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Joined: May 2013
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Meli Offline OP
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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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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
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






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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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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
All the details, join at http://beatdown.cognacom.com
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Also effective is brachytherapy as a boost, followed by Chemooradiation.


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: May 2013
Posts: 63
Meli Offline OP
"OCF Kiwi Down Under"
Supporting Member (50+ posts)
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Posts: 63
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
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
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Joined: Jul 2011
Posts: 945
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, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: May 2013
Posts: 63
Meli Offline OP
"OCF Kiwi Down Under"
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Joined: May 2013
Posts: 63
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
Joined: Sep 2012
Posts: 145
"OCF Down Under"
Senior Member (100+ posts)
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Posts: 145
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
Joined: Jul 2009
Posts: 1,406
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Joined: Jul 2009
Posts: 1,406
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 III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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