Newbie here. I was diagnosed with stage 1 grade 2 in May and had a lumpectomy on 20 June. Unfortunately it turns out the lump was bigger than expected and the margins weren’t clear; I also have a positive lymph node. I had a second surgery on 30 July and I have an appointment for the results on Monday. I am hoping they got it all this time!
I’ve been told that I will have radiotherapy for the lymph node; surgeon doesn’t want to do a node clearance as I’m ‘only’ 47 and the risks of complications would be high. I was a bit surprised that it would be treated with radiotherapy, i thought chemo was indicated with positive nodes? Obviously I trust my consultant and if he thinks this is the best treatment then fair enough…was just wondering if anyone has had nodes treated with solely radiotherapy?
Hi there,
Sorry to hear. Also surprised no chemo for positive node. I also would think full clearance once any node is positive, I am of similar age and had full clearance for one positive node and they also did it very fast after discovering it. Personally I think given the nodes can be the gateway the only risk is lymphedema and it’s at 20% and getting this is not life limiting. I would take this risk over recurrence and the surgery wasn’t bad at all.
Perhaps a second opinion would be worth getting as doing everything to prevent recurrence is worth it. (I had a recurrence on a lymph node despite a 2% chance). Might be worth asking for Oncotype test too.
Best of luck
Thanks for your reply; sorry you’ve been through it all
I must admit I’m a little anxious about the nodes… I’m worried if it’s not treated aggressively enough it will spread. Consultant was adamant that he didn’t think a node clearance would be best for me as he said I’d be high risk for lymphodema. Argh it’s hard to know how much to question and how much to trust that they know best! I will ask more questions at Monday’s appointment
I’m a different age to you 58 at diaognosis, I had two nodes affected, one was a macro one was a micro although initially they thought they weren’t affected. I had a full clearance and nothing else was found so I was offered an onco test and didn’t have chemo just radiotherapy.
Hi sharlou, I had lumpectomy and snlb last year aged 53. Lumpectomy margins clear but first lymph node contained cancer. Second node clear. I was only treated with radiotherapy and put on tamoxifen. Hope your treatment goes well x
Just to say that I had a node which was positive so they removed all of the nodes under that arm and I never developed lymphoedema. I wonder if the rules have changed with regard to lymph node removal since then. Mind you, mine was a grade 3 triple positive cancer so maybe that’s why they took the belts and braces approach. Whatever you decide, I wish you well. Xxx
What I have since learned is you have to question. It’s important to trust but I would ask what is the risk of recurrence by not taking out the nodes and is he just not doing it because of lymphedema risk. I think we are all ingrained to take the advice but it’s your life so make sure you are happy and if not get a second opinion.
Can you tell me how you are getting on with Tamoxifen, I was prescribed it 3 months ago, but so far cannot bring myself to take it, as I don’t want to feel unwell all the time, the side effects scare me.
Hi balchik, I was dreading tamoxifen as I was told loads of horror stories. Your treatment teatment team will prescribe what medication is best for your circumstances. I have been on it for 1.5 years now with no major issues. I do get tired. Pre diagnosis I could go to work during the day and then do things in the evening. I now feel after a day at work I dont have the energy. Recently, been aware if achey legs. I dont know if it is tamoxifen or because I am now perimenopausal. It has not yet affected me badly enough to find out. So, in general I am okay with it but everbody reacts different. I feel silly for saying this, but I initially thought tamoxifen targeted breast cancer, but found out recently it targets your whole body. This will therefore hopefully prevent secondaries developing elsewhere. In purely my opinion I consider my minor side effects are well worth it. I am sure if you cannot cope with it, your treatment team will change to something else - maybe wrong though. Good luck x
Hi, thanks for the reply. At the moment I’m still going with my instinct not to take Tamoxifen. Maybe I’ll change after my follow up appointment next week.
@balchik I had absolutely no problems on it at all. I used a brand called Mylan Arcana and found it to be without side effects. It takes about two weeks for your body to get used to it but after that it was smooth sailing. Rem most people that post are doing so because they have an issue however the amount that don’t are just living their lives. The other aspect is many are post treatment or also going through menopause and it can be difficult to separate what’s the drug and what are the other effects.
I would also go into it without looking for side effects as the mind is so powerful. Best of luck with it.
It would be useful to know if your team have undertaken a oncotype test and Predictor test as both are normally used to help decisions for them and you , ask them to do these or explain why not given your surgery and outcomes to date
Whatever the next steps are keeping asking questions or for more information as your long term outcomes need to be ones you are happy with
The nurses on here or at your hospital should be available to help you understand each step
In the United States you would automatically be given an oncotype test which would definitively confirm whether chemo would be useful to you or not. Considering you have a grade 2, I would ask for that.
Thank you so much to everyone for your responses. I think I need to ask more questions! I’ve just been swept along with everything I think. I’ve not done a Predict or any other kind of test with regards to what kind of treatment I should be having…I didn’t know that was a thing! I’ll see what the consultant says on Monday as I can’t see the uneasiness I feel about the node settling down
