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Scan Results - Hilar Lymph Node

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LauraT View Drop Down
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    Posted: Jan 27 2011 at 4:47pm

Back in November I had a CT scan that detected several very small lung nodules unseen on a previous scan.  I got the results from the follow-up scan today and 3 nodules seen before increased in size (from 1mm to 3-4mm, 2.6mm to 4.7mm, 1-2mm to 3.5mm). Also, there is a new "mildly prominent" hilar lymph node measuring 1cm.  There were no new nodules seen on this scan.

All of these nodules are still too small to biopsy and the hilar lymph node is within "normal" size limits, so the recommendation is to scan again in April.  So, more waiting...
 
Anyone have a similar experience or knowledge pertaining to this?  How quickly would a malignant nodule grow?  What symptoms should I be looking for? 
 
Thanks!
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Autumn10182001 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2011 at 8:17pm
I am not a Dr, but if I had nodules growing, I would be getting a 2nd opinion.
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2011 at 8:28pm
Laura,

Do you think a PET scan would show if they were hot (active)?  I hope others that have some experience in this area will come along and share their knowledge.  I'm sorry you have to wait 3 more months for another scan.  Wishing it's just a false alarm and you get to wear the dress and crown.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote livelife Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2011 at 10:50pm
Sorry you aren't getting the answers we want! I have experience with mets in the hilar nodes.  This may not be as you want to hear, but I want to be truthful with you.  My nodes were never enlarged.  But, the were pos. for cancer on PET and also through biopsy (VERY PAINFUL).  I did Ixempra and Avastin and it cleared up.  I am going through chemo again as it has showed up in other nodes and liver.  But, I would think with the nodules increasing in your lungs, they wouldn't take the wait and watch procedure....
sorry again!
Christine
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Post Options Post Options   Thanks (0) Thanks(0)   Quote johnmc Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2011 at 11:05pm
Hello Laura,
My wife had mediastinal nodes - she is TNBC - and they were as large as 3.5 cm when first discovered and three lit up on PET scan - all bigger than 1 cm.  Halfway through her treatment a CT showed largest node was down to what was considered normal ( it had shrunk to 1cm) because - and this is the important  part - normal on a CT scan is anything 1cm or less.   However the pulmonologist who did her biopsies compared it with a CT scan she had when first diagnosed with breast cancer and comparing them he said that at the original scan, there were no visible nodes at all - his point being that even though the CT scan was read as normal (because no nodes were larger than 1 cm) - there was still probably some cancer there and the nodes were not back to where they were originally. In other words - there has to be some cut-off in node size - of what should be considered abnormal -and that cut-off is 1 cm.
Now several months after the followup scan that was read as normal (largest node 1 cm)she had a PET scan. This time, the PET was negative and the node that was 1 cm, was no longer visible at all. So going along with Donna, a PET scan MIGHT show activity indicating cancer.
I hope this is not too confusing. As to how fast nodes can grow, I would imagine this could vary person to person, depending on how aggressive the cancer was.  Also with my wife, her ca27-29 was going up and that was the reason we got the PET scan. These numbers do not correlate for everyone but if your ca27-29 was above normal range and trending upward, then that would add additional evidence that the 1 cm node might be abnormal.  One other thing - our oncologist told us that PET scans have significantly lower radiation exposure than CT scans, and I believe I remember confirming this online - and that might be a reason to go with the PET instead.
But keep in mind, that even a PET scan has limitations and if it comes up negative, it could be because there is not "enough" activity to show up as positive "yet". When my wife's orignal PET scan was done, all the nodes that lit up were at least 1.4 cm. So your oncologist, from his or her experience, might know that a one cm node is not very likely to light up. Unfortunately, or fortunately, however you want to look at it, your node maybe just too borderline to do anything about right now. Hey, that sounds like it might be a good thing! Anyway, you could ask your oncologist what he or she thinks about getting a PET scan and here what he/she has to say.
 
John
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2011 at 12:37am
Dear Laura,

I also believe you should consider getting another opinion.

I have a specific suggestion and that is Dr. Edith Perez at The Mayo Clinic Comprehensive Cancer Center
She is Deputy Director there and is a Professor of Medicine. I had a very nice talk with her and I found her to be a caring, brilliant physician/researcher. Her presentation was excellent.


if you are interested in trying to meet her I can try to help with an appointment. Please send me a PM if you wish..

all the best,

Steve








Edited by steve - Jan 28 2011 at 12:41am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2011 at 8:13am

Thank you all for your input.  You are really confirming what I have been thinking - get another opinion.  My doc and I discussed the PET and John, you are right on the money.  He was concerned that the PET might give us a false negative right now.  BUT, in my mind, the lymph node did not show up on the scan from November, and to be at 1cm now is pretty quick growth.

Steve, I saw Dr. Carey last year for a second opinion post-treatment.  What do you think about getting my doc to send her all the info and get her thoughts?  I am certain he will be open to getting another opinion.  You can send me a PM if that's best.
 
Christine - I am sorry you are still in the trenches and I hope the chemo you are on is working well without making you feel badly.  When your hilar nodes lit up, were they doing a routine PET?  Were you having any symptoms?  Thanks for being honest with me - I really appreciate that about this place.
 
Thanks again,
Laura
 
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2011 at 8:26am
Dear Laura,

I feel seeing Dr. Carey again is an excellent idea. I am going to send you a PM with some more specific thoughts.

I don’t know if they will do it in your case but it is my understanding that Dr. Carey, at times, convenes a tumor board on Wednesday to review the records and then meets with the patient on Thursday. 

Good luck!!!! and I am delighted your oncologist is open to the idea of a second opinion. To me, that is one of the marks of a good physician.

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2011 at 10:13am
Laura, you sound so calm.    I would be eating Ativan by the fistful.
I agree with everyone that it doesn't hurt to get a second opinion, but can also see that waiting another few months and scanning again is probably the best way to go.  I'm actually surprised they scanned again so quickly (November to January, right?).  Two months is not enough time to really assess whether things are growing in a worrisome way.  When I had the same thing happen - 3 2-mm nodules were seen in my lung - I waited over 4 months until scanning again so that the results would be more informative.  Mine turned out to be a false alarm, and I am hopeful that yours will too.

Best of luck,

d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote LauraT Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2011 at 1:15pm
Denise - thanks for your thoughts.  I'm kind of surprised at the calmness myself! It has to be grace and peace given from God!  The original rec was to rescan after 2-3 months, so that's why my doc went ahead and ordered the follow-up this week.  Right now, the next scan is scheduled for April. 
 
I spoke with my doctor and he agreed that asking Dr. Carey to look over the reports was a good idea so I am going down that route and will have records sent to her.
 
Donna - I think I would look really good wearing the dress and crown, and I think some fabulous new shoes and jewels to boot would finish the look!
 
I'll let you all know what Dr. Carey says.
 
Thanks much!!
Laura
DX 10/09 @44, Stage I IDC tnbc, DCIS other side, Neoadjuvant TCx4, Bilateral Mastectomy w/Recon 1/10, 1.2cm 0/7 Nodes, 5/11 Mets to Lungs/Lymph Nodes, Avastin/Taxol, 10/11 Bone Mets, Xgeva
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