I was recently diagnosed with grade 2 invasive ductal carcinoma at the end of August 24, ER 8, HER2 negative. I underwent SNLB and lumpectomy on 1st October.
The results have come back showing 1 x lymph node has macro mets, (they took 2).
I have been offered Axilliary node clearance or radiotherapy. I wondered what peoples thoughts were on the 2 options. I’m finding it hard to make a choice.
I am awaiting an appointment with the radio therapist for further discussion.
Also waiting for ONCO DX to come back.
I am feeling so anxious and scared, and would like to hear some positive outcomes . I feel just as upset now as I did when I was first diagnosed! This positive lymph node has really set me back!
People are telling me to stay strong and be positive but it’s just so hard. Where has my ‘normal life’ gone ?
Hi ginnylizzy, I had exactly the same diagnosis as you. My breast surgeon recommended that we treat the nodes with radiotherapy as I would be high risk for lymphodema with an axillary clearance. I think he based this on my age - I’m 47 - as apparently the younger you are when you have the clearance the more susceptible you are? Anyway I went with his recommendation but as it turns out I’ve had to have chemo anyway…which has bizarrely given me a bit more peace of mind.
Did the surgeon give you any guidance at all as to what they recommend?
Hello ginnylizzy
I fully sympathise with you. My situation was similar regarding tumor, but clear lymph nodes. After the first op, my cancer grade was changed from 2 to 3, and they found high grade DCIS in armpit area. I was encouraged to take a second op to have it removed.
That foxed me…I was prepared if they said a second op was needed for lymph nodes, but not for something else. And the grade increase also threw me off kilter.
Once I grasped the news, for me and my situation it was a no brainer and have everything removed. Both surgeries went well, and I am glad that all that could be found has been taken away.
From what I’ve read and my BC nurses,radiotherapy was always going to be given, regardless of my decision to have the second op. You may want to ask about that, for peace of mind. Your onco score may also influence if you need chemo.
My advice if you are unsure, is to ask questions and more questions. My team have been wonderful. Use the internet as a tool, but stick to official web sites, like this one, so you don’t get bad information.
Most importantly, you make the final decision, so you are comfortable with your treatment.
Sounds like I’m 4 or 5 weeks ahead of you treatment wise. I’m healed up now and waiting for radiotherapy.
No guidance - just said it’s patient choice ! Also Said there would be 20% chance of lymphoeodema with axilliary node clearance. I am 58. I guess once I have seen the radiotherapy doctor I may be more able to make an informed choice,
Yes hopefully you will feel more informed after speaking to the radiologist, it is such a difficult decision to make when you don’t feel you really know all of the ins and outs! They told me I was 30% risk for lymphodema so I kind of just went along with their recommendation.
The chemo came about because of my family history I think. My mother was diagnosed with BC aged 29 and died when she was 38, then I have three paternal aunts who had BC. So because of that and also a positive node, they recommended chemo. I was shocked but it made sense in my case I think.
Hope you get more clarity after speaking to the radiologist
I was 58 when diaognosed last year, grade 2 with one micro and one macro slnb, I wasn’t given a choice was just told full aux clearance, the rest came back clear and then an oncodx test was done, which came back at 11. I went on to have five days radiotherapy and now have letrozole for ten years, have just had my first annual mammogram which has come back as ok.
Hope you get the answers you want, I felt exactly the same as you, at each appointment it seemed to get worse.
Hi I’m also the same. Had a mastectomy of right breast. They found 2 of 3 lymph nodes had metastasis bit recommended the chemotherapy and the radiotherapy will clear that up. I was offered lymph node clearance bit the protocol at my nhs health trust is to do as less invasive as possible if the results are lymphoedema and limited arm movements as chemotherapy and radiotherapy should clear everything up without causing disability
Just to chuck in my tuppence worth:
Invasive lobular in left breast and invasive mucinous in the right. Double mastectomy (my decision). Strong family history, although sister was tested - negative for BRCA 1 and 2 genes.
Oncotype DX score 9 and 7 respectively so chemo not deemed necessary.
Only one node found to be involved, although not one of the sentinel ones. However, it was found to have extracapsular spread so, rather than zap blindly with radiation to the armpit, I went for the surgical option and had a full axillary clearance (followed some time later by radiotherapy to the left chest wall for the ILC tumour area).
I swiftly developed lymphoedema in that left arm and hand, just 6 weeks later. I have been through various massage treatments, heavy strapping, have intermittantly worn compression garments and bought my own pneumatic pump for drainage in the comfort of my own home. This has pretty much erradicated all swelling, for now …
I was 62 at diagnosis in 2022.
Thanks for your reply, I think the symptoms you have described are what is putting me off the axilliary node clearance, but on the other hand I don’t want to undertreat myself. But then I keep thinking surely if it was detrimental not to have axilliary clearance, they wouldn’t have offered me the option of radiotherapy.
I am waiting for an appointment with radiotherapy doctor, maybe he can give me some reassurance.
Also if the onco dx comes back raised then chemotherapy would be recommended.
It’s all the uncertainty which causes so much anxiety, it feels like you are constantly waiting for results doesn’t it.
Take care
I’m sorry to hear what you’re going through, your feelings of anxiety are completely valid, and something a lot of people here will be able to relate to.
Please know that our breast care nurses are always here for you - to answer clinical questions or to chat things through. They can be reached on our free helpline on 0808 800 6000 which is open Monday to Friday 9am-4pm and 9am-1pm Saturday.
I think everyone has to make the choice according to their own priorities.
I am the sort of person who wants to ‘know for sure’ what is going on, so my reasoning was I wanted for the nodes in my tumour region (post-mastectomy, the armpit) to be physically examined in the lab to identity any further lymph node spread of disease. If I had taken the radiotherapy option, I still wouldn’t know what I was dealing with in terms of any local spread. I made the choice that a 10%-20% risk of lymphoedema (as quoted at the time) was acceptable. I was unlucky. Given the same situation again, with hindsight, I would still make the same choice. (To be clear, I developed the lymphoedema from the instrusive surgery, BEFORE I had any radiotherapy.)
The only side effects I suffered from the radiation I did have (as a mop-up treatment on the chest wall itself) was slight shortness of breath (which seems to have resolved itself now), and a tenderness in rib area at mastectomy site (which is commonly attributed to damage from radiotherapy) … or is this the start of bone metastasis ?? (although scans I had nearly a year ago didn’t show any obvious signs of this).
Typically, there is no simple, obvious, guaranteed path . Just try to think about which consequences you could accept and live with the best.
I really feel for you. I was in a very similar position to after my lumpectomy in 2021 when I was 57. Diagnosed with an 18mm tumour (which turned out to be 23mm) ER+ and PR+ and Her 2- Two out of three sentinel nodes where positive and I was told that at the MDT meeting half the consultants recommended radiotherapy and half axillary clearance. So the decision was mine!! My brilliant surgeon was nudging me towards a clearance but it still sent me into a tailspin of anxiety. It was honestly worse than the initial diagnosis.
In the end I got my BCN to get my surgeon to call me and he explained in detail why he thought a clearance would be better for me - apparently the size of the affected nodes where a factor. And they couldn’t be felt and didn’t show up on the ultrasound. Weird! He explained the risk of lymphodaema but also the things you can do to try and avoid it including daily massage, plenty of exercise on that arm and all the usual advice (no needles, blood pressure cuffs, avoid cuts, insect bites etc). And thankfully apart from one mild episode I have managed to avoid it so far.
More importantly for me, the clearance showed up four more affected nodes (out of a total of 31 removed) so I was recommended chemo even though my oncotype came back at 14 which my oncologist said was ‘interesting’. LOL.
My ongoing puzzle has always been that if I had had radiotherapy they would never have known how many more nodes were affected and therefore whether to offer chemo. No-one has ever been able to solve that one! But at least I feel that I’ve thrown everything at it. I also had 15 sessions of radiotherapy to the breast and collarbone because of those additional nodes.
I hope that’s helpful, sending you big empathetic hugs! ((( )))
That is a very interesting scenario! If you had opted for the radiotherapy option and not clearance wouldn’t that have neutralised the cancer in the 4 which were positive anyway ? Were you grade 2 ?
Hi ginnylizzy,
It’s so hard when they leave the decision to us!! I had the same type of cancer as you (but grade and stage 3) and 2 positive nodes. My surgeon suggested full clearance and I was so glad I went with her decision as when the lab results came back, it showed there were 5 positive nodes not 2!! I went on to have chemo and 15 sessions of RT. Now I’m on Letrozole for 10 years.
Just wanted to tell you that I feel comfortable that I had as much treatment as possible to reduce the chances of recurrence. If I get a recurrence, I don’t think I I’ll beat myself up as I had all the treatments. Hope this helps u make your decision xxx
It really is a dilemma. I guess my thinking is that even when they’d physically removed all my nodes the additional 4 affected ones they found was what triggered the need for chemo (even with a low oncotype). If they’d zapped them with radiotherapy they wouldn’t have known how many more were cancerous so I wonder how they would then make that decision in favour of chemo. I’m probably overthinking that one It makes my Anastrazole addled foggy brain hurt sometimes!!
It’s horrible we have to make these decisions at such an extremely stressful time, I still have flashbacks of that part of the saga.
Sending you lots of love
PS. My tumour was Grade 1 when diagnosed and Grade 2 when removed.
Hi @ginnylizzy it is so difficult! Im in a similar position to you. I had to have a double mastectomy, as I have cancer in both breasts. 4 tumours grade 1. The pathology results floored me, 2 tumours were double the size of the US, one is a grade 2 and on the right side 1 of 2 lymph nodes is positive.
On the table is full Auxillary cleareance / radiotherapy. We’re waiting for oncotype score to see if chemo is needed and to then decide.
My Doc said it used to be a straight Auxillary clearance, but now its changing with some Docs prefering radiotherapy.
Its such an important decision to make, we look to the experts for their guidance, but with Doctors now differing in opinions how can we make the right choice?
. Just try to think about which consequences you could accept and live with the best. 
It makes my Anastrazole addled foggy brain hurt sometimes!!