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Barmyfarmers's avatar
Barmyfarmers
Member
11 years ago

Early days

Hello world, I am writing my first post here in a wave of emotions including confusion, despair, anger and frustration. This whole journey began quite unexpectedly. Back in March this year I had a haemorrhagic stroke. Following this, in spite of an unexpected bleed in my brain, they discovered I also have a tendency to form random blood clots and I developed a DVT down my right leg which then broke off and formed a pulmonary embolism and nearly killed me. All of this sparked a hunt for causes. One of the tests done in the hunt was a mammogram which revealed what I was told was 99% definitely just calcification, but they wanted a biopsy anyway. The biopsy revealed DCIS and I went in for a lumpectomy to get rid of it. The lumpectomy found a little more than only the DCIS. There was a small tumour of invasive cells and the area taken still had DCIS on the margins. The recommendation was then to do a sentinel node biopsy and either mastectomy or taking a little more tissue from the previous sites. I went for the lumpectomy as the doctor was quite sure that the scans were not showing anything far beyond these areas. I now have the results from the second surgery. Fortunately the sentinel node biopsy gave the all clear but the extra tissue taken is still showing signs of DCIS at the margins in spite of looking like completely normal tissue to the surgeon. They now say that I should have the mastectomy as they believe that the DCIS could be quite extensive. To be honest this whole concept is terrifying me. I am 45 years old and have three amazing kids and a very supportive husband, but something deep within me is just screaming NO! From my understanding of what they have said, there is no more invasive cancer and yet they want to take my whole healthy breast away. I feel rather pressured into this. I have to see the surgeon again next week and am expected to give my decision by then.
biopsy
lumpectomy
mastectomy

8 Replies

  • Barmyfarmers's avatar
    Barmyfarmers
    Member
    11 years ago
    Thankyou all so very much. I am so glad that I chose to join the BCNA community. I hear what you are all saying and it is very reassuring to know that other people understand and can give sound advice.
  • Blossom59's avatar
    Blossom59
    Member
    11 years ago

    One thing to be aware of is if you have radiation after a mastectomy, your options of reconstruction will be limited.  Have they mentioned reconstruction at any stage?  You are able to have immediate reconstruction at the time of mastectomy, there is a group on this site that is called Breast Reconstruction.  You will need to join and post your questions there for answers.

    You may not be thinking this far ahead at this stage, but this is an option that I think at 45 you might consider.

    As Sue has said, you have time to consider all your options, and make sure they are offering all your options. If not get a second opinion.

    Candice

  • Blossom59's avatar
    Blossom59
    Member
    11 years ago

    One thing to be aware of is if you have radiation after a mastectomy, your options of reconstruction will be limited.  Have they mentioned reconstruction at any stage?  You are able to have immediate reconstruction at the time of mastectomy, there is a group on this site that is called Breast Reconstruction.  You will need to join and post your questions there for answers.

    You may not be thinking this far ahead at this stage, but this is an option that I think at 45 you might consider.

    As Sue has said, you have time to consider all your options, and make sure they are offering all your options. If not get a second opinion.

    Candice

  • LeeTeamAndo's avatar
    LeeTeamAndo
    Member
    11 years ago

    You can get a second opion. The doctors can be very persusasive and quick to move to surgery. Slow it down to your pace if you can. Ask for more screening and question question question. Tell them you dont understand and explain how you feel. (all this is NOT what i did and I regret not understanding the process or having the gumption to get more opionions and slow it all down)  I dont regret my single masectomy but you do start to feel all chopped up, especially now i am heading back for more reconstructive work. best wishes. there are plenty of us out here and we have all been scared, confused, brave at different times and all at once.

    Lee  x

  • Susan_Linda's avatar
    Susan_Linda
    Member
    11 years ago
    Hi there, You have certainly had a lot going on. I've had breast cancer twice, 12 years apart and the first time I had a lumpectomy then had to have a mastectomy in Oct 2013 ( other breast) as I had 2 areas of invasive cells. I chose to have a double mastectomy to remove the risk of returning. I had immediate reconstruction but have now had implants removed as the first breast which had radiation 12 years ago had problems with healing. Now, finally I am happy that my risk of breast cancer returning is over and I love my new flat chest and comfy singlets. Everyone has been so supportive which is lovely. Go into your next meeting armed with questions and ideas. Take time to consider the options and don't feel pressured into doing something you are not happy with. Cheers Sue
  • Susan_Linda's avatar
    Susan_Linda
    Member
    11 years ago
    Hi there, You have certainly had a lot going on. I've had breast cancer twice, 12 years apart and the first time I had a lumpectomy then had to have a mastectomy in Oct 2013 ( other breast) as I had 2 areas of invasive cells. I chose to have a double mastectomy to remove the risk of returning. I had immediate reconstruction but have now had implants removed as the first breast which had radiation 12 years ago had problems with healing. Now, finally I am happy that my risk of breast cancer returning is over and I love my new flat chest and comfy singlets. Everyone has been so supportive which is lovely. Go into your next meeting armed with questions and ideas. Take time to consider the options and don't feel pressured into doing something you are not happy with. Cheers Sue
  • Cook65's avatar
    Cook65
    Member
    11 years ago
    Hi there, I was diagnosed with dcis in April and had a lumpectomy. I'm currently having chemo. My suggestion to you is to go into the doctors armed with every question swirling through your head. Ask what is likely to happen if you don't have treatments as well as what they recommend and why. Take as much time as you need to go through it all will your doctor. I personally wrote down the answers so that I could go through them later. You need all of the answers so that you can make an educated decision about your health. If you need to get a second opinion, then do so. I also found that what they thought was going to be needed kept changing until I had the surgery. It was like the magic pudding. The whole thing just kept getting bigger. Ask them why they want to take the breast and go through what is likely to happen if you don't. Having facts may make that decision easier. I remember asking what would happen if I didn't have surgery and looked into holistic therapies. My breast surgeon told me I would die. I was grateful for his honesty and directness. It was what I needed. Same with the chemo. I hate it and every part of me screams to stop doing it but the fact is without it I have a 50% chance of reoccurance and with chemo and radiotherapy that drops to 10%. Having facts and figures certainly made my decisions easier. Definitely take someone with you to your appointment for support. It is a terrifying process, I think the unknown is probably the worst part of it. Good luck with your appointment and I wish you all the best xoxox
  • Cook65's avatar
    Cook65
    Member
    11 years ago
    Hi there, I was diagnosed with dcis in April and had a lumpectomy. I'm currently having chemo. My suggestion to you is to go into the doctors armed with every question swirling through your head. Ask what is likely to happen if you don't have treatments as well as what they recommend and why. Take as much time as you need to go through it all will your doctor. I personally wrote down the answers so that I could go through them later. You need all of the answers so that you can make an educated decision about your health. If you need to get a second opinion, then do so. I also found that what they thought was going to be needed kept changing until I had the surgery. It was like the magic pudding. The whole thing just kept getting bigger. Ask them why they want to take the breast and go through what is likely to happen if you don't. Having facts may make that decision easier. I remember asking what would happen if I didn't have surgery and looked into holistic therapies. My breast surgeon told me I would die. I was grateful for his honesty and directness. It was what I needed. Same with the chemo. I hate it and every part of me screams to stop doing it but the fact is without it I have a 50% chance of reoccurance and with chemo and radiotherapy that drops to 10%. Having facts and figures certainly made my decisions easier. Definitely take someone with you to your appointment for support. It is a terrifying process, I think the unknown is probably the worst part of it. Good luck with your appointment and I wish you all the best xoxox