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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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Replies to "Good luck to all with these difficult decisions. My story is on the negative side, so..."

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

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.