| Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Having finished treatment 4 months ago, I had my 1st CT scan 2 weeks ago. Follow-up appointments with my ENT showed clear on the scope and clear head/neck on the CT. However, a 2mm node is noted on the chest CT that needs further attention and has me in the 'what if' stage. Since my original PET/CT was done at a different facility, he needs to compare the recent one to the past one to see if this is new or has been there all along. This will take a few days. Even if it is new, he says it's too small to biopsy at this time and we'd re-scan in about 8 weeks to see if there are any changes/etc. I am very comfortable with the hospital/doctors (Mass Eye-Ear/Mass General), but will likely seek a 2nd opinion at Dana Farber if it is a new node.
In the meantime, I am a bit lost as to how to react but would appreciate thoughts/questions that I should be asking. Also wondering if there are any 'gold standards' that would be followed... surgery, chemo, radiation? Which comes first? What chemos are standard for SCC Mets to lung?
Trying to keep busy from going crazy.
Thanks! Nancy
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Nancy, this is very common. Many OC patients will have something light up especially on their first after tx scan. At only 2mm, that is about the smallest the scans will be able to pick up. My doc explained to me that its alittle smaller than a grain of rice. Ive had a tiny spot like this on my lung for the past 4 years. It has not changed at all in that time. When I first found out about the spot, my immediate thoughts were..."thats it, this is whats going to do me in". But after a very long discussion with my doc, I learned alot of info and eventually I was able to ignore the whole situation. Sometimes a spot is just that... a spot. There have been others here who have had these things pop up after tx as well and they were like mine, no changes in it for several years. I hope that will help to ease your fears.
Just remember..... its not cancer til the biopsy says it is.
Best wishes!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | 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 | Nancy, my first post Tx scan came at 3 months and I had 2 spots in my lung "that can not be excluded." RO said not to worry, YEAH RIGHT. MY 2nd scan was at 6 months and those 2 spots had cleared but another 2 showed up that weren't there the first time. RO said not to worry, YEAH RIGHT. I had my 3rd and final scan 9 months post and finally got an all clear. Then I didn't worry.
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: Jan 2013 Posts: 80 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Thanks, Christine and Dave. My logical side tells me to keep calm and not become obsessed with this (yet), but my emotional side is working overtime to take control. I appreciate your responses and experiences to help keep me in balance.
Best,
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I hear you - my RO's assistant scared the crap out of me when I was in treatment over a scan I'd had -i was terrified all logic shot - it was 18 mos out before my family dr, compared my original scan and the one in question and told me both were clear. Ass hat! Believe you are okay and live life like it. Hugs
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
| | | | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Hi,
Just a quick update that my recent lung CT no longer showed the 2mm node that was identified in July. The doctors and several here had advised in July that it could be any number of things and as Christine said - sometimes a spot is just a spot. Thankfully it clear (could have been an infection or radiation inflammation, etc). So... all clear and back to regular visits every two months.
Thanks to all, Nancy
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats Nancy!!!! Im so happy that it was nothing serious. Now arent you glad you didnt spend every day of the last few months on the edge of your seat worrying about "what if"?
Best wishes with your continued recovery. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Great news, Nancy What a relief.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | That's soo great!!!!
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
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Nancy, it's wonderful news. We are so happy for you.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | |
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