I saw my surgeon today who was pleased with my MRI results following my chemo. Prior to starting chemo I had enlarged lymph nodes on my MRI that proved to be cancerous following a fine needle biopsy so I was down for a full axillary clearance. However, my surgeon has offered me the option of having a sentinel node biopsy and if it’s clear, the option of not having full axillary clearance and a reduced risk of lymphodema (sp?). However, apparently this is quite new - before if the lymph nodes were positive prior to chemo, they were all whipped out following chemo regardless.
It sounds great in theory, but I’m worried that even if the SNB showed only scarring and dead cancer cells that it doesn’t mean that the cancer is necessarily killed off in all other affected lymph nodes. What happens if there’s one little live cell lurking away in lymph node number 10?
Has anyone else been offered or gone down this route? I need to make my decision over the weekend.
Hi Sandytoes,
I had a lumpectomy and SNB in March, they took out 5 nodes and one showed cancer. The usual protocol/standard practice in the UK is to do a full axillary clearance once a positive node is found. Monica Morrow at Sloan Kettering published a study earlier this year that might be now practice changing. She believes it gives no survival advantage to do a full clearance, so I have decided not to a clearance. I’ve had 6 rounds of chemo and now I’m having 25 rounds of radiation and 8 boosters
Hi - Sandytoes , i read this article and it doesn’t appear to apply in our cases …? See what u think .
My surgeon did discuss this as well , it appears that a few of my nodes are still raised , the largest being 5mm. I presumed that meant there is still cancer , but my OH corrected me and said the surgeon never said that , we will know after surgery ,
Anyway , like you i have to think about this before my pre op on 10th , in my mind , the lymph nodes are the highway to the rest of our bodies so any little stray beggar would have a clear route to escape without full node clearance . Also , if my tumour hade responded fully to chemo i would have felt better about deciding on SNB , but with tumour still very much present , evidence still of raised nodes , i think my decision will be full node clearance regardless of the after effects. I would suffer lymph oedama before a recurrence of this s*** .
However , my surgeon gave the option of lets wait and see when he gets in there ?? I have another week to ponder this , but at this point i am still with full clearance .
Yes - that was my immediate response to my surgeon - I’d rather have lymphodema than secondary cancer. But she said that a study was done on 900 women and their long term prognosis wasn’t affected and their quality of life was improved as there were fewer cases of lymphodema. I’ll read the papers and let you know - or forward them to you?
Tamoxifen will also kill stray cells.
And I guess they don’t know WHAT’S in your raised nodes and tumour until the path report - it could just be lots of dead cells. Obviously they’d whip the nodes out pronto if there was cancer still present after the SNB.
My surgeon has won awards for their work in SNB so I do trust them… But on the other hand, I’m opting for a bilateral mastectomy to reduce my chances of a new primary and recurrence so it seems silly not to let them take my nodes if I’m letting them take my boobs!
Love that you’ve been offered the same! With each other every step of the way, Lorna!!
I thought I would let you know what happened to me re this topic (I think we are speaking about the same thing??).
I had WLE and SNB last Oct, had 5 lymph nodes removed, 1 showing cancer cells. I had expected to have a full clearance if there were any signs of cancer at all so was a bit surprised after surgery (but also a bit relieved re side effects) not to have them all removed. But of course you trust the professionals and didn’t question it.
I then went on to have 3 x FEC and 3 x Tax, followed by 6 weeks of rads including 4 boosters. I am still having Herceptin until Jan 2012.
It was only when I started coming onto this site more regularly I learned that most women seem to get a full clearance so was a bit worried. I brought this up with my onc, only a few months ago and he said that ‘it was quite an old fashioned way of doing things’ and they don’t view the surgery as stand alone but it is used together with chemo and rads (also the risks attached and the fact it was on my right side - right handed). And because I was having rads to the area, all of that together was proved to be just as effective.
So who knows . . . but it put my mind at rest a bit (and also there was not a great deal that I could do about it at that point anyway!)
Not sure what I would have done if I had been given the decision before though - a difficult one, maybe would have taken the risk of a full clearance for piece of mind???
In your case, if there were any other lymph nodes affected then the chemo would hopefully have got them. However, I’ve already had my chemo as had it prior to op. I know I had cancerous nodes as they were biopsied, so what my surgeon is offering is an SNB and, if it’s clear, no further surgery in the axilla. My concern is that if the chemo has killed the cancer in the sentinel node, does that mean all others are likely to be clear or could there be cancer in other ones that hasn’t been killed…? My surgeon also says this is the way breast surgery is heading as they think they do too many unnecessary clearances. So, on one hand I don’t want to risk a few naughty cells still brooding away in my nodes…but nor do I want to be suffering from lymphodema in the future if this procedure becomes normal practice!
Of course, my SNB could come back positive, in which case I’ll have the full clearance and all of this thinking and worrying could be for nothing!!
Can I join your thread, I am quite interested in this one. I have grade 1, 9mm which after WLE has gone, but out of the 2 nodes taken out during SNB one was found to have cells, but only just above the margin to proceed with further surgery. I am now facing another op on Friday for partial clearance of lymph nodes (not sure why not total). I think it something to do with the paths that the nodes are in. I am worried about Lymphodeam but as has been said before I dont wont to take any risks of more cells lurking. I assume as it has reached the nodes I will then face chemo.
I had enlarged lymph nodes 2 -5 cancerous but no primary found, I had researched the procedure you are talking about and asked if I could for go the lymph node clearance as my clinical response was clear, I was told no as it had been in the nodes it was still best to remove them although at the end of the day the choice was mine. I had 14 removed and no cancer so the chemo had done its job, ive since had rads and im glad really that all opportunities to be rid of cancer were taken. However I didnt have to have breast surgery as they had never found a primary so a lymph node op was minimal in comparason to what you ladies have been through.
After thought this treatment was also recommended for me by the Royal Marsden, but we are all different.
I am 2 years post-op. I had a left Mx and full lymph node clearance. Followed by chemo, rads and herceptin. I had 2 nodes positive for cancer. I wanted full clearance as I wanted all possible trace of cancer to be gone. Lymphodema although a risk is not a definate following surgery.
I try to be carefully with that arm, worse thing is no sunbathing, especially with today weather
Hi Hatty, I’m being treated privately at the Royal Marsden, so they are definitely offering this as an option to neoadjuvant ladies.
Marian, my surgeon doesn’t offer it if you have chemo AFTER surgery as there’s no way of seeing how you respond to the chemo. They’re offering it to ladies who have chemo prior to surgery so that if they find all of the cancer has been killed in the sentinel nodes they don’t do a clearance and my surgeon says it might become the norm. If there are live cancer cells still present they will still do a clearance. It’s pretty new - before they wouldn’t even bother with SNB if they knew there was cancer present prior to chemo - they’d do a full clearance.
So no other neoadjuvant ladies out there who’ve been offered this apart from me and Lorna?
Hi there, really not sure what I would do but will just tell you my experience as I have just had a big tumour and neoadjuvant chemo, followed by a mastectomy and node clearance. On my ultrasounds and MRI’s both before starting chemo I only had a single node that they could see (it was confirmed by biopsy) and on my mid-chemo MRI I was told it was no longer visible, so all along I thought it was just one. I then had 6xFEC-T followed by a mastectomy. I was totally gutted at the surgery follow-up to be told that micro-mets had been found in several other nodes in addition to the one they knew about. They did confirm that most of these were abolutely minute, some as little as a single cell but still…I had been told based on the mid-treatement that I was having a really good response to the chemo so as I’m sure you can imagine it has all been so upsetting and I’ve struggled to understand how the cells were still there after all those drugs. They are very positive and said they had taken them all away but if I hadn’t had full clearance then that wouldn’t have happened. The important bit that I’m trying to get to was when we asked them if they had been in nodes 1,2,3,4 etc i.e. consecutive nodes, their answer was no, not necessarily! Which fits with what you are worried about. Sorry not sure if that helps, it is a really tough decision as the threat of lymphodema isn’t fun but so far so good for me on that front. Lots of luck with the op and whatever you decide and by the way the thought of the mastectomy was much worse than the reality. A x
Gosh that’s a tricky one isn’t it? I’m so glad I wasn’t asked to make that choice.
My experience was very similar to Lucca, which is why I’ve held back on commenting. At diagnosis I had one ‘enlarged node’ and by mid-way through my neoadjuvant chemo (FEC-T) it was described as ‘feeling absolutely normal’ (my consultant said a rescan wouldn’t tell them anything new, so went with the palpation). After surgery the pathology showed ‘pre-cancer’ in three nodes. I was a bit shocked at the time, but glad it was out. Now seven months post surgery and 4 months post rads and so-far-so-good in staying only ‘at risk’ of lympheodema.
You will make the right decision for you. I really hope you treatment goes really well and all this is soon just a vague memory.
mariane 101 i researched it when the results first came out and they argued with me saying i had to have clearance i still wonder if it was necessary and if it turns out it wasnt i will be very cross so will watch this with interest and might right to the surgeon again. I will look the last letter out and see what it says and let you know.
I had SNB and mammoplasty in Jan(mammoplasty unsuccessful as path report showed multi focal and no clear margins). SNB showed 3/3 as positive. I then had Mx and node clearance and from the 23 nodes removed, none had any signs of cancer, no dead cells, no scarring, nothing. There were no cancer cells in the breast tissue either so I had a 100% pathological response to chemo. I am obviously over the moon about this as the likelihood is that if the cancer was travelling around my body, the chemo should have stopped it in it’s tracks. But…I wonder whether the Mx and clearance was necessary. I guess it takes it until the path report to get the full picture.
What a predicament for you. I’ve posted this on another thread but not sure if you’ve seen it so will post it again here. It’s from the New York Times and talks about how node clearance may be over treatment.
This was discussed at the younger womens forum wasn’t it? I remember the speaker saying there was differing professional opinions about whether full node clearance was always necessary.
I had a full node clearance - I had multiple enlarged nodes on CT/MRI pre chemo - but despite 2 aspirations they were never proven to be cancerous. I had one benign and one equivocal result.
I had 4 rounds of FEC and then surgery. Scarring in one node only!!!
So we know cancer was once in 1 node only, maybe micro deposits in others. Who knows?? I had a complete pathological response in the breast as well.
My surgeon felt that the risk of a false negative from a SNB after chemo was too high. She felt that we had a high degree of suspicion that it was once there so get it out to prevent recurrence. Same as you do the breast tissue really.
I do have mild lymphoedema - but TBH I view it as a small price overall.
I found the decision about the breast op hard enough (had a WLE in the end).
Lucca and Rev - thanks for sharing your experiences. That does help as it confirms my fears.
Lisa thanks for the article. Really interesting. After seeing you at CM’s I got myself referred over to FM who did the presentation on reconstruction at the forum, so she’s my surgeon. Did she talk about it at the forum, or was it someone else? I must have zoned out at that point!!
Thanks everyone for sharing your experiences. I have to say i’m leaning to the clearance…but will read the full report when my surgeon sends it to me.
You’ll be in really good hands then. She was fantastic. Yes, it was her who talked about snbs.She said she had spoken at a conference and there were different schools of thought.
Have you been offered a SNB as an op on it’s own?
Although my nodes were clear, I do feel comfort knowing that they have gone and that route has been severed. I also had rads to the superclav which are where the level 3 nodes are I think. My hospital (Marsden in Sutton) usually give this when 4 nodes or more are involved but as I had chemo before node clearance they couldn’t be sure that I didn’t originally have more nodes affected. It’s so complicated isn’t it? Maybe I’ve been over treated but I’d rather that than under treated.
Supposedly the risk of lymphoedema is higher if you have node clearance and rads and having had both, I am worried about this but am trying to take a risk based approach. Yes,I carry shopping,just not the heavy bags. I try not to go sleep on my right side (but end upon that side naturally). I use gardening gloves when pruning my roses but not for other gardening jobs and I just can’t get used to carrying my handbag on the other shoulder either. Would you believe this? A wasp flew upmy sleeve and stung me twice.I of course wentintoa state of paranoia but it’s settled down after 2 days of anti histamines. Once I have had my 6 week post rads check up, Iam going to contact one of the therapists from MLDUK todiscuss having regular massage on the area.
I’ll see if I can find the other post and bump it up for you xxxx
Dear all,
Thanks so much for this thread - I will be seeing oncologist next week for exactly this discussion. Already had mx on right breast plus full node clearance, and lumpectomy on left. THe lumpectomy revealed a unsuspected small amount of cancerous cells, but they wanted to get on with chemo, so no further surgery was done at that stage. I know they will propose a mx on left breast, plus some node clearance, once the chemo is done. However, the chemo will likely wipe out any traces of cancerous cells in the nodes, so there will be little evidence there to base a decision on how many nodes to take out. Your comments about rads are very helpful too. The onc did talk about a’tailored’ plan for surgery and rads to each armpit…
It would be really good to hear what decision you make and how it turns out for you… all the best, Mxx
