I had a little bit of fluid seeping from my left nipple which was brown in colour so I went to see my GP. She referred me to the breast clinic. On Friday the 13th October I had a mammogram, ultrasound and biopsy. They also put in a titanium marker.
I returned to the breast clinic for the results of my biopsy and was told that I had low grade DCIS. My surgeon told me that I would need a minor procedure. She removed a DCIS size of 38 x 35 x 28mm of tissue with the incision made just below my nipple.
2 weeks later I returned for my results. I thought that would be it but oh no how wrong I was. Three of my margins were clear with one not. Her advice at this point was to have further excision or complete mastectomy. Obviously I went for the first option and I was also told that I would need a course of radiotherapy.
Surgery complete and 1 week later, results day. Margins still not clear so that afternoon I was looking at images of breast reconstructions whilst sobbing my heart out.
I was told that if I was going to get cancer then this is the one to get! Brilliant!
I’m now faced with losing my breast as the treatement for DCIS is surgical. I was under the impression that my “treatable” cancer was a breeze. I’m emotionally drained because the prospect of losing my breast is inconceivable and I believe it very extreme.
I’m sure there are loads of ladies on this that are in the same position so your comments would be greatly appreciated.
I have an appointment tomorrow to ask questions and go through reconstruction methods (by the way I’m looking at DIEP so comments on this would also be welcomed).
Sorry to hear you did not get the results you anticipated, it is a shock & a lot to get your head around.
As you’ve seen here, there are many others who have been through this, I did not need a mastectomy, but I’m sure one of the others will be along shortly to advise.
It might also be an idea to look at ‘surgery’ in the ‘going through treatment’ thread, where you will find others going through similar.
I am sorry to hear that you are facing this. I really struggled emotionally with the decisions and the resulting outcomes when I had to decide what to do with my high grade DCIS in May of this year.
After a lot of research and chats with my understanding sisters, I opted for a mastectomy from the get-go. I knew that mammography could underestimate the size of DCIS when compared with reality - my DCIS was large, 38mm on screening but 50 mm when removed. Having a mastectomy does sound extreme but for me, to remove this via lumpectomy, even if they got it right first time would leave me needing some form of reconstruction anyway plus symmetry work on the good side. I was also worried about recurrence and good margins are an essential part of your defence in this battle. A good cosmetic outcome and risk aversion were my drivers towards having a mastectomy. Once I had worked through the emotional fog and got my head around this, I was lot more comfortable with my decision.
I opted for a DIEP/muscle sparing TRAM reconstruction using my abdomen. I was not a good candidate for an implant plus I wanted a ‘once only’ reconstruction. Some implants have a life span and may need replacing in future years. I had my op 6 weeks ago and I have to say that I am really pleased with how it has gone so far. Sure, you cannot ignore how long an op it is, but I have luckily bounced back really quickly and I have healed well. I am now itching to crack on and to resume my former active life. Moreover, I have a lovely looking boob, just a shame about the other side! That will get sorted sometime and would have needed doing whatever option I had chosen. I have no regrets.
That’s my story. Back to you. Have you considered getting a second opinion? I have previously read here on these forums that some ladies have had three attempts at getting clear margins. It might be worth seeing if this is possible for you. I hope your appointment goes well tomorrow, if I can help any more, I (and others) will be here.
P.S. I should have said that I had a skin sparing mastectomy although I opted not to keep my nipple just in case my DCIS was too close for comfort. I look at it this way, it’s still my old boob, just a change of stuffing! X
Sorry you find yourself here. I had a mastectomy with immediate implant reconstruction a week and half ago. I was diagnosed with DCIS in October and it’s been a whirlwind of scans, tests and a million questions. I was told from day one I needed a mastectomy as it was so widespread, like you it was inconceivable. My advice is to ask A LOT of questions and get it all clear in your mind. Like Ezzie said you’re also in your right to ask for a second opinion.
As the weeks have gone on and I’ve hit different phases I’ve found I’ve felt very differently about recon, treatments etc than I did at the start. Maybe because I kept getting so much more information.
For me DIEP wasn’t an option - I’m 33 and want another baby so I opted to leave that area alone for now.
Write all your thoughts and questions down and go through them all with your surgeon and nurses, don’t be afraid to ask anything! Good luck
Sam x
Hi Alison. I was diagnosed with high grade DCIS in september last year. It was 29mm and i had a wle. Clear margins on 3 sides so had a cavity shave where they managed to get the 4th clear margin with 0.5mmto the skin so they said that was fine and i had 15 lots of radiotherapy.
On 3rd august this year and my first post op mammo they found more calcifications and did biopsies. Results on 29th august showed in the benign calcifications i had a small invasive cancer.
I have now had 4 lots of chemo with 3 to go and when treatment is finished i will have a masectomy.
I am doing ok but really wish i had been given the option of a masectomy last year as it might have avoided this.
I know that this is all so overwhelming for you but i am sure your team will be doing the best for you to achieve the best long term outcome. I am sure too that they would not recommend a masectomy if they did not think it was necessary.
As far as reconstruction goes, listen to all.9f tye advice given on here then choose what you think is best for you.
I’m in a similar boat, diagnosed 26th October with DCIS and opted also for DIEP. I will be admitted tomorrow with the surgery planned for Thursday.
It’s important you choose the right reconstructive option for you - I was offered no reconstruction, implant, using my left lat muscle, or the DIEP. I chose DIEP for the reasons mentioned below: 1 time fix, longevity and it’s the most natural option. Dare I say it, there’s also the “bonus” of a new boob and a flat tummy in one!!
I was also told that with DIEP, there was no impact on my ability to have children later in life as it was one of the first things I asked about. I have no kids and I’m 30 years old.
Either way, make the decision for you, and only you. Ask lots of questions. There is no such thing as a stupid one :)
Thank you all for your well wishes, comments and advice.
I had an appointment with my consultant today. My DCIS isn’t low but intermediate and after two “minor” ops I have had approximately 8 cms removed and one margin not clear.
My breast nurse put me in contact with a lady who has been through a similar process and speaking with her has really helped.
Also reading your comments on this site has also helped. However, I’ve just spoke to my mum and no matter how old you get you still need your mum (I’m 48 by the way).