Can’t get lymphedema if you only had sentinel node removed??????

Posted by sandyjr @sandyjr, Jun 25, 2019

I was speaking to the director of the cancer center where I am getting treatment and expressed my concern about getting lymphedema. I had bilateral breast cancer with lymph nodes removed. She says you do not get lymphedema from only having the sentinel nodes removed. If that is true I am going to kiss the ground. Please comment.

@sandyjr

I am curious about who found your lymphedema and who monitors it. Does your oncologist or surgeon get involved? The cancer center that I go to makes you see their surgeon on a regular basis who is supposed to take care of the “physical part of my cancer” whatever that means. She is not the surgeon that did my surgery. She examines my breasts and orders my mammon’s. I cannot figure out why the oncologist cannot do this….Anyway, I have mentioned my concern about lymphedema to both and they show no interest and will not go there. I would think that is part of the physical part of my care. Anyway, I recently had a CT scan and the technician that set up my IV had the tourniquet on too tight (I kept telling him it was too tight, but he would not loosen it) and it was on way to long…I know over 10 minutes….maybe 20. Since then I can still feel the place where the tourniquet was and my hand and wrist are definitely swollen. My breast also seems swollen. I will be seeing the head of oncology for that whole health system early in July and if he blows me off, I am out of there. So, who can tell me if I have a problem?

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My surgeon told me I shouldn’t worry, I won’t get Lymphedema; so when I did, I showed him and he sent me to a physical therapist who specializes in our condition. 2 years later, physical therapy, a compression vest with a sleeve, arm wraps & sleeves, it is under control.

Never let anyone do anything (take blood, blood pressure, anything) with or to your effected arm! If a tech does not listen to you, tell him to STOP & request to talk to someone in charge. I’m so sorry for your experience. Don’t be afraid to say NO and stand your ground.

Did I answer your question or just prattle on?

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@buckimom

My surgeon told me I shouldn’t worry, I won’t get Lymphedema; so when I did, I showed him and he sent me to a physical therapist who specializes in our condition. 2 years later, physical therapy, a compression vest with a sleeve, arm wraps & sleeves, it is under control.

Never let anyone do anything (take blood, blood pressure, anything) with or to your effected arm! If a tech does not listen to you, tell him to STOP & request to talk to someone in charge. I’m so sorry for your experience. Don’t be afraid to say NO and stand your ground.

Did I answer your question or just prattle on?

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I have had bilateral breast cancer and NO ONE CARES. When I say I want stuff done in my foot, they do not want to. I have found two people that will draw from my foot, but what do I do if I need surgery? It seems no one in the NJ area cares. If I say anything, they all look at me and either do not answer or say “so”. The oncologist that fired me as a patient the other day (because I had questions for her) would not answer me when I told her of my concern and said that she did not seem to be concerned. I am glad she walked out of the room on me because I was not liking her. That is why I have an appointment with the head of oncology for the whole health network early next month. I am going to wait to talk to him before I make any decisions.

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@cindylb

Good for you! Good for the young surgeon too………I can't imagine the pain they must see everyday too. Since I have no breasts I like 'messing' with the nurses and doctors when they offer me a gown before exams. I just pull off my shirt and sit down, explaining I have less than a man to 'hide' these days. I actually consider gardening without a shirt and would in my own backyard but the result is a little jarring from my surgery and I don't want to frighten my neighbors!!
Hugs and Laughs to you…………..hang in there with the lymphodema

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@cindylb I didn't have full mastectomies, just greatly reduced and reshaped so they're about a size "A" now…compared to F++ feels like I'm flat. Don't have to wear bras anymore AND in our pool I get on a float without top so I can sunbathe and get an even tan!!!!

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@sandyjr

I have had bilateral breast cancer and NO ONE CARES. When I say I want stuff done in my foot, they do not want to. I have found two people that will draw from my foot, but what do I do if I need surgery? It seems no one in the NJ area cares. If I say anything, they all look at me and either do not answer or say “so”. The oncologist that fired me as a patient the other day (because I had questions for her) would not answer me when I told her of my concern and said that she did not seem to be concerned. I am glad she walked out of the room on me because I was not liking her. That is why I have an appointment with the head of oncology for the whole health network early next month. I am going to wait to talk to him before I make any decisions.

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I am on my fourth oncologist now (one time was because of an insurance change) but two were because it just wasn't a good fit. Keep working until you find someone you trust and who listens. Its too important not to do that.
Press for what you feel comfortable with for blood pressure checks and blood work sticks and such. Doctors haven't all caught up with the lymphedema risk yet.
Hugs

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@trixie1313

@cindylb I didn't have full mastectomies, just greatly reduced and reshaped so they're about a size "A" now…compared to F++ feels like I'm flat. Don't have to wear bras anymore AND in our pool I get on a float without top so I can sunbathe and get an even tan!!!!

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trixie1313 – isn't it great not wearing bras. That and I lost some weight I needed to drop through the whole ordeal….that's the only good thing I can say about cancer, ha ha!

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@cindylb

trixie1313 – isn't it great not wearing bras. That and I lost some weight I needed to drop through the whole ordeal….that's the only good thing I can say about cancer, ha ha!

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LOL – I was hoping to lose weight, but with the Taxol chemo, I gained (which oncologist thought would happen) and with Femara (letrozole) my weight is holding. Phooey!!! Maybe after a while I can start losing some poundage.

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@trixie1313

LOL – I was hoping to lose weight, but with the Taxol chemo, I gained (which oncologist thought would happen) and with Femara (letrozole) my weight is holding. Phooey!!! Maybe after a while I can start losing some poundage.

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trixie1313 – If it makes you feel any better…….several years into this all I have to do is look at a donut and I gain 2 pounds…ha ha

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@cindylb

I am on my fourth oncologist now (one time was because of an insurance change) but two were because it just wasn't a good fit. Keep working until you find someone you trust and who listens. Its too important not to do that.
Press for what you feel comfortable with for blood pressure checks and blood work sticks and such. Doctors haven't all caught up with the lymphedema risk yet.
Hugs

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It makes me feel better that you have made the choice of finding the right oncologist for you. My first one was a good doctor I think, but he was unreasonable when he would not get a second reading on my diagnostic mamo….the report was full of errors and I asked for a second reading by a different radiologist and he said NO….WE HAVE GOOD DRs….who don’t know their left from their right and what years the two different cancers happened in and even more. He also yelled at me and told me the reason why I had anxiety was because I wouldn’t pay out of pocket for psychological counseling…WTH? Maybe I had anxiety because it was my second cancer and a radiologist had misdiagnosed it twice even though it clearly showed up on mamo and ultrasound…also I have great insurance so why would I even think of paying out of pocket…I still don’t get it, him throwing this in my face. The second was a woman that did not want to answer my questions and huffed out of the room when I pointed out she was wrong about a test report I had with me. Who needs someone who does not want to relate and who has you in a slot that says if this then that. Running out of the room was very unprofessional…she would not admit she was wrong. I think some of these doctors do not want us to read and understand our reports. Now I am looking for number 3. I sure hope I make a better choice this time.

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@sandyjr

It makes me feel better that you have made the choice of finding the right oncologist for you. My first one was a good doctor I think, but he was unreasonable when he would not get a second reading on my diagnostic mamo….the report was full of errors and I asked for a second reading by a different radiologist and he said NO….WE HAVE GOOD DRs….who don’t know their left from their right and what years the two different cancers happened in and even more. He also yelled at me and told me the reason why I had anxiety was because I wouldn’t pay out of pocket for psychological counseling…WTH? Maybe I had anxiety because it was my second cancer and a radiologist had misdiagnosed it twice even though it clearly showed up on mamo and ultrasound…also I have great insurance so why would I even think of paying out of pocket…I still don’t get it, him throwing this in my face. The second was a woman that did not want to answer my questions and huffed out of the room when I pointed out she was wrong about a test report I had with me. Who needs someone who does not want to relate and who has you in a slot that says if this then that. Running out of the room was very unprofessional…she would not admit she was wrong. I think some of these doctors do not want us to read and understand our reports. Now I am looking for number 3. I sure hope I make a better choice this time.

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Sandy – My husband was diagnosed with a Stage 4 cancer of unknown primary about a year and a half ago. They said he would die in a few months. Thankfully they have been wrong but we still struggle with what the heck is going on. During our oncology visit to discuss options for treatment and getting the thin diagnosis of 'we just don't know'………the oncologist got up and said she had to see another patient (15 minutes in to the appointment). She said the patient she needed to see was 'really sick'………..like a terminal man isn't. She was also my oncologist. We changed immediately. I was taking notes for my husband and holding a ball point pen. I was so angry when she got up and left I looked down and I had cracked that pen in half. Trust me, I'm not that strong, ha ha.
We now have a doctor who listens, who is compassionate and never scoffs at our questions or concerns. It's too important not to have a doctor who will work with you.
Hugs

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@auntieoakley

I had sentinel node, but found out from the surgeon that since the machine could not track the dye, they removed several. I do get a little lymphedema occasionally but have learned to deal with it quickly. I had to learn this on my own as I needed an iv for an imaging and they could not get a vein on the left and bullied me into accepting it on the right and well you know what happened. The good news is that I had a great oncology nurse who explained to me about it and why I should protect it. That woman was the saint that saved me much grief over the last years. Getting me compression sleeves and teaching me where to get help when I need it. You are a very smart person to be looking into this and educating yourself, if it happens, fight for that referral because no suffering should be silenced. If I learned anything from being at Mayo Clinic, that was it.

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Can lymphedema be caused by rabid racoon bite and/or rabies vaccine? I queried the L Society but no reply.

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@snoshu

Can lymphedema be caused by rabid racoon bite and/or rabies vaccine? I queried the L Society but no reply.

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I don’t exactly know the answer but I know it is technically a buildup of lymph fluid, it might be possible.

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