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#113216 02-26-2010 05:37 PM
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hello everyone, my mom has had neck dissection for 1 cancerous lymph node with extra capsular spread (larynx cancer). this was recurrent stage and she has had rt before, she was told she didn't have a second chance to receive radiation after the neck dissection. How bad is this? Her first pet scan 3 months after ND came out clean. Now she's getting a neck MRI next week and I'm so terrified of what we'll hear. I'm so scared that if it comes back theyre just gonna leave it to palliative treatments, do you think she could have a second surgery option? What are the chances of it coming back?


Mother, 53
SCC of the larynx, stage 1- December 2008
Finished RT- March 2009
PET/CT shows recurrance, 1 lymph node involvement- August 2009
Partial laryngectomy+neck dissection- Sep 2009
1 cancerous lymph node, 1.5 cm, extra capsular spread.
no other treatments after.
PET/CT 12/3/09- CLEAN

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Posts: 8,311
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Lets wait for the next results. No need to put yourself through this until the results are known.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #113293 02-28-2010 03:17 AM
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yes, but that is so difficult to do. I'd just like to hear your input about doing only ND. I wish this got more replies.


Mother, 53
SCC of the larynx, stage 1- December 2008
Finished RT- March 2009
PET/CT shows recurrance, 1 lymph node involvement- August 2009
Partial laryngectomy+neck dissection- Sep 2009
1 cancerous lymph node, 1.5 cm, extra capsular spread.
no other treatments after.
PET/CT 12/3/09- CLEAN

Joined: Feb 2007
Posts: 1,940
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I know we always say knowledge is power,sometimes it can be counterproductive.Knowing too much can cause preemptive anxiety.Part of the success of this disease is having confidence in your doctors.If your problem is that you can't or won't accept what you are being told,then your first option is to get a second or even third opinion.I would imagine that when the lymph node was removed the surgeon had a good view of the surrounding tissues and would have been able to see if there were clear margins or not,and as he has said no RT i guess the answer would have to be the margins were clear.If they weren't then she has other options such as chemo or further RT and further surgery would also be a probable otion.
Bottom line is all this will become clear when the pathology and scans are all looked at together and the doctors have a clearer picture There are two schools of thought here,throw everything but the kitchen sink at it first time,or hold something in reserve for future complications.


Last edited by Cookey; 02-28-2010 05:21 AM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #113301 02-28-2010 12:13 PM
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Zeynepuygun
I am not sure if the treatment protocols and IG-IMRT systems in Istanbul are up to the standards found in major CCC in the States.

I feel knowledge is power but unfortunately, as individuals we will never have enough of it.

Since my doctors don't totally agree, it comes to a team consensus that might at times be the lowest common denominator - therefore I respect them but I try to rigorously question them.

Surgery is curative if the cancer can be excised. Unfortunately with extra-capsular spread the cancer is beyond the confinement of the lymph node and that is not good, but it doesn't mean that surgery alone won't be curative.

This treatment failure is so soon after your Mom's primary treatment that you should ask if this lymph node received any radiation and if so, how much. If possible, post surgical focal radiation (re-radiation) of the tumor bed should be discussed.

Does this treatment center have highly precise IG-IMRT focal radiation/re-radiation expertise and systems (such as Cyberknife and Tomo). I notice how Centers often promote the expertise and technology they have and somewhat discount what they don't, so if you have even a little doubt, research and second opinions can be critical.

Clear surgical margin in cases involving extra-capsular spread and perineural invasion can be misleading due to a much higher probability of undetectable micro-mets to or beyond the tumor bed.



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #113328 03-01-2010 09:09 AM
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Thank you so much for the replies.

Istanbul is pretty advanced with oncology technologies. I believe we have everything available here. Her doctor however told us that she's received full dose RT before therefore it'd give her more harm than anything.

I agree with seeing a second or even a third doctor when you're not fully convinced. The first time she was diagnosed we just stuck with the one doctor because he seemed nice and positive. He told us RT would cure her cancer, no surgery was needed. If she had surgery done before it spread to her lymph nodes, things would've looked different now. I wish i had done some research then, i had just come back from college in the states, and just went along with everything. But how would i even know, RT did have a %95 cure rate for her stage afterall. I should stop eating my brain.

The pathology report reads clear margins, and she had a PET scan 3 months after the surgery which showed no activity. I hope this remains. She's getting a neck MRI tomorrow and i'm shaking from fear. I wish i could help myself and be stronger but it's something coming from inside. My last year has been filled with nothing else but cancer and I am not ready for more. It's heart wrenching to see what she's going through and it kills inside me to empathize.

Thank you so much for the support.


Mother, 53
SCC of the larynx, stage 1- December 2008
Finished RT- March 2009
PET/CT shows recurrance, 1 lymph node involvement- August 2009
Partial laryngectomy+neck dissection- Sep 2009
1 cancerous lymph node, 1.5 cm, extra capsular spread.
no other treatments after.
PET/CT 12/3/09- CLEAN

Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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You really have to be a good daughter to worry about your mom so much and look out for her needs. I admire people that take care of parents. Too many just ignore too much in their parents lives. I am with you 100%.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #113369 03-01-2010 05:59 PM
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Thank you EzJim. Sometimes I don't know if i'm doing the right thing. She wants me to be out and doing things, she can sometimes tell how stressed I am. I wish i could hide it better. Only thing she wants is for me to be happy, that's what she lives for. I've always been kind of a negative person, and I hope she lives long enough to see me change and become a positive person, because I will, if she survives.


Mother, 53
SCC of the larynx, stage 1- December 2008
Finished RT- March 2009
PET/CT shows recurrance, 1 lymph node involvement- August 2009
Partial laryngectomy+neck dissection- Sep 2009
1 cancerous lymph node, 1.5 cm, extra capsular spread.
no other treatments after.
PET/CT 12/3/09- CLEAN

Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
Take a break and go for a day shopping or whatever relaxes you. You do seem stressed by your words. My Mom made me take my family for a day or so to give us a break. But of course maybe she is the one that got the break,, away from me for a day.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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