Deciding whether to have diagnostic sentinel lymph node removal

Posted by sandyjr @sandyjr, Apr 2 9:26am

I had DCIS in 2007 and IDC/DCIS in 2018. Both times with lumpectomies/sentinel node removal, radiation, and AI meds. Both times both times sentinel nodes were clear. I had genetic testing done in 8/2019 and have the CHEK2 genetic mutation. I have decided to have prophylactic mastectomies with reconstruction. I had a full body CT scan in 5/19 and mamo with tomo 11/19 and a breast MRI 3/20 (pretesting for the mastectomies/reconstruction). No problem has showed up with my sentinel nodes now. I have been offered sentinel node biopsy at the time of the upcoming surgery…just in case something should show up in this breast pathology. If it does show up and sentinel nodes are not biopsies, there will be no way after this surgery to inject the dye with the breasts gone so an auxiliary node resection would need to be done. I need to make a decision about having the sentinal nodes removed at the time of the mastectomies/reconstruction or not. Has anyone had this decision to make and how and why did you decide?

Such a tough decision Sandy. It's impossible to predict the future. Perhaps @anne72 @lisman1408 @margaret2 or @elsie37 might have something to add about the pros and cons of having the sentinel nodes removed for testing now or left for surveillance later. Have you asked your doctor about your level of risk for recurrence? Would that help decide?

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@sandyjr

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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@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.

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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?

REPLY
@sandyjr

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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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.

Liked by trixie1313

REPLY
@sandyjr

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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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?

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I am trying to get input from people that are or have been in my position. It seems that the people that respond are talking about having it done with breast cancer surgery or for breast cancer surgery. I understand that it is something I can do that would benefit me IF I have a cancer that no one knows about. If I do not have any cancer which is probably the case, then I do not want to set myself up to have lymphedema. I would like to hear from someone that has had a lot of time after their cancer facing the same decision and wondering what their personal experience is/was.

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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.

Liked by elizm

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@stargazer56

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.

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I had no problem having the sentinal node biopsy when I had cancer both times. I was not given a choice then, but had no problem then as I knew I had breast cancer at that time. I do have a problem going through that again when (now) presumably I do not have cancer. I would like to hear from someone that did find cancer after having the mastectomy with no sentinal nodes removed or someone that did not. What was the course of action then? Did she then have axillary node biopsy and was that cancer free or not? And then what? Or did she have cancer and felt thankful that she had checked even though she thought she was cancer free. This thing seems to go deeper and deeper. Thank you for your reply.

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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.

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@cindylb

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.

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@cindylb I am so sorry you experienced all of that.

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@cindylb

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.

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Thank you for the information about the lymphedema. I cannot believe the doctors and healthcare people especially at the cancer treatment centers that totally disregard lymphedema. Since I have had the second cancer I try not to get anything done in either are which is pretty difficult. When I asked to get my blood draws from my foot The cocky nurses tell me that I can’t do that and if I do not want to have it taken from my arm then I have to get a port. That is totally ridiculous. I do not think that a lot of these medical people are properly trained. I have found two phlebotomist that will draw blood from my foot and I do not appreciate it when a nurse tells me that it is not done. I asked one of the doctors I was going to about lymphedema which she pooh-poohed and so I asked her what would they do if I didn’t have any arms and she asked me if I wasn’t carrying things just a little too far. I do not see her anymore. I am far too old to take this crap from anybody. I did explain to the breast surgeon that I have now about my concerned with the lymphedema and she totally understood. She told me to be sure to tell them when they prepare me for the surgery not to use my right arm. That is my dominant hand and I do not want to lose the use of that hand or arm. I have had lymph nodes removed on both sides so I have a lot of concern going into this. I worry that they will want to put the blood pressure cuff on my right arm. The surgeon said they could put it on my leg, but will they? Once you are out cold you have no idea what’s going on and a lot of these nurses do what they want to do. Needless to say I am done with nonsense after several instances with doctors and nurses that I found unacceptable. I am on my third oncologist now who I absolutely love but the first two left a lot to be desired. I just wish there was another way of doing sentinel node biopsy without having to put the dye in the breast. I am making a list of questions for the surgeon and one of them is can a needle aspiration be done so the lymph node will not have to be removed? So I do appreciate all your information and sympathize with you because only we know how not fun this all is. The first breast surgeon I went to after I decided to get the mastectomy told me that lymphedema from breast surgery is a fallacy. She is very highly regarded and I have no idea why because I really disliked her and her attitude. Thank you for your information it was very helpful and if you think of anything else about you or your friends please feel free to let me know.

Liked by cindylb

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@sandyjr

Thank you for the information about the lymphedema. I cannot believe the doctors and healthcare people especially at the cancer treatment centers that totally disregard lymphedema. Since I have had the second cancer I try not to get anything done in either are which is pretty difficult. When I asked to get my blood draws from my foot The cocky nurses tell me that I can’t do that and if I do not want to have it taken from my arm then I have to get a port. That is totally ridiculous. I do not think that a lot of these medical people are properly trained. I have found two phlebotomist that will draw blood from my foot and I do not appreciate it when a nurse tells me that it is not done. I asked one of the doctors I was going to about lymphedema which she pooh-poohed and so I asked her what would they do if I didn’t have any arms and she asked me if I wasn’t carrying things just a little too far. I do not see her anymore. I am far too old to take this crap from anybody. I did explain to the breast surgeon that I have now about my concerned with the lymphedema and she totally understood. She told me to be sure to tell them when they prepare me for the surgery not to use my right arm. That is my dominant hand and I do not want to lose the use of that hand or arm. I have had lymph nodes removed on both sides so I have a lot of concern going into this. I worry that they will want to put the blood pressure cuff on my right arm. The surgeon said they could put it on my leg, but will they? Once you are out cold you have no idea what’s going on and a lot of these nurses do what they want to do. Needless to say I am done with nonsense after several instances with doctors and nurses that I found unacceptable. I am on my third oncologist now who I absolutely love but the first two left a lot to be desired. I just wish there was another way of doing sentinel node biopsy without having to put the dye in the breast. I am making a list of questions for the surgeon and one of them is can a needle aspiration be done so the lymph node will not have to be removed? So I do appreciate all your information and sympathize with you because only we know how not fun this all is. The first breast surgeon I went to after I decided to get the mastectomy told me that lymphedema from breast surgery is a fallacy. She is very highly regarded and I have no idea why because I really disliked her and her attitude. Thank you for your information it was very helpful and if you think of anything else about you or your friends please feel free to let me know.

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It's a tough road. There are doctors who listen and who will treat you concerns with respect and there are those who aren't good at that. I am on my third oncologist now too and he is great. I was told I was worrying about nothing when I brought up lymphadema prior to my surgery. They were pretty certain I was early stage cancer (which I was) and that few lymph nodes would be removed and tested (which was true)…but the surgeon dug around a great deal to get that one lymph node and it caused lots of damage. If not for that, I may not have gotten the lymphadema and the subsequent cellulitis and sepsis a few months ago (that's not something you ever want to experience). I think the thing that bothers me most is that I wanted information and the lymphadema classes prior to surgery to know what I could expect and I was denied that information. Following surgery I was told over and over I didn't have lymphadema and I had to secure and pay for my treatment for a year before they would believe me it was happening. After the cellulitis and sepsis (some four years post surgery) they act like I should have known all about how bad my lymphadema was…..hmmmmmm. I was unlucky and most people I know with lymphadema had multiple nodes removed and tested. Cancer – the gift that just keeps giving…. Hugs and remember…..I was probably the outlier in my situation.

Liked by trixie1313

REPLY
@sandyjr

Thank you for the information about the lymphedema. I cannot believe the doctors and healthcare people especially at the cancer treatment centers that totally disregard lymphedema. Since I have had the second cancer I try not to get anything done in either are which is pretty difficult. When I asked to get my blood draws from my foot The cocky nurses tell me that I can’t do that and if I do not want to have it taken from my arm then I have to get a port. That is totally ridiculous. I do not think that a lot of these medical people are properly trained. I have found two phlebotomist that will draw blood from my foot and I do not appreciate it when a nurse tells me that it is not done. I asked one of the doctors I was going to about lymphedema which she pooh-poohed and so I asked her what would they do if I didn’t have any arms and she asked me if I wasn’t carrying things just a little too far. I do not see her anymore. I am far too old to take this crap from anybody. I did explain to the breast surgeon that I have now about my concerned with the lymphedema and she totally understood. She told me to be sure to tell them when they prepare me for the surgery not to use my right arm. That is my dominant hand and I do not want to lose the use of that hand or arm. I have had lymph nodes removed on both sides so I have a lot of concern going into this. I worry that they will want to put the blood pressure cuff on my right arm. The surgeon said they could put it on my leg, but will they? Once you are out cold you have no idea what’s going on and a lot of these nurses do what they want to do. Needless to say I am done with nonsense after several instances with doctors and nurses that I found unacceptable. I am on my third oncologist now who I absolutely love but the first two left a lot to be desired. I just wish there was another way of doing sentinel node biopsy without having to put the dye in the breast. I am making a list of questions for the surgeon and one of them is can a needle aspiration be done so the lymph node will not have to be removed? So I do appreciate all your information and sympathize with you because only we know how not fun this all is. The first breast surgeon I went to after I decided to get the mastectomy told me that lymphedema from breast surgery is a fallacy. She is very highly regarded and I have no idea why because I really disliked her and her attitude. Thank you for your information it was very helpful and if you think of anything else about you or your friends please feel free to let me know.

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@sandyjr @cindylib
I came across the following article on lymphedema risk in breast cancer which may be of interest to you:
https://www.medpagetoday.com/hematologyoncology/breastcancer/82339

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