I’m 42 and recently diagnosed with ILC HR+ HER2- in left breast. I underwent lumpectomy and SLNB three weeks ago. The cancer was 40mm, and 3/3 nodes were positive. I’ve been offered a choice between node clearance and radiotherapy for the remaining nodes. Having read the results of the Amaros trial, I would be happy to opt for radiotherapy to reduce the lymphodema risk. However, the decision has been complicated by my surgeon having indicated that if I opt for node clearance he will take the opportunity re-excise the lumpectomy to improve the margins, which were negative, but as little as 1mm in some places. I’ve read several studies that suggest that a clear margin no matter how small is good enough, but his apparent lack of confidence is making me nervous. Can anyone offer advice based on their experiences?
Welcome to the forum @flower5 . I can’t help with your question but I’m sure there are people on the forum who been in similar situations and will be along to share their experiences .
You could also ring the nurses on the forum to discuss this if you would like to talk it through 0808 800 6000 ?
Hope you come to a decision you feel
comfortable with . Best wishes Jill
Hi @flower5
I’m 45, diagnosed in May with HR+ HER2- cancer. My sentinel node biopsy identified 2/6 nodes involved. The MDT decision for me was to offer full axillary node clearance rather than XRT. It was briefly mentioned but they strongly recommended the surgery. I believe in the USA it’s more common to offer the radiotherapy rather than surgery and it does certainly seem to reduce the risk of lymphoedema. A radiologist friend who looked at my pathology could see the amount of cancer in the nodes was quite significant and there was some extranodal spread so she agreed with the recommendation. I had the surgery and I’m not going to lie, it was a lot more brutal than the first one. They took 23 more nodes, one of which showed cancer. So perhaps the surgery was overkill 
If you’re happy with the radiotherapy plan I think that’s perfectly reasonable.
Regarding the margins, I believe the cut off in the NICE guidelines is actually 1mm and maybe your surgeon takes a more cautious approach. My margins were 3.1 (deep) and the others all greater than 10mm so to me 1mm does seem a bit tight, but it’s whatever you’re comfortable with. It seems a little strange that he would re-excise if doing the clearance, but otherwise hadn’t planned to, and presumably you will be having whole breast radiotherapy? I think I’d ask him would he re-excise if you don’t go for the full node clearance, and if the answer is no, then he obviously doesn’t think it’s actually essential. Has there been any discussion of chemo? I’d be inclined to think re-excision might be more beneficial if you’re not having chemo, and maybe less so if you are …but I’m not a surgeon nor oncologist.
A tricky decision for you. I hope you come to a settled conclusion which you’re happy with 
Thanks for your response, it’s super helpful. It makes me think I need more detail, because whilst I know that all three nodes are positive, I know little about the characteristics of the cancer cells in them, I think the only words the surgeon used were ‘low volume’. My case hasn’t been to MDT yet, I think he wants my preference first then will take it forward for endorsement. He was clear that surgery would not be justified to re-excise the breast alone, because the minimum requirement has been satisfied, but he was clearly uncomfortable. I believe I am going to be having chemo.
A difficult decision to make when given options I would chat it over with one of the nurses on this website as we are all different and what suits one person doesn’t necessarily suit all.
I found the help of the nurses from this website invaluable as they were able to discuss things that were not necessarily the policy of your NHS Region but were options that are available and your right as a patient. [I called the help number]
The main thing was do the exercises you are given to help avoid the build up of lymph oedema this also keeps the area around the incision/scar tissue flexible.
My Radiotherapy caused so many problems as the RT was targeted in three different directions and damaged the skin where my bra band went under the bust this was forever raw from the irritation of the bra. If I had been armed with all of the information and been given the option I would definitely have avoided RT.
There are the exercises that you are given after any type of breast surgery which help to move the lymph however they don’t as a rule give advice on how to assist the movement of lymph which is just a brushing action with your hand from your sternum across the top of the breast down the side of the breast then under the breast in the direction of the heart/sternum. It is called manual movement of the Lymph.
You can also ask to be referred to the Lymph clinic if you have problems a they will show you the process and advise on garments that help.
My lymph nurse made me a Heath-Robinson pad out of corrugated foam which I put inside my bra on the side of the armpit concerned this worked with the muscles as you move and assisted the natural movement of lymph.
Good Luck arm yourself with all the facts and options by talking to an independent specialist, I will always be grateful to the Breast Cancer Now nurse that I spoke to on a subsequent diagnosis and choices that I was not told about by my Health Authority.
Interesting decision you have… mine was the opposite
I had “close margins” at the top so my surgeon wanted to go back in and offered a full clearance if I wanted
I had 1/2 node + (3mm) after my SLNB
If she didn’t have to go In, she said she would have recommended radiotherapy but wanted me to have a voice in the decision since I was having the 2nd surgery
I was v confused read 2 trials Z11 & AMAROS and spoke to a breast cancer medical onco mate & she said it was more “progressive” to not take out all the nodes if the cancer cells were small, more more than 3 affected and hadn’t poked through the capsule (not sure what the medical term is)
So I didn’t have the clearance BUT did have the cavity shave for clearer margins
I’ve just finished chemo & starting radio on the whole breast, axilla & collarbone (last 2 added in due to non clearance)
Good luck on your decision x
I have IDC and ILC HR+ Her2- with 2 lymph nodes positive. I had clearance and I’m now having chemo. I had 3 surgeries - the original lumpectomy and slnd, then alnd and cavity shave for 1mm margins too small, then another cavity shave. Even after all that, I needed chemo and will be having a masectomy and radiotherapy and tamoxifen. I would think with 3/3 lymph nodes positive, chemo may be recommended especially as you are only 42. I took the alnd, even though I was worried about the lymphodema risk. I have experienced no signs of lymphodema as yet. Talk to your team about the alnd vs radiotherapy as I believe they will help you decide the best option. Good luck. I’m sure you will get the right option for you. X
I was 46 at diagnosis and had one positive node after sentinel node biopsy. I had to have a cavity shave to clear margins, but my surgeon was very reluctant to give me a full node clearance and recommended treatment with radiotherapy. He said the chance of lymphodema at my age could be as high as 30%. Although it was technically my choice I went with his recommendation, especially as I am having chemo and tamoxifen alongside the radio. It’s a really tough decision to make though 
It’s so difficult when you’re given a choice, I wasn’t and sometimes I think I was over treated, however, I’m thankful for the surgery as ultimately it’s saved my life. I had 1/2 nodes positive following SLNB I moved my care to private due to lengthy delays with results, sent me into a spin tbh, and I had PMI through work so why not. I had a full axillary clearance at the recommendation of my surgeon, he was amazing and I totally trusted him, 22 additional nodes removed and none with any signs of cancer but what will always stick with me is that he said unless we had taken them all we wouldn’t be sure as you can’t see or feel cells. I’m happy I wasn’t given a choice but throughout this whole journey I have always gone with the professional recommendation for peace of mind. Sending loads of love and luck xx
Thanks everyone for responding. I have chosen the node clearance based on the advice of my oncologist. His view was that only 4% of the people participating in the amaros study had 3 positive nodes, so we cannot conclude that its recommendations apply to me.
I can’t offer advice based on my experience but I will say what I would do. Since all three of your nodes were positive and this is ILC which sometimes responds to chemo and sometimes doesn’t, I would probably go for the node clearance. With ILC, in my opinion from reading, the best bet seems to be to get it all in surgery or with radiation. Granted radiation will probably take care of the nodes but personally I would want to know they were out if they had cancer. Liz O’Riorden had ILC and she’s had two or three recurrences with it. Luckily they have been local but ILC spreads differently than IDC so personally I think surgery is the best bet. Not a doctor by the way so take this with a grain of salt. By the way, I would ask your doctor which way they would go with this if it were them and then follow their advice.
For anyone interested in the outcome of the surgery the clearance identified one additional positive node. The only minor complication has been seroma.