#37679 07-18-2004 04:31 PM | Joined: Jan 2003 Posts: 17 Member | OP  Member
Joined: Jan 2003 Posts: 17 | I haven't visited this group since undergoing radiation in Feb/March 03. I was doing great until they found a node in June that is positive. I'd like to know what I should expect from this surgery - recovery, survival, etc. I'm also wondering why they don't check for nodes that are positive before removing all of them as I believe they now do with breast cancer (which I've also had twice, but before they did that checking of nodes). Won't taking all my nodes destroy my ability to filter cancer cells if I get a reoccurrence in my mouth? | | |
#37680 07-18-2004 06:54 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hi NannyGranny -- we have a lot in common... I finished my radiation in January (for tongue cancer) and then they found a positive node in May. I had a radical neck on June 4 and begin another round of radiation tomorrow (along with some chemo this time).
I'm not sure how a "modified" radical neck will be different from my full-scale radical neck. In my surgery, they took out 30 nodes, a muscle (whose name I can't pronounce), some nerves and my jugular vein on that side.
Honestly, the biggest thing that has given me trouble (aside from a swollen throat from the breathing tube they used during the surgery) has been my shoulder and muscles all around it. Since they took out a muscle that connects my shoulder to my neck, everything else is all out of whack... I would ask a lot of questions about that, and if they are taking out the muscle, see about doing range-of-motion exercises as soon as you can. I didn;t do this, and I'm really paying the price now. It hurts almost all the time, sometimes pretty severly...
I have the same questions you do about the lack of nodes on that side and what that means for filtering cancer cells... WIll be interested to see what others say...
As for recovery and survival stuff, it's never a good sign to have the cancer move into your lymph system. But my docs are still using the word "cure" with me... I had one positive node out of the 30 they removed...
Is your positive node within the field of radiation from before? Ask your docs, too, about extra-capsular spread. My lymph node showed this, which shows that the cancer was "busting out" of the node and trying to find a new home. This is a sign of more aggressive cancer...
Best of luck to you in your upcoming surgery... God's blessings to you...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#37681 07-19-2004 03:47 AM | 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 | Hi NannyGranny,
I don't know the answer to your question but I am curious what others may answer, too. I had two positive nodes that showed up initially through the PET/CT scan. I was sure they were and had been seeking out an answer for many months starting with the swelling of the first one. It eventually grew to the size of my thumb and I could see the lump when I looked in the mirror yet I couldn't find anyone that was concerned and didn't know what I know now, unfortunately.
Because they knew my cancer had already spread and I was stage IV, the plan was to give me large doses of field radiation on both sides of my neck and if there was any residual, do the neck dissection then. They spoke of the surgery in October because there is still a lump where the original lymph node was but it has not lit up on the PET/CT scans so the general consensus is no surgery.
Good luck on your surgery and I am praying for comfort and continued healing for you and guidance for your medical team to find the best treatment possible for you.
Ed
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
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#37682 07-19-2004 07:24 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Feb 2004 Posts: 162 | You'll want to verify this and friends correct me if I'm wrong, but I think part of the reason they want to remove so many nodes is that the scans are only good for a tumor no smaller than 2cm. Any smaller and they won't show up. It may be that it's better to remove so many suspected nodes while they have you open than to remove confirmed positive nodes and then risk leaving cancerous nodes and have to go in again or worse: have distant metastatis as a result of leaving undetected positive nodes.
I didn't have surgery, but I did have radiation to "fry" the nodes on both sides of my neck. I don't know how that will affect my ability to "filter" cancer cells in the region. I would be interested in the answer to this if anyone has an opinion.
Anyway, best of luck with your surgery.
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003.
Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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