#69210 02-03-2008 10:34 AM | Joined: Feb 2008 Posts: 16 Member | OP  Member
Joined: Feb 2008 Posts: 16 | Hi Everyone - My name is Lisa, and I'm 43 years old, nonsmoker, social drinker, diagnosed with squamous cell carcinoma, stage 1, unknown primary, suspected nasopharyngeal metastatic to lymph nodes, on August 14, 2007. I had emergent surgery for an infected cyst on my neck and was diagnosed 3 days later. I then had extensive surgery for tonsillectomy, lymph node removal, and biopsies of many areas throughout my oropharynx/nasopharynx, on August 31st. I started IMRT radiation 6 weeks later, for a total of 6 weeks, finishing November 26th. I am now almost 3 months out and will have a CT scan soon hopefully revealing good news!
Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Lisa. I'm glad they caught it early.. Lets just hope and pray you kicked it's butt already.
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
| | | | | Joined: Feb 2008 Posts: 16 Member | | OP Member
Joined: Feb 2008 Posts: 16 | Thanks so much Jim! That's what I'm counting on! Even though I have cancer, I still consider myself very blessed to be where I am today.
Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Well done Lisa for coming this far--and for now being willing to share your story with us.
Hoping to hear more from you,
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Brenda, I enjoy your daughters post. I bet she takes after her mother. Hopin u feel better today. Bad one for me.
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
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Hi Lisa! Crossing my fingers for a clean scan for you!
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | 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 | Lisa, Where were you treated? Did they test you for HPV? How are you doing? Don't be to concerned if the first or even second post Tx scan shows some areas worth watching. It's usually inflammation and resolves itself within a short period. This will be a great site that will answer many of your recovery questions. Glad you found it.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2008 Posts: 16 Member | | OP Member
Joined: Feb 2008 Posts: 16 | Hi Everyone - Thanks for all of your replies. They did test me for HPV, and it was suspected to be positive but I haven't found out the subtype yet. I'm actually doing quite well at this point, am back to work 3/4 time, and the only problem I really have is getting comfortable enough to get sleep at night.
Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | What trouble do you have sleeping?
You might want to add the Nov finishing date to your signature line as it tells us where you are in the recovery period.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2008 Posts: 16 Member | | OP Member
Joined: Feb 2008 Posts: 16 | I just can't seem to get in a comfortable position because of my neck. I'm a side sleeper. My physical therapist recommended a wedge, but that doesn't seem to be helping because I have a hard time sleeping on my back, even if it is reclined. I'll get more ideas from her tomorrow. Thanks for the tip on my IMRT finish date. I'll add that.
Lisa - Diagnosed 8/14/07 with Stage 1 metastatic squamous cell carcinoma, unknown primary, most likely nasopharyngeal, status post 2 surgeries, completing 6 weeks IMRT radiation on 11/26/07.
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