im just over two yrs out from treatment,chemo radio,tamoxifen.I had my check up recently with my oncoliist all went well untill i received a copy of the letter he had sent my gp…in he he had put my grade of cancer(3) no lympth nodes involved size of tumour…27mm all of which i was aware…then i read lymphovasculiar invasion present…what!i never knew i had that??it was never mentioned to me…im really not happy about this and feel iv just gone back two yrs to when i was told i had cancer it was such a shock to read this!does your oncoligist normally tell you if you have this??surely they would??as iv been reading about it and it changes everthing for me…like my oncoligist saying its not in your lympth nodes,thats good news…well finding out this isnt good news and im really fed up!!
Hi Sarah
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Hi Sarah,
I was dxed in August last year, a small IDC which was treated surgically first with a lumpectomy. The SNB showed one micromet I out of the four nodes sampled, grade 3 and LVI, but the concern was more the grade and micromet, not the LVI. My onc ordered chemo but emotionally and mentally I only (barely) managed one, so I moved onto rads and tamoxifen (I’m v strongly ER+). Before chemo by onc was pushing it as the C was “on the move” re micromet but no mention of LVI, but when I saw him about 3 months later having decided to stop chemo he was “meh, you did one, and the main thing is tamoxifen and surgery, plus rads for your situation”. So I get the impression that (and he has said) chemo was belt ‘n’ braces, and that rads to my axilla should have fixed any stray sells - in the area. I had clear margins so that’s apparently another reassurance.
Yes, I’m still worried about regional/distant recurrence even in the absence of a new primary or local reccurrence. I was worried when, after having quit chemo, I read in my path report about the LVI - it passed me by in a blur after surgery and I didn’t really know what it meant - but they seem to think it is ok. Time will of course tell, but so far so good (as far as we know). I think what I’m trying to say is that perhaps LVI isn’t as sinister as it sounds, I.e. not automatic that there is cancer in the blood, as tumours often show LVI but are treatable to the point of NED.
Rads are pretty tough on malignant cells, so hopefully they were all caught in my breast/axilla if there were any. and I don’t have any distant strays. If I do the hope is that the tamoxifen will stop 'em becoming a tumour. I don’t know what tx you had, but hoping you are fixed and no reccurrence comes knocking. I have all my fingers crossed, keep praying, and am taking the T!
Best,
Lisa xx
Hi Sarah,
I was dxed in August last year, a small IDC which was treated surgically first with a lumpectomy. The SNB showed one micromet I out of the four nodes sampled, grade 3 and LVI, but the concern was more the grade and micromet, not the LVI. My onc ordered chemo but emotionally and mentally I only (barely) managed one, so I moved onto rads and tamoxifen (I’m v strongly ER+). Before chemo by onc was pushing it as the C was “on the move” re micromet but no mention of LVI, but when I saw him about 3 months later having decided to stop chemo he was “meh, you did one, and the main thing is tamoxifen and surgery, plus rads for your situation”. So I get the impression that (and he has said) chemo was belt ‘n’ braces, and that rads to my axilla should have fixed any stray sells - in the area. I had clear margins so that’s apparently another reassurance.
Yes, I’m still worried about regional/distant recurrence even in the absence of a new primary or local reccurrence. I was worried when, after having quit chemo, I read in my path report about the LVI - it passed me by in a blur after surgery and I didn’t really know what it meant - but they seem to think it is ok. Time will of course tell, but so far so good (as far as we know). I think what I’m trying to say is that perhaps LVI isn’t as sinister as it sounds, I.e. not automatic that there is cancer in the blood, as tumours often show LVI but are treatable to the point of NED.
Rads are pretty tough on malignant cells, so hopefully they were all caught in my breast/axilla if there were any. and I don’t have any distant strays. If I do the hope is that the tamoxifen will stop 'em becoming a tumour… I have all my fingers crossed, keep praying, and taking the T!
Best,
Lisa xx
Sorry Sarah - realised I did know your tx after I had hit the post button, so please ignore my first reply and just read the second!
Tamoxifen brain :-S
X
Hi Sarah, I had “extensive lymphovascular invasion” and only found out when I saw my path report after treatment was finished. I was treated with rads and Letrozole as no node involvement. Grade 3 tumour so I requested an appointment with onc to query whether I should have been offered chemo but was told that the panel decision was no chemo. I am post menopause and 8/8 Er+ which I think is relevant. They couldn’t get clear margins either as against chest wall. I still worry about not having chemo but have had no choice but to accept the decision. I would think that the chemo in your case should catch any stray cells and the Letrozole in my case I hope will do the trick. Its horrible though isn’t it when you find out things at a later date. I had originally been told everything was all fine and dandy but it turns out that nothing is ever straightforward. I have lost some confidence in the process though and just have to hope for the best as we all do. x
Hi, I too had vascular invasion but no lymphatic invasion, just in the lymph nodes. It only came up when discussing whether I should have rads or not after chemo. A Macmillan nurse explained it to me this way. My tumour had developed its own blood supply withing the breast. As I had mx, the lump and its ‘feeder’ blood supply has now gone. I too worried about it getting into my main blood supply. Guess we’ll all have to wait and see!! Cracker, I think you should have been asked for your own opinion about chemo and not have that decision made for you. I was offered it as an option and I am glad I accepted it now. xx
thanks ladies for your replys,iv emailed my oncoligist and am waiting for a reply.I would have rather been told 2yrs ago then find this out now!im sure i would be over it by now,when i read it it just felt like being diagnosed all over again,i just dont understand why nobody said anything?x
Hi Sarah, I would guess they didn’t say anything as it wouldn’t have changed the treatment plan, I.e. you were already having surgery, chemo, tamoxifen. Sometimes I think they only tell us what they (think they) need to and keep the additional medical stuff to the medical team who know whether it is concerning. But I might be wrong!
Lisa xx
yes true maybe its something they just tell you only if you ask…i do remember at the time saying im not doing chemo,and the reply was its grade 3 so on that i would strongly advise that you have it…you would of thought he would of said and because you have lymphovasculiar invasion.i shall wait and see what is emailed back…something i havent said was the letter i received had lots of things about me wrong,it said grade2 and i was 3 it said25mm and i was 27mm and the date of operations were wrong im starting to think is this even about me!they did get my name and date of birth right…the lvi stuck out to me and didnt even notice the grade,size and dates were all wrong untill i looked again.x
Hopefully the onc will be able to explain - and apologise for getting stuff wrong in the letter! That is terrible!!
You have me worried now though about my own treatment. I was also grade 3, 15mm with LVI. I only did one cycle of chemo (FEC), although beforehand it was strongly recommended And now the onc was “well, you did one, and the main things were surgery, rads and tamoxifen” - but I though chemo was the only thing what would kill off stray cells that had already left the breast region? And that tamoxifen isnt infallible at stopping ER+ cells from multiplying into tumours.
My lung consultant wants me to see the onc again soon as I’ve been feeling rubbish, so I will revisit all this with him then.
Lisa xx
sorry if iv worried you lisa,i think maybe as your tumour was very small that your oncoligist feels you have had what you needed treatment wise,but to put your mind at rest its worth you having a chat about things.also mine was agggressive,invasive and 25mm.my grandmother had bc and only had rads as thats all they had in her day she lived to be 94 without chemo.xx
Thanks Sarah, it is good to hear about your grandmother - amazing 
I know rads are pretty tough on malignant cells so I am hoping and praying that I’ve had enough treatment, and the tamoxifen will keep me safe for the next 4.5 years - like we all do.
My onc has said chemo was only an extra 5-10% benefit - but none of us wants to be one of the unlucky %. I guess we just have to trust them and believe that they know what they are doing!
xx
I think the big problem is when they don’t explain things properly. I know that not everyone wants all the facts and figures but for me as things are at present I know I want as much info as I can get so I can question things and know that I have done the best I can to kick this thing in the teeth. Sarah, I also had worries over them getting things wrong and mixed up. The day of my call back when they told me they were pretty certain it was cancer (huge shock as I went on my own as they had said results would take a week or so in the original letter) the nurse asked me about my recent house move. I hadn’t moved for 12 years so that was a bad start! On another occasion the onc was looking at the wrong patient’s notes and thought it was my right breast that was operated on when in fact it was my left! I wonder how far she would have got talking about the wrong person if we had the same side operated on. I felt with my treatment that they had made the decision from the outset what my treatment was going to be as lump estimated at 11mm (in fact it was 18mm and I only found that out because I asked) . Likewise the grade 3 I only found out because I asked and when I said to the onc regarding the no chemo decision as I was worried about the grade she said it was better to be grade 3 with no nodes involved than grade 1 with nodes involved. I understand that but how does that affect my own treatment plan? There seems to me to be very little info about LVI so we worry about it as its a bit of an unknown. I am really trying to improve my odds by taking regular exercise anyd following a healthy diet although sometimes its harder than others. I hope you get a reply soon and it helps to allay your worries. xx
thanks cracker…thats not very good is it mixing you up with someone else!i think maybe they have mixed me up too?i mean they have my name,date of birth and address right but not much else!i shall let you all know when i get a reply back;-) x