Axillary Lymph Node Dissection Dissection
hello,
I just completed chemo and am scheduled to have ALND. I am concerned with lymphedema. (Cancer was found in two of my lymph nodes , luckily were very small which was warranted chemo)
I recently read about a less risky procedure called Targeted Lymph Node Dissection. Has anyone had this?
I live on Long Island and am currently going to MSK on Long Island for treatment.
Am willing to go to other doctors for second opinions.
Thanks for any input
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Hi,
I also had two lymph nodes positive for cancer at diagnosis (confirmed by biopsy), and was told chemo followed by ALND was my only option, I was treated at Mt Sinai. After chemo, those lymph nodes were not palpable anymore, and they didnt show up in MRI, so my MO was sure they were obliterated and all was clear. However, surgery revealed that they still had cancer, both had macrometastases. I had the complete ALND and I am glad I did -I wanted all other nodes in the vicinity gone. What type of cancer do you have? If you are strongly hormone positive, your chances of having some residual disease are high.
I was also concerned by lymphedema. I consulted a lymphedema therapist prior to surgery, who took baseline measurements of my arm. After surgery, I also had radiation, on top of the ALND, which increases your chances of lymphedema. I went to therapy with the lymphedema expert to regain mobility. I swim and I am very active. I am one year out of surgery, I regained full mobility (but I did a lot of stretching exercises and physical therapy), and don't have lymphedema. Fingers crossed.
LaughingGull
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thank you for responding! I have triple negative breast cancer. I am meeting two breast surgeons this week , one at Columbia and the other at Ashikari breast center to get second and third opinions. For peace of mind I will probably have ANLD. I also will have radiation.
Thanks for the info
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I made a post (many nodes removed and you don't developed lymphedema?) because the ALDN is in my schedule too and I am so worried about the posibility to get it. Some women posted there. Maybe you like to read it. Hugh
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Warrior2019 - I did a sentinel node biopsy (2 nodes removed) and declined a further axillary node dissection as the 40% risk of lymphedema was too great for me, plus I found interesting studies and opinions like these. You need to weigh your own personal risk/benefit and do what's right for you. I have no regrets on my decision - radiation treated the positive nodes and tomorrow I'm off to play tennis (just a few months post final radiation treatment) as I have no lymphedema.
Click on these links to read the studies:
https://www.ncbi.nlm.nih.gov/pubmed/28898379
It's a personal choice but for me it's about how can I fight this while maintain my quality of life and have as little side effects as possible.
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yes I would definitely like to read it. Thank you
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Thank you PebblesV! I am so anxious with trying to decide what’s best for me. This is the second time I’ve had breast cancer. First time I had ductal in situ in left breast. Sentinel nodes were negative for cancer and I chose to have a double mastectomy. Had no chemo, radiation or pill. 8 years later, a biopsy found cancer in 2 lymph nodes ( I felt lump), thankfully small. Had chemo,now surgery...then radiation.. so nervous about lymphedema. Thank you for the articles, very informative
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Warrior,
The study referenced in the links above compares SLND agains ALND for patients that had "no palpable axillary adenopathy". In other words, these patients are not like you, and the results do not apply to your case. With palpable disease, further confirmed by biopsy, ALND is, unfortunately, the only option. With triple negative breast cancer, your available treatments are chemo, surgery and radiation.
I found talking to a lymphedema therapist before my surgery very very helpful, since they deal with this every single day. Unfortunately, lymphedema cannot be prevented. The reasons why some patients get it and some don't remain a mystery. Some people get one node removed and get lymphedema, some people get 30 nodes removed and do not get it. Being overweight is the only known risk factor.
I got all nodes removed, didn't get lymphedema, and a month after surgery I was back in the pool swimming -all strokes. Radiation didn't trigger lymphedema either, at least for now. Only one year out, though. Fingers crossed!
Best of luck to all, ladies
LaughingGull
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Warrior2019 - You’re welcome! I hope the articles help you decide and feel right about your decision. When I did radiation, the RO said they treated my lymph nodes since I declined the axillary dissection. He said at the end that he “treated them fully” and there are no clinical signs of cancer right now (let’s hope it stays that way). I was OK with the 15% risk of lymphedema with radiation but not OK with the 40% risk of lymphedema with the axillary node dissection. I AM taking tamoxifen so if there’s anything left it’s supposed to treat that.
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Laughing gull thank you for your response. You’re right, it seems that ALND is my only option. I will take your advice and speak with a lymphedema specialist ( which I would have thought the breast surgeon would have suggested!) Thank you so much for your your advice and best of luck and good health to you as well!
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My experience with cancer doctors, both the oncologist and the surgeon, is that they don't know all that much about lymphedema. They were telling me totally conflicting things. I read here about getting a baseline measure of your arm before the surgery. When I told the surgeon, he said that made sense and wrote a prescription but it hadn't occurred to him. The therapist will educate you on how to recognize the symptoms, things you can do, etc.
Right now, you don't have lymphedema, and you may never have it, what you have is fear. I understand, because I was terrified of it, and still am, maybe because I know a lady who had a really bad case. To deal with the fear, get all the facts straight. That will help.
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I had ALND (20 nodes removed), and never got lymphadema -- and I'm almost five years out. Pebbles V -- just curious -- where is this 40% risk number coming from? Is there a study that shows this? If so, it would be helpful if you could link to that study.
I was never given that 40% risk statistic by either my surgeon or radiation oncologist. Regardless, I'm fine and I was fine with the surgery.
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I found a discussion of research which cited a 19% risk for breast cancer patients who get ALND, not 40%. The risk for women who get SLND is only 3% according to that research.
https://www.facs.org/media/press-releases/jacs/lymphedema0313
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Hi ElaineTherese - the number can from my surgeon who was recommending the axillary node dissection but also being quite honest about risks, which I appreciated. The radiologist independently repeated that percentage so I did not think to question it.
Breastcancer.org alludes to it here:
https://www.breastcancer.org/treatment/surgery/lymph_node_removal/lymphedema
Very glad it didn’t happen for you! It’s all about our personal risk/benefits.
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I was given numbers ranging from "almost nothing" to "about 30%" to "less than 60%" (oncologist and surgeon at different points) and the other day I used some online calculator that gave me something like 64%
The risk is significant and lymphedema is a serious side effect -but when you have palpable metastases, you get the full dissection. Clinically, my nodes looked cancer free after chemo, but surgery revealed that I had 6mm of cancer in one node and 2mm in the other one. Knowing that they are all gone gives me (some) peace of mind.
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I had TNBC, and a palpable (huge 3 cm) lymph node upon diagnosis. And I did not have ALND...
I got an imaging pCR after chemo. So I asked my surgeon, "Since it looks good on MRI, and we think my cancer is gone, can you take a smaller number of nodes and then go back in for a second surgery if there is any live cancer?" She agreed, and during the LX took the one enormous node plus 3 more. The formerly cancerous node and one other node had scar tissue, the other two healthy. No live cancer. Very grateful to have kept my nodes.
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LaughingGull - if you’re nodes clinically looked good and then you had 6 nodes removed, I am wondering if you actually had a sentinel node biopsy and not a full axillary node dissection. They usually remove 1 to 5 nodes in a sentinel node biopsy and 10-20 in an axillary node dissection. And they usually do sentinel node biopsies first if there’s no clinical cancer. I did a sentinel node biopsy as well and sounds like that’s what Santabarbarian did too, and the risk of lymphedema is much less with that.
Found these:
https://www.google.com/amp/s/amp.cancer.org/cancer/breast-cancer/treatment/surgery-for-breast-cancer/lymph-node-surgery-for-breast-cancer.html
https://www.mayoclinic.org/tests-procedures/sentinel-node-biopsy/about/pac-20385264
Santabarbarian - I’m impressed you knew to ask for what was right for you at the outset and very glad it worked out for you! So many people just do what the doctor says and I think we all need to do our own research, get second opinions and speak up for ourselves as we are the ones that have to live with the side effects if they happen. So we need to be informed and choose what’s right for us.
Anyways just found this on bc.org re: risk scenarios - I guess there’s a pretty wide range, but it’s clear a higher risk with ALND (axillary node dissection).
“According to the National Cancer Institute, anywhere from 5-17% of women who have SLNB develop lymphedema. Among women who have ALND, the percentage is higher — from 20-53% — and risk increases with the number of nodes taken out.”
https://www.breastcancer.org/treatment/lymphedema/risk_factors
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Hi pebbles: I had a full ALND with the entire fatty pad removed. The fatty pad can have 5 nodes or 30 nodes, each person has a different anatomy. I wondered the same thing myself after getting the results!
Interesting conversation ladies
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good advice, thank you. As of now there has been no mention of having an mri until after surgery.. would make sense to have before surgery
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I had a completely clear MRI rightbefore surgery, and still had cancer in my nodes found during surgery!
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Hi Warrior - I wound up having ALND because cancer was found in three sentinel nodes after chemo. Going into surgery it looked like I had two possibly cancerous nodes, which would have meant no ALND. I was not happy when I woke up and the surgeon told me about the ALND. I was somewhere between livid and devastated, mostly because I was worried about lymphedema. And then they wanted me to have radiation!!! The first rad onc I met with gave me the 40% number. However, that number is from a poorly done study where some grad student used language recognition software to figure out how many patients had mentions of lymphedema in their medical records. Well even my own post op follow up report mentions lymphedema on my right side, even though at that point I was only 1 week out of surgery and my arm was fine. All I had was some fairly mild swelling around my breast and underarm from the mastectomy and reconstruction, which I would think is pretty standard a week out of surgery. The resident who wrote that up did not know what lymphedema is, nor do most doctors. Lymphedema is not just swelling, it is swelling that doesn't go away by itself. So that study would have counted me as having lymphedema.
Anyway, after that consult with the RO who told me I had a 40% chance of developing lymphedema but could not tell me my chances of recurrence with or without radiation, I went to a different RO at MD Anderson. He puts the national rate of lymphedema at 15% for patients who have ALND, but it varies greatly depending on who does your surgery and how they do it. He said at their center they run a 9% rate for patients with ALND and having radiation bumps that up by ~1%. He also said they do more of a level 1.5 dissection instead of a full level 2 dissection, I have no idea what that means. And he said 80-90% of the time they can reverse it if it's caught early. He was also able to tell me what my risk of recurrence was with and without radiation, so I decided to do the radiation (with him, not the first RO). A 1.5% risk of permanent lymphedema is acceptable to me, whereas a 40% risk was not.
While doing rads at MDA, I met tons of other women who had ALND in the rads waiting area over the course of six weeks. We were all in the same shitty boat - getting rads after mastectomy and ALND because there was residual cancer. But not a single one of them had lymphedema. One lady had 28 nodes removed. Another one I met had 30 taken out! You would think if the 40% were true, I would have met SOMEONE with a swelled up arm. But I didn't. Which makes me think the 1.5% figure is closer to reality.
I had surgery in August 2018 and finished rads in December. No lymphedema yet, and I do not baby my arm or hand like they tell you to. I am a runner and hiker (and swimmer and diver and paddler, etc), and I'm one of those people whose hands swell up during vigorous physical activity (both hands) to the point where I cannot get my rings off. They always go down within an hour, no difference between the two sides. I've had numerous scrapes and cuts. I accidentally grated my hand yesterday making cole slaw. I chew my cuticles (I know, it's gross, I'm working on it). Still, no problems. I think I'm fine, but still keeping an eye on things.
LG - for my ALND, they had to dig under the pec muscle. My fatty pad was removed as well. I had 18 nodes removed, but they were in 5 clumps. My surgeon didn't know how many she took out until the path report came out, they just sent clumps of "possible nodes" to the path lab. They also didn't do path on all the sentinel nodes, just at least one from each clump. All the level 2 nodes were looked at though. BTW, when my surgeons nurse called to give me the path results, she told me I only had four nodes removed. I already knew that was wrong because of what the BS told me after surgery but she insisted it was only four. Have you seen your path report, or are you going on a verbal? Oh, and my last CT scan showed two possible nodes still in the "deep axilla". I was actually kind of happy about that. Maybe that's the level 1.5 dissection my RO was talking about.
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LaughingGull - how funny that you wondered the exact same thing! Thx for clarifying and what a relief for you that they ended up only taking out 6 nodes.
Hapa - very insightful stuff. I made my decision based on not willing to take on the 40% risk of lymphedema. I wonder if we can find that study you mention the stat was initially based on? I did find this which breaks out risk on total treatments beyond just the surgery.
https://www.ascopost.com/issues/june-10-2017/lymphedema-risk-it-s-not-just-about-the-surgery/
Warrior2019 - looks like you have plenty of data and stories in both sides to help inform your final decision. Good luck and pls keep us posted!
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thank you all for sharing your experiences and articles. It’s all so overwhelming ! Curious to see what thetwo breast surgeons I’m meeting with this week say ..
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I am one of those who had a clean MRI, mastectomy and 3 clean sentinel lymphnodes but a random 4th node came back with a micromet. I then had a recurrence and radiation a year later.
I’m thin, mid 30s, exercise 5x a week, eat a very clean/organic/non-processed/no-sugar diet. I’ve had pre-clinical LE starting at 7 months and just last week (1 year post final radiation, 2.5 years post mastectomy and ALND) my hand started swelling mildly. I have an LVA scheduled soon so fingers crossed. However, I would much rather have lymphedema than have breast cancer and I learned that the hard way after the recurrence. I go to MSK, got three opinions for both my diagnosis (including at MD Anderson) I do what my doctors advice because no amount of Googling will make me an Oncologist/Radiologist/Breast Surgeon. For me, there would be no point in going to the best cancer hospitals in the world and then not listen to the advice they give me. But we all must choose our own paths and make our own bets on our future as we are the ones who must deal with the consequences of our decisions :
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Thank you lady for your contributions, this has to be the thread to learn everything about ALND.
Pebbles, they didn’t take only 6 nodes. They took my entire fatty pad with ALL of my nodes, and there were 6 of them.
Now to hapa’s question, yes, the pathology says 6 nodes. I discussed this with the surgeon, he is a top surgeon and also an old and very experienced man who has seen a lot. He explained to me that there was no chance he had left anything behind, explained what fatty tissue looks like vs nerves and other type of tissue remaining. He also said he suspected that the 6 nodes in the pathology report were actually clumps of nodes that had matted together as a result of disease, and that back in the old days the lab would have identified and counted the original number of nodes but that they dont do it anymore. MOs at my hospital and two other places said they had never heard of that and that it was probably just my anatomy
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"He also said they do more of a level 1.5 dissection instead of a full level 2 dissection, I have no idea what that means."
We all have three levels of axillary lymph nodes. Traditionally, ALND has meant taking all the Levels 1 and 2 lymph nodes. Maybe, the doctor was saying that they still take all of the Level 1 lymph nodes but only half of the Level 2 lymph nodes. Just a thought.
I got all of my Levels 1 and 2 lymph nodes removed, which turned out to be 20 in my case.
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I also got a second opinion at MSK before surgery, with anothertop surgeon, and he was also adamant that all my nodes had to go and that it had to be ALND.
So I was not given any options or allowed to pick between ALND or SLND. Also my priority was getting rid of the cancer and minimize the chances of recurrence. If they had offered me to pick a more conservative surgery that would lower my chances of lymphedema (even by a lot) by increasing (even by a tiny little bit) my chances of recurrence, I would have gone with the more aggressive surgery. I have young kids and I prefer to be around one extra year around them, with lymphedema or even with an entire arm chopped off, rather than having a recurrence.
I did have the option of choosing between having radiation or not and chose to have it, even if it increases the chances of lymphedema even further.
Manuella, sorry you are facing some lymphedema. I don’t baby my arm, just as hapa, but I know I am not in the clear, and I can be you any day. Like you I am very active and healthy and can’t understand why I got this cancer in the first place. Here is to you keeping the LE under control, girl.
Love to all
LaughingGull
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And just to be clear, pebbles, the hypothetical choice I am describing above is just hypothetical, I am not suggesting in any way that those were your choices. Each cancer is different and I bet there were considerations in your case that made SLND reasonable for your case
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PS I wasn't offered a choice -- I asked for a compromise. After neoadjuvant chemo, I had had a MRI and mammo which both looked clear. My BS announced she'd be taking all the level 1& 2 lymph nodes at our pre-surgery meeting, as I had presented w 3 or 4 nodes. I have a friend with horrible lymphedema so I am aware of it and wanted to decrease my odds.
I offered to do a second surgery if any live cancer was found, so my BS supported me to take only 5 nodes (wound up w 4). My argument was not wanting to base our lymph node decision on my presentation but rather on my response to chemo. I am ok with the extra grain of risk as I did rads anyway due to LX.
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LaughingGull - of course, no offense taken at all and I think everyone just needs to make the right choices for themselves, feel good about them and motivated to move forward and beat this.
For me personally, the SLND vs ALND decision came out of a study where they tracked women who had micromets in 1-3 nodes who did SLND vs ALND for 10 years, and quite a surprise found that the ones that did SLND had a lower risk of recurrence than the ones who did ALND. The researchers were actually surprised by the results and theorized that possibly it was because those who did ALND had a higher % of lymphedema and were less active as a result (another well known study showed 30 min. exercise a day 5 days a week helps reduce recurrence risk by half). Also those who did SNLD were able to treat nodes with radiation and hormone therapy. This was also for ER-PR positive breast cancers so happens to be very specific to my case, doesn't fit everyone.
These are the studies:
https://www.ncbi.nlm.nih.gov/pubmed/28898379
https://jamanetwork.com/journals/jama/article-abst...
https://www.everydayhealth.com/breast-cancer/treat...
RE: trusting your docs, I did trust my surgeon and radiologist in what they told me re: risk of recurrence, never thought to question that (they said 40% with ALND and 15% with radiation). They give their advice and reco and let me decide what to do which I appreciate even more now.
I will share a story though on the need to do your own research and make your own decision for yourself. When this happened to me, a friend referenced me to a friend of hers who was pregnant when she learned she had breast cancer. First doctor told her to abort the baby. So she got a second opinion. Second doctor said they could do chemo in the second trimester and baby would be protected. So she did that, actually fared through chemo really well possibly b/c her immune system was so strong with the pregnancy! Today she is cancer free years later and with a family, and that child would not have been born if she simply listened to the first doctor. So, another reason why I'm a proponent of getting all the expert advice but being informed yourself too and making the decision that's right for you - it's your life.
Also, recurrences can happen regardless, unfortunately there are no guarantees. I've seen people do everything and still get a recurrence, others forego all treatment and thrive with no recurrence. And visa versa too. Which is why it's all about everyone's personal level of risk/reward.
LaughingGull if you're fine with your arm cut off to be there for your family then more power to you and I respect that! You’re braver than me. I am not fine with that but it doesn't mean I intend to be there for my family any less, I intend to survive this, and maintain my quality of life as much as possible while I do.
Santabarbarian - just saw your post and I have SO much respect that you spoke up for yourself even when not offered a choice. You're an inspiration
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Santabarbarian that was a well thought out plan. Your surgeon was reasonable. It was great that it worked out well.
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