Need advice .Remove lymph nodes or not?
I recently had breast cancer surgery and my surgeon only removed one lymph node. Everyone is telling me this is a death sentence, that it is always safer to remove all the lymph nodes. They say the cancer will come back and travel through the lymph nodes all over my body.
I would like to know how many of you out there had all your lymph nodes removed. And those who didn't, did the cancer come back?
My surgeon did something called a sentinel lymph dissection and that satisfied her that none of the other nodes needed to be removed.
I really love my doctor but am wondering if it would be better to get a second opinion.
Comments
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Hi searcher,
From the main Breastcancer.org site:
"The idea behind sentinel node dissection is this: Instead of removing 10
or more lymph nodes and analyzing all of them to look for cancer,
remove only the one node that is most likely to have it. If this node is
clean, chances are the other nodes have not been affected."You can read more on the Sentinel Lymph Node Dissection section on Breastcancer.org.
We hope this helps!
--The Mods
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oh searcher,, I don't know who is giving you this misinformation!!! Please read what the moderators linked above about sentinel node dissection. They remove the first node from the breast,, sometimes it is more than one,, like in my case, he took 6 cuz they were all next to each other. If the sentinel (first node ) is cancer free, ,there is no need to take more. If the first one doesn't have it,, the next ones down the line won't either. Removing all the nodes makes you much more at risk for Lymphedema,, removing even one node can cause it, but the more you remove, the greater your chances of getting it. Your surgeon did the right thing. -
"Death Sentence" - who are these 'peebles' and how do they know what tomorrow brings? There are no absolutes (or guarantees) in life.
You didn't say anything about your type (DCIS/IDC/ILC/IBC), stage, ER/PR/HER2 status- protocol is different. Did you have a mastectomy or lumpectomy? There is so much that comes into play with what is the INDIVIDUAL TX plan.
Take any/all info you get here and talk with your Dr(s). I am different than you - as is everyone. Some are closer to each other but no one is exactly the same as another.
I had 19 nodes removed and all 19 were positive for cancer. That was 5 yrs ago and even being IBC, I'm still here and NED (No Evidence of Disease). Go to your Dr(s) with questions and keep asking til you have an answer you understand! Ask more questions/get answers as needed.
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Hello, Searcher, I am sorry you have had to join us here, but very glad you've found us. Don't you love those armchair experts! They always get it wrong! Telling someone that any of their treatment is a death sentence, is appalling behavior.
I agree with everything the others have said. Read up on the information the Mods have supplied and tell those people who haven't a clue what they are talking about, that you have the latest information and you are very comfortable with the decision you and your Surgeon made, to do the SNB and you're very relieved that it came back negative for any invasion. Had there been any dispute with the Pathology, more nodes would have been removed. In your case it was unnecessary which puts yu a less risk of Lymphedema.
The SNB is a Godsend, for women having this kind of surgery. It wasn't all that long ago, that a full axillary clearance was routine. My Mother had one, when she had a Mx in '94, none of her nodes were affected, but she had Lymphedema for the rest of her life. She never had any recurrence.
I wish you all the very best and please don't let those people upset you.
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Forgot about LE (LymphEdema). Get a referral to a LymphEdema Therapist for an evaluation now - not later. Not some 'PT' who claims to know 'all about LE' but someone who has a certificate of education . My LET guy is also an OT as are some PTs.
Any surgery or traumatic injury can result in LE. It does not take removal of nodes for it to develope. I have a friend who had non-invasive knee surgery. She deals with much more LE issues than I do with my nodes removed.
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searcher don't listen to these people they have no clue. My neighbor was just diagnosed with breast cancer and she only had one node removed-it was negative. I had 3 removed and one was positive. I asked if I then had to do an ALND and the answer was no.
Nancy
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Thank you all so much for your responses.
I did read the "Sentinel Lymph Node Dissection" article on this site. But after reading it, a couple of things bother me.
First, the article says that even if the sentinel node is "clean," the surgeon usually still removes a cluster of two or three nodes closest to the sentinel node. My surgeon said that there actually were a few cancer cells in the sentinel node but if there are only a few cells the node is considered negative for cancer. Further, she did not remove any other lymph nodes.
Second, the article says that strategic removal of just one or a few key underarm nodes can accurately assess overall lymph node status where the breast cancer is relatively small, under 5 cms. Accorging to my MRI, I had 2 masses ( 3 X 3.4 X 2.1 cms; 1.3 X 1.3 X 1.1 cms) in the right breast, plus innumerable 2-3 millimeter nodules scattered throughout the right breast encompassing an area 9 X 9 X 9.8 cms.
I just rather error on the side of caution and I think that if I want the nodes out they should be taken out. The problem is, can I find another surgeon willing to go in after the original surgery to take the nodes out?
I don't have the pathology report yet but supposedly they found some cancer in the left breast as well, but it's not "invasive" so they might not be removing it. Haven't researched that concern yet.
Thanks again.
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searcher,
If no one nor your pathology report thinks that axillary node dissection is warranted, why do you think it would be a good thing? More is not always better and cancer cells can travel through the bloodstream as well. There are no guarantees with bc and sentinel node biopsy can be just as effective as AND in many situations. Good luck to you.
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The sentinel node, BTW, does not always literally mean a single node. The following is from webmd:
In breast cancer, a sentinel node biopsy pinpoints the first few lymph nodes into which a tumor drains (called the "sentinel" node). This helps doctors remove only those nodes of the lymphatic system most likely to contain cancer cells. The sentinel nodes are the first place that cancer is likely to spread.
In breast cancer, the sentinel node is usually located in the axillary nodes, under the arm. In a small percentage of cases, the sentinel node is found somewhere else in the lymphatic system of the breast. If the sentinel node is positive, there may be other positive lymph nodes upstream. If it is negative, it is highly likely that all of the upstream nodes are negative.
Hope this sheds a bit more light on the situation. Again, more is not always better and no guarantee against metastasis . More invasive node dissection cares risks and side effects as well.
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Searcher -- I (unlike you) lobbied for the removal of fewer rather than more nodes... My surgeon thought removing only the one biopsied with cancer was not enough... and in the end we arrived at a compromise of what turned out to be 13 nodes.
I have had pain and cording in the arm on the cancer/node-removed side -- and then arthritis set into my shoulder on that side because I didn't move the injured arm enough -- due to the pain. Physical therapy has been very helpful, but it has cost thousands of dollars... and if I could turn back time, I would have stuck to my guns and only let them take the first cluster of 3 nodes. (They biopsied all 13 they removed, only the first one had cancer).
Just as others have said, each one of us here has different and unique needs... no two cancer patients are the same.
The tumor in my sentinel node was larger than my primary tumor in the breast... and the way I thought about it was "Thank you, Little Node, for doing such a fantastic job of filtering and collecting the cancer cells that attempted to move to new locations!"
It isn't a perfect analogy, but think of your nodes as a string of pearls. The first pearl in line screened out and collected the very-few cancer cells that tried to travel...
The surgery is over. Thinking positively now is probably the best medicine... in my experience surgeons err way more often on the side of cutting more -- not less -- so try to be happy that your nodes did their job, and that they are STILL there working away to screen any future traveling cancer cells, just in case you still need them.
You didn't fill out the profile, so I don't know if you had lumpectomy or mastectomy... but either way, in my book the more nodes you have the rosier your future is as they are your first line of defense.
Unfortunately, as exbrnxgrl reminds us, stray cancer cells may have also traveled through the blood stream, so nodes alone are not a perfect natural defense -- but they are pretty darn important, and I am sure glad that mine did their job!
Try to relax -- it is a tough time with so many decisions to make... and it can be hard to 'step-down' that constant worry... but anger/worry/fear will only make the experience more negative, which is not conducive for your healing... so why not go with it for now, and decide to be thankful that you didn't have more nodes removed, as they are important body parts that help us "take out the trash".
Best of luck --
Linda
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Searcher - sometimes the only thing that satisfies is getting a second opinion.
If that is what you need, do it.
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Thank you all so much for all the great information. I'm starting to relax a bit about the lymph node issue. I really do like my surgeon, so I guess I'll just trust what she says . Waiting to hear from pathology as to whether or not some skin grafting will be necessary due to some of the cancer having been so close to the skin. FYI, I got both breasts removed with a "Goldilocks" procedure. Not sure yet if I am Stage 2 or Stage 3. I hope to find out at my next appointment on Friday. -
Hi Searcher and others, I'm having a mastectomy in December and am currently discussing with my surgeon how many lymph nodes to take out. Apparently ASCO (American Society of Clinical Oncology) just updated the guidelines on sentinel lymph nodes the spring. The new guidelines (I pasted the link below) are much more liberal about not taking so many out. Not sure if this is the same thing that kayb referenced above. I'm also on the fence because my tumor is multifocal and the biggest was 6 cm when I started chemo in June, so these new guidelines may not apply to me, and I may have to have them all out. I can't really understand why they can't take out, say, half, and go back for the other half later if need be but my surgeon did not really offer this as an option.
Searcher, how was your appointment today?
I also wanted to ask you about your Goldilocks mastectomies. Are you happy with them? And are you having radiation afterwards, and if so, how is that expected to affect your new Goldilocks breasts?
thanks so much!
Izzy
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Does any surgeon (in the U.S.) remove all theirpatients' lymph nodes? I didn't think it was done at all anymore.
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Hi everyone,
I thought I would jump into this conversation to share a different, yet similar story. Prior to my bilateral mastectomy, I did NOT consent to ALND. However, at the time, nobody was expecting any of the lymph nodes to be positive. My tumor was only 1.9 cm large, a grade 1 and ER/PR+ and HER2-. So, off we went to just expect the SNB to be negative. Unfortunately, the sentinel node was positive with a 1.3 cm tumor, yet the other two adjacent nodes were negative. I discussed at length with my BS, my PS and my RO and at the end of the day, I have chosen to go back in and allow the BS to do the full ALND. Now, I am very concerned about the risk of lymphadema. However, I am also concerned with the cosmetic outcome, as I have TEs and plan on not only replacing what I had (small breasts), but also augmenting. The PS was very clear with me that radiation has definite effects on the cosmetic outcomes of reconstruction, and reminded me that even radiation has a risk of lymphedema.
So - off I go today for another surgery to remove just the core axillary node bundle. My breast surgeon has promised me to be very meticulous in her anatomic dissection and I will be very dedicated to rehabilitation and continuing my exercise program. It will certainly help that I am extremely active, already have a workout program that includes upper body toning and will also quickly bring in a PT who specializes in this area.
Not sure if this helps anyone, but I do understand the agony of this decision as it does have serious longterm effects on quality of life. As I am 42 and travel a lot for business...this was a tough one for me.
Good luck to all!
Akitagirl
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HI Akitagirl - I'm so sorry you had to go back in for more surgery but based on what you said, better to be cautious. I hope you're feeling better.
Still have not come to a decision about my case but I'm feeling (relatively) happy that my BS said it would be OK to have immediate recon even though I will do radiation. The recon will be lat flap+ implant, and reduction on the other side. I'm terrified of surgery so I'm happy to have this possibility even if the results aren't perfect.
xxx Izzy
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I had a sentinel node biopsy last week. Everyone (both surgeons I consulted, oncologist and research I've done on my own) seems to believe this is the way to go. I have no idea who might have told you it is a death sentence. SNB seems to be the standard of care and preferred option these days for breast cancer surgery. The alternative of a full dissection seems best avoided if possible. In many cases, sentinel node biopsy involves pulling more than one node. I had 4 light up in blue, making them all sentinel nodes that were pulled, the surgeon said 2 more just popped out and when the pathologist got done slicing and dicing and whatever else they do, he found 12 nodes in the tissues that were removed. And even though 1 or these 12 was positive (just a few cancer cells) the surgeon doesn't believe it should change my prognosis, treatment plan or that it even calls for more surgery (ALND) which I'm happy to avoid, although I'd feel better if no cancer was found in the lymph nodes of course.Lots of factors come into play for our treatment plans, lymph node involvement is just one of them. Tumor size and grade, type of cancer are others. I think avoiding the ALND if at all possible is a good idea. We certainly don't all need it since so many surgeons and oncologists recommend against ALND unless something else shows the need for it. From what I've read on here (look at various members DX and surgery treatments) the SNB is what most of us get done initially and if it shows no cancer we can pretty safely breathe a sigh of relief and move on to the next phase of out treatments.
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Akitagirl - LE (lymphedema) can result from any surgery or traumatic injury. Nodes do not have to be removed for it to develope. I have a friend who had non-invasive knee surgery - she deals with worse LE than I do and I had 19 pos. nodes removed. There is no way to know for sure rather or not LE will develope (or if it does - when).
Unfortunately - many Drs are not as educated as they should be when it comes to LE. It is a good idea to get an appt with an LE Therapist now/before any developes for a 'baseline' and education. Not every PT who claims to 'know everything about LE' do unless they have the specialized education. My LET guy is an OT (Occupational Therapist).
Even as 'old' as I am, I can assure you that I am VERY active (more than many much younger) and my QOL is not limited at all by my LE. I do have to deal with it daily, however, it does NOT stop me from my gardening, lawn mowing (my yard and others to help out) with my push mower, bicycling, caring for and working our horses, fly fishing are some of 'my favorite things'. I refuse to not live every day to the utmost.
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