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#166499 - 06/13/13 08:48 AM 9 of 67 nodes affected & extracapsular extension..
Meli Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Registered: 05/21/13
Posts: 56
Loc: New Zealand
Got really good clear margins on the BOT tumor but unfortunately 9 of the 67 nodes were "affected" and a good number of these also had extracapsular extension.

Originally the plan was just for radiation, but now with this large level of nodal involvement and the extension into the surrounding tissues they're recommending chemo as well. I'm also booked in to have a PET scan next week to double check that the CT and Chest X-Ray are correct in their assumption that there is no further spread elsewhere.

The surgeon told me that it's normal to have 1-2, maybe 3 nodes affected but to have 9 is pretty big, and also to have the surrounding tissues invaded this all now has me worried.

I know that until we have the results I just need to be patient and wait but have any of you had such large nodal involvement or lots of extracapsular involvement - what did it mean for you? Good or bad, I'd like to hear please.

Thanks,
Mel.
_________________________
39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads

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#166511 - 06/13/13 12:58 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2510
Loc: NYC
Sorry for your troubles. It's not good to have ECE, and so many nodes involved, which increases the chance of recurrence, distant metastases. The good part is the lymphs nodes were removed, but there are so many lymphs in the H&N, like 300, they probably did not get all being most are microscopic, so Chemoradiation is needed to fully eradicate any cancer which may still be there microscopically, and HPV is very responsive to this treatment, and or another type of treatment too. You mention surrounding tissue invaded, was this found or saying is a possibility.

I had 70Gy to the primary, 62Gy to the neck, and still had recurrences. They have to use more than 50Gy to kill SCC. I see yours is 60Gy, I guess to the primary, and would assume a lower dose is for the cervical neck, maybe 54Gy, which seems some are doing in clinical trials, and wonder wonder if this is enough with ECE, which dosage is usually increased, and outside clinical trials most dosage is 66-70Gy. Maybe you can ask about this and or a 2nd opinion.

Good luck.

_________________________
10/09 T1N2bM0 Tonsil 48
11/09 TPF IC In hospital for 187 days
07/10 NED
09/10 Met
09/10 Eye Surgery
02/11 35 IMRT 70Gy
06/11 30 HBOT
07/11 NED
09/11 Met
10/11 Radical ND
02/12 NED
04/12 Met
05/12 Met
06/12 Selective ND PNI LVI
07/12 Met
08/12 Radical ND HD-IORT 12Gy Pec flap
10/12 25 IMRT 45Gy Taxo Erbitux
02/13 NED
08/13 Met
10/13 Selective ND
10/13 TBO & Angiography
10/13 Radical ND Carotid removed HD-IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 Carbo
05/14 NED
07/14 30 HBOT
08/14 EEG EMG MRI






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#166525 - 06/13/13 02:31 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
That's the one reason shying away from neck dissections can be scary - stuff like this should be judged on a case by case scenario rather than just slapping standard practice into play. There's always that 1 in 100 that presents as unusual. So glad they removed a lot of nodes, and yes chemo and rads is par for the course. Sorry it was so involved but since the virus does respond well to this form of treatment and since you had surgery therefore - less cancer is now present, therefore hopefully if there are any stragglers left over rads and chemo will do its job well. Hugs! smile
_________________________
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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#166533 - 06/13/13 05:55 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
donfoo Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/09/13
Posts: 973
Loc: CA - SF Bay Area
Hi Mel,

Don't worry so much. You sound similar to my case. I had a primary at BOT and regional metastatic lymph nodes, how many I never new the exact count but it must have been several just the way they say multiple.

Good you are HPV+ as current chemo-radio therapies do work well on these cancers.

I had induction chemotherapy. Used a combination of cisplatin, taxotere, and 5FU. These three together offer the biggest whopper of a chemo dose there is and you will hurt.
However, it is VERY effective at treating the cancer. My final report's impression stated that there was complete or near complete resolution meaning all the cancer had been dissolved.

There are three rounds. Even a few days after round one I noticed a physical reduction in the neck nodes. Second and third rounds also I saw more reduction. By end of third round there was zero indication of any swollen nodes.

After the induction chemo, I had current chemo-radiation therapy which consisted of 35 (2gy) sessions for a total of 70 grays of radiation. I also had 6 weeks of chemo - carboplatin delivered at a low dose but effective as a radio-synthesizer for the radiation.

I am just 10 days post tx and I am feeling amazingly well so hang in there.
_________________________
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
blog http://beatdown.cognacom.com

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#166543 - 06/13/13 09:29 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
PaulB Offline
Patient Advocate (old timer, 2000 posts)

Registered: 07/06/12
Posts: 2510
Loc: NYC
Also effective is brachytherapy as a boost, followed by Chemooradiation.
_________________________
10/09 T1N2bM0 Tonsil 48
11/09 TPF IC In hospital for 187 days
07/10 NED
09/10 Met
09/10 Eye Surgery
02/11 35 IMRT 70Gy
06/11 30 HBOT
07/11 NED
09/11 Met
10/11 Radical ND
02/12 NED
04/12 Met
05/12 Met
06/12 Selective ND PNI LVI
07/12 Met
08/12 Radical ND HD-IORT 12Gy Pec flap
10/12 25 IMRT 45Gy Taxo Erbitux
02/13 NED
08/13 Met
10/13 Selective ND
10/13 TBO & Angiography
10/13 Radical ND Carotid removed HD-IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 Carbo
05/14 NED
07/14 30 HBOT
08/14 EEG EMG MRI






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#166546 - 06/13/13 10:48 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
Meli Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Registered: 05/21/13
Posts: 56
Loc: New Zealand
Thanks again everyone.

Paul - Yes there was ECE found. The 60Gy I mentioned was the inital idea with the radiation only treatment. I'm unsure what the new plan is and have my first oncology appointment on the 24th June. It will be to both sides of the neck though since the tongue drains bilaterally. I would now imagine it would be a nigher dose since it's more extensive than first thought.

Cheryl - Yes I'm so glad I had surgery first. It just felt like the right thing to do to surgically remove the cancer and then treat any remnants.

Don - So glad you're out the other end of treatment and are feeling so well. It's lovely to hear stories like this when I'm at the start of the journey.

Thanks Paul.
_________________________
39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads

Top
#166550 - 06/14/13 12:02 AM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 873
Loc: Ohio
Hi, Meli
on a positive note, a small primary tumor is a good prognostic sign, as is the fact that your surgeon achieved clear margins. Your emergency trach should hopefully have put all of the drama behind you - so full steam ahead on your treatment!
Maria
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#166563 - 06/14/13 10:02 AM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
Meli Offline
"OCF Kiwi Down Under"
Supporting Member (50+ posts)

Registered: 05/21/13
Posts: 56
Loc: New Zealand
Hi Maria
Yes, full steam ahead indeed.
_________________________
39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads

Top
#166753 - 06/17/13 02:31 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
Jay Jeong Offline
"OCF Down Under"
Senior Member (100+ posts)

Registered: 09/27/12
Posts: 145
Loc: Australia
Hi Meli,

My wife also had 3 lymph nodes come up as cancerous with one of them showing ECE.

Unfortunately, ECE is not something that should be taken lightly and more aggressive treatment (chemoradiation) is usually recommended.

Best of luck with your ongoing journey and I wish you all the best moving forward.

p.s. Which part of NZ are you receiving treatment in?
_________________________
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away

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#166909 - 06/20/13 04:35 PM Re: 9 of 67 nodes affected & extracapsular extension.. [Re: Meli]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1267
Loc: Los Angeles
Meli, although there is some similarity in our situations, yours is more intense (I also had an emergency trache after my ND, but no ECE and no chemo). It looks to me as though you're getting excellent care, and your attitude is terrific.

I wish you all the best. Please keep us posted and ask any questions you can think of. You're far away physically, but you're part of our family.
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

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