supraclavicular lymph nodes

[*_Julie_*]

Any body had supraclavicular(above collar bone) lymphnodes positive for BC at the time of their initial diagnosis? If yes how were they treated?

Thanks

[Lyn]

I had 16 lymph glands removed from under arm at time of diagnoses, I went on AC radiation CMF, before my next check up after treatment a voice in my head said they always check my neck for lumps and sure enough there was a lump. That was in 1998 and I am still chasing them. I have not had any surgically removed but then as soon as I got rid of one there would be another and also mets in the skin so initially I had taxotere next and I was only finished a month then there was another, all could be felt so obviously getting past the chemo, so I had heaps and heaps of radiation then Xeloda for skin mets then Herceptin, Navelbine Carboplatin and now finished Herceptin/Taxol/Carbo and MRI of head and neck as well as other scans say I am NED, but I am having physio on my neck because I can still feel a lump and I have stifness from radiation, I was warned this may happen but I feel like I have a tight necklace on. With radiaiton I would just finish one field and then another would pop up just past it.. Hopes this helps.

Love & Hugs Lyn

[Sheila]

Julie
Ihad them 1 1/2 years later after orig diag , surgically removed, placed on herceptin, now a year later they are back...I remain on Herceptin, awaiting new treatment.
Hugs
Sheila

[*_Julie_*]

Thaks for the replies, My surgery Dr says if your supravascular lymphnodes are positive for BC that means most likely there is tumor somewhere else in the body(meaning internal organs) Is this true? I was so discouraged after meeting him.

Thanks.

[lolam]

my mets were in lymph nodes in neck which was obvious to me. I had a cough which come to find out was cancer in the chest also pushing on the esophagus, hence the cough. So it was in nodes in the neck and nodes in the chest only. No other organs. Not sure if it is found right away and not a metastasis. With Taxol/carbo/herceptin now NED for 2 yrs.

[Sheila]

JULIE
I HAD NO POSITIVE NODES ORIGINALLY , WHEN I HAD A MASTECTOMY. WHEN NODES POPPED UP IN MY NECK, THEY WERE REMOVED AND FOUND TO BE BC. IT HAS NEVER BEEN DETECTED ANYWHERE ELSE IN 3 YEARS. HOPE THIS HELPS
HUGS
SHEILA

[Lyn]

Definately Not always right, I had my original lump in 1999 and now 2005 and still no organ or bone involvement and I want it to stay that way.

Love & Hugs Lyn

[Lyn]

Hi Lolam, did you have any numbness with your feet and fingers? I did 26 weekly and this is my side effect.

Love & Hugs Lyn

[Lolly]

Julie, I had 5 of 5 positive axilla nodes at time of dx, and at first recurrenc enlarged supraclivicular node and both axilla. Attempt at excision failed as the node was too close to nerves, but a biopsy confirmed original bc in nodes but no organ, bone or brain involvement. Navelbine/Herceptin for 6 months, NED for 2 and 1/2 years, then again recurrence to same nodes but again no other involvement. Navelbine/Herceptin again for 6 months, in remission and heading to Seattle Washington next week to enroll in the Her2 Vaccine trial.
It's true that positive supravicular nodes are dangerous if not stopped, but they can be stopped. It your tests have shown no other involvement, proceed into therapy with every expectation that you can and will prevail! You must believe in your ability to survive.

Love, Lolly

[Shell]

Julie-

I had a 4 cm lump at diagnosis. I also had indications through physical exam and PET scan at original diagnosis that supraclavicular nodes and lymph nodes were involved. I had neo-adjuvant chemo of cytoxin/epirubicin/taxotere for six cycles every 21 days. Tumor and nodes responded extremely well, resulting in lumpectomy. Also had SNB, which was negative. Two further cycles of CET occurred, and then I had radiation. During radiation I also did 3 months of Herceptin/Navelbine. I had a reoccurrence at lymph nodes nine months later, and had them surgically removed. Scans, etc. show no further spread.

I was never told that supraclavicular involvement guaranteed tumor elsewhere - in fact, part of the reason the Stage 3C was developed was to acknowledge that treatment could result in sustained NED. Good luck and try to stay positive...