#97693 06-19-2009 06:53 PM | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Just a quick update. I had my first post tx ct scan last week. I had to wait a full week before my doctors appt to get the results. Man was that nerve racking. I was ok the first couple of days. Reminding myself whatever it is, it is and worrying would not change that. Then the night before my appt. I thought I would jump out of my own skin.
Then I'm at my appt. waiting for my doctor to come in and give me my results. I am in the exam room for almost 45 minutes before he come in. He has never made me wait for anything! I was sure this meant it was bad news and he just didn't want to tell me or he was making sure what he saw/read was fact before he brought me the bad news. I drove myself nuts!
I told my doctor that I hadn't breathed in 3 days and that he didn't help making me wait. He looked up, laughed and said, Amy you should have called me if it were that bad. I was on a conference call! (I could have screamed!)
So long story, but other than one more ulcer, ct scan clean! I am CANCER FREE. PET scan scheduled in 3 months!
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 |
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Hey Amy,, congrats and way to go gal.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Congrats, Amy. It really irks me that so many physicians are so uncaring about getting results to patients as quickly as possible.
In my office, we get a fax before the snail arrives and we call the patient right away. That's the way it should be. My wife had a duodenal biopsy last week, the doctor is on vaction this week and she had to plead to get the partner to look at the report and give the "good" results to her. That really sucks (the pleading part).
Good luck in 3 months with the Pet and bask in the joy of your good news.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Awesome news and boy can we all relate to EXACTLY what you went through with waiting. As a matter of fact, you described it so vividly that I found myself tensing as I read your post!
Great to hear.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Jun 2009 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 64 | That is such wonderful news. Way to go.
I only wish that we were there right now
Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
| | | | | 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 |
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Amy The dread and fear of waiting for first the test and then the results is an experience none of us enjoy. But if you felt this way so strongly, I seriously recommend that you sit down with your doctor and see if he will do an MRI instead of a Pet Scan next. Why?: too many false positives with Pet scans so early after TX and even worse, the anti-litigation language that hot spots could be cancer and that recurrence cannot be totally ruled out. I have gotten so fed up with my false positives and weasel language that I am refusing to get Petscan this time around. My ENT is on board and actually feels that an MRI is better, my RO and MO still favor the Petscan on "general" principles. Luckily I am commander in chief of my treatment so I can overrule this general  Seriously, an ambiguous PETSCAN/CT will really worry you for nothing.
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2008 Posts: 130 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Sep 2008 Posts: 130 | Charm,
Ambiguous PET scan is why my docs wont order one any earilier. It will be 9 mos post tx and 6 mos post rads. They have told me that anything any sooner is too ify. I have read enough post and blogs to understand that. Now the DH, he's all caught up in the PET is the best, and he wont be happy until the PET comes back clean. If I don't convence him that, just because it's more techy doesn't mean it's better. He's going to stoke out, right there in the room! (Boys!) MRI is out of the question for now. I still have a port and a PEG. The ct scan did show that there is a thickening to the epoglottis. This prove the theory of my speech therapist that the problem with swallowing was swelling not nerve damage. I'm not sure if thickening can be corrected. Guess I'll find out when I bring the results to her.
All,
Thanks for the congrats. Believe me, IF I could eat, I would have thrown a block party this weekend. (and if it weren't 110*)
Maybe this fall?
Amy
40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
| | | | | 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 |
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.
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