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Chelee
01-06-2010, 02:00 PM
Not long after my recurrence in Sept. I felt what I think is an enlarged node in my superclavical area. Well over a month ago I finally got my onc to check this out. She imediately says it's just a muscle & not to worry. The other day I picked up copies of my labs and my onc's recent "Notes". While reading all the places of my recurrences that I knew about...she also had ADDED an enlarged superclavical node. (The one she looked me in the face and told me it was just a muscle.) So she lied to me...obviously she does feel it's an enlarged superclavical node .

For anyone out there that's had to deal with superclavical nodes...what is the normal thing that should be done with them? Chemo, rads, both? Surgically remove them...what? If it's rads I'm probably in trouble because due to my lungs I doubt I can have rads up there? Any feed back on this would be appreciated it.

Chelee

jml
01-06-2010, 03:45 PM
Try not to worry, but an "enlarged node" is not necessarily a positive node/met.
Only a biopsy or confirmation via scan can corroborate that info.

I've had 2 recurrences to 2 positive supraclav nodes -just above the sternocalvicular notch.
1st time we addressed it with chemo, they resolved, but recurred 6 months later.
2nd time we did 7 weeks of rads, and that seemed to do the trick.
The rad onc was extremely precise and lungs were completely unharmed in the process.
Also, the nodes were very firm, very solid - and pretty easily differentiated from a soft tissue issue or simple inflammation.

If it is in fact a positive node and since you're already on Navelbine for the bone mets, rest assured that the chemo would be able to address this recurrence too.

Hope it's just a garden-variety-BENIGN-enlarged node!

Chelee
01-07-2010, 10:43 AM
jml, Thanks for your post. I am going to the dentist this morning about a tooth that has been bothering me for a long time. Between surgery and trt I just haven't been able to get in till now. But this tooth was bad enough to cause me to take some Cipro a while ago. So maybe it's just a lymph node doing it's job? (I hope?) I just worry because it's on the bc side...also the same side as my recurrence to axilla, & femur. But I won't borrow trouble.

The node does seem very firm & solid as you mentioned. Biggest thing that caught my attention is my onc mentioning a superclavical node in her "notes" as a matter of fact after telling me it was just muscle? It hasn't felt like it's gotten any bigger so hopefully if it is an enlarged node the Navelbine/Herceptin is working.

Chelee

Sheila
01-07-2010, 11:27 AM
Chelee
As another "node sister", the only real way of knowing is via biopsy.....mine was an exact replica of my breast cancer, same side, and they just keep returning....a treatment will work for awhile, then they pop up again. My friend had radiation, but had to stop her chemo to do it, and although it helped the neck, the cancer traveled elsewhere. The Navelbine should do the trick, unless you feel its growing on the Navelbine, and if so, its time for a change! Just keep track of it....or a CT scan if they include the neck will keep measurements.

Catherine
01-08-2010, 10:13 PM
What is a superclavical node? My neck is sore when I turn to the left. I have been trying to stretch it gently twice a day. Have gone for massages, but the tenderness is always there. Saw my Onc Dec 1, and he is quite thourogh and he did not feel anything. Any ideas?

Thanks, Catherine

Chelee
01-09-2010, 12:32 AM
Catherine, The supraclavicular lymph nodes are on the sides of your neck where you find that hollow place by the clavical. (I see I was spelling it wrong.) I found a link for you so you could see exactly where it is since I'm not good at explaining things. :) Check the link and look at "E".

http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp (http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp)

Do you see or feel any hard lumps on your neck? There usually firm & hard and don't move. You probably just did something you normally don't do that is causing your neck to hurt when you turn it. Don't you hate this darned disease...we always have something to worry about. But I have a feeling your fine. You might of just sat at your computer wrong or something like that. Wait a few days and see if it goes away. Plus your onc didn't feel anything which is a good sign. :)

Chelee

Chelee
01-09-2010, 12:58 AM
Shelia, Thanks for sharing that with me...it's always helpful. The node I'm worried about is right up against the neck in the hollow...except down a tiny bit in the hollow part. It's really hard and firm. One pulmonary doc did check it out and he even said it feels pretty "full" in there. I have been keeping my eye on it & so far it hasn't felt any bigger. Still concerns me though.

I doubt with my lung problem they would consider hitting it with rads? (Once the horse is out of the barn it sure stinks doesn't it!) For now I'm going to hope the Navelbine & Herceptin keeps things under control. I have a PET/CT coming up on the 27th of this month and I'll make sure that gets scanned. I am really anxious about this upcoming PET/CT...I hate this waiting to see if this combo is doing anything? But I sure don't have to tell you this of all people. If it's not...I think I will run back out and see Dr. Slamon & see what he has to say?

Chelee

StephN
01-09-2010, 12:18 PM
PET/CT.
When you get this scan, it should be "eyes to thighs" and that would catch anything going on in the clavicle area. Make sure this is what you are getting.

Hey Chelee, hope you are doing a little better with the leg and getting around now.
I have a 92-year-old friend who had a knee surgery mid-December and he is without walker now, just cane if he needs to walk more than a few steps. His joint was just worn down and the pain was terrible for him. He is SO glad he went ahead as he takes much fewer pain pills, and has more energy not having to drag that leg.

Chelee
01-10-2010, 03:02 AM
Steph, I looked at all my PET/CT's and they all are from the eyes to thighs. So looks like I'm covered. Thanks for pointing that out.

As to my leg I just started walking around without my walker or cane yesterday. Not very far...but I can actually walk across my kitchen and back. Short little distances...but I'm finally getting there. It's been exactly 45 days but seems like it's been 4 months. I should be rid of this completely soon. Didn't seem like I'd ever get there. The pain level went from a 13 (lol) to about a 2 or 3...so big improvement. Thanks for asking.

Wow your friend with the knee surgery must be in great shape for 92 yrs old. I've known a few people which includes my MIL that had knee surgeries...and I don't think either of them were walking without a cane that soon. Your friend is in extremly good health, or has one heck of a fantastic doctor. (Or both!) :) Knee surgeries can be a painful recovery...so he is doing fantastic. He must of been doing his PT...unlike me. lol

Chelee

Jackie07
01-10-2010, 11:22 PM
Chelee, Sheila, Steph...

I've got a tiny 'grain' feeling stuff on the right side (same side of my bc) of my neck that I've been noticing for a couple of months. It is definitely getting bigger, though still quite small. Do you think a CT scan will show if it's only .5 cm or less? Should I wait till Wednesday to tell my gynecologic surgeon during pre-op appointment, or should I call my oncologist tomorrow? There's probably nothing can be done right away since I'm already scheduled to have a hysterectomy/oophorectomy on Thursday.

When I had 'vertigo' in the beginning of October (after doing some neck exercise per physical therapist's suggestion), my family doctor ordered c-scan and MRI but didn't find anything. I'm now 100% sure this tiny 'knot' was the culprit. When I press it, the pain radiates to the left side of my skull.