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I have asked a huge amount of questions on this issue. As stated before I have had bilateral breast cancer at different times. The first was DCIS in my right breast in 2007 and the second was IDC (stage 1) in my left breast in 2018. SNB was done both times with no cancer found. I had lumpectomies for both cancers. In August 2019 I had genetic testing done and have found that I have the CHEK2 gene mutation. I have decided to have a prophylactic bilateral mastectomy. Making that decision was tough. I am now at the point where I have found a breast surgeon and a plastic surgeon. Everything seem to be moving smoothly until the breast surgeon suggested that I get SNB at the time of the mastectomy to make sure that there is no cancer there. After the mastectomy if there was cancer found in the tissue that was analyzed from the surgery, there would be no way to do a sentinel node biopsy to find if the cancer had gotten that far so an Axillary Node Dissection would have to be done. I am extremely concerned about getting lymphedema from any kind of lymph node surgery. I have no idea how many lymph nodes the doctor is considering taking. She said she could take up to five. I have given this great thought and might be willing to have one lymph node on each side analyzed, but taking five lymph nodes after the ones that I have already had removed seems to set me up for lymphedema. So my question is has anybody had this experience and did you find out that you did or did not have cancer in either breast. In November 2018 I had mamo/ tomo of both breasts. In February 2019 I had a bone scan. In May 2019 I had a full body CT scan. In June 2019 I had mamo/ tomo of the right breast as the mamo from November 2018 had calcifications presumably from the prior lumpectomy. In November 2019 I had mamo/ tomo of both breasts. In march 2020 I had breast MRI with and without contrast in preparation for this surgery. Unfortunately the coronavirus happened and my surgery has been canceled until July. Nothing in any of these tests indicated that there was a possible cancer. Both of my cancers were found on routine mamos. With all this testing that I have had and no indication of another cancer, I question whether I really should go through the sentinel node biopsy which could set me up for lymphedema. Has anyone else had this decision to make? What did you do?

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Replies to "I have asked a huge amount of questions on this issue. As stated before I have..."

@sandyjr Sandy –
I had 7 nodes removed from first surgery (lumpectomy) with sentinel node dissection which, had they not done that, we would not know that the cancer escaped to the lymph system. It wasn't until I had breast MRI that they found the small second lesion (neuroendocrine cancer, and aggressive and rare form to show up in breast). I have not had lymphedema from node removal, but I have had cording twice and this is taken care of with manipulation and exercises. I would suggest you have your doctor/surgeon be sure to send you to physical therapy for instruction on after-breast surgery exercises. Our facility has a program where PT has a 6-week course of twice weekly exercises of stretching, core exercises, and strength training. Once you have had breast surgery, your muscles tend to waste and by doing the exercises, you will help to guard against lymphedema. Hoping all goes well for you.

Hi @sandyjr, I moved your message to the existing discussion that you started April 2 about sentinel lymph node removal, so that you can continue to connect with the members in this discussion like @trixie1313 and hopefully @anne72 @lisman1408 @margaret2 or @elsie37 will also jump in to give their thoughts on your decision-making.

Sandy, to find your previous posts and continue conversations, simply go to your profile and scroll down to the listing of your activity.

Great advice @trixie1313
PS: I love the new profile pic. I see your hair is coming back beautifully.

Hi. Recently diagnosed with DCIS and considering double mastectomies myself. Also concerned about having lymph nodes removed so really appreciate your question. We are in the same delayed-surgery boat and am curious as to how/where you were able to get it scheduled at all. I really hope someone responds to your question as it seems your situation may be unique?