negative nodes ending up with Mets - numbers?

rdrake0

JanMarch: I don't mean to sound negative, but I had clean nodes, no lympho or vascular invasion.  I was multifocal (had DCIS and IDC in many places), but the IDC was, at MOST, only 2.6mm!  However, they didn't really get as large of a clean margin as they wanted.  (Keep in mind, I was Grade 3.)  So somehow at least 12 cancer cells got out and ended up in my liver!  And there they each grew larger than any of the bc got in my breast...before the bc was even discovered in my breast!

Here is how I know, I had a breast MRI before the bc surgery.  I can now see the shadow of the liver cancer on that image (it was below my breastbone, the liver goes that high up inside you!).  But because (I guess) the people looking at my breast MRI were 'Breast Cancer Specialists', they weren't even looking at my liver.

I am sure I am the exception to the case.  But it doesn't hurt to be your own advocate.  Even after the docs found one lesion on my liver, they didn't think it could be cancer.  I had a doctor stake his reputation on that lesion in my liver being benign.  I just had a hunch that it was cancer. So I found another doc who would remove it, and it was.  And he found 11 more of them in there as well.

Well, that's my story, and I'm stickin' to it...

Ruth

JanMarch

Ruth, thanks for sharing your story.  That just blows my mind that you can have such a small amount of IDC in your breast with clear nodes and no vascular invasion and still end up with mets.  There are just so many unknowns with this sneaky beast.

Question about Zometa - any chance I can get my onc to prescribe it only being Stage 1?  It seems like most of those who are getting it as a preventative are Stage 2 and3.  Having not done chemo, I think it might be a good thing to have.

lexislove

Jan, you can ask your onc for a bone density test. If it shows you have some bone loss or mildly osteopenic, you can ask to have it perscribed for that reason. Insurance will probably not cover it since you had no chemo and stage 1, but they might perscribe it for bone loss due to age, menopaus ect.

1Cathi

Hi Firni,  thanks for the kind words. XOXOXOXOXOXO 

Sydney prayers that all goes well.

Jan from what I understand,  lymphovascular and blood invasion of CA cells are 2 diffrent entities. CA cells can move on either of those ways.  I mentioned in an earlier post I have come to under stand BC thats mets to the bones is more often passed through the blood stream.

orange1

JanMarch - I had stage 1 and got it for "prevention of osteoporosis" even though I had a bone density test and I had super dense bones to start with!  However of coarse my onc really prescribed it to reduce the chance of recurrence.   Some oncs seem to be willing to do it.  Others don't. Some insurance pays, some doesn't.  It doesn't hurt to ask.

JanMarch

Thanks everyone - I have my next followup with my onc in November.  I will definitely be checking on the Zometa.  I have no idea which way my onc will go on this issue, but I hope he'll be open to the idea.

Cathi - thanks for that clarification.  I wasn't sure if lymphovascular invasion and blood invasion were the same.

Lexislove - I'm 42 and premenopausal.  I assume this makes it less likely that I'd have osteoporisis?

lexislove

yes, unless you had chemo or a family history. I would still ask your onc though.

orange1

I should add....asking is good, if that doesn't work pestering may still work.  Others on BCO have gotten their onc to prescribe it by being persistant.

Mouser

There are a couple of studies with 20 or 30 yr follow up. Of course treatments were different, since a 30 yr follow-up in a paper published today would mean some patients were diagnosed 40 years ago so one has to extrapolate, using data about modern treatment effects ...

 I went through this really carefully when i was trying to decide if i had to go on AIs.  Unfortunately i did not keep the articles i used to  figure this out... It's hard to find them: there are so many articles on bc! Right now, i can only find two (and they are not the best ones!).

One is a study out of U Chicago, which looked at 826 women with node-negative bc, treated between 1927 and 1984. All had mastectomies of course.

Of those with tumors < 2 cm, 79% survived 20 years, disease free.
Of those with tumors > 2 cm, 64% survived 20 years, disease free.

No data on ER,PR or HER, nor on histology, and chemo was not available for half of that time; it is not mentioned. If you factor in improvements in treatment, i think the odds have gotten significantly better .... check back in 30 years ...

But one interesting point is that over half the recurrences in both groups were in the first 5 yrs. Apparently after that the risk per year ismuch lower. 

The other is a study out of Norway that begins by saying 30% of node-negative patients die of bc -- maybe that's where JillyG's onc got his data. But then it goes on to give  overall survival rates at 30 years of 68-87% depending on subclassification -- i'm sure some people died of something besides bc, so their disease-free survival rate is actually HIGHER than what they say at the beginning!

About the argument that you have to look at overall survival -- that depends. If you're comparing 2 treatments, yes, because you need to worry about side effects (like heart problems from old-style rads, other cancers from some chemo). But so many of us with bc are over 55 when diagnosed -- and mortality from almost all causes does go up with age!  So overall survival may give an unnecessarilly depressing picture. We all die eventually - JillyG's question is: how likely is it ot be from bc?

shelloz1

I'm a little confused about nodes and sentinels, maybe someone can clear something up for me.  My friend has just recently been diagnosed with breast cancer, she had 4 sentinels removed, 2 were clean, 2 had cancer, an additional 10 nodes were checked and all clear.  I had 8 nodes removed, all clear, but my doctor did not mention that I ever had sentinels removed.  Can someone please explain the difference? 

Shelley

Anonymous

Remember that the studies that Mouser referred to tracked women BEFORE Tamoxifen or AI's were released (Tamoxifen may have been  in clinical trials in the early 1980's, but was not on the market) , and they have really improved the outlook for women who are ER+. The numbers should be better today.

barbe1958

Also, remember Herceptin for the HER+ ladies...

NancyD

Shelley, not all surgeons do a sentinel node biopsy or test when they perform their surgery for a number of reasons:

1) if you had chemo before surgery, it changes the landscape too much and they might get a negative on the SN when there is still cancer in an axillary node

2) if there is already some suspicion that cancer has moved to the axillary nodes...one or more are enlarged

3) and some feel that if they are doing a mastectomy, the SN nodes will be coming out with the breast tissue anyway...so they just move on up the chain.

Sentinel nodes are just the first in the chain leading from the breast, and therefore more likely to have trapped and developed the cancer. But all the lymph nodes in the breast area are in danger of developing cancer once it becomes invasive.

Mouser

Nancy --

Now that you mention it, i guess they do remove internal mammary lymph nodes during mastectomy. But not (necessarily) the axillary nodes. I had a mastectomy for what turned out to be widespread ADH, and they did a sentinel node biopsy at the same time. Since i'd previously had a lumpectomy plus sentinel node biopsy, i now have N=0/2.

Reasons for taking out more axillary nodes: Sometimes several nodes light up, and sometimes they can't find the sentinel node with the dye (almost happened with my mastecomy, but enough dye made it). And some doctors are super-cautious -- my lumpectomy was billed as an excisional biopsy, but the surgeon took enough tissue to get clean margins, even tho he was surprised when there was IDC there.

And no, mastectomy is not the ordinary or accepted treatment for ADH! But this was a case of technology changing a picture. I'd had a lumpectomy and rads a year earlier for a 5 mm IDC plus a separate 1 cm DCIS, after all the usual tests including an MRI -- but the initial mammo was by film. My clinic switched to digital mammos, and my next  mammo showed another 7 cm of calcifications, confirmed as at least ADH by sterotactic biopsy. Another MRI still showed nothing, and all the oncs agreed this was nothing new, just better technology. My local onc and local rad-onc wanted to leave it.  But my 2nd opinion and i agreed that i couldn't leave it in there, and a 7 cm lumpectomy, even on a DD cup, wasn't worth the results! So i had a mastectomy to prove i didn't need one.

AllieM22

JanMarch--from what I know, yes. Cancer cells can travel either through the bloodstream (vascular) or lymph system.

tibet

Is the SLN located in the auxilliary or in the breast area?

I was removed 21 nodes. I don't know if that is all the nodes around the auxiliary. How many nodes are there in the auxiliary?

Usually path report can say whether or not there is vascular invasion. Mine says there was no vascular invasion.

mumito

Man I just found this thread while it is informative it also scared the #### out of me.We are suposed to think positive but those stats are just plain depressive.

NancyD

The number of axillary nodes varies from person to person, but there are at least three to four
"levels", with a group of nodes at each level. Some surgeons go up the chain and take as many as they can in the first AND which could be three levels. Others just try to stick to the first two levels knowing they can always go back if it looks necessary (ie. there is cancer in all the nodes taken out).

The SLN can be anywhere...that's why they do the dye because 1) the nodes are hard to see and 2) it follows the chain from the breast in the order the lymph fluid flows.

No vascular invasion is very good.  

tibet

Nancy D

If they took 21 out of me, how many levels do you think they took?

I had 1mm micromet in one sentinal node and the rest of 20 nodes were all clear. There was no vascular invasion and no lymphatic invasion in the tumor, then I don't understand why I had this 1mm micromet in one sentinal node?

Does anyone know if micromet prognosis is as good as node negative?

lexislove

Some oncs will consider micromets as "negative node". I think its  very good!

swimangel72

Even with negative sentinal and axillary nodes, it's possible for BC cells to spread via the mediastinal lymph nodes (in the center of your chest). These nodes are not routinely tested......also, depending on where your tumor was located, BC cells could have travelled to the mediastinal lymph nodes without detection. It's quite common for surgeons to test for the sentinel lymph node by injecting blue dye in your nipple/areola complex and watching the drainage pattern. The first node that is hit with blue dye is the "sentinel" node. However...........studies are showing that the blue dye should be injected near the location of the TUMOR in order to follow the drainage pattern, and oftentimes, the "sentinel" lymph node in these cases are in the medistinal lymph nodes. Sorry to add more worry - but this may explain why women who are node negative and Stage 1 STILL can get recurrences or mets. Here's a study concerning the mediastinal nodes, which I posted earlier on another thread entitled "Enlarged lymph nodes":

Internal Mammary Chain Drainage of Breast Cancer Borys R. Krynyckyi, MD, Jungho Shim, MD, and Chun K. Kim, MD

The article by Estourgie et al eloquently maps out the drainage patterns in breasts depending on the location of the primary lesion and therefore the injected radioactivity when using intratumoral injections. When primary lesions are medially and inferiorly located in the breast, the highest rate of internal mammary sentinel node (IM) visualization will occur. Depth of injection also had an effect, with deeper injections of nonpalpable tumor favoring the visualization of IM nodes.Indeed, it has also been extensively reported that only perilesional or intratumoral injections visualize IM nodes to any significant extent, whereas superficial (dermal or areolar) injections very rarely demonstrate IM nodes. One additional factor that is worth mentioning is the effect of breast size on IM visualization rate. We noted a marked effect that breast size has on the rate of IM visualization (besides injection depth). In patients with small breasts, the IM visualization rate was 46.2%; in those with medium breasts, 21.1%; and in those with large breasts, 0% in our series (P <0.017). This could be explained by a proximity effect to the internal mammary chain of nodes. The average lesion in the center of a large breast and the injected perilesional (subtumoral) radioactivity would be much farther from the chest wall and the deeper lymphatic channels that course to the parasternal IM sentinel nodes (SNs) than the average lesion in the center of a small breast, which would be much closer to these channels. The closer the injected activity to these channels, the higher the probability that injected radioactivity would reach the IM connected to them. A similar mechanism could potentially explain why <strong>nonpalpable lesions had a higher drainage rate to internal mammary nodes in the current article by Estourgie et al, assuming that they were, on average, situated deeper in the breast than palpable lesions.Interestingly, in our study, in the subgroup of women with small breasts, whether the primary lesion was located medially or laterally appeared to make less of an appreciable difference in IM visualization rate.Internal mammary nodes were visualized in 50% of those with medial lesions and in 44% of those with lateral lesions when the breasts were small. This is in contrast to an IM visualization frequency of 42% and 10% in those with medium breasts for medial and lateral lesions, respectively.This indirectly suggests that the proximity between the primary lesion and the IM chain of nodes in the chest wall has a substantial effect on IM SN visualization rate and could represent an important factor for tumor spread (and potentially treatment) in patients with small breasts with primary tumors located anywhere in the breast, that is, somewhat irrespective of the medial or lateral location of the primary tumor.Leppanen et al has shown that a greater chance of detecting IM nodes exists in patients who are younger, thinner (lower body mass index), those with primary lesions lower in the breast, and when the lesion is nonpalpable.A potential explanation for why inferior lesions would be more likely to visualize IM nodes is that these lesions would have "access" to more of the internal mammary chain than superior lesions, because they would be starting closer to the origin of the IM chain inferiorly in the chest, ie, "upstream." Additional theories have been described regarding factors affecting axillary node visualization such as increasing age, in which postmenopausal replacement of macrophage-type tissue by fat and/or decreased tissue turgor resulting in collapsed lymphatic vessels has been suggested as the mechanism of decreased visualization of axillary SNs.Whether these mechanisms also affect IM visualization is not clear. In summary, factors that favor IM visualization include deep injections (intratumoral/perilesional compared with shallow dermal injections), small breast size, medial and inferior primary breast lesions, younger age, lower body mass index, and nonpalpable tumors (vs. a palpable tumor in a same-sized breast), many of which could be explained by a simple proximity effect to the chest wall and/or IM chain.

Department of Radiology Division of Nuclear Medicine The Mount Sinai Medical Center New York, NY

-----------------------------------------------------------------------------------

I wonder if someday soon radiologists will start routinely testing internal chest lymph nodes as well as the axilla lymph nodes..........just because the axilla lymph nodes test negative for cancer, doesn't mean the cancer hasn't already spread to the internal nodes!

NancyD

newalex, I really couldn't say how many levels that would be. Some people have only a few nodes per level, while others have many. You'd really have to ask your surgeon how many levels he thinks he took.

He may not even have an very accurate idea. An AND was once described to me as scooping out a bunch of tissue from the underarm and hoping they caught some lymphnodes in the process.

JanMarch

Swimangel -can you define from the posted article "medially" and "inferiorly" located tumors or specify the breast quadrants to which those locations refer? 

hollyann

Oh great...mine was at the 6 oclock position and close to the chest wall......Well  I am not going to worry about it........I am notgoing to borrow trouble as my mother used to say.....I will take things one day at a time and one doctor  visit at a time........I think my problem is I read too many articles and get my self into a tizzy and panic........I really appreciate all these articles but I do over do it on them......

jrgolomb

I hear ya hollyann......

Diana63

When I started out I prayed for stage 1 or 2, then a lady at my doctors office was asking about my stage. She said I hope you are at least stage 2, I just looked at her like she was crazy. Then she said if you are stage 1, you have a harder time with insurance and the doctors. I still thought that she was crazy but I have met stage 1 ladies who never had a MRI then would find out later they have METS. I keep wondering if they had been treated like me, with everything thrown at them would they have METS now. One lady even suggested she may have had METS from the start but she will never know because no MRI was done at her dx. I think any and all cancers should at least have an MRI, that way you know what you are dealing with. One doctor I had at first said one intelligent thing before I found a new Doc. I asked him why an MRI was necessary he said we must see the beast to fight the beast. No matter what you do you still have nagging questions but if you took all they have to give you know you did all that you could do. As a stage 3 lady I wasn't given any choices and it really made me mad at the time. I think we should all be given the option no matter what stage we are and told about all of the benefits & se's. Now that my chemo is over I'm glad I did it all 4 AC & 12 Taxols, 23 Rads. but I still wish I wasn't treated like a 5 year old child.

pip57

I have always said that I think it is easier being stage III.  Maybe not better statistically, but easier to make tx decisions.  They throw everything at you.  They assumed that there was probably cancer in my internal mammary nodes and treated me accordingly.   

Dawnbelle

Diana,

  Your old doctor's remark about "seeing the beast in order to fight the beast" is a great comment. Thanks for sharing. I had a breast MRI before surgery & my insurance company fought hard not to pay for it.

  My oncologist has ordered bone scans of all sorts & chest xrays for me. I have been crazy about it all, worried about what they could find. With it all not being done till August 6th, I have tried talking myself out of doing them. You helped me make peace with it. I need to know, I need to be sure. Thank you very very much.

Dawn

Summer

Hi barbe, just discovered this site and read through all 4 pages.  Yes, we can participate in the Tailor X study here in Canada. I live in BC and have just recently been accepted into the trial study.  I am told that I should have my Recurrance score and allocation information in two to three weeks. 

61linda

Cathi1, haven't seen any recent posts and just want you know I'm thinking of you and hoping for the best. Sending tons of love and caring.



Great info on this thread. Makes me really wonder what I missed for treatment early on but did bilat MX on 3/26 for ILC that turned out to be 0.6 cm IDC with lobular features plus LCIS and other precancerous stuff both breasts. No Oncotype done but onc told me risk of recurrance at 5% after AI for 5 years. Big, big family history BC and lots of other kinds, too.



I've been feeling like I dodged a bullet but maybe that's a bit premature. All the docs I saw before surgery argued against bilat MX except the plastics guy then after the final path report kept telling me how unusual it was. I don't think it's that unusual at all. If they don't look for more they certainly won't find it. Anyway, I'm still glad I listened to my body and had the bilat MX and after reading all 4 pages, more glad than ever. Thanks.