| | Joined: Feb 2010 Posts: 2 Member | OP  Member
Joined: Feb 2010 Posts: 2 | Hello everyone, I have been dealing with SCC since 2000. Currently I have had 3 surgeries and almost monthly lasering of removal of leukoplakia on my tongue. I do not "qualify" for treatment. I have had a 2nd opinion but am not satisified with just waiting around. He suggests I look into a "trial" treatment? Is anyone else having to deal with the leukoplakia removal and/or NOT receiving treatment?
Am I to remain complacent with this?
I have 4 children, one grandson and the man of my dreams! I will not loose out on their lives!!!
1st diagnosis 1997 SCC; surgically removed; no treatment; continual removal of leukoplakia; 2nd diagnosis 2009 SCC stage 1; more intense/surgically removed; no treatment; 12/2010: had Alloderm treatment (skin graft) done on over 1/2 my tongue; Still dealing with scar tissue.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | No don't be complacent with this. And why a trail ? Get on someones back and use your spurs to urge them to ,move their butts for you.
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 | Have you been seen at a cancer center? Surgeons cut, a cancer center will evaluate all avenues of treatment.
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: Feb 2010 Posts: 2 Member | | OP Member
Joined: Feb 2010 Posts: 2 | I apologize for not getting on in a while. My husband has been sick.
No I have not been to a cancer center tho I am looking into visiting one soon. I am not sure if I need to have a dr referral or if I should just call and set up an appt. How about the insurance? Will they pay at all? I just don't want to mess up my insurance and end up with MAJOR bills...
1st diagnosis 1997 SCC; surgically removed; no treatment; continual removal of leukoplakia; 2nd diagnosis 2009 SCC stage 1; more intense/surgically removed; no treatment; 12/2010: had Alloderm treatment (skin graft) done on over 1/2 my tongue; Still dealing with scar tissue.
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Whether or not you need a referral depends on your insurance. Also, what is covered and what they pay depends on your insurance.
I scheduled my own appointment at more than one cancer center (my insurance doesn�t require a referral). When you call to schedule an appointment they will ask what insurance you have and if they accept it.
I think it is time for another opinion. It is your life and you need to act on your instincts. I wish you the best.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | 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 | If concerned about your insurance, call them. The insurance company will help you by letting you know if a referral is necessary. Dont waste anymore time, check it out and get to a cancer center.
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 | The advice to be seen by a Cancer Center is good. The reason you don't "qualify" for further treatment may be that your Doc doesn't feel extreme treatments like radiation or chemo will do enough good to warrant the side effects. A Cancer Center will look at your case from all aspects.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I got stuck with quite a few thousand dollars of debt to the Hospital. But they have to accept even a $5 payment if it's an honest effort. I pay Ohio State $20 on a bill over $10,000 and they were nice about the arrangement. I also have 2 other Hospitals I pay less . They are nice about it.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There is no interest either.
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: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hi tw - Your case sounds similar to my husband's. He also has been dealing with SCCs since 2002 and has also had 3 (plus) surgeries to remove small cancers but never had radiation or chemo. He also has had laser treatment on his lichen planus/leukoplakia, but just once and that seemed to get rid of most of it. He has had good check-ups since then altho there is always something his doctor is watching (Shands, Gainesville, Florida) and categorizes these as lichenoids which will have to be monitored the rest of his life. Hope this helps some - questions or comparisons, just ask.
Last edited by Lostpassword; 02-28-2010 04:10 PM.
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
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