negative nodes ending up with Mets - numbers?

JanMarch

Thanks, Ruth.  My insomnia has since been resolved.  I was having trouble sleeping right after I started tamoxifen, but it's much better now.  I have heard that there might be a link between a melatonin deficiency and breast cancer. 

Celtic_Spirit

I've taken melatonin since the mid-1990s to help me sleep. It obviously did nothing to prevent breast cancer.

Sydney6

Thanks JanMarch!  That was one of things I liked about the Benedryl.  When I'd wake up itching in the middle of the night that little dose of Benedryl would help me get some sleep.  Otherwise I'm sure I'd be extremely sleep deprived.  I've been on the Prednisone for just 2 days now, but hardly any itching today.  Keeping my fingers crossed!

Sue

mshalto

Hi Giulia, you're not "bad"....I'd feel just the same way you do! I'm in the Boston area and my onc. is affilitated with Brigham and Women's hosp. and is also the Chief of Oncology at the medical center I see her at. I trust her completely!

Take care,

Miriam

p.s. Just got my first post-treatment MRI results back: BENIGN! (Remember, I'm a Lower Inner Quadrant Girl,myself. Maybe we should start a fan club for L.I.Q. girls! 

barbe1958

I am an LIQ girl too!

rdrake0

Me, too!  Only mine was kinda kidney bean shaped and includes a little of the lower outside, too.

Ruth

sam52

LIQ here too.......and I also had DCIS surrounding the IDC.

However,it means that the scar from my mast starts way low down,and so on the plus side, is not visible in low-cut tops.

To add something else into the mix: I have heard (from an onc), that recurrences which happen later (ie after 5 years), are more likely to be grade 1. Anyone got anything on this?

Sam

MarieKelly

Sam,

A recurrence from the original primary tumor which is detected after 5 years is most likely going to be lower grade,  but not necessarily histologic grade 1. But that's assuming that the original tumor was of a lower grade as well, because recurrences are almost always the same grade as the original.   If remember correctly,  a large study I read a while back said that 90% of all recurrences for grade 1 were within the first 9 years, for grade 2 within 7 years and for grade 3 within 5 years.  So based on that information, the majority of recurrences detected after 5 years are more likely going to be lower grade and if it's after 7 years, most likely to be grade 1.  Grade 1 tumors are very slow growing, so it can take many years for them to become large enough to be detected...and that's why you don't usually hear of someone getting diagnosed with recurrence from a grade 1 primary in the early years after the original diagnosis.

However, for someone who originally had a grade 3 tumor, this does NOT mean that any recurrence of that primary after 5 years is likely going to be a grade 1. As I mentioned before, a recurrence is usually the same grade as the primary -  so for someone originally diagnosed with a high grade tumor, any recurrence is almost always going to be high grade as well...whether or not it's been greater than  5 years. Basic rule of thumb... the greatest risk for recurrence of high grade tumors is within the first 5 years and the greatest recurrence risk for low grade tumors is between 5-10 years.

 Ki-67 5%
Dx 2/22/2004, IDC, <1cm, Stage Ib, Grade 1, 0/1 nodes, ER+/PR+, HER2-

Anonymous

Interesting calculator, Renee!  It grades me at IIb, which I believe is correct.  It also says that with adjuvant therapy, the AI's that I am having problems with, it will only extend my life expectancy for 3 years.  Huh.  But, with the therapy I've already received, the outcome looks okay.  But then, I could get hit by a bus tomorrow and all of that data is moot. 

I am more concerned about mets than reoccurance, mainly because the tumor was formed during a time of extreme estrogen unbalance - I was having a reoccurance of endometriosis in my remaining ovary (7 years after a hyst./ovary removal, and severe endo), ovarian cysts, breast cysts.  So, it's logical that I also got bc during that time and it took this long for the tumor to become evident.  Mets scares the crap out of me, because there is no way of really knowing what is floating around in the blood stream. 

Like Gilda Radner said, "Its Always Something." 

London-Virginia

Hello ladies - nice to meet you all.

I am in a dilema (surprise surprise).  1 of 2 nodes in my SNB had micro foci.  (no vascular or lymphatic invasion, according to path report).  After chemo, which I start in about 2 weeks (FEC), they want to remove all the remaining nodes.  I don't have a great prognosis overall, and my thought is that given the obvious risks for LE with a full "strip", I may only be prepared to say, ok, have 10 or something.  In hindsight, to take only 2 nodes seems pretty useless. I am told the cancer can sort of hop above the next set of nodes anyway, but if that is the case, what the hell is the point of SNB?   Given the high likelihood that I will have a recurrence within 5 years, I am not convinced that I will be gaining a lot with this extra surgery.  I think you can probably guess where my thoughts have been going!!

I am doing ok with Femara, the infections seem finally to have cleared up and I now actually have a bit of skin growing on my breasts (hoorah).  I feeel well in myself and am finding it easy to get my 10k steps done. 

Anyway, I would be glad of your input; cannot argue with oncologists any more.

Sydney6

Hi Virginia - I know when I had my surgery my surgeon said they do the SNB and check the node or nodes while you're on the table.  She said if it shows cancer then she goes in and takes out 2/3 of your remaining nodes.  I asked her if anyone has ever had cancer in the Sentinal node or nodes once it gets sent to the lab.  She said it has only happened to her twice and then you have to come back and have the 2/3 of your remaining nodes removed.  Good luck & let us know what you decide.

Sue

Mamita49

London-Virginia,

I just finished Chemo, and will have in 2 weeks another operation.

My new surgeron will take out a few more nodes, and I will also have a mastectomy.

I would do it. Get out what you can. The risk for LE is there, but you can see a specialist for that, do exercise, whatever. BUT you will live.

But it on a scale, the risk for a LE, or dealing with recurrence again.

I my mind, knowing that my doc, my team wants a few more nodes out and as a precaution a mastectomy makes my feel more safe.

My first surgeron left me anyhow with a pretty ugly lumpectomy.

Good luck 

hrf

Virginia, why do you say you don't have a great prognosis. From the details you post, it seems to me that you do have a very good prognosis. You are considered an early stage with a great chance of a full recovery. I had 4 lymph nodes involved and the surgeon took out all the nodes she found during the bm. It's doable. Good luck with your decision.

London-Virginia

Ladies - what a fantastically prompt set of replies - thank you all so very much! 

Sydney (Sue)  - your point is very well made about the sent. nodes being checked whilst you arre on the table, and straight after the op the surgeon told me they were good!  Now, given that she is what a former British Prime Minister would call "a dysmal jimmy" I was both surprised that she would make a didactic POSITIVE statement, and, of course, thrilled.  Sadly the path folk found two micro foci (under 1mm) in one of the 2 nodes.  I am interested in your surgeon's comments in this context - obviously I was a bit unlucky.  Soemehow though it is a comfort hearing your surgeon's comment; mine was clearly quite shocked.  And as she is a thoroughly arrogant cow, pissed off that she got it wrong.  N.B.  Very good surgeon but I won't go back to her. 

Even though I have had infection problems (immediately after surgery) and it has been a bit of a haul, I really recommend the op that I had :  mastopexy, i.e. lumpectomy and breast reduction on both sides.  I was a 34 H, so there was always a good chance of getting good, clear margins.  My feeling (and mine alone!) is that my breasts are sort of my new sentinels - if a recurrence comes I've still got a lot of breast for further lumpectomies or what have you.  The surgeon is a genius actually as the shape is fantastic.  no above nipple scar at all; she goes in from underneath the breast and sort of re-arranges and reduces the entire lot.  Very big op, but pretty clever.  I realise that over your side of the pond there is quite a strong feeling toward more sever surgery, and I do hope you will understand if I ask that we don't debate this.  But if anyone ever wants info on this op, do feel free to ask about my experience with it.

Carol - your points are eminently sensible and well made.  I think my view is that there is a statistically strong chance that I will get a recurrence, and stripping out all the nodes under the axila won't really change that.  I feel if they took out say 8 and they were clear, or maybe one or two not, that's grabbed some cancer without the risk of LE.  My mother had LE very badly so I do know what it is like.  (n.b. my mother died of BC in the late 1960s. )  These things are so personal aren't they?  We all struggle to come to some sensible viewpoint, and it is very hard.   I am vety sorry you have had to go through so much and more surgery and I congratulate you on your decisions - you sound confident in your team and steady in your resolve.  I hope it all goes fantastically well and thank you for your thoughts.  I think you are right about chucking everything at the ruddy disease! Sorry you haveto go through more right after chemo, but hopefully better times are nearby.

Helen - I commenced this unwanted journey with an open mind and a reasonable sense of optimism for the future.  This got knocked out of me very quickly, and recent visits to the oncs didn't make it any better.  adjuvant online didn't come up with anything very cheery and the docs all look glum.  My tumour wasn't all that big at 2.5 but that with the node positive and grade puts me in the funny position of being early stage but not so great.  (apologies to anyone further along the chain - I am still trying to come to grips with all of this.  Probably still will be in 10 years !!!!).  Helen, sorry for your new dx - I wish you every success in moving forward.

I am on Femara, start FEC chemo shortly, then axila surgery (or not as the case may be) and finally radiation.   I am post menopause.   If you have something good to tell me, bring it on please!!

The onc I saw last week helpfully said " yes, you single women pay for it in the end, it ups the risks you know, not having children".

She got very cross indeed when I gave her the myriad reasons why I have had a great life as a very succesful singleton, have wonderful friends etc, and had never considered the idea of having children as a handy way to  reduce cancer risk.    At that point she tried to force me to join a support network and got very cross when I said I've got one with you girls.

I went to see my GP (who actually I have never met before but hey) who was a great guy and described to me the petty squabbles, fierce competition etc amongst surgeons and oncs in top line hospitals.  He used to be an eye surgeon and retrained to be a GP because he disliked the way patients were mere numbers.  We talked for a long time and he wasn't at all partronising.  I need to find a way of deflecting onc/surgeon negativity.      Earplugs perhaps?!! 

Sorry - went off into a ramble.

Any more thoughts gratefully received.  Have a good weekend.  It has finally stopped raining here in London so we might just get a bit of sun tomorrow.

Lots of love -

hrf

Virginia, I am sorry you are going through all this. It's hard enough to deal with a dx of bc without having the issues with the docs. I think it's terrible for the onc to blame the bc on not having children. I have many friends and family members, who have children and who have had bc. My friends without children have not had it. I have 3 - had the first at age 24. There's no guarantee and this disease does not follow any guidelines. Helen

concernedsis

Jilly numbers can say anything you want them to say depending on how you pose the question and study criteria. There are studies showing mets as possible with node negative - some studies using genetests like Oncodyne as predictive.  You are stage 1 every reason to be optomistic and not dwell on what ifs. Being ER+ and having hormonal therapy available to you is a great asset. Regular checkups and a positive attitude!

London-Virginia

Helen - thanks for your words of support.  I suppose I just find the breath-taking insensitivity of the behaviour of some of these docs very difficult to cope with.  This is not unique to the hospital which I attend, I know of other people at other top London hospitals who are encountering the same thing.  I think they prefer to deal with compliant, homely folk who don't ask questions and are hugely grateful for what they get.  Mouthy career bods like me are definitely not what they like.  The onc was maybe 35.  Extraordinary that a woman of her generation should have prejudicial views about single women.  She knows nothing of my relationship status but decided to have a dig anyway.  (file : usless, childless failure).

 What I can say however, is that I haven't had to wait for anything, I am seen promptly, the hospital building is nice, AND I DON'T HAVE TO PAY FOR ANYTHING AT ALL.

I think that would finish me - I would not be able to cope with arguing with some shit at a call centre concerning health insurance.   But lets leave that debate for certain other threads!!!!!

Possibly my rather  depressed state is totally over the top - I just can't tell due to the negative relationship with the doctors.

Anyway - all the best to you.

The sun has just come out.  Summer!

Sydney6

Virginia - Loved your descrption of your surgeon!

Sue

Newbie21

Is a SNB better than a regular axilla node dissection? I know it helps with LE and is much less invasive but to find the BC. Thanks. Giulia

hrf

IMO, a SNB is better because if it turns out that the sentinal node is free of cancer cells, then they don't remove any more nodes - the surgery is less invasive and there is less chance for lymphedema in the future. I have had the unfortunate experience of going through both procedures and the SNB was much easier.

fmakj

A SNB is much less invasive because they only remove the very first node that the breast drains to.  Sometimes there is more than one node removed as they watch to see where and how fast it(they) are being drained to.  Usually during surgery, a dye will also be injected to see if it also drains to the same node.  They then find the node with a type of scanner (which alerts them to the right node) and also by the blue dye.  I've had the SNB and have not had any problems with both movement or LE. However, I still have a blue circle on my breast where the dye was injected!

London-Virginia

yes, I too stilol have a green circle round my nipple!!

I had 2 sentinel nodes taken, one of which has micro foci.  I would suggest that  it is worthwhile discussing with your surgeon that perhaps he/she might take say 5 or 6 nodes.  We get so little time to research qall these things; we make decisions quickly armed with the info we have found to date.  I feel awkward making you nervous maybe, but I really do think the 5 or 6 nodes things is a good idea, and I have noticed now that many women on this site DID have that many taken.  I am British, so I don't know if that is predominently a US or maybe Canadian idea.  If so, very good!

In my position, the surgeon wants to go back and entirely strip the nodes from the axila.  Had I had say 6 nodes taken, lets say for the sake of argument 3 had been affected, then I would accept the further axila surgery more gracefully.  Say no other nodes were affected, then I might make a judgement call about more surgery. 

By the way, having the dye injection etc is not painful.     And I haven't had any LE either.

Very best wishes to you -

Newbie21

Hi again, I think my post did not make sense. Is A snb vs axilla node better in detecting the BC, or does it make a difference in catching the BC? Also, how about these interanl mammary nodes. how can they be sure.  Giulia 

barbe1958

I had to laugh about the blue dye stains on breasts I just read about....hehehehheehe. I went to look down my top to see if I still had stains and that's when I realized I didn't even have breasts anymore! That's truly how little I think of them.

Newbie21

So those who did not get SNB are worse off? G

London-Virginia

I think both ways are good, but maybe everyone would like to add their views?  I mention the idea of getting the surgeon to take maybe a few nodes, not just one or two, because it can tell you more without being particularly difficult to recover from, and less possibility of LE.  I really would discuss it with your surgeon.

Barbe - I look a little bit like a  traffic signal!

 all the very best to everyone -

London-Virginia

I have just read some of your posts, both on this thread and elsewhere and I can see that you have quite a commitment to learning about nodes.

I think you may be confused.

The sentinel node (or maybe 2 sentinel nodes) are the first ones running from the tumour area.  (this is a rough, but reasonable description).  So, removing the first one or two gives a lot of info, as they are the first bit of the kind of drainage (or lymphatic) system.  The surgeon could also take a number of other ones just further along.  These would not be the sentinel nodes, but they are just further along.  Have you looked at the diagrams available on the information pages on this site - they are very helpful.

As you obviously haven't quite found out the info you seek, could you clariy for us what it is you need to know?  Perhaps we can think of another way of describing things.

with best wishes   

fmakj

My surgeon explained that if the sentinel node was negative, it would mean that bc has not yet entered the lymph nodes.  If there is some concern that it is positive they may take a few more or have them tested while you are still under.  I asked the Dr. in nuclear medicine would ALL breast drainage go to the first node visible (ie: axilla) and he said yes (I am Lower Inner Quadrant), but I will be asking my Onc on Monday to verify as I need clarification on the IM nodes as well.  Hope you find the answers you need.  Keep asking!

Barbe - You crack me up!!  Take care all!

barbe1958

My onc also said that though I am very lower inner quadrant it too drains through the armpit nodes. So that's two yeses so far.

As far as I know they can NEVER be definite about the pathology of a node until it gets biopsied. A quick glance under a scope in the ER just doesn't cut it and obviously gives a false sense of security.

Oh, I crack me up too!

hrf

It was my understanding that if the sentinal node (or nodes) show signs of cancer cells then they remove all the nodes. I didn't think they would pick only a few because they can't tell during surgery which ones are affected and they want to get as much cancer out of you as possible. For my first dx, I had SNB of 2 nodes and they were clear. For my second dx, we knew that at least 1 node was affected even before the surgery so they took everything out. It is my understanding, however, that the SNB, is an excellent diagnostic tool and provides the required information. Not all surgeons are skilled with the procedure though.