Dcis high grade, mastectomy

Hi everyone and thank you in advance for helping me sharing your experience and comments.

I am 36 years old, and just been diagnosed with an high grade DCIS.

Many relatives had cancer on my maternal side ( both my mother and my aunt, my mother's sister, had breast cancer in their late 50's, my mother died of a secondary bones cancer). For this reason I have done the DNA test, and I am now waiting few more weeks for the result.

I spent the last months, from August 2019 to try to find out the reason for a small blood discharge from my right nipple noticed only once by coincidence while having a shower, I have done many times eco and biopsy, but nothing never came out and everything seemed to be fine. In october I have done a cytologist test on a sample of blood, and as result it came a C3, atypical probably benign.

I had a lumpectomy done in November 2019 as doctors thought I had an intraductal papilloma, but they found instead it was a DCIS of about 2 cm. After that, a mammogram showed an area of about 10 cm of microcalcification, and a stereotactic biopsy confirmed it. The  consultant booked me in for a mastectomy, plus they will take the sentinel linfhonode for testing.

I have asked for a double mastectomy, even if my left breast it seems to be clear, and the consultant referred me to a psycologist.

I do not have children yet but would like to have at least one in the very future, always thought I would have breastfeed my child, but I have asked for the double mastectomy to try to stay safe. I am aware that a diagnosis in young age plus the familiarity could increase a lot the chances to get again cancer in future in a more aggresive way as well, and this is the reason of my decision. I have  been lucky already to found my cancer at a very early stage, and do not want to risk thinking about the future.

I am not probably going to be positive to BRCA1, as recently found that both my mother (few months before passing away, nearlyl 10 years ago) and my aunt both did the test and were negative, but I do think we got some other kind of mutation that is still not known.

 

Did anybody, with no BRCA1, do a bilateral mastectomy in young age, even if one breast was fine?

Thank you, Antonella

 

  •  

    Hi Antonella,

    Welcome to our forum. I am sorry to hear about your symptoms. I was a lot older than you when I was diagnosed (60). That was 10 years ago. We seem to have had a few similarities on our cancer journeys. I started off with a lumpectomy in 2010, then had a double mastectomy the following year when a new tumour was found in the same breast. About 6 months after my first surgery, I discovered a lump in my other breast, but fortunately this was benign.

    When my surgeon told me that I needed a mastectomy, I asked if it wouldn't be safer to have a bilateral mastectomy. He agreed straightaway. I was never referred to a psychologist, but I understand that this is the usual protocol for people having a double. Unfortunatelly, I was not a candidate for reconstruction, due to previous non-cancer related surgery. I found the bilateral mastectomy so much easier than I had imagined and, the healing was quicker than it was with the lumpectomy.

    I lost my mum to secondary breast cancer 10 years before I was diagnosed and, it is unbelieveable to see the difference in the diagnosis, treatment and after-care which she received and that which I have experienced.

    If you want children at a future date, have you discussed freezing your eggs before you have surgery? It is a good idea to draw up a list of questions for your consultant each time you consult him/her. I am sorry to hear that you lost both your mum and your aunt to this disease, but hope that you too prove not to be BRCA1 positive. It is good news that you have caught cancer early and are now doing something about it.

    I have never regretted having a double mastectomy. As soon as I came to after surgery, I felt that I had done all that I could to take all of the cancer away. Because I didn't have reconstruction, I had to experiment with different types of prostheses for different activities. This was quite a learning curve, particularly for swimming and I did have a few embarrassing moments, but I think that I've got to grips with them now.

    Are you all prepared for hospital? You will feel it handy to have nightwear that opens down the front when you are in hospital. It can be a bit sore to lift clothes over your head to start with. It is also handier when doctors and nurses want to examine your wounds. It is also useful to have a small heart-shaped cushion to place under your arm when trying to sleep. I bought 2 because of the double, but in the event, I only needed one, as I could only use one at a time.

    If I can be of any help to you, I am always here. Please stay in touch and let us know how you get on.

    Kind regards,

    Jolamine xx

  • Hi, this sounds quite similar to the situation I find myself in now, but I haven't had surgey yet and not sure what to do... woudl you mind telling me what happened in teh end? hope all is well, x

     

  • Hi. At the end I was not mutated, but still I had bilateral mastectomy with reconstruction, I have lost both nipples. They found a very large DCIS, about 8 cm, but there was also a 2.5 cm G1 ductal carcinoma on the right breast that they couldn't see on the mammogram, and on the left side there were benign alterations. They were not sure about chemio because my linphonodes were clear, but Her+++. At the end they decided that chemio wasn't necessary in my case, but I am now under ormonal therapy with tamoxifen. If I could go one year back, I would take the same decision probably. Good luck with your journey