Deciding whether to have diagnostic sentinel lymph node removal
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?
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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.
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.
I came across the following article on lymphedema risk in breast cancer which may be of interest to you: