Hi everyone. I had wide local exicision to remove a 2.5cm IDC tumour (ER and PR positive, HER negative) 2 weeks ago, along with sentinel node biopsy. Prior to the surgery no nodes showed as positive on either ultrasound or MRI but the surgery revealed one out of two nodes as positive as well as lymphovascular invasion.
I’ll now be having a complete axillary clearance and then chemo and radio which has all come as a massive shock because I expected only surgery followed by radiotherapy. Chemo because I’m still premenopausal / in my 40s apparently.
I’m worried about potential additional node involvement and the ramifications of this (will find out post surgery obvs but that’s at least 4 weeks away). Does anyone have experience of negative nodes on scan but positive after surgery? In my head I’m thinking because nothing showed on the scans it’s likely to be limited node involvement, maybe just the one? And because only one out of two sentinel nodes were positive, maybe it’s just that one?!
Sorry for the ramble. Any advice / experience much appreciated.
Hi, I think I might be similar. My ultrasound and mri showed no lymph node involvement. I had my lumpectomy and node biopsy. It is only then that they found out I had one node affected. They did say it was tiny though. I started radiotherapy fairly quicky. Did not require further surgery or chemo.
Best wishes x
Quite a few people I’ve spoken to have had clinically clear (palpitation/ultrasound) lymph nodes but found positive after SLNB. I had 2 of 3 positive with macromets . I was offered Axillary clearance surgery or radiotherapy as clinical trials show that for early stage BC both equally effective. I opted for the radiotherapy as concerned about additional surgery. Had chemotherapy as also had LVI and finished treatment over a year ago. Annual check up showed still clear of disease.
I had WLE and repair to reconstruction with node sampling just over a week ago. Im similar to you except my IDC wasnt in breast tissue but mastectomy envelope. All scans showed nodes and rest of body clear. So im hoping when i get results of surgery next week it will be clear as im expecting but your post has made me realise we should take nothing for granted! Good luck with the rest of your treatment xx
Hi, I also had a 25mm ER & Pr positive tumour. Prior to surgery ultrasound and MRI showed no lymph node involvement. However after lumpectomy 2 of 3 nodes removed showed macromets. It was a shock. I decided to have a total node clearance but no other nodes showed cancer in them. The fact that your other node they removed is negative is reassuring but not a guarantee other nodes are not effected. I’m 2 1/2 years on from surgery and will complete adjuvant treatments towards the end of the year (except for Letrozole). You will find the strength to get through this. My advice is just take a day at a time. We are fortunate that today’s treatments have progressed so much in recent years reducing our risks of recurrence. I wish you well, take care.
Hi there, I am so sorry you have had this shock. I had a very similar experience with my first breast cancer 15 years ago. The extent of my diagnosis changed after my first operation and I had to suddenly come to terms with 2nd op to do axillary clearance, and then I had chemo and rads. I found it easier once the treatment got going and I just dealt with each day as it came. And it all worked cos I have had 15 years clear on that side with no recurrence. I now have a tiny new unrelated cancer on the other side picked up by routine mammogram.
All the very best for the days ahead. We wouldn’t choose to be here but its totally doable and so worth it.
Yep exactly the same and huge shock to be told I needed chemo. My hospital trust no longer remove the rest of the lymph nodes and instead offer targeted radiotherapy to minimise risk of lymphoedema.
I was also told premenopausal 40’s chemo is advised as best chance of stopping reoccurrence.
My lymph node involvement was also only detected from biopsies during lumpectomy.
Just completed 2 weeks of radiograms now awaiting my oncology appointment.
Take care x
I had the same situation. I was clinically node negative, but after my sentinel lymph node biopsy, one of my nodes came back with macrometastases and the second one with isolated tumour cells (ITCs). I opted for radiotherapy instead of full axillary clearance, as my surgeon signposted me to two key trials to help guide the decision. The two trials were Z0011 and the AMAROS trial.
I also had to do chemotherapy, as I was under 50 and premenopausal. I opted for TC over EC-T, as I was right on the cusp of needing chemo and preferred to avoid the epirubicin part of the treatment.
I did pay to have my tumour analysed by a company called Prosigna. Your oncologist can refer you for it. It costs around £1,600, but it really helped me understand my specific tumour profile, especially when I had to make decisions about the various treatments along the way.
Best of luck of what is next. It’s all very hard.
X
I had lumpectomy and sentinel node removal on 8th June. Clear margins on breast but 1 of 3 nodes showed micro metastases even though nothing showed on scans. On 10th July had rest of nodes removed. Of the 6 removed, 2 had micro metastases and 3 ITC’s. Now waiting for radiation. Very anxious!
Sorry to hear this, it must have been a huge shock. I can’t offer any advice, I have my surgery next week. My scans and mri also show clear nodes, but each appointment has been a shock with unexpected news as one lump turned to 6 tumours, lumpectomy has turned to mastectomy, so trying not to get my hopes too high that they actually are clear.
Do you have supportive nurses you can talk too? Xx
Just jumping on to wish you all the best. My first BC treatment experience was very much like yours. It was exhausting to deal with but the treatments ended up being totally effective and I’ve had 15 years cancer free so far. My new tiny BC is in the remaining breast and is a new primary, so seperate to the old one. Wishing you well and hoping you have the energy for some.treats along the way.
Thank you @margie_toon, it’s encouraging to hear your experience. Sorry you’re having to deal with it again but hopefully more manageable for you this time.
