Update on jdepp's Supraclavicular Node (aka Virchow's Node)

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jdepp
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Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby jdepp » Fri Mar 19, 2010 7:27 am

Hello all. Here's an update after a week of confusion. Sorry for the long post - it was a long week.

Background: a dual-phase PET/CT this month showed "moderate" FDG uptake in my left supraclavicular lymph node. The fact that there was increased uptake on the second reading is highly suggestive of malignant activity, though I'm not entirely clear why. I guess benign causes tend not to produce higher second readings. Anyway it looks for the world like I have an isolated recurrence in that node.

The first thought was to do an excisional biopsy and find out what was what, perhaps also doing testing on the live tissue. The second through fifth thoughts were a ballet of angsty uncertainties. Finally we decided not to do the biopsy at all. We're watching, waiting, betting the farm on the PET result being a false positive.

-- Voice of Reason: What? Are you kidding me? Why not take out the node? If it's bad, then you'll be glad it's out. If it's good then who cares, it's out.
-- Voice of Jdepp: It turns out that in this case it is not a simple thing to just "take it out." It is non-palpable to 3 different doctors, so according to the surgeon I would have to be under general anesthesia. He would "dig around" to get it. There are risks to things like lungs & arteries.

-- VOR: Still, isn't it true that we are talking about the left supraclavicular node, aka Virchow's node, aka a "sentinel node," aka the Google-unfriendly node, the one that if you find swollen and you are over 40 years old has a good chance of being malignant, usually signaling metastatic cancer from somewhere?
-- VOJ: Yes.

VOR: If you leave it in don't you increase the risk of spread?
VOJ: Well, in the words of my oncologist: "If the node is positive for cancer then the chance of cure is very low."

VOR: So you're leaving it in because if it is bad then the news is already bad enough that you might as well wait until symptoms appear?
VOJ: Yes. It's what Justsing refers to as a come-to-Jesus moment. If I develop symptoms or if my next scan is bad then I'll take whatever action seems appropriate, but in the meantime I'm playing with the kids and drinking the good tea. Yes, the High Mountain Oolong I got as a gift.

VOR: Could there possibly be a good outcome to this?
VOJ: Two things give me hope. 1: colon cancer rarely spreads to this node and when it does it is usually part of a general spread -- to lungs, liver, other nodes... It is rare, though it does happen, for it to go to this node in an isolated fashion. 2: Benign etiology is possible, though given the obnoxiously numerical and visual PET results I do need some luck. My best hope here is that I felt sick on the day of the scan, developed a headache and later in the day I vomited. (Shout out for vomit! So under-appreciated.) The radiologist even noted sinusitis in his official report.

I'm hoping (gambling) the activity in the node is related to that.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

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joeyooser
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby joeyooser » Fri Mar 19, 2010 10:01 am

Crap I'm sorry you're in this stressful situation. I can't imagine the stress of sitting and wondering whether it's nothing or whether it's really bad news. I hope I never get into that position. We're all hoping for the best for you.
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care

jscho
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby jscho » Fri Mar 19, 2010 10:10 am

Jdepp, I'm a bit worried about the wait and see approach under the circumstances.

On the VOR side:
What concerns me the most is the trend in your CEA levels that make it less likely the enlargement is due to benign causes. Did the doctors mention the possibility of radiation to the node? How would you feel about more chemo to see if that has an effect on the node? How soon is the next scan and bloodwork?

VOJ side:
Perhaps the swelling is benign, since I think that generally it is the right supraclavicular node that is in the blood pathway from bowels. Also, a rise in CEA can be due to inflammation, though typically when inflammation is localized in epithelial tracts.

It's always good to play with the kids and drink good tea!

Best wishes,
Jeremy
Colon cancer dx Feb. 24, 2009, T3/N2/M0
Right Hemicolectomy Feb. 26, 2009
Stage 3C: 4/19 positive nodes
High grade adenocarcinoma with tumor budding
FOLFOX6 April 15 - Oct. 1, 2009
Elective sub-total colectomy July 3, 2012 due to 2 DALMs
Currently NED

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KarMel
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby KarMel » Fri Mar 19, 2010 10:43 am

JDepp:

Tough call. But, you make the decision that is right for you. You can and should get all the input you can from oncs, surgeons, even some family and friends (like colon clubbers :wink: ), but I believe in patient autonomy . If this is the choice that you believe to be your best course of action, so be it.

Peace.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

NWgirl
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby NWgirl » Fri Mar 19, 2010 10:46 am

I'm sorry you're going through this. I'm on a wait and see for spots in my lungs so I can relate, a little, to what you are going through. I like Justsing's reference - a "come to Jesus moment". This weekend when hubby gets home from his latest business trip in Chicago, I think we're going to open that 2000 bottle of Barolo. He was in a car accident last night - but thankfully, everyone was okay - though both cars are toast. At least I know right now - today - we're both here and we'll both be able to enjoy it.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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John603
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby John603 » Fri Mar 19, 2010 11:44 am

JDepp,

I had the exact same findings on a 2008 PET Scan. The scan also lit up in the axillary node under my arm. They biopsied that node because it was safer than doing the supraclavicular one which has a lot of nerves, muscles, etc running through the area. My biopsy came back positive for CC met. On the good side, 10 treatments of Folfiri and Avastin shrunk the met significantly and then 33 daily treatments of radiation have ensured that the cancer hasn't come back in this area. Unfortunately for me the cancer has spread to my lungs and pelvic lymph nodes. If you have any questions feel free to send me a message.
John

Dx Stage IIIC (14 of 36 LNs +) Jan 07, age 42
Colectomy Jan 07
Folfox + Erb'x Mar 07
Recurrence in Lymph Nodes Feb 08
Folfiri + Avastin Apr 08
NED Dec 08
Recurrence in lungs & pelvic LNs May 09
Folfiri/Avastin May 09 - Nov 09
Erb'x/Irino Dec 09

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CRguy
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby CRguy » Fri Mar 19, 2010 12:00 pm

jdepp
Just a quick clarification :
jscho wrote: generally it is the right supraclavicular node that is in the blood pathway from bowels.


Actually it is the left supraclavicular node which is considered the classical Virchow's node, due to its relationship with the thoracic duct, lymphatic drainage of most of the abdomen. It is used as a metastatic "sentinel" but not all enlargements are tumor related...e.g. infection, inflammation, body fluid disorders etc. ALSO there are definitely PET "false +++" tissues and nodes to be considered. One is a hibernoma...brown fat "tumor" which is rare but appears very much like a "hot" tumor on PET
(( ...believe me I looked up all these things when I did my PET as well !! ))

Like any situation we find ourselves in, does it fit with who you are as a patient ??? If wait 'n see is not you, is a different opinion something to consider ??

Keep in touch my friend, there are a group of us with the "chest thingies" going along this path for the next while. We kind of need to be there for each other. Let us know if we help you out in any way ??


jscho wrote:It's always good to play with the kids and drink good tea!

This is supremely good advice, which I see you both have already taken to heart ! luv Oolong, and also walking a 135 lb. "puppy" !

Prayers and best wishes
In Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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jenhopesprays
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby jenhopesprays » Sat Mar 20, 2010 7:51 am

Jdepp,

Your uncanny ability to channel the VOR and the VOJ makes light work for the average colon clubber.

CRguy wrote:jscho wrote:
It's always good to play with the kids and drink good tea!

This is supremely good advice, which I see you both have already taken to heart ! luv Oolong, and also walking a 135 lb. "puppy" !


I third that. Hopefully when you run out of the tea that was bestowed upon you, you will let it all hang out and treat yourself to some more.

Jennifer
Stage IV: dx 8/07 at 39.. colon & liver resection & rt ovary
17 rounds of folfox.
12/08 ovary tumor removed with HIPEC & folfiri w/Avastin
9/11 liver resection # 2 followed by chemo
NED

Have Hope with Capitol H

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justsing
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby justsing » Sat Mar 20, 2010 8:31 am

I don't have time right now to read everyone else's posts, so sorry if this is repeat info.

Voice of MC: LEAVE IT THE HELL ALONE!!!!!!!

I hate to say it, but that was the first place I noticed any symptoms when I recurred. In my case it was big enough to feel and see, so it's very different from your situation. And when I noticed it, I had stuff going on in my lungs and several abdominal lymph nodes. So it was not just isolated to the Virchow.

DO NOT GO DIGGING AROUND IN THE LOS ANGELES FREEWAY!!!! The chance for "morbidity" in that region is significant, and IMHO, there is no way it's isolated to that lymph node.

If you've got metastatic activity, then it's all still below the radar and chances are that it will declare itself on a scan in the next 6 months or so. You COULD go on some prophylactic chemo like a low dose of Xeloda or something, but that's the only action I would take if'n I were you, and I doubt it would be all that effective.

Watch. Wait. Compartmentalize. Store up some amazing memories of your time in that beautiful place. Make like Frederick because -- cancer or no cancer -- you're gonna need all that stored beauty when you get back to the grind in Cleveland.

Right now you're dealing with phantoms. Wait until you've got a fully formed enemy and then you'll know what you're dealing with and can fight it properly.

MUCH LOVE AND STRENGTH BEAMING EASTWARD TO YOU!!!!
justsing, 46
Stage IV
colon resection 12/07
Liver resection 04/08
Phase I vaccine trial
liver, lung LN mets
tried Oxi, Iri and Avastin
now trying new chemo combos then sir spheres
College prof in theatre & voice
2 girls 18 & 14, one son 10

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CRguy
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby CRguy » Sat Mar 20, 2010 11:00 am

justsing wrote:Right now you're dealing with phantoms. Wait until you've got a fully formed enemy and then you'll know what you're dealing with and can fight it properly.
MUCH LOVE AND STRENGTH BEAMING EASTWARD TO YOU!!!!


jdepp :

I am thinking you just got your" second opinion", and words of wisdom, from a very special CClubber.

In Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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John603
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby John603 » Sat Mar 20, 2010 9:02 pm

JDepp,

In addition to what I had previously sent you regarding cancer in Virchow's node, I would recommend that you do a chemo treatment and then blast the node with radiation (this is nothing like radiation to the abdomen) and then do a maintenance dose of chemo if you have one that you know you can tolerate. I took an 8 month chemo break after the radiation which was really enjoyable, but when we did a scan after those 8 months, I had 30 nodules in my lungs, mets on my retroperitoneal area, and on my vena cava and aorta. I don't know if I had done maintenance chemo rather than taking a chemo break, if I would be in much better shape today. It is frustrating to me, because I handle Folfiri/Avastin with ease and doing 5FU and Avastin would have been even easier.
John

Dx Stage IIIC (14 of 36 LNs +) Jan 07, age 42
Colectomy Jan 07
Folfox + Erb'x Mar 07
Recurrence in Lymph Nodes Feb 08
Folfiri + Avastin Apr 08
NED Dec 08
Recurrence in lungs & pelvic LNs May 09
Folfiri/Avastin May 09 - Nov 09
Erb'x/Irino Dec 09

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CRguy
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby CRguy » Sun Mar 21, 2010 11:05 am

jdepp

And yet more great input, from another very special CClubber.

Cheers and best wishes to all three of you folks
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

jdepp
Posts: 488
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Re: Update on jdepp's Supraclavicular Node (aka Virchow's Node)

Postby jdepp » Sun Mar 21, 2010 7:18 pm

Thank you to everyone who responded. Cancer has a way of forcing things, and it looks like my choices this time are idiot or genius with nothing in between.

Thank you Justsing (Mistress of Ceremonies) for coming in with your mellifluous voice! Somehow you managed to make my behavior sound reasonable.

And John, Jscho, CRguy, NWgirl, Jennifer, Joeyooser, Karmel -- I very much appreciate all of your perspectives & thoughts.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18


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