1. < Breast Cancer

Can you 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.

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cindylb | @cindylb | Jun 30, 2019
In reply to @sandyjr "It makes me feel better that you have made the choice of finding the right oncologist..." + (show)
@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

REPLY
snoshu | @snoshu | Jun 12, 2021
In reply to @auntieoakley "I had sentinel node, but found out from the surgeon that since the machine could not..." + (show)
@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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1 reply
Mentor
Chris, Volunteer Mentor | @auntieoakley | Jun 12, 2021
In reply to @snoshu "Can lymphedema be caused by rabid racoon bite and/or rabies vaccine? I queried the L Society..." + (show)
@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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cindylb | @cindylb | Sep 7, 2022

Everyone....... If you re getting Covid Vaccines or boosters......no matter your Lymphedema status, if you've had sentinal or node surgery, ask for the vaccine in your hip! I didn't and every shot (but the final booster) I got considerable swelling in my lymphedema arm. The vaccine and all MRNA type vaccines cause inflammation (hence....a wait for mammograms due to false positive breast cancer findings). My fourth shot in my hip....no arm swelling! Hugs to all.

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3 replies
callalloo | @callalloo | Sep 7, 2022
In reply to @cindylb "Everyone....... If you re getting Covid Vaccines or boosters......no matter your Lymphedema status, if you've had..." + (show)
@cindylb

Everyone....... If you re getting Covid Vaccines or boosters......no matter your Lymphedema status, if you've had sentinal or node surgery, ask for the vaccine in your hip! I didn't and every shot (but the final booster) I got considerable swelling in my lymphedema arm. The vaccine and all MRNA type vaccines cause inflammation (hence....a wait for mammograms due to false positive breast cancer findings). My fourth shot in my hip....no arm swelling! Hugs to all.

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I'd also switch sides to be safe(r). I was told to never again have blood pressure or blood taken or any vaccinations given on my left arm to be extra cautious. And that was after a lumpectomy for a Stage 1A small tumor and clear sentinel lymph node biopsy on the left breast.

I was also told that the risk of lymphedema is low after a sentinel lymph node excision but it's not zero and lymphedema can occur at any time, even years after the surgery. Having seen what a friend went through with lymphedema, I'm very careful to follow the suggestions and extra protective of my left arm in the hopes that I never develop it. That includes keeping an eye on any insect bites or minor cuts, etc.

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callalloo | @callalloo | Sep 7, 2022
In reply to @sandyjr "It makes me feel better that you have made the choice of finding the right oncologist..." + (show)
@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.

Jump to this post

I just love when doctors are unable to confront their own human imperfection. A male friend spent 15 minutes listening to a doctor describe the several things wrong with him in an uninterruptible monologue while staring at his X-rays. When the doctor was finished with the bad news, my friend suggested that that was probably all wrong.

The doctor condescended
to point out that he is a doctor and my friend is not and therefore his opinion was less important than the doctor's. My friend said the doctor is still wrong and he can prove it. The doctor asked how he can prove it and my friend walked over to the X-ray to point out that it wasn't his name on it. He suggested that the doctor use his superior medical education to find the X-ray with my friend's name on it before diagnosing my friend's medical challenges.

I pointed out to my friend that, had he been a female patient, the doctor would likely have been even more annoying and dismissive...and his wife seconded that appraisal.

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1 reply
dlmdinia | @dlmdinia | Sep 8, 2022

I had lymph nodes removed on the right side. I was told no needles, no blood pressure on that side. I wore a medic alert bracelet warning against this, but no one ever noticed it. I now just tell everyone "other arm." No one has ever been anything but nice. Many are in the habit of asking "where would you like it" first. Because of the radiation I went through, I was told I'd probably get lymphedema in 10 years. I do get some swelling if I overdo or sleep too hard on that arm.

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2 replies
trixie1313 | @trixie1313 | Sep 9, 2022
In reply to @callalloo "I just love when doctors are unable to confront their own human imperfection. A male friend..." + (show)
@callalloo

I just love when doctors are unable to confront their own human imperfection. A male friend spent 15 minutes listening to a doctor describe the several things wrong with him in an uninterruptible monologue while staring at his X-rays. When the doctor was finished with the bad news, my friend suggested that that was probably all wrong.

The doctor condescended
to point out that he is a doctor and my friend is not and therefore his opinion was less important than the doctor's. My friend said the doctor is still wrong and he can prove it. The doctor asked how he can prove it and my friend walked over to the X-ray to point out that it wasn't his name on it. He suggested that the doctor use his superior medical education to find the X-ray with my friend's name on it before diagnosing my friend's medical challenges.

I pointed out to my friend that, had he been a female patient, the doctor would likely have been even more annoying and dismissive...and his wife seconded that appraisal.

Jump to this post

@callalloo
Same thing happened to me but with my who urologist explained in a phone appt that my imaging procedure (done under sedation by his fellow urologist) was normal. I listened patiently to him and then told him I had the results in my hand as well as the imaging pictures and it was nothing but normal! That's when he actually looked at the imaging studies and apologized. I searched out and found another urologist who resolved the problem surgically. ALWAYS check and double check...doctors are human and make errors just like the rest of us!

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trixie1313 | @trixie1313 | Sep 9, 2022
In reply to @dlmdinia "I had lymph nodes removed on the right side. I was told no needles, no blood..." + (show)
@dlmdinia

I had lymph nodes removed on the right side. I was told no needles, no blood pressure on that side. I wore a medic alert bracelet warning against this, but no one ever noticed it. I now just tell everyone "other arm." No one has ever been anything but nice. Many are in the habit of asking "where would you like it" first. Because of the radiation I went through, I was told I'd probably get lymphedema in 10 years. I do get some swelling if I overdo or sleep too hard on that arm.

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@dlmdinia
Check also with your Physical Therapy Dept for stretching exercises for your arms which help clear out the lymphatic system. I've been through "axial webbing" several times (clogged lymph veins) and this helps immensely.

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dick61 | @dick61 | Sep 9, 2022
In reply to @dlmdinia "I had lymph nodes removed on the right side. I was told no needles, no blood..." + (show)
@dlmdinia

I had lymph nodes removed on the right side. I was told no needles, no blood pressure on that side. I wore a medic alert bracelet warning against this, but no one ever noticed it. I now just tell everyone "other arm." No one has ever been anything but nice. Many are in the habit of asking "where would you like it" first. Because of the radiation I went through, I was told I'd probably get lymphedema in 10 years. I do get some swelling if I overdo or sleep too hard on that arm.

Jump to this post

I had 6 nodes removed and three were positive. The Onco Type Dx test score was very low, and I luckily skipped chemo and went straight to proton radiation. I had a problem with cording but never have had a problem with lymphedema. I had a great surgeon. PT quickly helped the cording problem. Hope you do well and avoid that larger issue.

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