| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My Drs did the getting approvals and they all do as far as I know,. Be sure 1st thing Monday to call the Drs office and check it out.
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: 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 | Is this at a cancer center? The 3 months sounds like a long time to wait for insurance. My wait was 6 weeks from date of diagnosis to start of treatments. The second time was 10 days after ebing diagnosed I was in surgery. This time, I was able to get a month before I am being treated.
Any thoughts about a second opinion?
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Three months is a long time with an aggressive cancer. I'm reading between the lines here but it sounds like you have a single doctor, perhaps an ENT or Oral Surgeon. The single most important piece of advice I can give you is to submit your case to a Comprehensive Cancer Center (Plenty of them in Calif). Get yourself and your biopsy to one immediately. If you haven't had a biopsy yet that's a really bad sign!! The difference is that a full team of cancer docs, surgeons, chemo, radiation, dental, etc., hold a weekly Tumor Board. They will examine your case and make recommendations. These CCCs see more cases in a year than a single doc might see in a lifetime. If their recommendations jibe with your doc, then good! In my own case, my tongue tumor doubled in size in ten days! The trick to beating this disease is getting to it early and you can see from the responses above that we feel you are being delayed too long. Besides experience with cancer, the CCCs have plenty of experience with insurance companies! http://www.oralcancerfoundation.org/resources/cancer_centers.htm
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | 3 months is outrageous!!! I have never heard of anyone waiting that long. Like the others said..it's time to take charge. I wonder....have any of these people at the insurance and billing departments in the hospitals had cancer?!?!
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 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | You have to be your advocate, & your doctor has to be aggressive. His excuse that it takes 3 months for insurance to come through tells me that he's not treating this seriously enough.
My cancer was small, it didn't show up on a cat scan, & the lab reports were conflicting. But every lab and pathologist urged removal of the lesion. After a second opinion by pathologists at Yale on a 2nd lab report indicated only a "suspicion" of scc, my ent told me in no uncertain terms that I needed surgery immediately (I was hoping to remain in denial.) His words to me: "This is your LIFE you're talking about."
Please get a surgical and/or treatment plan going! This is not elective surgery. It's your LIFE!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Sep 2008 Posts: 15 Member | | Member
Joined: Sep 2008 Posts: 15 | It took me from March 1999 until November 1999 to get a good diagnosis. During this time, in addition to going to various hospitals, I learned all I could about cancer that then gave me the knowledge and strength to be my own case manager. After 10 years with 4 operations I am cancer free. Someone told me that they had never seen a cancer paient with an expiration date stamped on the bottom of their feet. They were just trying to lift my spirits at the time and it worked. | | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Call the insurance company to make sure there is a referral. If they do not have it cal the Dr. s office bakc and make sure they mark it urgent. I have had to get nasty with my insurance company once or twice, but they finally came through.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | 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 | Someone told me that they had never seen a cancer patient with an expiration date stamped on the bottom of their feet.
Very funny, I like that.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | Perhaps David, but I think that my "Use by date" has definitely come and gone. Just not a fresh as I used to be.....
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Know what you mean...pre cancer I was young, post cancer I feel much older than the mere passage of time!! ugh
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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