| Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | From JAMA article on extracapsular spread (ECS) of nodes in SCC patients. Can ECS be determined without neck biopsy done from removed nodes in neck dissection? There was no indication on the PET/CT, FNA of lymph node, or other biopsies done on me. Maybe spending too much time trying to scare myself these days but got interested in the topic of extracapsular nodes. [quote]Five-year adjusted survival for patients without metastatic nodes in the neck dissection (pN0) was 85.5%, for patients with neck node metastases without ECS (pN+/ECS−) it was 62.5%, and for patients with neck node metastases with ECS (pN+/ECS+) it was 29.9%. [/quote] http://archotol.jamanetwork.com/article.aspx?articleid=1688126#RESULTS
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I didn't read the article yet, Don. There is extracapsular extension and extracapsular spread, which difference I'm not fully sure about or just means the same. Maybe one is more wide spread than the other or one is more concerned with the nodes? I have extracapsular spread, for lack of better words, which could be from the primary or nodes. I was told in laymen's term it's "Roaming" and "Free Form Cancer" basically cancer not lymph nodes or primary, and can go anywhere, and did. My lymph's from the Radical neck dissection levels II-V, had no nodal extension, negative margins, but cancer was found in my neck muscle from surgery...not a good sign, but it was taken out..a good thing. 5 months later I had another recurrence, the two suspected lymph nodes were in level III, V, but after removal were found not to be lymph nodes, most were removed anyway, but was "free form cancer" or "roaming cancer" or extracapsular spread for a better medical term I could find. The FNAB of the suspicion had confirmed it was metastic, but not that it wasn't a node. Positive margins, perineural and lymphovascular invasion was also found from the biopsy, meaning cancer was likely to spread along the nerve, blood, and lymph line, and did in less than a month to the edipermal layer of skin in level V, and had further surgery, radiation, and more chemoradiation. I have another suspicion on my last PET a few weeks ago in Level III, and have to get a FNAB with sonogram on Thursday, which again says a node? I had cancer in the same spot 3x, surgery 3x, radiation 3x and is close to the carotid artery, so wondering also. Anyway, to answer your question they may be able to tell, not for certain, but by diagnostic scan due the lymph shape, size if its has signs of ECD or other. An MRI is good to see if there is nerve, vein involvement, but as usual, nothing is confirmed without a biopsy, I guess. A biopsy of the node or even primary may tell if it's out of the node or primary, or has other involvement. Even with ECS or ECE, PNI, LVI, does not mean cancer will return or spread just that it may or will likely based on the percentages. Usually more surgery is done, if possible, more radiation, chemo to help prevent the spread. I think PNI has worse prognostic factor than LVI. As I mentioned, most post treatments scans are clear, I believe in the hight 90% range. HPV HNC has a lower rate of recurrence, 15%, compared to non HPV, which is much higher. The p before the TNM classification means pathological, A c means clinical, and a s means surgical classification. Good luck with your PET. All I an say between now and then is go to the festival on Sept. 7th
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Extracapsular spread usually refers to microscopic cancer cells outside of the lymph glands and extracapsular extension is an indication of macroscopic cancer cells typically between lymph nodes or connected cancer cells from lymph node to lymph node if that makes sense. I have heard one mentioned as random or loose cells only visible under a microscope while extension is usually visible from PET/Ct scans or MRI with contrast.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Ed, basically in line what I thinking. i read somewhere ECS can mean cancer outside the tumor, including the primary. It can be confusing. I guess several of my tumors, non lymph's, a few cm, are just called metastases caused by ECE, ECS, PNI, LVI, floating cancer or by some other route micro or macroscopically, and will never find out. Another one is extracapsular tumor growth lol. The most I see about is ECE with the lymph's, but probably used as a general term, non medically, for anything outside the lymph area.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Add to that an unknown primary and the numbers skew to who knows what. My tumors were extracapsular. I also was HPV+. Initial PET showed uptake in the neck nodes that were removed via selective neck dissection and a very small uptake right tonsil. Subsequent biopsies found nothing in the tonsils (palatine and lingual). 1st post TX PET was clear. Based on those stats, I have a pretty good chance at a recurrence but I honestly don't dwell on it at all. I must suffer from the opposite of anxiety ~lol~
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | With HPV+ it can happen that the primary may not be found. One thought is the body fought off the HPV disease at the primary site, but had a chance to metastesize, another is the primary dies off when the primary metastesises to the lymph nodes taking all the nutrients, blood with it. I guess similar to angiogenesis of something like that or the primary is too small to be seen on any scans, and only found when it is in the lymph nodes where it can grow much larger due to cystic fluid, rich in nutruents, blood. 80% of the time, an unknown primary is in the oropharynx, basucally the lingual and plentine tonsils, and reason they do a tonsillectomy, and radiate, usually both sides. I have seen studies for one year overall survival with HNC HPV+ to be 100%, another at 3years overall survival was also 100%. I seen rates increased in one analysis after three years, but overall, is still low at 15% vs. non HPV.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Moffitt did an exploratory to find my Primary. They had already identified 2 suspicious nodes one of which was biopsied and positive for SCC. They weren't positive but the thought they found what was left of the Primary at BOT. Decided not to do a Neck Dissection but to add chemo and radiate both sides. All of this was before HPV was a first thought or even a second thought. I had to press to get my slides tested by Maura Gillison then at JH post Tx. Those were the HPV Dark Ages but Moffitt's explanation re the Primary was my immune system probably cleared it but not before some cancer cells broke off and found the node as it was supposed to. They couldn't explain why my immune system couldn't handle the nodal attack.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=PaulB] 80% of the time, an unknown primary is in the oropharynx...[/quote]
That's how I was treated, radiating both sides. My team feels my body eradicated the primary site but not before it spread it's joy to my lymph nodes. I would have had rads only if the tumors had not been extracapsulated.
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I was never tested for HPV in 2009, to my knowledge. It was mentioned as possibly the cause by the MO, but I knew very little about it, and never asked further, and I fell through the cracks, and so did my treatment. It wasn't until two years later that I inquired with my ENT, and he saw nothing in the files I was tested. My CCC is also at the forefront with HPV studies, so I don't know what happened, probably not required then, but believe testing is now for any oropharyngeal cancer. There wasn't as much information as there is now about HPV, at least what I saw initially nor that there was a better survival rate with HPV. Anyway, the treatment was/is basically the same for positive and negative HPV. Although, I did have Induction Chemo, to be followed by Chemoradiation, which I found later there was a study for it with HPV about then. I don't know if I was a participant or was used off label. Fact is, I didn't even know what type of chemo I was getting then, and just signed papers lol. I thought I was tougher than anything, cancer, chemo lol.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Extra capsular anything is usually a signal that they should follow up your surgery with rads and chemo...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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