| | Joined: May 2009 Posts: 113 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | As you all know I have been on here telling you my story the entire way thru. Well I am 1 month out of radiation and doing great! Most of my taste is back, I am eating fairly well, my energy level is great and I feel really good. My throat is still extremely sore and I am still on Pain meds every 4 hours but for the most part doing great! As I posted awhile ago I noticed a node on the right side (opposite of my primary) of my neck a little hardened and swollen. I brought it to the attention of my RO's Nurse, she said oh thats just irritation from the radiation dont worry about it. Then she got my RO he felt around and said the same exact thing dont worry about it, its small and he kept saying he feels a good pulse (whatever that means) then a week later I had a follow up with my ENT he looked and said yea its sub-centimeter and cancer doesnt spread laterally especially during radiation dont worry about it. Well that was around week 3-4 of radiation and here I am 1 month out and it is still there. I had an appt with both of them last week letting them know it is still there....they both pretty much shrugged it off again saying its just inflamation from the radiation and it might never go down but put me on an anitbiotic for 14 days for that and the fact that I was still hacking up thick green mucous throughout the day. Well 2 days into taking the meds my neck on the right side became sore to touch, its kind of weird its not right under my jaw line where the swollen node is it is lower about halfway down my throat/neck. The top part of the node doesnt hurt but the bottom half does and below. So I sent my RO an email this morning. His nurse calls me at 1030am and says I am setting you up a CT scan at 12:30 today. My reply was I guess he is worried now! She says hes not worried its the fact that you are so worried and that it is bothering you so much that he wants to take a look at it and have my ENT look at it. I am hoping for the best but like I have been telling my wife all along just like I did for my left side I know what it is, this is dejavu all over again. I will keep you all informed on what the doctors say, I really dont know how much a CT will show them and I know I cannot do a PET this early out of radiation. For the first time in my life I hope I am WRONG!!!!
30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Good luck today Jim! I'm sure its just swelling and scar tissue. My neck was sore and still for about 1.5 years. It gets better all the time. Hang in there. K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Jim, I hope everything is "clear" and it is just swelling and radiation damage. Not sure how good a CT Scan is going to be this soon as you still have lots of swelling and stuff going on from the radiation. John had a CT Scan 1 month after treatment and it was unclear because of all the effects of the radiation. He is now 5 months out of treatment and his CT Scan last month was clear. I'll be praying for you.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
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.
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Hi Jim,
I'm hoping you're wrong too. Just remember...radiation is the gift that keeps on giving. My husband Ron is 5 year's cancer free and there were quite a few times he would wake up to find some new "lump" in his throat. Needless to say it would freak him out and he was sure the cancer had come back. It hadn't. He would have it checked out and they would tell him its scar tissue. You're only 1 month out of treatment. Your body has just started the healing process.
Hang in there,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: May 2009 Posts: 113 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: May 2009 Posts: 113 | I just received the phone call from my RO. He told me that all is good! Said I have a node on the right side that is a little large, however when I did my PET and CT scan in april that node was there then and did not light up on the PET like the one on the left side and has not gotten any bigger since. I have lost a good 35 lbs since that scan was done so maybe losing all that weight around my neck is allowing me to feel it now. He said it was all good news however he of course wants to order another PET and CT at the end of december saying that it is still to early to have a PET right now. But said that most likely if it was a positive node that it would without a doubt have grown or gotten disfigured within the past 5 months. So that is a bit of relief, of course I wont be 100% convinced till I have that PET scan in Dec or it somehow someway completely goes away! Thanks for your support
30 yr old M non-smoker (stuborn ass italian)
SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09
Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread)
Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo
"On the long road to recovery 1 step at a time"
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Why haven't they just done a FNA and be done with it?
P.S. I reminded you this am of our Rule #1....It's not cancer until they say so.
See you got all worked up over nothing!!
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.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Well that is good news. Does he say why it hurts? Take a deep breath. December is not that far away. Just keep an eye on it. He obviously doesn't think you habve anything to worry about or he would probably do a fine needle or surgical biopsy on it. Glad your recovery is going well.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | It would be hard for a Dr to tell you why it hurts, We all feel pain in different ways and from different things imagination plays a big part in this.Good luck Jim and maybe now you are relaxed a little.
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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