Has anyone had extranodal spread?
It’s worrying me. I had a PET scan and it was clear, but my histology report shows this.
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Hi s30,
I fully understand why you are feeling worried. So was I after my surgery. I have had extra nodal spread. My pathology report stated “Sentinel lymph nodes : 2/2, with focal extra-nodal tumour extension”. I had a lumpectomy and targeted auxiliary dissection where 2 out of 6 nodes had cancer. I felt really worried initially as I read so much up about it all to try and understand but now I’m further into active treatment I’ve become less focused on those details.
My treatment plan since included a nuclear medicine bone scan, ct scan (both came back clear) and I’m now in the middle of chemotherapy.
I initially focused a lot on the report results, but since then I’m confident that with all the treatment I am receiving and will continue to have (radiotherapy, targeted therapy (ambeciclib) and hormone therapy that they will destroy the cancer cells and prevent it’s return!
I wish you all the best in your recovery. xx
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Hi s30
I was diagnosed in 2022 with stage 2 lobular breast cancer in the left breast (also mucinous breast cancer in the right). I opted for double mastectomy, during which two sentinel nodes were excised and found NOT to be involved. HOWEVER, a further 3rd node was taken at the same time which the surgeon thought looked suspicious. This was found to be involved with extracapsular spread. I only know this because I requested sight of my lab reports. Not one of the medical team even MENTIONED I had lobular (did they really not understand the significance of this / how very different a subtype it is to ductal ?), nor did they even MENTION the significance or specific risk of extracapsular spread.
I had axillary clearance but no further involved nodes found. I had left chest wall radiotherapy. Chemotherapy was deemed not to be of sufficient benefit (oncotype DX came back as 12%) but this was on the basis of taking hormone therapy for 5-10 years. I tried for 10 months and decided it was intolerable if I was to live a normal life again.
So … I have the constant concern that, during the delay for radiotherapy of around 4 months due to heavy demands on the service, or beforehand, some cancerous cells may have escaped from that node and the local area, into either the blood stream or the lymphatic system to travel, then lie dormant, in some distant part of my body. (I quickly developed lymphoedema following surgery.)
I had NM CT and bone scans which showed up nothing. Being flat-chested now, I have requested MRI scans (4 times) as my monitoring tool for recurrence, but this has been refused 4 times. I don’t want to keep exposing myself to more and more radiation through the other scan types, so it seems there are no other avenues open to me to try to halt any possible recurrence at an early stage. Sorry, no positive spin here, but I wish you well. x
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Hello,
Thank you for your reply. I too am in the middle of chemotherapy and I’ll go on to have radiotherapy, targeted therapy (Abemiciclib or ribociclib) and hormone therapy. I just got so frightened when I researched extra nodal spread, as it hasn’t been mentioned before.
May I ask what chemotherapy regime you are on? I’ve had 4X EC and I’m in the middle of 4X paclitaxel.
Best of luck with your treatment. Xx
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Hi S30,
My chemo regime is 3xEC (I’ve just had my 3rd EC) and then 3 Docetaxel.
It’s certainly gruelling and I think I’m finding the chemo harder as time goes by, but as I’m half way through I’m looking forward to getting to the end! xx
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