No sentinel removal?

Posted by texas5 @texas5, 5 days ago

Treated at MSK where a new protocol to not remove sentinel node for early stage breast cancer is negative on Ultrasound.

Anyone have similar experience?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

My doctor mentioned that he could remove no lymph nodes while standing in the hallway. I had the surgery, and he removed 9 perfectly good lymph nodes. I have had lymphedema after surgery and whole body looks terrible shoulder cracks. It is painful. You will need someone to help you if you are like me and could barely hold a cup of water. Couldn't even mouse for a long time. My hand still keeps me awake 8 months after. The plan was to test 1 lymph node on each side as I had stage 1 on both breasts. I called another hospital a few days after the surgery and was told by a doctor that he would not take my doctor's leftovers. I found out recently *heard on the news that the hospital I went to has a grade D in surgery. My surgeon was a 5 out of 5 on the net . . . ! queston mark!! I was awake last night looking at my veins that are visible through my skin. My skin looks like someone who just lost 100 lbs. very saggy, etc. I wish someone would tell me how it is OK for me to be treated like this and what they would advise. I have had an open wound ever since month 3 after surgery. I am concerned about how I will get it repaired with having so many lymph nodes removed. Your life could be forever altered like mine. If you are like I was before surgery you don't have your normal brain to absorb it all, because your brain wants to kick out the miserable stuff. I did not know anything about breast cancer. Can anyone tell me what they would do in my present situation. I have been treated very differently by medical staff after surgery. I made it known to the doctor right off the bat that a plan to test 1 lymph node on each side that morphed into having 9 good lymph nodes removed was not something that I thought was fine. My PA thinks it is fine. Other doctors think it is fine or say nothing. People are very ignorant about the lymph nodes they do lots of good things for you including fighting cancer. Try to get all the knowledge you can and get at least one more opinion. I did not. So much for trusting the doctor.

REPLY

By the way what does MSK stand for?

REPLY

I had one breast, stage 2 and the 3 sentinel lymph nodes from the tumor removed. I would like to know why 9 were removed for you?

REPLY
@1cs

By the way what does MSK stand for?

Jump to this post

Memorial Sloan Kettering

REPLY

For me I would insist on sentinel being removed because lobular doesn't show on mammo or US and occasionally is missed even on MRI. Surgical pathology is the only way to ever know for sure. Conversely, if they can guarantee you 100% that your treatment protocol wouldn't change, then maybe it would be ok. I would definitely ask - what if the surgical pathology comes back showing a much larger and/or aggressive tumor and now you have no way to take out my sentinel lymph node to know if it spread - what impact does that have on my treatment protocol?

REPLY

Let me correct my above statement - I would only insist on the sentinel node removal if no impact to treatment And it was a mastectomy being done b/c once mastectomy is done they can never go back and accurately find the sentinel node. If you're only having a lumptectomy, then it makes sense to hold off on sentinel nodes with option to do later if needed.

REPLY
@1cs

My doctor mentioned that he could remove no lymph nodes while standing in the hallway. I had the surgery, and he removed 9 perfectly good lymph nodes. I have had lymphedema after surgery and whole body looks terrible shoulder cracks. It is painful. You will need someone to help you if you are like me and could barely hold a cup of water. Couldn't even mouse for a long time. My hand still keeps me awake 8 months after. The plan was to test 1 lymph node on each side as I had stage 1 on both breasts. I called another hospital a few days after the surgery and was told by a doctor that he would not take my doctor's leftovers. I found out recently *heard on the news that the hospital I went to has a grade D in surgery. My surgeon was a 5 out of 5 on the net . . . ! queston mark!! I was awake last night looking at my veins that are visible through my skin. My skin looks like someone who just lost 100 lbs. very saggy, etc. I wish someone would tell me how it is OK for me to be treated like this and what they would advise. I have had an open wound ever since month 3 after surgery. I am concerned about how I will get it repaired with having so many lymph nodes removed. Your life could be forever altered like mine. If you are like I was before surgery you don't have your normal brain to absorb it all, because your brain wants to kick out the miserable stuff. I did not know anything about breast cancer. Can anyone tell me what they would do in my present situation. I have been treated very differently by medical staff after surgery. I made it known to the doctor right off the bat that a plan to test 1 lymph node on each side that morphed into having 9 good lymph nodes removed was not something that I thought was fine. My PA thinks it is fine. Other doctors think it is fine or say nothing. People are very ignorant about the lymph nodes they do lots of good things for you including fighting cancer. Try to get all the knowledge you can and get at least one more opinion. I did not. So much for trusting the doctor.

Jump to this post

I am sorry that you had to go through that situation. Now you need to find a doctor who can help you heal. Did you you go back to your surgical team and tell them about not being able to heal? What happened? You should be completely healed. Did you sign a consent form the day of your surgery stating what exact surgeries would be done? What did it say? That absolutely was supposed to be done.
The doctors, nurses, and patient advocates, are all going to protect one of their own, not you. I went through this at my hospital, after my problems with my mastectomy. Get help with your healing. You might have to go to a doctor in another county. You also might need physical therapy. Consult with a large medical malpractice law firm. You have two years to pursue a lawsuit, if warranted. Please do not mention a lawsuit, or your anger with your surgeon, to any doctors, they do not want to hear it. You will feel better once you get good help with healing, and rehab, and empowered with new knowledge about your rights.

REPLY

I had my DMX w/AFC and bilateral sentinel node removal at The Mayo Clinic with Grade 3 DCIS HR+ diagnosis.

REPLY
@1cs

My doctor mentioned that he could remove no lymph nodes while standing in the hallway. I had the surgery, and he removed 9 perfectly good lymph nodes. I have had lymphedema after surgery and whole body looks terrible shoulder cracks. It is painful. You will need someone to help you if you are like me and could barely hold a cup of water. Couldn't even mouse for a long time. My hand still keeps me awake 8 months after. The plan was to test 1 lymph node on each side as I had stage 1 on both breasts. I called another hospital a few days after the surgery and was told by a doctor that he would not take my doctor's leftovers. I found out recently *heard on the news that the hospital I went to has a grade D in surgery. My surgeon was a 5 out of 5 on the net . . . ! queston mark!! I was awake last night looking at my veins that are visible through my skin. My skin looks like someone who just lost 100 lbs. very saggy, etc. I wish someone would tell me how it is OK for me to be treated like this and what they would advise. I have had an open wound ever since month 3 after surgery. I am concerned about how I will get it repaired with having so many lymph nodes removed. Your life could be forever altered like mine. If you are like I was before surgery you don't have your normal brain to absorb it all, because your brain wants to kick out the miserable stuff. I did not know anything about breast cancer. Can anyone tell me what they would do in my present situation. I have been treated very differently by medical staff after surgery. I made it known to the doctor right off the bat that a plan to test 1 lymph node on each side that morphed into having 9 good lymph nodes removed was not something that I thought was fine. My PA thinks it is fine. Other doctors think it is fine or say nothing. People are very ignorant about the lymph nodes they do lots of good things for you including fighting cancer. Try to get all the knowledge you can and get at least one more opinion. I did not. So much for trusting the doctor.

Jump to this post

I’m so sorry you suffer so much from that surgery. My understanding is that surgeon only removes 2 lymph nodes if the sentinel lymph node biopsy is performed. Why 9 perfect good ones? This could be his skeleton in the closet. The goal right now is focusing on getting healed properly. My prayers are with you during this difficult time. Sending love and positive thoughts to you. Hugs.

REPLY
Please sign in or register to post a reply.