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JoAyers's avatar
JoAyers
Member
9 years ago

Double Mastectomy Feb 15 - Grade 2 /12mm invasive carcinoma May 16

Hi,

Since October 14, I have been on a journey. Discovered fairly large amount of DCIS right breast in Sept 14

Removed in November 14  - result  not a big enough margin, suggest mastectomy.

Decided to have a double mastectomy  Feb 15  resulting in something reacting greatly with my liver, we never found out what it was but liver functions were in the 700-800's. Hospital for 14 days due to these complications and the drains taking sometime to settle to a level that they could be taken out. I also had the flex attached to my muscle, which I believe is the reason the drains too so long to settle down. Discharged and within a week I had a blood clot in my right calf, needles daily the tablets and stocking for 7 months. July 15 expanders removed and implants put in.  August left breast became infected and back to hospital for its removal, left out for four days and new implant put in. October I was going overseas and I wanted to make sure I wasn't going to get sick while I was away, so I had a full body scan to make sure there wasn't any hot spots. All good, Great Holiday. 5 months later, I am back into life completely working and I notice a small lump below my nipple on my right breast at about 6o'clock. WIthin days I was at my specialist and she was more than sure it was scar tissue. So we waited 6 weeks to see. I had a fine needle biopsy which came back 'a typical'. I had  the lump removed a week later under local in theatre as I didnt want to upset my liver as I have nearly got my liver back to normal. That was interesting.

The result stunned by doctor and me even more, she said I was in the 2-3% of people that have a double mastectomy for DCIS and within 12 months have a Invasive carcinoma. I am on Anastrozole for 5 years. I was negative to Her2, that took 2 weeks to come back negative. That waiting is horrible.

Now I am going to gym 2 times a week and walking as I have had a bone density test and I'm not as good as I should be and I was also low in Vit D. I am taking daily Calcium and Vit D and eating well.

Do you know If it is possible to improve your bone density while on this medication or am I just trying to maintain it?

Also I have another worry, because I had breast sparing surgery and the expanders where put in after they took my breasts away, I am worried that I could have cells up with the implant and muscle that cannot be felt?

I will ask my doctor next month, but I just thought about that recently. 

I have been on the drugs for 2 weeks with minimal side effects so far. I am tired but that could be just living life.

I was shocked to get that result and I know there are a lot of ladies much worse than me but I had to vent and to ask if there is anything I should be doing or not doing.

thank you

Joanne

dcis
mastectomy
  • primek's avatar
    primek
    Member
    9 years ago

    For some reason the entire link hasn't  connected. You may need to copy and paste.

  • Lindyloo's avatar
    Lindyloo
    Member
    9 years ago

    Omg, you have been through the mill!

     I can't say much about expander etc because I didn't have that.

    regards your bone density, not sure how old you are? But bone density will start to decline rapidly once you have hit menopause. Having chemo put me straight into menopause and unfortunately I have osteoporosis and broke a vertebrae and rib just by turning over in bed. I'm now on 1200mg a day of calcium with vitimin D and have just started on Prolia. NOT A BIG FAN OF THAT, if you read about the side effects.

    walking will strengthen muscles and generally be good for you but someone mentioned jumping which is also very good. Dancing is another good exercise along with playing tennis. Eating a diet with fish, eg, salmon, sardines, also leafy greens and eggs etc would definitely be beneficial. Don't leave it too late like I did and end up with fractures. 

    I wish you well, look after yourself,

    linda xx

  • primek's avatar
    primek
    Member
    9 years ago

    Also...re bone density. Perhaps see an exercise physiologist who could look at a program for you. I know new research suggests exercise that involves jumping makes a huge difference in bone density.

  • primek's avatar
    primek
    Member
    9 years ago

    Because the expanders are behind the muscle they actually make finding abnormalities easier. So still do breast exams and remember to feel your nodes in armpits too. It is difficult with scar tissue at times . I am unsure about scans but think an annual ultrasound instread of mammogram might be in order. I would ask the medical team when you next see them. I know research has shown no issues with reconstruction and recurrance. Hope this helps. Kath x