Hello
I was dx with IDC a month ago - 13mm grade 3 with vascular invasion. From the SNB one node revealed what they are calling “micrometastic” spread - in other words a few tiny tiny cancer cells. According to the breast nurse this does not constitute a “proper spread” and according to her my staging is put at 1. But I have just had a full axillary clearance ( 3 of the specialist team said I should have it done and 2 said to leave them and that the chemo would mop them up.) The final decision was left to me - which is great when the doctors can’t agree! Anyway I am glad to have got rid of the nodes and hope the results don’t reveal any more spread.
My question is this - has anyone else had this kind of “micromet” situation? How did your onc deal with it? Was it treated like a normal axillary spread when considering adjuvant treatment?
Thanks!
Molly
Hi Molly
I also had 1 node with a micrometastases. I have been treated as 1 node positive I also had axillary node clearance and have had x3 FEC and x3 TAX chemo but I think the decision to switch to Taxotere rather than give me X6 FEC was more to do with me being Her 2+ (which is more aggressive).
Hope this helps
xx
Fab question - why didn’t I think of it myself? There are not many of us about with ‘micromets’. I had two cell clusters in the sentinel node. Apparently they added the size of the clusters together and mine came to a total of 0.9 mm.
Before SNB I was told by my surgeon that any trace of cancer in the lymph nodes would mean a second op for full clearance. However even though I have ‘micromets’ there was no second op or full clearance. I didn’t even question it at the time - was in too much shock - but it was only afterwards when I read up on BC and lymph node involvement that I got myself into a right state about it.
I am ER- PR+ (89%) and HER-2+++. My treatment was lumpectomy followed by 3 x FEC, 3 x TAX, 30 rads and Herceptin for 1 year. Currently on tamoxifen for my PR status. I was told by my onc that I was being treated as ‘node positive’. He said some Onc’s would treat as node negative but some ‘err on the side of caution’ and treat as positive. If I had been node negative I would have been given 6 FEC but because of micromets, and as eal69eal above says, was probably given TAX because of Her-2 status. My onc said he would treat me as a Stage II (my tumour was 1.7 cm - Grade 3).
There are two prospective studies in the US (I think) looking into the significance of micromets - I was told my onc that it is only in the last few years that they have been able to test for micromets. I will dig out the paperwork I have found to date but not sure if I can post links - maybe the moderator can help me out here please?? My understanding is (and I may be wrong so please check):-
(a) Upto 0.2 mm - this is considered as an isolated tumour cell or ITC.
(b) Between 0.2 mm and 2 mm - this is considered a micromet.
(c) Above 2mm is considered a macromet or positive node.
Have I been overtreated with chemo or undertreated by surgery? These questions still rattle around. I have never asked my onc since as there doesn’t seem to be much point, I should have probably been more assertive just after surgery but really wasn’t in a position to do so.
Some hospitals will go for a full clearance, some won’t - think it depends on the surgeon/onc discussions and protocol for that particular hospital trust. I am not sure if you will get a definitive answer - I think this is one area where they simply don’t know yet so in some respects I trust my onc and am glad he is erring on the side of caution.
I was in a desperate state one day and actually rang the helpline here but to be honest I didn’t receive an answer, just really that the care I had received seemed to be gold standard! Hope someone can come along with a bit more info on micromets. Love xxx
Thank you - that’s fine, I knew there was something I wasn’t supposed to do so thought I would check first. Please don’t hold out much hope Molly of a private message, it took me all my time to work out how to post!! Love xxxx
I have found it incredibly hard to get my head round this whole micromets issue - is it a spread or isn’t it? My consultant didn’t help by saying “If we tested your blood we’d probably find them there too”. As you can imagine that made me feel a lot better!
My BCN put it into perspective by saying that the high powered microscopes they now use are revealing things they would never have found only 5 years ago and that this is throwing up more questions than answers. A fact which is obviously reflected by my breast care team being divided about whether to remove my nodes or not. They are running a trial on this at the moment to try and evaluate the significance of lymphatic micromets.My surgeon felt sure that the chemo would deal with them adequately and that the whole clearance and lymphoedema issue would have a more profound negative impact on my day to day life. But I still opted for clearance.
I’d be very interested to read the info you have on the significance of micromets swissgirl.
Will try and send a private message but it may not be today. I found very few articles on micromets on the internet or if I did think I had found what I was looking for I was not allowed to access the articles - medical journals.
At the end of the day though, lymph node involvement, be it a full positive node or a micromet, is just one of the factors taken into consideration for a bc dx. If you continue to use this forum you will find posts from people with a bad prognosis still going strong after many years, whilst others with a relatively good prognosis have not done as well.
Will try this private message later, tea now beckoning, but if I can’t do it, I will try again tomorrow. Love xxxx
Have attempted to send a private message to you - I think you just need to scroll down the post - if you haven’t got it, please let me know. Make sure you are signed in. Love xxx
Hi Molly, I hope you dont mind me joining in but have picked up in your details that you had vascular invasion. Has your onc said anything about this because my position is that I have had nodes removed and that surgery is pretty bad, SNB was not offered but nothing found in nodes. Not seeing onc for a few days and trying to get my head around this as only found out a few days ago. having chemo at the mo 4 x epi and 4 x cmf.
Hi Everyone - Thanks for this interesting discussion.
I had WLE for Grade 3 multi focal IDC. Had SNB (two nodes removed). The sentinel node showed “two widely separate foci of cytokeratin positive cells. Each focus is less than 200 microns and therefore does not stage as metastasis”. So, as is the case for some others of you, I was told that technically I was lymph node negative and had no further surgery - which I was pleased about. However oncologist treated me “as if” I was lymph node positive, with FEC x 3 and Taxotere x 3. They were also considering the fact that I had lymphovascular invasion which is considered by the some as being the same, outcome wise, as having a positive lymph node. So bottom line was, kept my lymph nodes, had chemotherapy. Never discussed particularly, just told this was the way to go which I was quite happy with. (Also had radiotherapy). Hope this is of some interest! Sarah x
I also have ‘lymphovascular permeation and perineural invasion’ - not sure whether there is a difference between lymphovascular permeation and lymphovascular invasion, another question I can’t seem to get a direct answer on so can only assume it is the same thing.
My treatment plan seems to have been almost identical to the one you had Sarah. Glad there is someone else around who also didn’t have all their nodes removed. Love xxx
Very interesting to read everyone’s experiences. Swissmiss thank you so much for taking the trouble to post the links - they make intriguing reading. It’s clear that it is still very early days regarding the implications of lymphatic micromets. My own completely unscientific gut response is that I would rather not have them than have them - but in the grand scheme of things (i.e. being blasted with chemo) maybe it all balances out.
I’m afraid I didn’t receive a message from you - probably due to my hopeless IT skills. Could you try again?
I am surprised by the diversity of detail in people’s path reports. Mine seems very humdrum and basic - perhaps I will know more when I see the oncologist next week (I’ll let you know what he says Lynda!) Mine just says “isolated tumor cells” - no indication of size etc.
Hi again, I am seeing onc on Thursday and will ask more as nothing about the vascular invasion was mentioned when given results of WLE and node clearance and cannot seem to find a great deal of discussion about it on other threads. It does just seem to be the Lymph nodes that everyone gets the results for.
Molly - hope your appt goes well. take care, Lynda
I discovered that I had vascular invasion when I paid for a copy of my medical records via my surgery. I only got copies of what the surgeon and onc had seen fit to copy the GP but it seems to have been enough.
Swissmiss - being a bit literal I would think invasion to be more significant than permeation but we could be splitting hairs perhaps.
I’m going to start another thread about lymph node clearance because that seems to be unclear too.
I thought I had just about all my questions answered and then someone turns up another interesting little teaser!
I managed to read my path report when my notes were left by the chair while I was having my Herceptin, I was very surprised that where it said Vascular / Lymphatic invasion it read Present, this was never mentioned when I went for my path results so whether it was present on both counts I don’t know., although I was told that I had 7/10 nodes positive. A little more surprising was when I turned the page and it was headed in large letters ‘Inflammatory breast cancer’ I was told I had IDC, which was mentioned at the foot of the same page.
Does anyone know whether our own GP’s are sent a copy of our pathology reports?
Today 18 months post dx my onc pushed the pathology report across the table and said,'Is there anything you want to ask?'It said vascular invasion absent,margins minimum 6mm clear,grade 2 IDC,20mm some DCIS removed at surgery er-pr-her2-I asked about the dcis and he said they expected to find some with grade 2/3 tumours,it was the first I’d heard of it.Still he didnt want blood this time and wants to see me again in January so onwards and upwards I suppose.All the Best Valxx
I was fascinated to find this post - better late than never! I too am a Isolated Tumour Cell diagnosis. - Lobular, large tumour, no vascular invasion, mastectomy, 100% ER positive. I was told at the time after my op that I was ‘node negative’ and that I was in a ‘grey area’ for chemo. Grade II by the way - I was sooooo relieved not having to have chemo that I didn’t really worry about anything else. I had a Sentinel Node Biopsy - it was only after getting copies of my notes from Addenbrookes that I realised I had these Isolated Tumour Cells. Went into a complete spin but spoke to the histopathologist who basically said nothing to worry about. Op was Jan 2006.
Today have been to see Onc as I have had a painful bit in my scar. Apparently I have a tender nodule and I need to see my surgeon - which will result in UItrasound and then an operation - I can see that they will probably do a node clearance or something, so am beginning to think this could all be a recurrence.
Recently I had normal tumour markers and a clear isotope bone scan in April - but I must admit since finding out about the IT cells I have sort of been waiting for a recurrence.
Anyone else feel the same?
Very best wishes to all, its a hard road we are all travelling. xx
When the surgeon gave me my SNB results showing the isolated tumour cells she said that there were 2 options - leave the rest of the nodes and let chemo mop up any cells. Or have the clearance.
I opted for the latter. I like the belt and braces approach - clearance AND chemo.
I “qualified” for chemo because I’m Grade 3 with vascular invasion eventhough my lump was relatively small and it was still Stage 1.
At the time my BCN gave me a bum steer about my node as she said it was micromets. Wrong - micromets and isolated tumour cells are not the same.
Micromets are regional metastases - but they think ITCs come from being dislodged during surgery/biopsy.
Anyway - probably best not to jump the gun. It is good they are onto it - when you say operation do you mean biopsy? If the US doesn’t look obviously sinister they won’t dive in and whip your nodes out without confirming what is going on.
I can understand your anxiety but I really hope it proves to be just a tender old nodule and nothing more.
Good luck
Molly
Molly, thanks so much for this. I too discovered that Isolated Tumour Cells are not the same as micromets - I think there is a lot of confusion.
I am trying not to worry about my tender node and I think you are right. I am sure they will ultrasound but will still want to remove it and biopsy. I suppose worst case scenario after that they would remove more nodes.
Will let you know how I get on. I’m seeing the surgeon on Tuesday and will have the U/S then as well…