My journey

I was first diagnosed with DCIS 10 years ago. Unfortunately after 2 operations they hadn't cleared the margins so I was told I needed a mastectomy. This was a huge shock as it was the first time it had been mentioned, and all the way through I was told it was curable, so I thought one operation would be enough. I decided not to go for the mastectomy, but to continue to be monitored. Unfortunately after 10 years, this year I was diagnosed with invasive breast cancer, but the two tumours were still tiny, and there was no spread, so they tried to remove it all. Two more operations later, they found more DCIS, and guess what - they said I should have a mastectomy. But in view of what happened before they were happy to continue to monitor me. However, annual mammograms increase the risk of getting breast cancer. So it is a very difficult decision to make. I'm still thinking about it... Anyone else been in the same position? I would love to hear what you decided. LB

6 Replies

oldestnewest
  • I have to have my third annual mammogram after my breast cancer operation and am thinking about what to do, if to continue to have this radiation or ask for something else like an ultrasound or going privately for a thermograph. I have to decide pretty soon.

    I know someone in the States who is monitored for pre-cancer in-situ by having every six months once an MRI followed by a mammogram and once again an MRI.

    You are lucky that your lymph nodes are clear of cancer otherwise, you would have gone, I imagine, for a mastectomy.

    Don't know what to suggest to you.

  • thanks anyway. I would go for thermography, ultrasound and MRI alternating. Hopefully this will pick up most things. This is what I think I will do if I don't go for mastectomy. I've just discovered that Letrozole is a steroid. Don't know how I feel about that! Nothing is simply or straightforward is it? L

  • Don't know what is best for you but I wish you all the luck in the world, as always love and hugs coming your way.

  • Hi, my situation is not like yours at all so I am not sure I can help. But I had a mastectomy in March this year. Like you I was shocked that I needed that, plus chemotherapy and radiotherapy! But the mastectomy is not so bad. I could not have immediate reconstruction and have decided I won't have it anyway,

    I am 65 but please don't think I a m old! I am fit, young at heart and like to wear nice clothes... So getting the right bra that is also pretty was so so important. I hated the one I had straight after my mastectomy and struggled to find something comfortable that looked good..... John Lewis was the answer for me. ( there are other companies like Nicola Jane)

    A lovely lady at the Cambridge branch went to great lengths to fit me correctly with under wired bras ( not mastectomy bras) they are then sent away to have a pocket put in them ( about £8:00). they look great and feel comfy too.

    I was told I could not wear an underwire bra because of the mastectomy. I couldn't understand why as long as it fitted correctly and cleared my scar.

    I guess what I am trying to say is, don't put your life at risk or be afraid to go through with the surgery if that's what the medical team are advising. It took a bit of getting my head around but I got there!

    Good Luck and be brave!

    Linda

  • Thanks for your comments. Can you tell me what kind of prosthetic you have? I've looked at the silicone ones that go straight on the breast but they are heavy and a nuisance to look after. I've heard that ones that fit into a bra pocket often ride up. Have you found one that works for you? Thanks LB

  • Hi yes I have. It doesn't ride up at all but I am sure the bras I have help with this. My prosthesis has Cotten wool like stuffing! Much lighter then cottonwood though. It's a very light weight one as I found the others too heavy. It's an ANITA EQUITEX. Well that's what's on the box!

    Good luck x