan to get a tattoo when Iām fully healed. My mindset once I got over the initial shock is that Im so lucky it was picked up through a routine mammogram before it became invasive breast cancer. I hope this helps you to feel better about your own diagnosis.
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Hi @jellykatbean - so sorry you find yourself in this position. I was very similar initially - widespread DCIS requiring a left mastectomy. And also found the decision making re reconstruction challenging. It was made simpler eventually when after a three week wait to see a plastic surgeon I was told an implant was my only option because of previous abdominal surgery and shoulder issues. I never wanted to go flat and my breast surgeon was keen that I have immediate reconstruction rather than wait. Gone from a droopy 34F on one side to 34D on the other. But in a bra or (normal) swimsuit you canāt tell. In look or feel when naked is it like a normal breast? No - but not in any way Iāve found a problem. And perhaps I was lucky but had no post surgery issues either. I had a drain for two weeks but honestly I didnāt find that too much of an issue - pop it in a tote bag and youāre fine to go for a walk/to the pub etc. I donāt like my uneven appearance when naked and I am on a waiting list to have a reduction to the other side to even me at - you can expect to wait two years unless you go privately. When thatās done Iāll get a 3D nipple on the implant (they are amazing). Never once regretted my decision but everyone is different and youāve had lots of responses from women equally happy to have gone flat. Good luck with whatever you decide!
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Hey - been a few days since you posted, just wondering how you are getting on and sending best wishes. x
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Thank you for your advice, there is so much to consider and take in. Life changed overnight!
Thank you for your reply, very helpful. Sending you lots of positive energy for Tuesday 
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Hi, thanks for checking. I am good thank you, I have hit it hard and spent the days since diagnosis reading, learning and planning. I feel much more positive now, I am incredibly lucky to have been picked up early. I have put my mind to āme first modeā and it is helping enormously which reveals how I was not doing this previously! I think women are coded to put everyone else first, now and from this point forward, it is me. I saw a saying the other day - ā I am not against you I am just for meā. Doing this has meant slowing down and going at my pace and saying no, I want to conserve my energy and be the best I can ready for the weeks and months ahead. X
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