Thanks for posting. I’m still waiting for Her2 result. My next clinic appointment is next Thursday. They should have sentinel node biopsy result at that point.
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So my Her2 result was negative - I have confirmed triple-negative disease.
Eight sentinel nodes were sampled and came back clear. But my histology report from original core biopsy says I have lymphovascular and perineural invasion which is scary - these are poor prognostic factors.
I had wide local excision on 18th December.
I’m really struggling with the fact that I haven’t had a brain scan, I can’t shake the thought that it might be there already. And am utterly desperate to meet oncologist and get a plan, no appointment until 10th January.
I don’t feel as if I am coping well emotionally at all, I am in a state of total panic a lot of the time.
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I’m so sorry to hear this @georgiegirl1 . What with Christmas and the doctors’ strike, appointments are hard to come by which is very cruel for someone in your position. I had ER+ so cannot comment from personal experience on TNC but I do know the fear of it having spread. If there is LVI, can you ask for further scans to rule spread out? I would have thought that this is a reasonable request.
Alternatively, I had unusual discomfort in my stomach and mentioned it to the BC nurse. Her response was to get me in for a scan straight away and actually I had head and torso CT scan with contrast (much to my surprise). She said, quite forcefully, that they (oncology) are responsible for my well being so if I ever think “uh oh, what’s that” or “that doesn’t feel right” to bypass the GP and call them straight away. So if you have reason to suspect spread, you must tell them at your January appointment and it will be factored in to your plan.
I know how difficult this has been for you and how positive you’ve tried to be so this must be a blow. Please tell me that you have people around you this Christmas, people who can support you through this agonising wait. For what it’s worth, you are in my thoughts. The lump has gone and the lymphs are clear, just hold on to that.
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Until you officially start treatment there is no such thing as coping well. I am so sorry for the delay. It sucks. However, you didn’t have two sentinel lymph nodes biopsied, nor three, but eight. That’s a high number and all were negative. That is awesome!!! Yes, lymphovascular and perineural invasion is unfortunate but sometimes happens with aggressive tumors and that’s what TNBC is. Normally (and there are exceptions but this is the typical way of spread) is that you have tumors starting to invade the surrounding tissues (LVI or PNI) and then spreading to the lymph nodes where they are then in the position to metastasize beyond the breast. So yes they are a negative prognosis factor but so is spread to the lymph nodes, a larger tumor, younger age at diagnosis and a higher grade. In other words there are multiple negative prognosis factors and many of us (and I would venture most) have at least one of them. That’s why they have to look at everything before deciding treatment so that they can determine what is needed. Also, I will remind you that the more aggressive a tumor is the harder it falls during chemo. As far as whether you need a brain scan you can certainly ask if you think that will help your anxiety. But without lymph node spread that is highly unlikely.
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Thank you for this kind post, Kay.
I know the nodes being negative is helpful, but it can metastasise elsewhere with negative nodes.
I keep finding myself an outlier for the wrong reasons.
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It can. But it can with all of us. Breast cancer is forever is what I think although it’s more accurate to say that you have to be alert forever but most of us will be cured and never have to deal with it again. So with those negative outliers your treatment might be intense. But intense treatment works way more often than not.
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