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

Posted by sandyjr @sandyjr, Tue, Jun 25 3:12pm

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.

I can only speak for myself, and I don’t know the ‘medical’ answer to that question; but I only had sentinel nodes plus one other, removed and I did not get lymphedema.

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@lisman1408

I can only speak for myself, and I don’t know the ‘medical’ answer to that question; but I only had sentinel nodes plus one other, removed and I did not get lymphedema.

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Thank you. I am terrified of getting lymphedema and your answer is very encouraging.

Liked by cindylb

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@sandyjr

Thank you. I am terrified of getting lymphedema and your answer is very encouraging.

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Hello Sandy Jr – I was also very worried about lymphedema as a result of the lymph node dissection. I only had the sentinel nodes removed on both sides (I had a bi lateral mastectomy) BUT………..I did get lymphedema on my left arm. I will qualify it though……the surgeon had a rough time on the left side removing the node…it was tiny (which is good news because it meant right away that it didn't have cancer and also it wasn't on the side of my breasts where I had cancer anyway….sigh.
I spent about a year in physical therapy and massage therapy, followed by a 'scar revision' surgery which removed extra tissue and mostly resolved the issue.
My advice would be……….don't 'worry' but do educate yourself on lymphedema – what to look for, how it's treated and what you can do to reduce your risk of ever getting it if possible. I did all of that and I'm glad I had a clear understanding of the condition and how to treat it BEFORE I got it……..can't hurt……PLUS, the lymph system and how to have a healthy one is very overlooked in medicine and there are some great benefits to managing your lymph system and understanding it's function and health.
Hugs………….

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@sandyjr

Thank you. I am terrified of getting lymphedema and your answer is very encouraging.

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Sandy, I agree with Cindy. Put your worry into getting informed (as you are doing here) and taking wise precautions. The possibility of lymphedema is lower with sentinel lymph node biopsy than axillary lymph node dissection where several lymph nodes are removed. Low risk, however is not zero risk. Here's a helpful article:

Lymphedema Risk Factors https://www.breastcancer.org/treatment/lymphedema/risk_factors

Liked by cindylb

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@colleenyoung

Sandy, I agree with Cindy. Put your worry into getting informed (as you are doing here) and taking wise precautions. The possibility of lymphedema is lower with sentinel lymph node biopsy than axillary lymph node dissection where several lymph nodes are removed. Low risk, however is not zero risk. Here's a helpful article:

Lymphedema Risk Factors https://www.breastcancer.org/treatment/lymphedema/risk_factors

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Sandy,
I just read the article Collen referenced in her post and want to add that my body decided to develop a great deal of fluid post surgery. I had seromas that required draining every 2-3 days post surgery. My issues were my body being 'me' and are probably not typical but possible. I still use the knowledge I gained having lymphedema in keeping my body healthier today. I'm grateful my lymphedema has mostly resolved and that I had a good therapists to guide and support me.
Hugs

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@colleenyoung

Sandy, I agree with Cindy. Put your worry into getting informed (as you are doing here) and taking wise precautions. The possibility of lymphedema is lower with sentinel lymph node biopsy than axillary lymph node dissection where several lymph nodes are removed. Low risk, however is not zero risk. Here's a helpful article:

Lymphedema Risk Factors https://www.breastcancer.org/treatment/lymphedema/risk_factors

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I originally had one sentenal node removal with a sentanal node recurrence. I had 23 nodes removed after that. I did not see anything going on. One of the nurses in chemotherapy told me that I needed to address the issue. Referral to Lymphadema clinic. It only takes one lymph node removal to cause Lymphadema. My therapist tells me that it is way under treated.

Liked by trixie1313

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@cindylb

Sandy,
I just read the article Collen referenced in her post and want to add that my body decided to develop a great deal of fluid post surgery. I had seromas that required draining every 2-3 days post surgery. My issues were my body being 'me' and are probably not typical but possible. I still use the knowledge I gained having lymphedema in keeping my body healthier today. I'm grateful my lymphedema has mostly resolved and that I had a good therapists to guide and support me.
Hugs

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@cindylb – I too developed lymphedema after surgery and had seromas drained many times. I have my Lymphedema under control, using a compression machine, sleeves and wraps on a "as necessary" after therapy for 2 years. I watch myself carefully and keep in under control. You're not alone 🙂

To bring a little levity to this situation; I am 75 years old. on one occasion when I needed to be "drained", a young surgeon appeared to perform the procedure. I asked him to please be very careful to leave no scar and told him I was a topless pole dancer! The poor guy took a couple steps back, his eyes wide as saucers, thought for about 30 seconds, and said, "uh uh, I'm not touching that with a 10 foot pole". We all had a hearty laugh!! Gotta make fun when you can, that's my motto . . . 😉

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@buckimom

@cindylb – I too developed lymphedema after surgery and had seromas drained many times. I have my Lymphedema under control, using a compression machine, sleeves and wraps on a "as necessary" after therapy for 2 years. I watch myself carefully and keep in under control. You're not alone 🙂

To bring a little levity to this situation; I am 75 years old. on one occasion when I needed to be "drained", a young surgeon appeared to perform the procedure. I asked him to please be very careful to leave no scar and told him I was a topless pole dancer! The poor guy took a couple steps back, his eyes wide as saucers, thought for about 30 seconds, and said, "uh uh, I'm not touching that with a 10 foot pole". We all had a hearty laugh!! Gotta make fun when you can, that's my motto . . . 😉

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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?

Liked by cindylb

REPLY
@buckimom

@cindylb – I too developed lymphedema after surgery and had seromas drained many times. I have my Lymphedema under control, using a compression machine, sleeves and wraps on a "as necessary" after therapy for 2 years. I watch myself carefully and keep in under control. You're not alone 🙂

To bring a little levity to this situation; I am 75 years old. on one occasion when I needed to be "drained", a young surgeon appeared to perform the procedure. I asked him to please be very careful to leave no scar and told him I was a topless pole dancer! The poor guy took a couple steps back, his eyes wide as saucers, thought for about 30 seconds, and said, "uh uh, I'm not touching that with a 10 foot pole". We all had a hearty laugh!! Gotta make fun when you can, that's my motto . . . 😉

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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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@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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Sandyjr, I strongly encourage you to get a referral to a certified lymphadema therapist( usually a physical or occupational therapist or possibly massage therapist).

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@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?

Jump to this post

I complained of arm and hand swelling about 6 months after my surgery. It was on going. My oncologist and surgeon said….it couldn't be lymphedema because they only removed one lymph node (hmmmmm) so I insisted on seeing physical therapy and massage therapy myself via my surgeon. After another couple of months, at a regular oncology visit my doctor noticed the swelling (finally) and put in an actual referral and recommended my surgeon revisit my situation. That is when I had a second surgery to remove additional tissue which helped a great deal.
You know your body and you will have to push them to address your concerns. Sometimes a lymphedema specialist can look and see better what is happening. There aren't many (unfortunately). I got lucky with a great massage therapist in my doctors practice who sent my records to the doctors and confirmed my lymphedema. I would press your doctors further and don't worry about 'hurting their feelings' or going against their opinions here. Not all doctors are very informed or concerned and you want to catch it early if possible….it's easier to treat and manage.
Keep us all posted and Hugs

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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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@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?

Jump to this post

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?

Liked by auntieoakley

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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.

Liked by cindylb

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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!!!!

Liked by cindylb

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