Hi,
I was diagnosed with low grade DCIS in Sept & had lumpectomy in October, results came back that it was still present on 3 sides so end of November I had a re-excision and today found out that the margin on one side still isn’t clear enough. In total it’s been ~60mm so far but thankful still non-invasive but none of this showed on mammograms’ or US.
Have now been given the choice of a third excision or mastectomy. I’ve been reading lots this afternoon but still don’t feel any closer to making a decision. I’ve emailed the BCN with a list of questions but if anyone has been through similar would love to hear how you weighed up the pro’s and con’s. Thanks
Hi
I had DCIS and had a WLE, two further to get better margins and a fourth bilateral mammoplasty. This was a larger area removed at the bottom of my breast as there was no further tissue could be removed as it was so near skin and reduced the other side to match. I was apparently lucky that I had large breasts before this. For me it was important to keep my breast if possible. Another consultant (when mine was on holiday) advised a mastectomy was the only option after the initial WLE. My consultant/surgeon wasn’t very happy with what she had said and offered me options. His and my preferred was to go for clearer margins.
Everyone is different though.
Hope that helps.
K
Welcome to the forum, what a difficult position you’re in at the moment, was in a similar position myself however, my consultant felt that Radiotherapy would clear any debris left behind and this was the way forward for me. I’m so sorry I can’t be of any further help to you and to wish you well going forward, however, I’m not sure that this was the best outcome for me as I’m still quite concerned at times.
I do hope you get some reassurance very soon and able to move forward.
Firstly you are a very brave lady and you have been through a number of surgeries to gain your clear margins.
I see yours was low grade DCIS whereas mine was high grade measuring 30mm. I too was given both options and researched a lot to see what was right for me… I looked at both medical information as well as experiences of other women in my situation. In the end, my choice was quite straightforward… I knew that I didn’t want to put myself through multiple surgeries to gain clear margins, cope with the anxiety in between of it returning and so mastectomy was the route I chose. What I can tell you is that my experience was that it was far less traumatic than I had anticipated and the reassurance (as best as possible) was important to me.
I learnt that my type of DCIS has a knack for returning - and although non invasive, we know it must be treated with surgery.
Whatever decision you make, will be right for you and your team will guide you through the options of reconstruction if you want to look into that …
I had both invasive and DCIS so I opted for the Mastectomy. Afterwards they discovered that the DCIS had traveled all over the breast so I was never going to get a clear margin with a lumpectomy.
I’d ask if having a mastectomy now will mean that you don’t have to have radiotherapy and if you can have an immediate reconstruction.
Also a mastectomy means you won’t have to endure a mammogram on that breast.
My neighbor was diagnosed with the same thing as you… she had 2 excisions, only to find that margins still were not clear. She had the 3rd , and afterwards everything looked good. It’s been 17 years and she hasn’t had a recurrence yet!! I hope the same for you!!! <3
I had four areas of low grade dcis and before I was told that a mastectomy was recommended I knew that is wanted anyway. I just wanted the boob gone along with any thought of that devil still lurking! I wasn’t interested in having lumpectomy etc.
I had mastectomy with immediate diep reconstruction and had no problems at all. I would say that the recovery of my stomach was the most uncomfortable although no problems. My decision was whether or not to have reconstruction, not whether or not to have mastectomy because I just wanted it gone.
I hope you read everyone’s experiences etc and it helps you decide. Making decisions like this that r so personal to us is so hard. Even though I knew with regard mastectomy, I didn’t have much time at all to decide about reconstruction and was even asking my friends what they thought I would do if I could think straight😱
Lots of luck, and you will make the right decision for you💜
Thank you so much for your replies. It’s so helpful to hear other people’s experiences.
I’ve decided to take some time to get more questions answered by my doctors. For example when asked what my hormone response was they just said they didn’t test it in DCIS in my NHS trust. I don’t know if there’s anything I can do to now get it tested but I’ve got lots more questions that I’m still waiting to hear back about.
In the meantime I’m hoping to see another doctor at the end of the week. Not really for a second opinion as I know it is what it is, but don’t feel like I’m able to speak to my current doctor or get my questions answered and don’t want this decision to drag on and on.
Will hopefully know more in a week or so.
Thank you again xx
Hello, thank you for this comment. I think we might have similar diagnosis. I’m 36 getting care at MD Anderson in Houston, happy with my onco surgeon pick but she suggested at least talking to reconstruction team. About 5-6 on a list of ppl she seems on her surgery days. If I pick soonest available for both 6-8wks out, if I pick the one on the list that “spoke to me” or makes me feel good when I read about her, or it seemed my onco surgeon lit up when she wrote down her name…would you wait an extra 30 days for that surgery? 05/11/24 vs something early to mid April. Thanks again
I had low grade dcis 4mm …no clear margin…had re excisuon…told it was clear…5 year later i had recurrence of dcis in same breast, same side…this time high grade 3.4cm …wish i had oted for mastectomy 5 years prior…but we dont have crystal balls …no one knows the future …talk to your team
Thank you for your input. When going about the mastectomy, did you have delayed or immediate reconstruction? How soon did you go to surgery the second time?
HI …I didnt have any reconstution… prefeered to go flat…no regrets 6 years on.
When I went for re excision in 2012 the surgery was booked for 4 days after my histology results… 2nd time round , i got my biopsy results and was booked in for surgery 9 days later for mastectomy… that was 2018…im not sure how the nhs is fixed these days …but i count myself lucky i didnt have long wait
Hi, just wanted to give an update since others seem to be in a similar situation.
Still haven’t been able to see my NHS consultant (told on the 8th Jan that 3rd lumpectomy or mastectomy was needed but haven’t spoken to me since).
Luckily was able to get a private MRI as didn’t feel like I had enough info to make the decision and just as well I did as, as well as a the DCIS I was getting treated there’s a whole other section that hasn’t shown up on any other tests to date and would have just gone unnoticed until worse I presume.
Have decided to also get genetic test done as now I know it’s definitely a mastectomy as my next steps want to know if I’m better to just do double now than wait for issues later.
My NHS BC nurse and consultant haven’t called me back about the MRI results dispute numerous voice messages and emails. Was trying to get in and see them next week but just had a text that it’s cancelled due to the strikes.
Feel like private is my only option now
Hi, we are both in the same situation. It’s a nightmare isn’t it.
I have just approached my surgeons secretary to ask for a while longer to make the decision. I saw him last Thursday and had to give a final decision by this Thursday, for surgery next Wednesday. If I have another shaving in the hope of a clear margin and it is not, I don’t think my brain cells will cope with more anaesthesia… reconstruction or implant was not discussed.
Hello dear @whatnow this post was dated feb 19. I very much hope that today (May 3) that you have had responses and treatment by now. Thinking of you and big hugs
Hi, thank you again for your replies and asking after me. An update from me… After the MRI showed the DCIS was more extensive I opted for for a mastectomy and after a scare about bone lumps that showed up in a PeT scan(which thankfully isn’t cancerous) I opted for a double mastectomy with diep recon. I’m 8 weeks post op now and while it’s been difficult I’m so glad I did it. Now on tamoxifen and feeling grateful that I had options and stood up for myself in wanting more information before deciding.
I hope others who posted have had answers and progress in their treatment too since this first post.
So sorry that you’re having to go through this too. The decision making about the unknown is torture. I think the above advice about speaking to the BC nurse is a good idea.
Personally I will now always advocate for extra information before making decisions. Are there any other tests they can run that will provide a clearer picture of the best choice? For me an MRI eventually showed that the DCIS was actually throughout the whole breast and therefore a third lumpectomy would never have got to the end of it so a mastectomy was the only option. Whatever the result I feel more info one way or the other might help guide the decision
I Hope for a positive outcome for you and know that you can always reach out xx
