Bilateral breast cancer w sentinel node removal: Lymphedema prevention

Posted by sandyjr @sandyjr, Feb 2, 2019

The first time I had breast cancer...DCIS with 2 nodes removed...I was instructed to NEVER have BP, blood draws or shots in the affected arm because of the possibility of lymphedema. Last year I had IDC in the other breast with one lymph node removed. I have asked for blood draws from other parts of the body, but I have been unsuccessful finding a place that will accommodate me. Neither my Dr’s office nor the two cancer centers that I have gone to provide this service. It surprises me that this is not routinely provided at cancer centers. The ones that I have gone to are respected companies, not second rate places. I would like to find a lab that can accommodate me. I see that there are a significant number of ladies that are in the same boat as me. I wonder if the cancer centers are only considering their expense and/or liability in providing this service. At one place I asked the Dr what they would do if I did not have arms and she told me I was carrying the issue too far. To me it is obvious that there is a need, not only in the breast cancer community, but in the health field as well, for this service. I feel that even though these cancer centers advertise how wonderful and up to date they are, they are not really interested in the welfare of the survivor as they advertise themselves to be. I would appreciate anyone else’s thought on this issue.

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I agree with you the cancer centers should accommodate the patients needs

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The docs always say no blood pressure in the arm on the mastectomy side. I had double mastectomy also. I don't actually think there is any problem getting bp on either arm. Or blood draw. Maybe it is just immediately post-surgery?

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I had a port inserted in my chest to give me chemo. Couldn't they do that for you?

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Lymphadema is a risk if you have had the lymph nodes removed. Many people today only have the sentinel nodes removed and that is less of a problem in some cases. When they remove the lymph nodes under your arm, they tell you this to reduce the risk. I have had some lymphadema because the nurses inserting an IV for a MRI could not get a large enough vein in the left side, I finally agreed to them using the right. Oh dear God! Never again. I looked like I had a tree trunk for an arm. Lol. It took forever to get rid of it and even longer to help the skin afterward. I have learned to protect that arm. If it starts to swell a little, I add the compression sleeve. Massage and manipulation add a little help before it can blow up. There was a conversation about stomach bloating from from lymphadema after mastectomy, did you read that thread at all?

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