Deciding whether to have diagnostic sentinel lymph node removal

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?

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?

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?

Hello: I was diagnosed with DCIS, left breast in 2018 at age 63. There was too large an area of abnormal cells to safely do a lumpectomy, so at the recommendation of my surgeon, I had a single mastectomy with sentinel node biopsy, followed by a silicon implant six months later. Thankfully, DCIS was confirmed by the post-surgery pathology, and the nodes were clean. I don't regret the decision to have the sentinel node biopsy, during surgery. I gave some thought to a bilateral mastectomy, but I did not do that. So far, so good regarding lymphedema, although I am aware that it remains a risk. I did have genetic testing, since I lost a sister to breast cancer when she was 49. Those results were normal. Otherwise, I'd have definitely opted for bilateral surgery. The loss of my sister probably contributed to my willingness to have the sentinel node biopsy. There is so much to think about when facing all these decisions, and COVID is adding an extra layer of angst to your situations.

Good luck to all with these difficult decisions. My story is on the negative side, so please consider that I am just one person and one experience. I had LCIS in my left breast, followed by invasive lobular cancer in my right breast two years later. I opted for bi lateral mastectomy and during surgery my lymph nodes were tested. Just two on the right where there was invasive cancer and only one on the left side. My nodes were clear and I considered myself very lucky. Unfortunately during surgery the surgeon created a lot of damage to my lypmh system on the left side and I developed lymphadema in my left arm and hand. It was mild (it seemed) and resolved after a revision surgery a year later. But, it didn't actually resolve at all. I got a small cut in Nov 2019 on my left hand ring finger and I ended up with cellulitis and sepsis and was hospitalized for 6 days. My hand continues to be very painful and isn't fully functional now and I am in active treatment for the lymphadema again. Now my lymphadema is considered a serious threat to my health (and was......sepsis, very scary).
If I had to make the choice whether to allow the lymph removal, knowing what I know now, would I? I don't know. I would still want to know if the cancer had spread so I could plan cancer treatment but my arm and hand are now damaged and painful and there is no really good treatment for lymphadema.
I was very concerned about lymphadema going into the surgery and I felt that the doctors dismissed my concerns and I had to fight for information and care. I have three close friends who have had breast cancer and bi lateral mastectomies and they all have some level of lymphadema, so it's not as uncommon as doctors may lead you to believe. It is the only way that doctors have to determine the real spread of your cancer however. Hugs and good luck.