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Hello to all. My name is Rod and I live in the NW. Having just found this site and am a newbie this site is a Godsend, for lack of a better term, in getting some guidance and advice. I am not up to speed on all the medical terminology so bear with me that I'm not being too descriptive other than my own layman's terms. I was diagnosed with SCC (squamous carcinoma of the maxilla) in December of 2015 in my upper gum from an apparent abscess around an upper tooth. I underwent an 8-hour surgery resulting in a bone and tissue graft being taken from my lower left leg to fill in the void due to bone loss after the surgery. According to my head surgeon he stated the type of cancer I had only 5% of people who get cancer get this type. It doesn't spread to other parts of the body and is slow-growing. There's a specific medical term for it's type but the name escapes me.

In a nutshell, I had my initial surgery in December 2015, underwent 30 radiation treatments in March and April of 2016 and had a second surgery to remove a plate and screws that were put in my upper gum during my initial December 2015 surgery in January 2017. There is so much information I could put in this initial post that I'll waylay that for now but I really haven't healed as yet from my January 2017 surgery. I was told it would take 4-6 months but it's not even close. The surgeon who did my January 2017 surgery went through my nose (nostrils) to remove this plate. While I initially felt fine after my January surgery for maybe a week or two afterwards, all heck broke loose after that. I've experienced constant facial swelling on the left side of my face and nose area including nerve and muscle tone loss in that area, loss of saliva gland function which was the result of the radiation and have lost most of my upper teeth directly due to the initial surgery, not that they were decayed or bad prior to the surgery or were lost due to the radiation afterwards. As I've read throughout the forums here everyone heals at their own rate and in their own way, nobody reacting to such trauma in the same way or at the same speed. It sounds like I just have to be patient and let nature take it's course.

Not wanting to add insult to injury I have been putting off getting teeth until I healed after my second surgery but it appears my healing won't happen overnight thus I'm proceeding in trying to get my Medicare insurance to cover at least part of my teeth replacement. However, from what I've read that seems to be next to an impossibility. I'm aware this isn't the proper forum to dwell on this issue but that's where I'm at at this point and time. I know there's a forum here directly related to insurance that I'll be active on but, from what I've read if there's anything positive in getting any financial help for teeth replacement due to cancer from insurance, it isn't too encouraging.

I do have to ask if there is any current lobbying for folks like us who have lost something as essential and necessary as teeth and may need financial assistance/coverage for replacement? I did read where there are a few bills in Congress specific to that. It seems so ironic that something so essential as teeth isn't covered to have any quality of life where other procedures in regards to 'parts' replacement due to cancer are covered and, in some cases, are more or less for appearance and aesthetic value only.

I'll try in the future to be more specific to topic and not quite so scattered in my thoughts. To say this entire ordeal has been overwhelming for information overload is an understatement. Looking forward to learning more from all of you on this site.

Rod

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Hi Rod, welcome to OCF! Its always great having fellow survivors join our ranks.

Your surgeon said only 5% of head and neck cancers are similar to yours? Our group is the largest online oral cancer support group, we do have members who have had similar diagnosis. Most of us have had the SCC type of cancer. There are also a few with ACC and MCC which are the rarer types of cancer. Oral cancer (OC) or head and neck cancer (HN) currently has a total of about 50,000 new cases this year. Thats for the entire US which is not very many. Im sorry but Im not the biggest numbers person. Ive somehow been fortunate enough to survive some pretty serious situations surprising my doctors and beating the odds.

I would be surprised if you reported your surgery had healed. After having radiation to an area, the ability to heal has been compromised. Being only 10 months post surgery your body has huge hurdles to go thru to heal in a radiated area. In that situation Id say only 5% may have mostly healed. It would be a big stretch to say a max of 10% of patients would report better healing results than you. Next time you see your doc, ask about increasing your protein intake to help speed your healing. You should also ask about if HBO (hyperbaric oxygen treatments) would help you to recover better. You said you lost more teeth after rads but didnt mention how they were lost. Did you have extractions done after rads? If so then you probably should have done The Marx Protocol (20 HBO dives before and 10 after and extraction). HBO is where you go into a glass tube (or a larger multi person tank) and breathe pressurized oxygen. There have been debates as to the helpfulness of HBO. Ive had more dives than I'd like to remember and can attest to their healing powers.

You'll get the hang of our site easily. Ive sent you a PM (private message) with a link that addresses the key points newer members need help with. Look for a tiny flashing envelope next to your "My Stuff" tab above. Click on that or if you dont have a flashing envelope and want to go back to reread any PMs, click on "My Stuff" then on the drop down menu click on private messages (middle of drop down menu). If you spend some time reading the link I sent it will help you to quickly learn the ins and outs of our site. Adding a signature is an important step to helping us to get to know you and it helps us to better help you with our replies tailored more towards your specific situation so please add one fairly soon. The link includes a list of abbreviations where you can easily pick up the lingo we use around here. I never in my life expected to know all the medical terms Ive picked up ober the past 10 years.

As far as lobbying for change to include dental work post rads for cancer patients, thats been a hot topic for many of us. Its also a touchy subject here as we pride ourselves in being very diverse with members of all sizes, shapes, colors, religious beliefs, political affiliations, languages, etc. Our site is NOT the place to talk about politics, government, religion, etc. More details are in the link I sent you.

Thanks for joining our group! We're like one huge extended family around here smile


Christine
SCC 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 smile
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Thanks, Christine, for a very informational reply. It has told me a lot more about what I'm dealing with.

As to the 5% figure I mentioned for the type of cancer I had that came from my head surgeon at OHSU (Oregon Health and Science University) in Portland, Oregon. Until I discovered OCS I was on my own for information and most if not all of that information came from physicians, not patients or survivors. I was only stating what I had heard and apparently coming from a very limited resource. Coming in contact now with current patients and survivors on OCS speaks a lot louder than what any physician might have to say. There's a very definite reality coming from those on this forum.

As to my healing what you say makes a lot of sense. Having undergone two surgeries plus radiation within the span of a little over a year would take it's toll on a body. While I am seeing the doctor who did my last surgery every two months as follow up (10/6/17 is my next visit) I did see a physical therapist throughout the month of August who stated my body had seen so much trauma that it was difficult for it to heal itself, at least right away. That (apparently) was why I'm seeing little for improvement at this stage. There was extensive nerve damage and facial muscle tension degradation from the two surgeries and the radiation including the removal of lymph nodes in my neck as a preventative measure. Hearing that healing is taking a lot longer than I expected is encouraging considering the 'whys' that it takes so long.

My teeth loss was directly related to and during my initial December 2015 surgery, not being removed prior to the surgery or afterwards relating to the radiation treatments. During the initial surgery the head surgeon said the cancerous area was much larger than he had anticipated so the removal of additional teeth was necessary. I currently have 3 teeth left in my upper gum. As a side note I had a CT scan done in August of 2016 and there were no signs of any cancer either in my mouth area or throughout my body so at this point I'm in recovery mode.

Regarding the lobbying for insurance change I was more or less referring to the Women's Health Rights & Cancer Act passed in 1998 referencing breast cancer and just wondered if there were any groups working in our behalf to assist us with financial help. I learned long ago to not debate religion or politics as those topics are individual preferences so I won't go there. However, if something directly impacts my life such as cancer and I may need financial help in some way I will research it to an extent to find out what's happening, if anything. But I won't step on anyone's toes on either of those topics in the process.

I'll certainly be asking my doctor about protein intake and the HBO procedure. I'm glad to be a part of this newly-found community, something I definitely need for guidance, support and advice since up to now I've felt more like a ship without a sail or a compass. Thanks again!

Rod

Joined: Jun 2007
Posts: 10,507
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OC survivors need definite help with getting dental work approved by their insurance companies. To me, its disgusting how teeth can be removed but no effort at all is made to give back anything to help people eat, smile, etc. Breast cancer survivors are somewhat luckier when it comes to being made whole again. They can get breast implants when they lose a breast or 2 to cancer. Us OC patients arent quite as lucky, no such thing exists to give us back the teeth we lose to OC and its treatments. Ive lost all of my teeth from radiation damage and I know I will never get even one tooth replaced. I also have other ailments (trismus-- restricted mouth opening) that prevent me from ever being able to even get a mold made for teeth. Ive seen many US patients argue to no avail with their insurance companies about tooth replacement. Its a very rare occasion to see an OC survivor who has successfully managed to get their new teeth covered by their insurance even after multiple appeals. I think we can all agree the US health care system leaves much to be desired.

Im glad to hear you have an upcoming appointment with your doc on the 6th. Please let me know how you make out when asking about HBO and higher protein intake. Usually most patients need at least 2500 calories and 48-64 oz of water for at least the first year (sometimes 2 years) after surgeries or finishing their radiation treatments. After going thru so much the body needs higher calories and protein to rebuild itself. Many patients have found even taking in 3500 calories daily is not too much when in the recovery phase. Treatments and rebuilding their body saps the calories at a much higher rate than most patients expect. At one point I was taking in 7000+ calories most days of the week and didnt gain an ounce because my body was so depleted during treatments. I was shocked I never gained an ounce but my doc explained with so much rebuilding going on it takes many., many more calories than what I needed pre-cancer/treatments. Many patients find its years before they gain any weight. Its similar to athletes in training, they burn up tons of calories every single day and can take in 5000, 10000 calories a day without ever seeing any weight gain. I remember it was a good 5 years post rads/surgeries when I finally began to gain a couple pounds. That was when I knew I was finally recovered.

If you have questions please dont hesitate to ask. We'll try our best to always help you with accurate and up to date medical info and support.


Christine
SCC 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 smile
Joined: Oct 2017
Posts: 4
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Posts: 4
Thanks again, Christine. You're one tough gal to have been through so much as you have. You're a great example to us all. It certainly builds the intestinal fortitude in someone.

Yes, it's pitiful that a woman can have her breast(s) replaced for (almost) purely aesthetic and appearance reasons but something so important as having teeth to even eat properly isn't replaced by insurance. There's a lot wrong with that picture, and, as you said, our medical system in this county REALLY needs some help when it comes to some common sense and fairness. I'm certainly not implying what a woman goes through with breast cancer is any less terrible than what we've been through but only that they've gotten some help along the way. I don't exactly look like Elvis (not that I ever did) but there's an appearance factor in there for us as well. I will be formulating a thread to start in the insurance forum on writing a convincing and persuasive letter to an insurance company as I've researched it fairly deeply. Hopefully it will be beneficial to those at this stage of their cancer. I'm no letter-writing guru but I'll give it my best shot considering first impressions are usually lasting impressions. I know it will be liking spitting into the wind to even try and while I do have the option of financing I'm sure going to try the insurance route first. My head surgeon did tell me he has had some of his patients ultimately have some success with their insurance companies paying something toward teeth replacement although he made it clear it wasn't an amount anywhere near of what they'd normally pay for a normal, covered procedure. I do have an original letter written by my head surgeon in my behalf to submit along with my cover letter so that'll be a plus when I'm ready to initially approach my insurance company. Whether it does much good is quite another story altogether. 1) The fact that a woman can have breast replacement for appearance reasons only and is an 'unnecessary' procedure (as set by their OWN policy) and 2) the fact *my* appearance has also been compromised just as much as a woman's is with breast loss may be a bargaining chip in the first appeal letter after their initial denial of coverage. I won't be putting all my eggs in one basket first time around but will save some ammunition for later appeal letters. I'm trying to be optimistic but I will expect a denial initially.

In all the physicians I've dealt with not one has brought up the emotional and physcological (sp?) impact cancer can have on someone long term, let alone the fighting off of depression. While they most likely aren't trained in that part of a person acquiring cancer they probably should be. There's much more to it than just the physical aspect. It seems the cancer patient is left to their own devices in dealing with that.

I, too, have the trismus, restricted mouth opening, issue. My physical therapist said I have about 50% of what a normal person might have in opening my mouth wide. I was given some exercises to do right after my initial surgery in 2015 from a speech therapist to help stretch the mouth open and in time some of that mobility may be recovered. My weight for years was normally 240-245 as I'm a tall man at 6'4" with a heavy frame and an average body. Right after my first surgery I dropped to 188, however, I gained that weight back in a matter of 3-4 months. I was a walking bonerack. Of course I felt ok even at 188 but I looked like I shouldn't even be breathing.

I can see I have a long road ahead of me yet but I refuse to let this defeat me. Just won't happen. I'll certainly use OCS as a valuable resource. Thanks again for your insight and your experiences. You have really opened my eyes to many things.

Rod

Joined: Jun 2007
Posts: 10,507
Likes: 6
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One tip to helping you to get the insurance company to see things your way... start getting doctors to write letters stating the medical necessity of getting dentures, bridge, implants (usually most OC patients arent able to get implants), etc. The more doctors behind you the better so ask every single one you have appointments with and send the letters in with your appeals. Plus at your appointment ask the doc if they are willing if you get denied (99% odds you will get denied) to write another follow up letter directly to the insurance company seperate from your appeal and doctor letters. Sometimes if doctors (must be on their letterhead too) initiate writing their own appeal letters besides what you are doing it pulls some extra weight in swaying the insurance company. The more people you have on your side who will speak up for you the better. You just never know, keep asking until you have no more appeals left.

Good luck!!!!


Christine
SCC 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 smile
Joined: Feb 2015
Posts: 133
Likes: 7
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Joined: Feb 2015
Posts: 133
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Rod: I see "retired" in your profile. If this indicates that you are on Medicare, that may be an issue. I have Medicare with Blue Cross to cover the "rest", but if Medicare does not cover something such as teeth, Blue Cross doesn't either. I believe the extraction was paid for to some degree but I was on my own for portable teeth. I found it a bit of a catch 22 since my dentist is not a Medicare provider, this led to a series of dead ends. Good luck. Tom


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
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Hi Rod,

As mentioned, Original Medicare doesn't cover dental, but an Advantage Plan may have some type of coverage for basics, and some supplemental plans have an option for obtaining basic dental and vision, which didn't suit my needs.,

I've read in August there is a proposal to have dental, vision and hearing covered by Medicare, but I would assume that being basic too, and who knows when.

Medicare does cover dental in order to have radiation treatment, but not afterwards. I've had all my teeth, 28, removed in 2013 as a result from radiation, which was not covered. My oral surgeon or hospital didn't charge me, but the anesthesiologist did; $6,000

Due to cancer, jaw issues and a few others, my plan dentures have been delayed, and i may not be a candidate for implants due to all the prior radiation, over 200Gy I had to the same left side I ORN
. Even with dentures I would have to be careful.

Ironically, Medicaid does cover dental and other treatments, if that's an option. Sometimes you can buy into Medicaid by giving up a portion of your income called a spend down.

Some local hospitals have dental clinics, and low cost on a slide scsle, and payment plans. Dental schools can be an option, and have looked into clinical trials, but my search was haphazard as my denture or implants weren't in the near future.

Other sites I heard of for dental assistance or info are Tooth Wisdom, Dental Lifeline Network, and United Way.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Thanks, Tom and Paul, for your comments. Yes, I am retired and went on Medicare in 2012 when I hit 65. I have to say I'm certainly not complaining as to what my Medicare has paid to this point for my SCC treatments. While I have had some out of pocket expenses they weren't anything I couldn't handle. At last tabulation the total cost of everything is just over $300,000. In reading through this forum what it cost for my ordeal wasn't near as bad as others have been through financially.

I have to point out I wouldn't consider myself a hard luck case living from hand to mouth in trying to get insurance to pay anything for dental replacements. I'm certainly not rich but live on a comfortable retirement income. However, to ultimately have to finance getting my dental needs done is something I may have to face I'm going the insurance route first. I really don't want an additional bill to pay each month living on a fixed income.

I have contacted 5 of the doctors through e-mails/postal mail who were involved with my treatment and have received so far 2 letters from a few in helping to build my case. Whether it will do much good is yet to be seen. I've also researched writing a convincing, persuasive cover letter to include along with the doctor's letters. Once I get a format down in a cover letter I may post what I put together in the insurance section of this forum in the hopes it may help someone else. I know there are no guarantees and realize it's like spitting against the wind in getting any financial compensation from Medicare for teeth replacement, however, nothing ventured, nothing gained. Other than my time and effort it's not costing anything to approach my supplemental carrier. My head surgeon did tell me some of his patients have had some success in getting dental work paid for but it wasn't near what is paid for with a normally covered procedure. So while there may be a light at the end of the tunnel it's still fairly dim as yet.

I'm glad to have found this website.

Rod


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