| Joined: May 2013 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | OP "OCF Kiwi Down Under" Supporting Member (50+ posts) Joined: May 2013 Posts: 63 | 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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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
| | | | 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 | 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!
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
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | 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 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | 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 "OCF Kiwi Down Under" Supporting Member (50+ posts) | OP "OCF Kiwi Down Under" Supporting Member (50+ posts) Joined: May 2013 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) | "Above & Beyond" Member (500+ posts) 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 "OCF Kiwi Down Under" Supporting Member (50+ posts) | OP "OCF Kiwi Down Under" Supporting Member (50+ posts) 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) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 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 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) 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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