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#190824 09-28-2015 01:39 PM
Joined: Sep 2015
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Joined: Sep 2015
Posts: 1
Hi - I joined this forum because we're both feeling very overwhelmed right now. He had surgery last year and clear margins, no need for any additional treatment except follow up. He'd been feeling ill with some type of virus so when the CT scan showed enlarged lymph gland, we weren't terribly worried. The doctor ordered a biopsy which I thought was a waste of time and money but it turned out the cancer was in that lymph gland which was a horrible surprise to us both. Surgery 10 days ago removed 46 different lymph glands in a neck dissection and the doctor could not cut everything out because it was on the carotid artery. So he peeled it out and it took 5 hours. John is feeling better all the time but now has to start the radiation/chemo portion which is horrifying with all of the side effects and potential problems.
So I plan to use this forum to get answers to my questions, see other people and how they are dealing with things and in general, have someone to talk to who understands what we're going through. Thank you all in advance for your support.
Cindy


Spouse had 4 molars removed with tumor 10/14
Found cancer in lymph node so 46 lymph nodes removed 9/15
About to start chemo/ radiation.
We're both scared and wish things were back to normal!
Cindy
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hello Cindy, I know that this is a very scary time for you both and I am sorry that this has happened to you. Radiation and chemo can be very tough, but , it is also doable. Christine should be along shortly to tell you the radiation basics of high calorie, high fluid intake and keep swallowing. So, I will leave that to her.
Keep coming back here for support. Ask any questions you need answering, someone will have had the same or a similar experience and will have good advice for you.
You will both get through this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there... this is not an uncommon occurrence when dealing with this cancer. Sadly some drs only remove the effected areas and don't do a prophylactic partial neck dissection. The reality is that a lot of the time the cancer is hiding in the nodes and isn't detected on a scan because it's too small.

Thankfully he's had the dissection now. the carotid involvement is unfortunate but a few people here (PAULB) have had that issue as well. Rads and chemo is not fun but as someone else said. it is doable. Just read up on what to expect and plan for the worst and hope for the best.

Hugs and welcome and so sorry you are going through this again.



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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