| | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Claire,
I'm surprised Davidcpa has replied to this. Why are they recommending a neck dissection for a T1N0M0? Are you being treated at CCC? I would seek a second opinion on the necessity of having the neck dissection unless there have suspected lymph node activity on a scan or can feel it. This surgery can have permanent side effects.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2011 Posts: 5 Member | | OP Member
Joined: Feb 2011 Posts: 5 | I am being treated at a CCC. From the sounds of it they are taking out the lymph nodes despite having nothing showing on the scans because they considered the risk high enough that it may have spread and also that it takes a certain size/amount for things to show up on scans. They also said my age played into it a bit in that if I was older they might not take out the lymph nodes but since I'm younger they'd rather be sure they have everything out. But in the end I really don't want to be wondering if it's in my lymph nodes or not for the next 5 years.
While there are side effects associated the surgery as far as nerve damage when I asked what percent of his patients ended up with those side effects he said there weren't enough to warrant a percent. So while thats no guarantee that something won't happen it made me feel a bit better about having them taken out.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Are they recommending radiation in addition to the neck dissection or are you skipping that bullet?
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Feb 2011 Posts: 5 Member | | OP Member
Joined: Feb 2011 Posts: 5 | No radiation.
Sounded like radiation can usually only be done once and they think they can take care of this surgically especially since it doesn't seem to have spread anywhere. Then if there is recurrence or I get some other ailment later in life that might require radiation it would still be an option. | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | No radiation is a good thing...that's for sure. I dodged that bullet too. Of course only because they want to have that to use in the future if needed.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Claire, adding my welcome. I'm glad to read that you won't need to go through radiation. Whew! Wishing you the very best in your surgery. Please keep us informed.
David 2
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
| | | | | | KevinTN Unregistered | | KevinTN Unregistered
| Hi all:
I'm Kevin and just got the bad news yesterday. 2cm SCC, floor of my mouth. I felt like I burned it with hot food a couple weeks ago, but it didn't go away, so I saw a specialist immediately (E,N&T).
So anyway, here I go...stressing, though not worried about me, just my wife.
Best to all,
Kevin in TN | | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hello Kevin:
Welcome, I guess, but this is the most wonderful place ever to get information concerning your type cancer and treatment options others have experienced. You immediately went on my prayer list, and I wish you the best in your journey to a clean bill of health. Others will respond when they see your message on the Forum and you will be given all kinds of good information. So, welcome because of that, and "I guess" because I hate anyone having to face the battle.
juliann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Kevin,
Welcome to OCF...you have found a wonderful group of people. Can you start your own thread so all posts will be for you? Go to any forum that you wish to post under and under "topic options" you will see "new topic" "Introduce Yourself" is usually the best place to start. We are here to help you...
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | I am so glad you caught yours so early. I wasn't so lucky, but my surgery for my tongue was much bigger then it sounds like urs will be. I had half my tongue removed, and neck dissection.
Every one is different, I am almost a year out, and still have tightness in chin/neck area from neck dissection, but i also had an infection in it before i left the hospital. Mine was also much more major then yours, and i had radiation. so a lot of the things i feel may not fit to yours.
I know this is scary, but you are so lucky to have this caught so soon!
I wish you luck with your upcoming surgery, you will be in my thoughts and hope for a fast recovery for you!!!
I will say this, I know that no matter how major of a surgery this is or how minor, the word cancer at our age is very scary, I am probably 2 years younger then you. All we can really do is try to stay as positive as possible and appreciate what we can do after surgery, except any possible changes as the new normal, and just be greatful to be alive and able to continue on with our lives!
If you need anyone to talk to, or would like to talk, I am here. I like you, had no children, but I did have my boyfriend and my mom, dad and bro that were amazing support through this all!
I hope you have a great support team as well! If not, this group of people is amazing and helped me so much during my treatment!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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