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sandyjr
@sandyjr

Posts: 16
Joined: Jan 23, 2019

Bilateral breast cancer w sentinel node removal: Lymphedema prevention

Posted by @sandyjr, Sat, Feb 2 10:42am

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.

REPLY

What a terrible comment for your doctor to say you are taking the issue to far. I only had 4 lymph nodes taken from one side and was told like everyone else not to have blood or blood pressure taken from that side. I was also told the fewer the lymph nodes removed the lower your chances of lymphphedema. I agree you with you the test centres should be more accomidating.

I guess if the Drs had walked our paths, maybe they could identify with some of the issues we have to deal with. It’s interesting how they can tell us what we need…ie psychological therapy…group therapy…fishing trips…marches…pink T shirts and hats…stuff that we know is not for us. And then there are the therapists that have never been as well, thinking that their textbook learning will fix us. I think I should have proof read my initial message…ugh, bad spelling!!!!!

@sandyjr

I guess if the Drs had walked our paths, maybe they could identify with some of the issues we have to deal with. It’s interesting how they can tell us what we need…ie psychological therapy…group therapy…fishing trips…marches…pink T shirts and hats…stuff that we know is not for us. And then there are the therapists that have never been as well, thinking that their textbook learning will fix us. I think I should have proof read my initial message…ugh, bad spelling!!!!!

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So sorry you're finding this. There is real lack of education and concern on the part of all doctors (cancer centers and doctors outside that field) about the real concerns for lymphedema post lymph node removal. Kathy Bates, the actress, developed pretty severe lymphedema with her breast surgery and is a big advocate for the concerns you raise.

I developed lymphedema on my left side from the removal of ONE LYMPH NODE…..yup, just one. There was significant damage during surgery trying to remove it. It wasn't even the side where I had the invasive cancer. So, it's quite possible to develop lymphedema from even one node…although my doctors wouldn't allow me to go to lymphedema classes so I had to get the information myself prior to surgery. They said that the chances of developing lymphedema in my case was just not possible (these are my oncologists and surgeons). Surprise…..a year later and a year of complaining from me and my paying for massage therapy and physical therapy myself, the doctors admitted I indeed had lymphedema. I was lucky because a follow up surgery pretty much erased the damage and my lymphedema is well controlled.
I have to advocate for myself at each and every blood draw and blood pressure reading in asking that they use only my right arm (lymphedema on the left)…….bi lateral mastectomy. I can't imagine if I had to request the blood draws elsewhere……Hugs

I have a very good lymphedema therapist. She is with Orlando Health in Orlando, Florida. Her name is Christina. Very knowledgeable. She was educated at Johns Hopkins.

@sandyjr

I have had bilateral breast cancer with lymph nodes removed both sides. I have been trying to find a cancer center or lab that will do blood draws out of the foot or another body part to lessen my chances of getting lymphedema. No one wants to provide this service. Today I went for a nuclear bone scan and they wanted to inject the radioactive material into my arm. I asked if they would do it in my foot and they didn’t know how to respond. I don’t think they had a clue what I was talking about. There was an older gentleman there who said they did it routinely years ago but they don’t seem to do it anymore. He suggested that it might be considered a liability and that is why they don’t do it anymore. He said sure he would do it and it was a piece of cake. I had this test done in the hospital adjacent to the cancer center I am going to which will not do it. When I finished the test I went to the lab and asked if I came in for blood work would they do it that way and they grudgingly said probably. My question is that if cancer centers are all about cancer and lymphedema is something that occurs after breast surgery with node removal, then why is it not routinely available at these places that advertise how wonderful they are and how it is all about the patient? How many people have found a place that will do this?

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I'll be following this discussion. I had invasive cancer in one breast and a Stage 0 – ALH in the other breast, so both breasts were removed 3 years ago. Lymph nodes were removed from both sides and I developed lymphedema in the breast that was ALH (not invasive cancer…figures, huh….) I avoid the lymphedema arm in blood draws and blood pressure but oddly have to do my blood draws in the arm where more lymph nodes were removed. My belief is that doctors don't really consider the possibility or realities of lymphedema, don't plan for it and don't follow a very good protocol. There are advocates for what you're asking. The most prominent person I have seen advocating for better concern and treatment is the actress Kathy Bates. Perhaps googling her organization and work will pull up some ideas or resources for this. Hugs.

@sandyjr

I have had bilateral breast cancer with lymph nodes removed both sides. I have been trying to find a cancer center or lab that will do blood draws out of the foot or another body part to lessen my chances of getting lymphedema. No one wants to provide this service. Today I went for a nuclear bone scan and they wanted to inject the radioactive material into my arm. I asked if they would do it in my foot and they didn’t know how to respond. I don’t think they had a clue what I was talking about. There was an older gentleman there who said they did it routinely years ago but they don’t seem to do it anymore. He suggested that it might be considered a liability and that is why they don’t do it anymore. He said sure he would do it and it was a piece of cake. I had this test done in the hospital adjacent to the cancer center I am going to which will not do it. When I finished the test I went to the lab and asked if I came in for blood work would they do it that way and they grudgingly said probably. My question is that if cancer centers are all about cancer and lymphedema is something that occurs after breast surgery with node removal, then why is it not routinely available at these places that advertise how wonderful they are and how it is all about the patient? How many people have found a place that will do this?

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Lymphedema has happened to me on my right side, after breast cancer. I couldn’t understand why my doctors were just shrugging their shoulders like they don’t know why and we will watch and see. The lymphedema group has a lot of good information.

I have had bilateral breast cancer with lymph nodes removed both sides. I have been trying to find a cancer center or lab that will do blood draws out of the foot or another body part to lessen my chances of getting lymphedema. No one wants to provide this service. Today I went for a nuclear bone scan and they wanted to inject the radioactive material into my arm. I asked if they would do it in my foot and they didn’t know how to respond. I don’t think they had a clue what I was talking about. There was an older gentleman there who said they did it routinely years ago but they don’t seem to do it anymore. He suggested that it might be considered a liability and that is why they don’t do it anymore. He said sure he would do it and it was a piece of cake. I had this test done in the hospital adjacent to the cancer center I am going to which will not do it. When I finished the test I went to the lab and asked if I came in for blood work would they do it that way and they grudgingly said probably. My question is that if cancer centers are all about cancer and lymphedema is something that occurs after breast surgery with node removal, then why is it not routinely available at these places that advertise how wonderful they are and how it is all about the patient? How many people have found a place that will do this?

@sandyjr

I have had bilateral breast cancer with lymph nodes removed both sides. I have been trying to find a cancer center or lab that will do blood draws out of the foot or another body part to lessen my chances of getting lymphedema. No one wants to provide this service. Today I went for a nuclear bone scan and they wanted to inject the radioactive material into my arm. I asked if they would do it in my foot and they didn’t know how to respond. I don’t think they had a clue what I was talking about. There was an older gentleman there who said they did it routinely years ago but they don’t seem to do it anymore. He suggested that it might be considered a liability and that is why they don’t do it anymore. He said sure he would do it and it was a piece of cake. I had this test done in the hospital adjacent to the cancer center I am going to which will not do it. When I finished the test I went to the lab and asked if I came in for blood work would they do it that way and they grudgingly said probably. My question is that if cancer centers are all about cancer and lymphedema is something that occurs after breast surgery with node removal, then why is it not routinely available at these places that advertise how wonderful they are and how it is all about the patient? How many people have found a place that will do this?

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@sandyjr I moved your question about alternate methods for getting blood work done to the original discussion you started about this. It is a good discussion and I wanted to keep everyone in one place to talk about it.

Thanks. I am still trying to navigate your sight and appreciate your help. I am hopeful that others will see this and know that they can at least ask and be persistent about this issue with their doctors. I believe that it is about economics. When I found out the the first cancer center I went to this time did not provide the service and they are using the M D Anderson name, that it was about the money and possible liability. Let’s face it, cancer is very lucrative except for the people that are unlucky enough to get it. I called M D Anderson in Texas since they are THE place to go for treatment, bypassing Sloan Kettering and they put me through to the lab and one of the lab techs was being a go between for me and the head of the lab and he said that all they require is an order from your doctor to get the blood drawn from the foot. He also invited me to go there….too bad I live in NJ. That is a true cancer center….doing everything they can to treat the patients. Needless to say, after a couple more incidents where I discovered that the center I was going to was owned by the doctors and appeared to me to be a money making place more than a true “care about the patient” treatment place, I left there and the doctor that would not answer my questions and who yelled at me on the phone. I have moved on to a different place. This place also does not offer the service, but I think I found out yesterday that they will perform foot stuff rather than arm stuff at the hospital across the street that they are a part of. The place is a trauma center and should be able to do these things routinely. I encourage ladies that feel the way I do to be persistent and also to look for a lab that will do this for them. The cancer centers have their own lab areas, so it is more $$$$$$$ for them to keep you going there. What if patients were able to find accommodating labs and took their lab business elsewhere? Just keep in mind that you have to be your own advocate and no matter how much you may like your doctor, you have to do what is best for you. Sadly, you are just one of many sick people that they treat. Nothing will change unless something changes. It is hard to buck the system. Only by causing a fuss will these things change for us.

@sandyjr I had DCIS. I went for a double mastectomy because of my high risk. They found DCIS in the other breast. I had the sentinal node removed. I was told when you only have a small number of nodes removed it's fine to use that arm for bloodwork and blood pressure. My mom had a much more aggressive and advanced inflammatory breast cancer and had many nodes removed. I forget how many but double digits. She has lymphedema. When she has gone for other surgeries her arm is marked. There is no bloodwork allowed of checking blood pressure. She woke up from a surgery and the blood pressure cuff was on her lympedema arm! Needless to say it's worse now.
I have had a ton of bloodwork done ,my veins are really un co operative. I have told them to take it from where ever they need to.

@julie1976

@sandyjr I had DCIS. I went for a double mastectomy because of my high risk. They found DCIS in the other breast. I had the sentinal node removed. I was told when you only have a small number of nodes removed it's fine to use that arm for bloodwork and blood pressure. My mom had a much more aggressive and advanced inflammatory breast cancer and had many nodes removed. I forget how many but double digits. She has lymphedema. When she has gone for other surgeries her arm is marked. There is no bloodwork allowed of checking blood pressure. She woke up from a surgery and the blood pressure cuff was on her lympedema arm! Needless to say it's worse now.
I have had a ton of bloodwork done ,my veins are really un co operative. I have told them to take it from where ever they need to.

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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.

The first time I had breast cancer, I was told no blood pressure, blood draws or injections in the arm/hand of the affected arm. I bought a medic alert bracelet that I had engraved with that info. Also, you need to verbally tell people doing tests etc on you this information. Do not allow them to do it if they insist, which they should not. You still have your other arm for procedures. In my case I have had bilateral breast cancer, so do not want either arm used. Medical people are not happy, I think because it makes their job harder. Dr’s offices, labs, hospitals and clinics etc, should be able to accommodate people like us. If they can’t, then try to find a place that will do the job right. Also, if you are in a situation where you HAVE to use the affected arm, I would suggest that you advise the person taking your information that you want it in your records that you wanted the proper treatment and they did not comply. I have been told by first responders that the first thing they do is look for a bracelet or necklace that has medical info. You have to be your own advocate.

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@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.

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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