Hi - I am new here. Just had lumpectomy and LICAP Flap repair 1.5 weeks ago. The pathology indicates that 3 of 3 lymph nodes have macrostatic cancer and one extra (outside the node) slightly; this was from Sentinal Node Biopsies/extraction.
As a result now they want to do Axillary Lymph Node Dissection. I’m still unsure what specfic lymph nodes this entails. From everything I’ve read this second surgery has sort of high risk of lymphedema and the outcomes not too much different than radiating that area. So I’m not sure whether to have that surgery. Trying to arm myself with as much info as possible before my follow up this week.
My cancer is Lobular invasive, hormone positive, not ductal. Don’t know much but chemo maybe not that effective. I don’t do well with drugs so I don’t like what I’m reading in here about drug side effects either.
Any thoughts on ALND or not? Thanks in advance and good luck to you all.
I would advise removing nodes as soon as possible. From what I understand they are the conductors of cancer spreading around your body.
I had it done and it’s fine. Also while there is a risk of lymphedema it won’t kill you unlike what cancer can do. And even worse case scenario there is a lot to do to manage lymphedema these days.
My own surgeon (once I had a positive node) removed all mine on that side a week later.
I know everyone is different but doing everything humanly possible to remove cancer and the cells was what I was aiming for. Once I had the positive node chemo was an automatic based on my oncologist. Again not pleasant but doable.
I had and appointment with Radiologist today who also encouraged me to remove them. I’m really glad it did no harm to you. Also that is encouraging to hear.
I have more appointments this week and this reply is truly helpful.
I certainly endorse the advice given by SL255. I had an axillary clearance last May as 4 lymphnodes had cancer in them - 3 macrostatic and one microstatic - with extracapsular spread. Unfortunately I have lymphoedema in the breast but this is being treated at our lymphoedema clinic and I am waiting to have kinesio taping which, I hope, will alleviate the discomfort. This is a small price to pay for knowing that I have done everything necessary to get rid of the cancer. I would not hesitate to have the full clearance.
Ask your surgeon if there is a new technique to help avoid lymphedema- it wasn’t available to me but there are new methods.
Also one thing I am using - there is a machine that measures your fluids in your body before surgery and then you will measure every three months after surgery. It’s very quick and works by simply putting your hands on a machine and standing on it. It’s called sozo. If they see an increase in fluids (more than the naked eye can see) there is a risk. So it’s a comfort to go back to the physio to help with this as so far so good. Plus there are lots of good exercises to do to help prevent it.
Best and luck with it. The surgery is fine just be careful with your arm and make sure you follow the advice they give to prevent any problems!
Hi, it’s really tough to make these decisions, isn’t it? Even though we, as patients, want to feel empowered, we’re not specialists. I was offered the chance to join a clinical trial where there was a 50% chance I’d have ALND and a 50% chance they’d remove only a few lymph nodes (4 or 5, just the ones that looked suspicious) followed by radiation. From what I understand, the standard care for positive lymph nodes is ALND, but there’s a 20% risk of developing lymphedema. They now believe radiation can be as effective, but there’s only five years of data supporting it, and they still lack long-term safety and efficacy data. The goal of the trial is to show that ALND may not be necessary.
In the end, I chose ALND because I didn’t want to take any chances. When the pathology report came back, I found out I had 7 positive lymph nodes. I was relieved that they were all removed, and I still went through radiation to my armpit. It’s been almost a year and a half since surgery, and I don’t have lymphedema (fingers crossed it stays that way!). Even if I do develop it, I honestly don’t think I’ll regret my decision. Cancer is such a B…ch, and I wasn’t willing to take any risks.
I wish you the best of luck with your decision. I know it’s never easy.
Thanks Marie. That’s just the type of research I had been looking at which made me hesitate on ALDN. I’m glad it turned out well for you. I’m believe I’m going to go forward with ALDN. It’ s not clear to me which or how many they remove but fingers crossed.
I’ve also had full node clearance after one of the 2 sentinel nodes removed during my lumpectomy was positive for cancer with extra capsular spread. That triggered an Oncotype test which I could have waited for the results before making my decision, but I just wanted them removed as soon as possible. Turns out none of the 14 nodes removed had cancer in them, but there was no way of knowing that and I have no regrets. On the contrary, I’m grateful for the peace of mind.
My surgeon said the Marsden is trialling a procedure to improve lymphoedema so there is hope if it develops. I was very happy to take the risk. Best of luck to you going forward x
I posted here back in September after getting similar news (also HR+ lobular with 3/3 postive nodes in the biopsy). Radiotherapy was the offered alternative to clearance, but the oncologist advised against it because only a small percentage of people who participated in the clinical trial which justified it (amaros) had three positive nodes. I went for the surgery, which removed 17 additional nodes, 1 of which was positive. It took me a while to recover from the surgery due to a persistent seroma, but that eventually settled down. I’m now halfway through chemo. Let me know if you’ve got any questions.
Thanks - I’m seeing oncologist tomorrow; I may come back with you for questions.
I fear they will recommend chemo for me which I never thought was in the cards. I also fear the surgery. I’m going to question everything but I guess I will do what’s best. I would like to know about how both went for you and how it’s going. Let me see what they say.
I hope you are doing ok. This forum seems to be very helpful!
I hope the appointment goes well today and addresses some of the unknowns. I’m doing well, the second surgery wasn’t much worse than the first and the chemo is unpleasant but manageable - like you I was not expecting to be on this path because imaging gave no indication that my nodes were affected. Keep the questions coming!
I learned that if chemo 4 doses 1 month apart. Depending on my oncology score and whatever comes back from the nodes. Hopefully having mode surgery next Tuesday. Still waiting to do one more imaging test.
I might have questions if I end up doing chemo. Is that similar to what you’re doing? 4x?
I’ve got 6 doses 3 weeks apart, 3 EC, which I’ve completed and 3 docetaxel, which I start tomorrow. I wasn’t offered the oncotype DX test, the oncologist said chemo was a no brainer because I’m premenopausal. I guess the chemo prescribed may depend on your particular pathology, I’m grade 2, HR+, HER2-. Best wishes with the surgery. x
It’s a difficult time for you. Following lumpectomy I had 11 out of 17 nodes showing positive for cancer cells so had clearance, chemo and radiotherapy. Three years on and I have had no problems at all. It’s doable. Good luck
Thanks Pengu1n - I just read my pathology report this morning and 7 of 36 positive. Now I am researching whether or not to have chemo. I don’t want to have it if the benefit is not clear. I guess that’s where I’m at.