7 Months Post Op for DCIS High and I am not further forward.

I was diagnosed with DCIS High, I had a surgery, but they were unable to get a clear margin. Therefore back for more surgery a few weeks later, still no clear margin.

I was shocked and my consultant was upset for me. I then had a choice, full mastectomy or full mastectomy and reconstruction. Using a silicon breast implant. Given all reasons why or why it may not be stressful to consider. I felt toren.

Then my consultant gives me further option that I could get a Deip Flap Reconstruction. ( This is using other parts of my body to use for the reconstruction  less likely of rejection). 

Although my family and consultants where pushing me to go that way, I felt worried, 10 hour operation, high risks involved. 3 to 6 months recovery. 

Finally both consultant got together and the decision was made to have it done, subject to test etc too see if I was eligible for that surgery. Donor arteries blood flow etc etc.

Results back, got the all clear to have it. I was never so scared of anything in my life with such high risk factors.

Booked in hospital day before ( the worst filthy hospital in all my life and staff were so rude and no very caring).

Came of the operation in a bad way, I was totally traumatised and still am 7 months in. Recovery slow, I am in pain 24/7. My walking is effected badly. I feel I have been kicked between my legs. Am weak and have no quality of live at all. I have aged 10 years over night.

Got my results after the operation, to be told I also had a secondary grade 2 invasive cancer in the same breast as the DCIS High.

My breast now has 3 lumps, consultant doesn't want to know now. So back to my orginal consultant. Waiting on a ultra sound scan, its been 2 weeks now. 

I need to find out whats happening. I have a bad gut feeling something is wrong.

I would never ever recommend that surgery to anyone. Although its saved my life, my life it has left me with a bad disability.

My journey has not been a walk in the park. I am on tablets for 5 years. My yearly review is coming up next month, am scared, frighten of the out come. 

  • Oh poor Lillybet, it certainly hasn't been a walk in the park for you I was so sorry to hear you have had such a bad experience and that the operation has been really hard to recover from and that you are still struggling  to walk and are in constant pain. I hope that the doctors will be able to prescribe something to alleviate these awful side effects you have been experiencing since having the surgery. You are right to keep going to the original consultant so that you can get these three lumps properly investigated and I hope you won't need to wait too long for that ultrasound. Hopefully you get some definite answers soon.

    I hope you don't mind but I have added the words 'DCIS High' to the title of your thread. This will allow other members who have been affected by DCIS to spot your post more easily.

    Hopefully you will connect with others here who have had the same kind of surgery and I hope you will enjoy chatting to others here who understand what you are going through at the moment. I thought I'd mention [@Jolamine]‍ who has I think been in a similar position before as well as [@Jan1972]‍ who was also diagnosed with DCIS and whose story you can read here.

    I hope your yearly review next month goes well. Keep us updated if you have a moment.

    Best wishes,

    Lucie, Cancer Chat Moderator