Hi, I have had my first cycle of AC as neo adjuvant chemo before surgery. I have an enlarged lymph node which has been biopsied twice with no conclusive results. First time FNA, inconclusive. Second time core biopsy, only fat cells sampled. I know the radiologist (same lady both times) found it very difficult to reach.
My onc has said he will not get the biopsy repeated again, but will wait and do SNB with surgery. If it’s positive, anc to follow. My confusion is over what happens if it’s negative at that stage. My onc has said it could be negative by then if the chemo has done a great job, even if it’s positive now. If that is the case, he has said they would not do an anc because my nodes would be clear. This leaves me feeling really uneasy. Is it possible that there could still be cancer in other nodes after chemo even if the sentinel was clear by then? And shouldn’t they be removed if they were ever cancerous? When I pressed him on this, he admitted there was “debate in the literature” but that doesn’t make me feel any better!
Does anyone else have an understanding or experience of this? My bcn told me to leave all surgery related questions until a later date as there’s so much chemo to get through first. Normally I would agree with her, but in this case mightn’t it be too late to get a clear answer later? Should I be requesting a repeat biopsy with a different radiologist or can’t they do that once chemo has begun?
Hi Fimbo
I was in the same position as you, except that the team knew that I definitely had affected lymph nodes. I had neo-adjuvant chemo, then mx and full node clearance back in 2008. Results showed that quite a number of the nodes were still cancerous and at the time my bs wanted me to have more chemo but the oncologists were happy with the results. I remember feeling very uneasy at the time, so can understand your concern. I managed 5 years but am back here again now. The good thing is that it is only a recurrence and there is no spread, but it’s back to the chemo rollercoaster again. Thought I would be a June Jewel - you’re one bunch of crazy women!! - but looks like I’m going to be a July Junkie! Not sure if this will help at all - sorry! Tamsin x
I don’t post very often now but your situation sounds similar to mine when I was dx in 2010. One of my nodes was enlarged but they weren’t sure what with as the FNA was inconclusive. I had AC regime chemo, then surgery. The surgeon said he would remove what remained of the lump together with doing a SNB and if that was clear all well and good and if not he would do an ANC. It was clear so I got away lightly I think as I needed no nodes removing.
I know it is easy to say now that I am 3 years down the line, but your BCN is right - you have all the chemo to get through first, leave surgery until you have finished chemo and speak with the surgeon. I know when I was having surgery the idea of leaving the nodes and only doing a SNB was quite new but if the nodes are clear there is no benefit to taking them out. And if your sentinal node is clear the rest will be as that is the first node it travels to hence why they check that.
I then went on to have radiotherapy and 12 months of Herceptin as was HER2+ but have (so far touch wood) had no problems since.
Sam
Sam, it is encouraging that your node was enlarged but clear by the time they did the snb - you must have had a good response to chemo. I know the sentinel node is the first one it goes to, but is it also the first the chemo gets to? ie could chemo have killed off cancer in the sentinel whilst leaving some in other nodes? My onc didn’t really answer that for me.
Tamsin, really sorry you’re back here again. Like you said it’s not spread so you can get through it again. Good luck with the chemo this time. Jxx
I meant to say earlier, based on a comment you made in the Jewels thread, I know you are finding it difficult to have chemo up front and still have the lump there, but I found it very reassuring to feel my lump literally shrinking away after each chemo. And you might very well be in the position after your surgery that they are able to say that the lump had disintegrated and there was no sign of cancer at all - happened to others when I was going through it last time. Now that must be reassuring! And so far as I’m aware they have had no further problems. Keep it in your head that that’s going to be you! xx
My surgeon told me that if there was nothing in the sentinal node then there couldn’t be anything in the other nodes because to get in the other nodes it has to go through the sentinal node first…
I would also add that I had exactly the response to chemo that benedictus says - by the time I had surgery I had gone from a 5cm lump and a definite mx to no lump (I had to have a marker put in part way through chemo) and dead cells which the surgeon took out as a WLE.
And remember just because the senitinal node is enlarged it doesn’t mean it is enlarged with cancer cells - it could be something completely unrelated.
I know it is easy to say don’t worry, but please try not to worry - the chemo is going round your system and it is doing what it is supposed to do, think of it like that.
Sam
Hello!
I asked the same question prior to my surgery. If you’d like to read the responses, the thread is here: Search Results | Breast Cancer Now.
Basically I had enlarged lymph nodes that were cancerous prior to neoadjuvant chemo. My MRI post chemo showed no enlarged lymph nodes and a complete response to chemo. I ummed and ahed about the SNB and read loads of medical studies and papers that my surgeon sent me, but most agreed that there’s a 10% chance of a false negative (ie other nodes further from the sentinal being cancerous even though the sentinal was clear) and I went for the full clearance in the end. I was worrying so much about making the decision, that I knew I wouldn’t be at peace if I’d had the SNB and it was clear.
In the end 1 node still had cancer cells - and there was 2.5cm of cancer left in my breast (which hadn’t shown up on an ultrasound or MRI) so I’m pleased I made the decision.
My surgeon thinks that SNB post-chemo will become standard practice…but I just didn’t fancy being a guinea pig!
Thanks so much for the link to your thread on this, Sandytoes. So much information, but it’s really helpful. At the moment I’m inclined to your opinion of being too worried about a false negative to take a chance on.
Nobody seems to have advised me to press for a repeat biopsy at this stage, so as the only way I’m dealing with all this at the moment is by taking one day at a time, I will save all this info for after chemo.
My case was different in that I didnt have chemo first but I had my mx and SNB during that which showed up as clear. However upon getting to the following pathology appointment they said that a micro met of 0.4mm was in the SN, a node in the breast also had cancer and pre cancerous cells in the tissue. So as I had ummed and awwwed about attempting to have a WLE or the MX I was glad I chose the MX. I then chose to had a clearance of level 1 and 11 nodes and they removed 14 and all 14 were clear.
So I was mighty glad I chose that as it has given me peace of mind as they have no way of knowing which node it goes to first. I was warned about a false negative and for me I am glad that I chose the clearance. I am now into my 2nd cycle of 6 FEC-T so perhaps some will say I have been over treated but I would rather that that under.
I hope it helps but you are right to go one day at a time as there really is SO much information to handle/deal with and sometime you want them to make the choices but in reality it is good we have choices as if not - it would be in a dire position I think.
Karen
x
Your story is very similar to mine, apart from I am on EC. Also have an enlarged node since first biopsy and had to have a second FNA just yesterday. So far I have had 3 EC, but no changes to size of the lump. They are talking to take me to Taxol straightaway. Where are you now in terms of your treatment? Did chemo shrunk the lump at all? Now I wish I had a surgery first.
Hi Masha,
I had 3 AC and the lump didn’t shrink at all, although the MRI enhancement changed - I don’t quite understand what this means but it’s some small good thing - I think it means the chemo had made the cancer cells in the lump less aggressive.
They then switched me to Docetaxel and I have had 2 so far with an MRI last week. I had an appt with my onc this week and he said my MRI had not been properly reviewed yet but preliminary findings were no shrinkage. However, he then examined me and said my breast felt completely different and the lump was much softer and more mobile and seemed smaller to him. I would agree with that - not a huge change but something. The plan is 2 more Tax then mx.
Obviously I was really hoping for the lump to completely disappear and I’m quite disappointed. On the other hand, my onc said they can sometimes remove what seems to be a large lump and find only dead cells, so that’s what I’m hoping for now, that my lump is dying inside!
I know exactly how discouraging it can be when you hear of other people’s lumps shrinking and it isn’t happening to you, but don’t give up. Taxol may work for you when EC didn’t.
Sending you hugs x
Thanks so much for sharing your experience so far. It feels like they gives us hope, then straightaway take it away . Your onc sounds so much like mine, if they are not the same, then been to the same university! I feel I’ve been put on treatment trial and not the actual treatment.
Anyway hope you’ll get a result you’ve been promised and hoping for.
Masha, I forgot to ask if you are hormone positive? My onc said it is rare to have a total response to chemo unless you are HER2+ or triple neg. I’m hormone positive, HER2-.
I was wondering how you are and where you are with your treatment?
I’ve had two Tax so far and had an ultrasound today. I’ll find out next week if any reduction in the size and whether is worth carrying on with 2 more Tax, or go for surgery. I saw the BCN yesterday too, but it hasn’t given me any reassurance. Is such a frustrating time. I can’t help feeling that I have become an experiment rather than a patient!
Hi Mahsa,
I only just saw your message - for some reason I didn’t get notified of it.
I’ve now had my 4th and final Tax. I had an MRI after the 2nd which was a bit confusing, first of all it wasn’t properly reported and apparently a radiologist looked at it on the hoof during the MDT and declared no change. However my onc felt strongly from palpation that there had been a significant change so went ahead with the extra Tax. I have never heard the properly reported results as now I prefer to stick with the onc’s opinion. In my more positive moments I agree - the lump hasn’t shrunk much but it is less prominent and the breast looks different.
I met with the surgeon a few weeks ago. I’ll still need an mx but I always knew that. The surgeon I saw at dx had said it would be difficult to operate without shrinkage. The surgeon who’s going to operate thinks there has been a good response and operating will.not be a problem - what a relief!
So mixed news. Of course I’m disappointed it didn’t shrink more, but I know there has been some change and I just have to hope that means the Tax has worked on any stray cells around my body too.
I’m still stressing about the SNB vs ANC issue. The surgeon and onc both want the SNB but I’m still worried about false negatives. May have to discuss again before op on 12 Nov. Did you get the results of your 2nd FNA? I have found the whole neoadjuvant chemo thing difficult. I felt much happier after meeting with the surgeon and I’m sure I’ll feel even better once it’s actually gone.
Do you think your lump is shrinking? I’m hoping you get the results you want from the MRI. Let me know how you get on. xx
Good to hear there are some changes and some positive news. Nowadays anything positive is good. 12Nov is not very faraway, hope you’ll all your questions answered before then.
I was thinking of stopping chemo after Tax#2 because it was no shrinkage, but the ultrasound after that cycle showed some movements, only 5mm. Anyway the oncologist was reluctant to stop and in his opinion perhaps we haven’t reached our goal, but we are making sure all stray cells are killed. I am supposed to see the surgeon at some point before my last Tax on 31th Oct to discuss options, most probably have to go down MX route. But then ideally like to have immediate recon and concerns what options are suitable for me. My cup is DD, may have to have the other one reduced too. So many decisions to be made, really want this to be over soon. I am also not sure about SNB v ANC, have to wait to see what they are going to consider with me.
How long rest they are giving you between last Tax and your operation? BCN was saying will be 6 weeks break in between. I thought that was a bit excessive, my WBC and neutrophils have been picking up quite well during Tax.
I do really like to keep in touch with you, as our cases are so similar.
