@lee2 I haven’t had reconstruction but I had a double mastectomy four weeks ago for IDC and DCIS in right breast and DCIS in left.
I initially had wanted immediate reconstruction but there was a nine week wait so I elected to have the surgery first. I had thought I would look deformed and hate how I look (I was a 34GG before cancer) but I absolutely love it and I am definitely not going to go for reconstruction. I may look at getting prosthetic for the rare time I wear something that would benefit some curve but otherwise I’m so happy with the result.
I was initially so scared but like much of the treatment, the fear is the worst.
Good luck in whatever you choose xx
Hi @lee2
Sorry to hear that the lumpectomy wasn’t successful it is devasting and confusing news to receive having been through this myself.
I would say DCIS is contained in the milk ducts so non-invasive to the rest of the body (although I know that won’t stop you from worrying) so while they want to get it out quickly there is time for you to make an informed decision.
I mentioned previously in this thread that I had DCIS in both breasts and this resulted in me having a bilateral mastectomy and a DIEP reconstruction using my own body fat, with which I couldn’t be happier with the results and the scars are already starting to fade 4 months on.
The reconstruction does draw the timeline out, but it was worth it and my MDT (multi-disciplinary team) weren’t concerned about the timings and made every effort to ensure the operation happened in a timely way. My initial diagnosis was Oct 2023, first lumpectomy 3rd Jan 2024, re-excision 1st Feb and then bi-lateral and DIEP reconstruction 22nd April 2024. The mastectomy & reconstruction does require more planning and coordination as it is 2 operations in one and mine was delayed by a couple of weeks due to my self-electing to have a mastectomy of my left breast due to the previous cancer in 2020. They will most likely want to do a sentinel node biopsy to ensure that the nodes are clear my surgeon explained this as good practice with DCIS but didn’t expect to find anything there. The operation was a great success and I have been discharged with the all-clear from the cancer unit.
I am happy to answer any questions or concerns, here or PM me on this platform.
Remember it is your body and your choice, I did lots of research before going ahead with the DIEP and it has proved right for me, but it isn’t for everyone, just think about what is important to you and don’t be swayed by others it is a difficult decision.
Thank you for your message. It’s good to hear that your results are so good. That is encouraging for me.
My situation is quite similar to yours. I had DCIS (3mm low grade) in right breast in 2023 and in left breast (2.5cm intermediate/high grade) this year. However, I am particularly worried that they found the DCIS was 2.5cm during operation (but on mammogram, ultrasound and MRC they all show 3mm) and also, the margin is not clear. So I was thinking of having double mastectomy & reconstruction using my tommy.
I met the plastic surgeon on Friday. But he was not keen for me to have the mastectomy & reconstruction. He said it’s a 10 to 12 hour surgery under general anesthesia with a 6-8 week recovery period. There are going to be scars on tommy and breasts and they will not go away. In 10-15% patients their scar will be infected (or even open up) and need further operations. For my DCIS, margin re-excision and radiation therapy would be a better option for me. Basically, he felt a big operation for my DCIS is not worth it. I am now confused and afraid.
If I don’t have mastectomy, my worry is that cancer cells/DCIS may not always be detected by all the imaginings. Even I have annual mammogram I may still miss it.
In your case, as you already had margin re-excision, why did you decide to have mastectomy?
What are the sizes of your GCISs?
@lynnc123
Thanks a lot for replying me email. I am still waiting for operation. Your DCIS in both sides, did they happen at the same time or over a few years? What are their sizes?
I am confused. The plastic surgeon I saw on Friday told me that with DCIS (2.5cm left side and last year 3mm right side) like me I should have re-excision to take more margin and radiotherapy, rather than double mastectomy + reconstruction. I don’t quite understand.
I was diagnosed with an invasive tumour which looked 3cm in ultrasound and they were going to do lumpectomy and radiotherapy. The team then immediately went back and looked at my mammograms and ultrasounds and saw some areas of calcification on both sides which they wanted to check out via stereotactic mammogram - these areas looked really small and they thought they were just calcification but turned out to be DCIS.
So because there was now and IDC and an area of DCIS in the right breast so they recommend mastectomy due to the ‘extent of changes’ in that breast.
They offered me the option of lumpectomy in the left as it looked like just 10mm of DCIS but I went for the double and the team said they thought this was the best decision.
In the end it did prove correct as the small area of DCIS in the right turned out to be 50mm and the 10mm in the left turned out to be 60mm with two tiny invasives of about 3mm - so they would have not got the margins and I would have needed another op anyway.
This all happened at the same time.
They took three sentinel lymph nodes on one side and one on the other and they were clear so just started letrozole with a calcium and vitamin D supplement.
It isn’t an easy decision to make and I struggled, particularly having had such a quick easy treatment path in 2020.
With my DCIS it was High Grade so had more changes to a normal cell and faster growing, than the intermediate or low grade, so my surgeon and MDT were keen to remove it all. This year I only had one re-excision and this did successfully remove all the cancer that had been identified in the mammogram and tests, but when the re-excision was done I agreed to a margin shave as one of the other margins didn’t achieve the recommended 2mm clearance. The area they shaved identified more high-grade DCIS in the pathology results which was identified as occult DCIS.
The new area of DCIS led to the MDT (multi-displinary team) recommending a mastectomy. However, if I had wanted my surgeon would have done one more re-excision, she felt this would be investigatory with a very low % of being successful. I would say that if there had been a chance of it being successful I would have preferred to keep my own breasts and gone ahead with this.
With regards to the sizes of the DCIS I had this time were initially small with the initial area being 4mm, but it was all high-grade and previously in 2020 it was 50mm so a very large area.
The DIEP operation is a big undertaking, I am in my early 50’s and generally in good health, I was a bit overweight with a BMI of 27.5% so had ample tissue for the operation. My operation was just over 10hours, but I was advised that it was a low risk surgery and the length is due to being 2 surgeries in one. As with any surgery there are risks and I did have a temperature spike a few days after going home but reported this to my plastics nurse and was immediately seen and put on antibiotics and all my dressings removed. I wore minimum support garments and was never warned there was a high chance that the wounds would split, I was very careful and followed the instructions given to me by my team.
There are pro’s and con’s with each option but I would say if I could have kept my own boobs, with sensation by having a 2nd re-excision that would have been my preferred option. But, I am thrilled with the results of the DIEP and the scaring really isn’t an issue as I know it will fade, but I don’t have sensation in my new boobs.
PM me if you want a chat, as I do appreciate this is a big decision and not easy to make, or phone the nurses at Breaast Cancer Now they are great.
Hi @elka,
Have you had the operation? Hope it all went well. What are the size and grade of your DCIS in both breasts?
Mine are 3.5mm to the right and 25mm to the left. Left didn’t get clear margin. So need to decide what to do next. Really worried
I don’t know the size of the tumours except there was a large one in the right breast. I just wanted them gone and once we’d decided as a family that was the best way forward I am now 2.5 days post op and feel fine ( apart from tiredness some days). The exercises have been painful to do but now are easier and I’m wanting to do all sorts of things. I walk about 20-30 mins a day and feel good. I do not regret having surgery and very pleased with the scar just a thin line midway across both breasts. I will probably have silicone prosthesis to put in my bra if I choose to wear close fitting jumpers or tops but otherwise I wear loose fit tops anyway and it doesn’t bother me. I go for results in the next week so fingers crossed but I am confident if there is any spread they will deal with it. Try not to worry unduly make ur mind up which way to go talk it through with your breast nurse and surgeon or ask Breast Cancer Now to be paired up with ‘someone like me’ who is similarly going through what you are or has been through it all and I’ve found very empathetic and helpful to talk to. X
How are you doing? Be kind to yourself post operatively.
If it was me in your situation, I would ask for a second opinion. The surgeon may be confident they can get it all out but what happens if they can’t? mastectomy ? (don’t want to be a Debbie downer but it’s possible) or would you be better of with a mastectomy now and be able to ‘Move Forward’ ( it’s a great course for anybody finished surgery/chemo/radio) Would you want multiple operations or just another one?
You can call the BCN nurses and talk through your options and second opinion. Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small
Moving Forward: Finishing treatment can be hard, and it can be difficult to move forward with your life. You can access our support online or face-to-face. Our online information hub and Moving Forward journal provide extra ideas and information. Courses run over 2 weeks, with 2 3.5hr sessions. Or trained facilitators and volunteers are there to help. Find a course near you.
which was identified as occult DCIS.