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.

@trixie1313

I am also curious about that. I had 6 nodes removed, 2 of which had cancer with one eroding through. I've been told not to have blood pressure in that arm or blood removed from that side. So far, I am lucky.

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I had one sential node removed in November 2018 during a lumpectomy for stage 1A invasive ductual. The doctors told me no BP or blood draws in that arm which for me was the left arm. At my first follow up post treatments, they told me if 4 or fewer nodes removed , it's ok to use that arm. An hour later I saw my radiation oncologist and they said it's not ok. These doctors are all on the same team for my care and they are not on the same page about common procedures!
I'm going to stick with my right arm to be on the safe side. Why invite trouble when my right arm is normal and not compromised by surgery. So we will see when I have my next appointment.

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It amazes me that the medical profession is lacking in knowledge about lymphedema…especially the cancer health community. They seem to be not wanting to prevent this debilitating problem. The nurse navigator at the new place that I am going to for treatment said they do not do blood draws from the foot, but would take it from the hand. Ditto when I talked to the head of the lab at the hospital associated with my cancer center. In both cases, I told the people that my hand is part of my arm. It angers me that medical people are not learning about this problem and not being taught the proper way to avoid it. The lab person…a middle aged man, so someone that has been in the system a long time…did say I would need an order from my doctor to get it done. There is definitely a disconnect here. Do not let them use your affected arm! If they do, get all the information…name of person doing it and any other people involved. Perhaps asking for names of individuals will scare the offenders enough about a possible lawsuit that they will do things right. In my case, and from what I am reading, I am not the only one that has had bilateral BC with lymph nodes removed. With all the technology in our health system and all the things being studied, it amazes me that this issue has not been addressed and some mechanism has not been invented that would circumvent the use of the limbs involved. What would they do if you had no arms….one doctor told I was stretching things too far, but there has to be a way to treat people. I think I will write my congress person because this does seem to discriminate against women as BC is mostly a female problem. Do not let them bully you.

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I asked a hospital where I recently had some tests (it is associated with my cancer center and is directly across the street) why I could not get IVs and blood draws in my foot because I have had bilateral breast cancer with lymph nodes removed and was told that my situation was very rare, but if I did call them before procedures that they would make it available to me. I emphasized that since this particular hospital is a trauma center that it should just be available. They always want to use the arms. I know I am not a rarity. Please just respond if you have had bilateral breast cancer with lymph nodes removed. Also, are you having trouble getting properly cared for as hospitals and cancer centers do not want to seem to offer proper test procedures for us?

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@sandyjr

I asked a hospital where I recently had some tests (it is associated with my cancer center and is directly across the street) why I could not get IVs and blood draws in my foot because I have had bilateral breast cancer with lymph nodes removed and was told that my situation was very rare, but if I did call them before procedures that they would make it available to me. I emphasized that since this particular hospital is a trauma center that it should just be available. They always want to use the arms. I know I am not a rarity. Please just respond if you have had bilateral breast cancer with lymph nodes removed. Also, are you having trouble getting properly cared for as hospitals and cancer centers do not want to seem to offer proper test procedures for us?

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Hello @sandyjr, I moved your question about IVs and blood draws back to your original discussion on bilateral breast cancer so the members who you communicated with previously would see your new question and so that this good discussion could stay in one place.

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@sandyjr

I asked a hospital where I recently had some tests (it is associated with my cancer center and is directly across the street) why I could not get IVs and blood draws in my foot because I have had bilateral breast cancer with lymph nodes removed and was told that my situation was very rare, but if I did call them before procedures that they would make it available to me. I emphasized that since this particular hospital is a trauma center that it should just be available. They always want to use the arms. I know I am not a rarity. Please just respond if you have had bilateral breast cancer with lymph nodes removed. Also, are you having trouble getting properly cared for as hospitals and cancer centers do not want to seem to offer proper test procedures for us?

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I had stage 2 b on right side and stage 1 on left, had bilatetal mastectomy for right tumor and lab afterward found left tumor which landed me back in surgery less than a week later to have nodes removed. Right tumor had 2 out of 11 nodes positive, left had 0 out of 12 nodes that were removed. I can not use either arm for blood pressure or blood draws per doctor instructions, all have always honored blood pressure request though most have no idea how to read the pressure in the thigh or calf. My surgeon uses a wrist cuff. Once a nurse used a kids cuff on my wrist. I have had blood draws out of left arm bc no one can or will draw from anywhere else. They say theycare not certified to do that. Frustrating! I hope you are well. Bi-lateral is scary. My onc score was 16 but tumor on right was 4.2 so there is that but. God has taken care of me. Good luck, I am 5 year and. 6 months out from initial surgery. Still bc of those 2 nodes it could always come back.

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