Please explain why my BS took out 16 perfectly healthy nodes?

New-girl

I have struggled with this every since I found out about it from reading my pathology report one month after my bmx.  BS never told me.  Nurses never told me.  First thing I asked  after surgery was how many lymph nodes were taken.  Had that horrific sentinel node biopsy from my understanding to identify nodes so if that one was clear, they could leave the rest alone.  I have read lots of women on this site that had cancer in nodes that still didn't have 16 taken out.  When I asked my BS, she ever so sweetly explained that sometimes when removing breast tissue that some are removed.  She is suppose to be one of the best in this area.  When I spoken to my other doctors about this, they all tell me how lucky I am that I had such a good surgeon.  I do not see many on this site that had as many nodes removed as me.  I hate wearing my sleeves.  I know I am at a very high risk of lymphedema.  I am angry and frustrated.  Why do breast cancer patients have to hear how lucky we are all the time? 

kira66715

grt--Sometimes, there are a bunch of nodes in the area of the breast under the arm pit, called the "tail of Spence" and when they do the mastectomy, the nodes come out also.

There have been other women on these boards who were told that just one sentinel node came out, and then when they read their path report, they discovered that there were a lot of nodes in the tissue from the mastectomy.

We are not lucky, and you have every right to be frustrated.

I'm going to put in a link for lymphedema risk reduction, as the odds are in your favor that you'll never get lymphedema--it's less than 50%.

http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm

Are you wearing the sleeves for prevention?

Kira

New-girl

I wear sleeve when I have taken long airline flights.  They are beyond miserable.  I was told that my bs was making me have so many follow up appts with her to check with a special monitor that detects the smallest amount of lymphedema.  Unforturnately along with never telling me that she took so many nodes, she never did the test.  I am frustrated because when I confronted them about the path report the PA and BS just slidestepped it and gave me all this paperwork on lymphedema and wrote me a prescription for sleeves.  One for each arm thank you so much.  Just frustrated reading that experienced surgeons do not take out than many and from the stats on this site, it looks like that is what most women got. 

cathy1968

Hi grt42btexan - your experience sounds almost exactly like mine!

I went in for a umx plus snb.  Ten days after the surgery I went in for the follow-up and my BS proudly told me "we got all of it and it was all non-invasive, oh and the 14 nodes removed were clean."  14 NODES??!!! WHAT THE...?!!!

I was pretty annoyed but resigned to it over the next few months....until 5 months after the surgery when my hand began to swell.  As I began my LE treatment I got more and more angry... livid... infuriated even.  Finally I got so angry I made an appt with my BS because I just had to ask why were 14 healthy nodes removed.  He was more that kind and explained to me that when he began the node surgery my sentinel node was enlarged to approx 2cm by 3cm.  This is often an indication of malignancy so he removed more nodes surrounding it.  He didn't actually intend to remove a particular number of nodes, he simply followed protocol to remove surrounding nodal tissue to secure a healthy margin in case of malignancy.  14 nodes was what ended up coming out.  I was immensely relieved to find out there was a valid reason for it.

I'm offering my story only to suggest a possibility, but also to add that, as in my case, there probably is a perfectly sound medical reason for your 16 nodes out.  I'm just so sorry that your BS wasn't professional enough to give you a satisfactory answer.

Hugs and hope you can come to terms with it, it is truly a frustrating experience.  And remember, as kira points out, you still have a very good chance of never developing LE!

Mooleen

I too asked how many nodes were taken after my umx. I was told 5-6. When I went to my followup with my bs, he was shocked when the path report showed 22 nodes. I never had a snb. I was upset, but what's done is done. I haven't had any problems, but will just have to take precautions. I only have worn my sleeve when I flew. By the way, all my nodes were clear and there was no more dcis present in the path report, so I probably wouldn't have needed a umx. I am not sorry about it because I didn't want to be looking over my shoulder.

SelenaWolf

Sometimes, even when the sentinal node tests negative for cancer, more nodes are removed because - although rare - it's possible for cancer cells to "skip over" a few nodes.

camillegal

Well I didn't ask but for some reason my dgtr did and I had 38 nodes out, but some were from different places --I really don't understand where cuz I figured what's done is done and I truly trusted my surgeon so LE came and I deal with it.

exbrnxgrl

Also, bear in mind that the axillary nodes are encased in a kind of fatty wrapper. Each person can have a varied number of nodes in this wrapper. The pathologist unwraps it and counts the nodes, so there is no way of knowing before hand how many will be in each wrapper. I had a level 1 AND that contained 13 nodes plus the two sentinel odes.

Caryn

comingtoterms

My nodes were swollen and 27 were removed. I am ok with this because at least I know that the swelling wasn't due to nodal involvement. Just as a positive note: I am blessed not to have had lymphodema despite the high number of nodes removed. Tammy

dogsandjogs

I had 17 nodes removed during my mastectomy in 1982. In those days they didn't know about the sentinel node.

I had no problems whatsoever----

Wishing you the same!

camillegal

Dogsandjos--I kind of like some of the days when they didn't know about things---cuz things didn't happen much then.

coraleliz

The radiologist that did my biopsy explained to me that some surgeons are more aggressive & this can be good or bad. If I went with a 'less' aggressive surgeon I might need an additional surgery. I went with a surgeon he told me was less aggressive & only takes out "as little as possible". Of course he told me all of the surgeons were excellent. Actually my choice of surgeons had very little to do with my conversation with the radiologist & more to do with personality as well as my comfort level. For me it wasn't a time when I could logically think things thru(or at least not very well). DH wasn't much help "you decide"  "you know more about this stuff than I do". Friends also didn't get it...........So I could have very easily ended up with a more aggressive surgeon.....

DianaNM

Texan, I could have written your post. Spoke to my surgeon several times about the node surgery. Was told he would take 2. After surgery he told both my husband and I that he took 2. Pathology report said 16. I was so upset, and I have reason to be. Same deal, mine were in the tail.

I've had truncal lymphedema since surgery. It's gone down a bit, but 3 months later, still have it. Big flap of skin under my arm that continues to the back, swelling under the scar too. And right where a bra strap hits. Trying to figure out how to compress it, how to dress. So far not having much success. It gets worse when I try to exercise or do any lifting. The scar creates a ditch that gets very irritated when the flap part gets rubbed.

I have to keep telling myself at least I don't have a tumor anymore. But wishing I had a different surgeon. 

Binney4

Diana, that's so discouraging! Sorry I don't remember if you said you have a good lymphedema therapist. S/he should be able to reduce the swelling, relieve the irritation and discomfort, and help you find great compression solutions (SwellSpots, "chocolate bar" or "spaghetti" foam pieces, and/or a compression bra or cami) to keep the swelling in control. Good control helps prevent serious infection, so it's important to get good help, especially since the "ditch" irritation raises the infection risk.

Let us know if we can help! Gentle hugs,
Binney

camillegal

I really feel bad u sound so discouraged and LE is no fun and all of u are trying to adjust to different things going on in u'r body and it's so difficult I know. But I have to say I really loved my sureon and thos he took out almost 40 nodes I don't know what was what and it didn't matter and just a couple of weeks ago I had a test to take and when the tech so my scar she said how perfect it was, of course it's ugly but medically speaking it's good and I feel like he saved my life I was Stae IV from the beginnin and he and my onc worked hand and hand to get me to NED--it took a long time and my last surgery I almost died from complications but he ot me thru---It was day surgery but I was stuck in the hosp. a couple of days and he was by my side loads even at the end of the day--I teased him was he worried about a law suit and he said no, that my body just never cooperates but he worries about me and huged me. He was super strict with nurses (they really didn't like him) so they didn't like he was around alot and said could u tell him how good we're treating u and they were. So I guess I hhave a different perspective on surgery and my Drs. and my surgeon had no bedside manner at all--and I told him he had to work on tat and he did actually. He gave me tests that breast sureons don't usually do and he was always watching over me so I was so lucky and I'm sorry for anyone who didn't get rhe kind of treatment that I got from my team of Drs. They'd call me at midnite cuz they wanted to check on certain things they were unbelieveable to me and I've moved and had to change eveything so I'm so far lucky my Gp called me at midnite once to tell me to go directly to the hospital last month and she got a room for me to get treatment right away. So I'm blessed with Drs. so far thhat made a world of difference in how I rook everything and they acted like they totally cared about me pw==ersonally which means so much when u;r so sick. Sorry this is so long but I truly feel bad when u'r Dr. in anu way disappoints u--they gave me an attitude that was wonderful and I honestly think that helped me feel better about everything.

Binney4

camille, that's a beautiful post--warm and encouraging. I'm SO GLAD they were there for you!

Be well!
Binney

Leah_S

Diana, I'm so sorry you're having this trouble post-surgery. Are you upset that the surgeon took the nodes, or that you didn't know so many would be taken? It sounds like he didn't communicate well with you. A mastectomy includes the tail of Spence; it's considered part of the breast (since it's breast tissue). Everyone's anatomy is different so some women have a lot of nodes there, some don't. I had ALND and had 17 nodes removed while others with the same level of nodes taken will have 30 removed.  He might have meant he would take 2 from outside the breast.

Leah

DianaNM

Leah, I know it wasn't the surgeon's fault that I had nodes in my breast tail. I do kind of feel that he should have told me he doesn't do a lot of mastectomy without reconstruction. I found out right before being wheeled into surgery that 90% of his surgeries were lumpectomies, and the rest mx with recon. I would have talked to another surgeon had I known. When the lymphedema therapist and your fitter seem a bit shocked at your scar etc, you know something is wrong. I don't think my therapist really knew how to help the truncal and underarm swelling. And at $75 a visit, I quit going.

I ws fitted with a $300 compression bra/camisole with a Swell Spot to go under my arm. It's uncomfortable and irritates my underarm flap. The surgeon later told me to be very careful about compressing that area, the swelling could go into my arm. So still trying to figure out what to wear most of the time. I have one soft cotton cami thing with big armholes that gives lefty no support but does hold a fiber foob. I wear that most of the time when I leave the house. I have a trip planned at the end of October that involves five hour plane flights. That's why I bought the bra. Now I don't know what I should do.

Binney4

Diana, if you have lymphedema under the arm and in the chest area, the swelling needs to be reduced for a couple of really good reasons. The first is that stagnant lymph fluid is a very high risk for serious systemic infection (bacteria love the warm, protein-rich stuff!). The second is that stagnant lymph sets up an inflammatory response that results in hardening of the tissue (fibrosis) and leads to further lymphatic damage. I'm not aware of any studies that show that reducing the swelling in the axilla and/or chest causes arm lymphedema. In fact, it's much more likely to be the opposite.

You need a good therapist to help you with this. Don't know where you are in NM, but if you check out the links on the therapist locator you should be able to find somebody else who can give you the help you need (deserve, actually).
http://www.mylymphedema.com/therapist.htm

I'm assuming from the price that the compression bra you have is a Bellisse, yes? If so, there should be other less aggravating swell spots you could use with it. You certainly DON'T want to irritate the area, but some compression and some MLD should get that swelling out of there and make the whole process easier. (Just as an aside, I too have axilla swelling and it's irritated by nearly anything I wear--after lotioning the area well I dab on some "natural" baby powder or plain cornstarch and that really eases the irritation.

A five-hour flight does call for some planning. And some compression. There ARE answers for your needs, and I'm really sorry they've been so hard to find. Don't give up!!!

Gentle hugs,
Binney

DianaNM

No therapists in my area. Feeling very frustrated and scared now. What is MLD? 

Yes, the bra is a Bellisse. It doesn't come up high enough to compress the underarm flap so the fitter sold me a big Swell Spot to wear with it. Wore it for one evening and it looked like the cellulitis was coming back to that area.

The therapist I went to was all about keeping my arm from swellling. The massage treatments she did didn't help my swollen area at all. And as I said, it was $75 every time I went.  

I think I need to see another doctor about this. But do I see another surgeon, or who? 

New-girl

My question too...who do you see without having to go through BS or PS?  My breasts and arms are the ones that are affected.  I have had celluitis.  But other than treating my celluitis, no referals to a lymphedema specialist.  Are they in the same catagory as physical therapists and we need a prescript from Dr to visit one?  How does insurance view them?  Who is truly qualified to diagnosed lymphedema.  No way I would trust my BS to do it.

blackcat2012

manual lymph drainage (MLD)

carol57

texan, generally any member of your doc team can make the referral for evaluation and treatment by a qualified LE therapist.  To get reimbursed by Medicare (and private insurance generally follows this), the therapist must be a PT, OT, or a PT/OT assistant, so the system works as you guessed, much like a PT referral.