Depression

cbeaz4626

All throughout my treament (and before) for SCC of the tongue what I heard was you have to be positive thats 1/2 the battle.  I had 3 surgeries, partial glossectomy (1/2 of my tongue replaced by a skin graft from my arm), a trach tube, neck disection and lymphnodes removed, powered through a major infection at the site of one of the skin grafts, and had all of my teeth removed.  Remarkably during the majority of that my attitude was good.  I was in fight mode all the way.  Geared up for chemo and radiation, completed it.  As most of you know side effects from paticilarly the radiation are brutal but I did it.  I got through it.  I completed all of that in late August.  Still lots of lingering side effects hanging around but I noticed in November that I did't feel right.  I felt overly sensitive, down, not looking forward to things, cry at the drop of a hat, needy and generally not hopeful.  I have not been able to shake it.  I am trying to fight my insurance company to get teeth and so far they refuse to pay for them.  Everything is different from what I knew before.  I can't eat right, mostly soft stuff and its difficult to swallow, when I sing I sound like sylvester the cat, I dont like talkin to people because I have no teeth where previously I was a social butterfly........There is just so much that is different and I am angry and absolutely down and depressed.  Did any of you go through this?  I'm usually a happy person but not lately.  I try and put on a brave face but I'm struggling

CivilMatt

I feel your pain

4626,

You have been through a lot with any one of your battle wounds being enough to kick the heck out of your psyche.  With so much at hand I would think to go after a small portion at a time and to seriously look at meds to help out. 

            “I don’t care that some H&N members can handle the mask without meds, I did not.  Matter-of-fact I consider Lorazepam one of my top 3 items to hold my hand while going through this crap.  The other 2 items where Magic Mouth Wash and Silver Sulfadiazine Cream.”

I always felt like I was pretty normal when on Lorazepam, but from what I learned, I was always two sheets to the wind (in a good way).  Drugs helped me to find the rad time as very interesting, but the mask and I are still on different planets.

If you choose not to take meds for help, then your path to nirvana may be different, but the goal is to get you back to a happy new normal.

Your smile looks sweet.

Matt

cbeaz4626

CivilMatt said:

I feel your pain

4626,

You have been through a lot with any one of your battle wounds being enough to kick the heck out of your psyche.  With so much at hand I would think to go after a small portion at a time and to seriously look at meds to help out. 

            “I don’t care that some H&N members can handle the mask without meds, I did not.  Matter-of-fact I consider Lorazepam one of my top 3 items to hold my hand while going through this crap.  The other 2 items where Magic Mouth Wash and Silver Sulfadiazine Cream.”

I always felt like I was pretty normal when on Lorazepam, but from what I learned, I was always two sheets to the wind (in a good way).  Drugs helped me to find the rad time as very interesting, but the mask and I are still on different planets.

If you choose not to take meds for help, then your path to nirvana may be different, but the goal is to get you back to a happy new normal.

Your smile looks sweet.

Matt

I'm not against meds.....just

I'm not against meds.....just always thought of myself as not needing them but I've never been through anything like this.  I've never been one who is depressed, glass is always half full....you know the drill.  I guess I just didn't expect the emotional to follow up to all the physical stuff and knock me for a loop.  I see my primary care doctor at the beginning of the year so I will discuss this with her.

phrannie51

Damn insurance companies...

I've heard over and over on here how people have had to fight their insurance companies for teeth!!  Supposedly, when you lose your teeth to a "medical problem", they are supposed to replace them.  It's not like you're getting dental work for something other than a medical problem. 

Anyway, sweetie....what you need is some teeth.  I already had dentures when I started treatment, but there were three months after rads that I had to have a different kind of chemo, and wearing my teeth was out of the question.  I didn't want to go out, go to the store...a restaurant, see my friends...nada...so I know what you're feeling....ISOLATED!  If they pulled all your teeth, then the really expensive part of getting dentures is already done.  You can skip the dentist and go straight to a denturist.  Check around with people you know with dentures....and then call around to different denturists and ask some prices.  I'm sure they vary.....plastic dentures are cheaper than porcelain, but plastic will still last quite a long time....6 to 10 years.  If you have to take a small bank loan out, do it....your mental health is needing it....and....you DESERVE IT!!  A $2000, or $2500 loan is small potatoes to a bank or credit union....the first step is always the hardest. 

p

PS....I never had a depressed day in my life until after treatment....then slowly I seemed to slide into a pit I couldn't get out of....I didn't remember HOW I used to be.  Most of my depression came from fear of a recurrence.....which I got (ask and you shall receive...I'm sure my fear played a part in getting it back)....my Dr. insisted I at least try an antidepressent/antianxiety med....within 10 days I was literally LIFTED out of that dark pit.  I was automatically thinking different....it was amazing, and I am pissed I didn't try meds 3 years earlier.

cbeaz4626

phrannie51 said:

Damn insurance companies...

I've heard over and over on here how people have had to fight their insurance companies for teeth!!  Supposedly, when you lose your teeth to a "medical problem", they are supposed to replace them.  It's not like you're getting dental work for something other than a medical problem. 

Anyway, sweetie....what you need is some teeth.  I already had dentures when I started treatment, but there were three months after rads that I had to have a different kind of chemo, and wearing my teeth was out of the question.  I didn't want to go out, go to the store...a restaurant, see my friends...nada...so I know what you're feeling....ISOLATED!  If they pulled all your teeth, then the really expensive part of getting dentures is already done.  You can skip the dentist and go straight to a denturist.  Check around with people you know with dentures....and then call around to different denturists and ask some prices.  I'm sure they vary.....plastic dentures are cheaper than porcelain, but plastic will still last quite a long time....6 to 10 years.  If you have to take a small bank loan out, do it....your mental health is needing it....and....you DESERVE IT!!  A $2000, or $2500 loan is small potatoes to a bank or credit union....the first step is always the hardest. 

p

PS....I never had a depressed day in my life until after treatment....then slowly I seemed to slide into a pit I couldn't get out of....I didn't remember HOW I used to be.  Most of my depression came from fear of a recurrence.....which I got (ask and you shall receive...I'm sure my fear played a part in getting it back)....my Dr. insisted I at least try an antidepressent/antianxiety med....within 10 days I was literally LIFTED out of that dark pit.  I was automatically thinking different....it was amazing, and I am pissed I didn't try meds 3 years earlier.

thank you for taking the time

thank you for taking the time to write your experience.  It heps so much to hear from those who have been there and gotten through it.  I agree with you on the teeth thing.  I just dont feel like myself.....I want to smile again and not wory about what my face looks like.  I know that eventually I'll get there so I am trying to focus on that while I fight the insurance company!  Thanks again for te support!

phrannie51

cbeaz4626 said:

thank you for taking the time

thank you for taking the time to write your experience.  It heps so much to hear from those who have been there and gotten through it.  I agree with you on the teeth thing.  I just dont feel like myself.....I want to smile again and not wory about what my face looks like.  I know that eventually I'll get there so I am trying to focus on that while I fight the insurance company!  Thanks again for te support!

When I had my...

three months with no teeth, our pump went out....I had to do all the dealings with the pump installer.  I remember the first time I had to go out and have a LONG conversation with him....I didn't want to go, but knew I had to, I didn't want the conversation to be long....but it was.  Then 3 days later it came time to pay for the pump.  I told my husband that if I were him, I wouldn't take a $4000 check from somebody with no teeth....LOL. 

p

slk2015

My experience with cancer and losing teeth

I hear you on this.  I had stage 2 tongue cancer—2 glossectomies, lymph nodes removed on the right side and an abcess on my neck the size of a softball.  In 6 weeks time, I was in the hospital 4 times.  This was in 2015.  Then, in October 2016, I had my top teeth removed and it took forever to heal, I was in excruciating pain and finally found a dentist I could work with.   I had dental insurance which paid for much of the work (through my husband’s work).  In June of 2016, I had my bottom teeth out.  That went much better.  Insurance covered the extractions, but I paid for dentures.  I went out in public without teeth, possibly in part because I was never one to smile much and I’m not especially self-conscious.  After I got the bottom dentures, I still can’t master using them well.  It’s been a couple of months.  I often just wear the top ones when I go to town—people don’t seem to notice missing bottom teeth.  I didn’t get bummed out by the cancer and the loss of teeth, but learning to use the bottom dentures has been frustrating.

   

It’s a lot to take in when your world gets turned upside down.  If you had a “normal”, it vanishes and gets replaced with the “new normal” and that can be upsetting.  Your hesitation to take medication is understandable, but for a while it may be your best option.  Physically, you’ve been under heavy stress and that can cause anyone one to become depressed.  You may only need the meds short term. 

 

Today, I had my top denture in, but even with it in, my husband had difficulty understanding me because my tongue gets numb and I talk like I’m deaf—very flat.  It’s difficult over the phone sometimes.  My neck is swollen up like mumps—it just does that sometimes.  My point is not to be complaining but just stating that I know things will never be the same.  I just go with it.  Moving forward helps, looking back at what was generally makes things worse.  Like you, I am generally upbeat and take things as they come.  That served me well through this.

 

It may also be the time of the year that is causing some of your distress.  It's winter and the days are shorter, and the holidays are upon us.  These stir up lots of emotions.

 

Tonita

Have you considered talking

Have you considered talking to a counselor?  Talking things out with a professional could really help you.

Duggie88

Stay Positive

Beating depression is easier said then done. One tends to sit and dwell which in turn can put you deeper in the hole. I always joke my way through almost anything even with my medical team throughout my treatments it was also a way to hide the fear. I  truely believe staying positive may be a little more than 50% of the battle but thats just me. As to the insurance issue, I am a Trustee on a fairly large Health and Welfare Fund and hear appeals regularly. In all instances we look at individual circumstances and rule accordingly. My voice was part of my trademark, and I still have my precancer voice on my office phone. My treatment started exactly 7 years ago today when I went through a full neck disection and as recently as Tuesday someone asked me whose voice was on my out going message and they couldn't believ it was me. I hated my new voice but volunteered for speaking engagements to get over what I thought as a loss but also to build on my self asteem. Radiation stoled my bottom four front teeth from me but until I had a plate made I told people I played ice hockey. I know it's different for women my wife reminds me constantly men just sometimes don't care what they look like. The changes we go through creates a very unique human being alot different than the person we used to be and yet we have no control over it so I just decided to go with the flow. I'm still around 7 years later to throw my $.02 around which is alot better than the alternative in the event my surgery and treatment didn't work. One year after my surgey I complained to my doctor about my thick soliva and then asked what would have happened if I choose not to have the surgery. He responded with I wouldn't be here complaing about my soliva.

Keep your head up and stay positive. Cancer is a SOB I wake up every morning and think F... YOU cancer you tried and I won and I have the battle scars to prove it.

Enjoy the day.............I do every one of them

      Jeff

 

portbeattie@yahoo.com

moving forward

i hear you . i have a lot of the same kind of things going with me .had a cancer in my sinus 12 years ago -came back -lost my top teeth then -this time cut off 1/2 upper jaw an my pallet left side -had my plate added to so the hole in my mouth would seal it sits on a scar ridge fixident keeps it in -tired big time -i drink ensure etc -hurts most of the time if i eat -all this will get better so they  tell me -stayed in jacksonville fl did 85 treatments 60 proton 25 lanacak-its been 7 weeks sence my last treatment -iam a big guy 6 ft .1 200lbs an want to cry at everything -well a lot - i got  so much better when i got my teeth fixed -god luck

bob

Dtanman

Hello group, scc 4a unknown

Hello group, scc 4a unknown primary, have your primary doctor do a thyroid test. As we all know the rads fry the thyroid.  

cbeaz4626

Dtanman said:

Hello group, scc 4a unknown

Hello group, scc 4a unknown primary, have your primary doctor do a thyroid test. As we all know the rads fry the thyroid.  

thyroid

Good thought.  I had my thyroid removed in 2013.  They have been monitoring my levels and they did get quite low during treatment because most days I could no keep my medication down.  At they moment they are stable.

 

cbeaz4626

portbeattie@yahoo.com said:

moving forward

i hear you . i have a lot of the same kind of things going with me .had a cancer in my sinus 12 years ago -came back -lost my top teeth then -this time cut off 1/2 upper jaw an my pallet left side -had my plate added to so the hole in my mouth would seal it sits on a scar ridge fixident keeps it in -tired big time -i drink ensure etc -hurts most of the time if i eat -all this will get better so they  tell me -stayed in jacksonville fl did 85 treatments 60 proton 25 lanacak-its been 7 weeks sence my last treatment -iam a big guy 6 ft .1 200lbs an want to cry at everything -well a lot - i got  so much better when i got my teeth fixed -god luck

bob

moving forward

sounds like you've been through the ringer too.....I feel for you too.  I think getting my teeth fixed would help me a lot.

cbeaz4626

Duggie88 said:

Stay Positive

Beating depression is easier said then done. One tends to sit and dwell which in turn can put you deeper in the hole. I always joke my way through almost anything even with my medical team throughout my treatments it was also a way to hide the fear. I  truely believe staying positive may be a little more than 50% of the battle but thats just me. As to the insurance issue, I am a Trustee on a fairly large Health and Welfare Fund and hear appeals regularly. In all instances we look at individual circumstances and rule accordingly. My voice was part of my trademark, and I still have my precancer voice on my office phone. My treatment started exactly 7 years ago today when I went through a full neck disection and as recently as Tuesday someone asked me whose voice was on my out going message and they couldn't believ it was me. I hated my new voice but volunteered for speaking engagements to get over what I thought as a loss but also to build on my self asteem. Radiation stoled my bottom four front teeth from me but until I had a plate made I told people I played ice hockey. I know it's different for women my wife reminds me constantly men just sometimes don't care what they look like. The changes we go through creates a very unique human being alot different than the person we used to be and yet we have no control over it so I just decided to go with the flow. I'm still around 7 years later to throw my $.02 around which is alot better than the alternative in the event my surgery and treatment didn't work. One year after my surgey I complained to my doctor about my thick soliva and then asked what would have happened if I choose not to have the surgery. He responded with I wouldn't be here complaing about my soliva.

Keep your head up and stay positive. Cancer is a SOB I wake up every morning and think F... YOU cancer you tried and I won and I have the battle scars to prove it.

Enjoy the day.............I do every one of them

      Jeff

 

I hope that I am able to win

I hope that I am able to win with the insurance company.  I think getting my teeth back would make a big difference in how I feel.  I'd like to be able to expand what I am able to eat instead of just soft stuff.  I'm craving a salad so bad. Thanks for the encouragement!

cbeaz4626

Tonita said:

Have you considered talking

Have you considered talking to a counselor?  Talking things out with a professional could really help you.

yes....I think it would help.

yes....I think it would help.  I have reached out through my cancer center and have an appointment set up.

cbeaz4626

slk2015 said:

My experience with cancer and losing teeth

I hear you on this.  I had stage 2 tongue cancer—2 glossectomies, lymph nodes removed on the right side and an abcess on my neck the size of a softball.  In 6 weeks time, I was in the hospital 4 times.  This was in 2015.  Then, in October 2016, I had my top teeth removed and it took forever to heal, I was in excruciating pain and finally found a dentist I could work with.   I had dental insurance which paid for much of the work (through my husband’s work).  In June of 2016, I had my bottom teeth out.  That went much better.  Insurance covered the extractions, but I paid for dentures.  I went out in public without teeth, possibly in part because I was never one to smile much and I’m not especially self-conscious.  After I got the bottom dentures, I still can’t master using them well.  It’s been a couple of months.  I often just wear the top ones when I go to town—people don’t seem to notice missing bottom teeth.  I didn’t get bummed out by the cancer and the loss of teeth, but learning to use the bottom dentures has been frustrating.

   

It’s a lot to take in when your world gets turned upside down.  If you had a “normal”, it vanishes and gets replaced with the “new normal” and that can be upsetting.  Your hesitation to take medication is understandable, but for a while it may be your best option.  Physically, you’ve been under heavy stress and that can cause anyone one to become depressed.  You may only need the meds short term. 

 

Today, I had my top denture in, but even with it in, my husband had difficulty understanding me because my tongue gets numb and I talk like I’m deaf—very flat.  It’s difficult over the phone sometimes.  My neck is swollen up like mumps—it just does that sometimes.  My point is not to be complaining but just stating that I know things will never be the same.  I just go with it.  Moving forward helps, looking back at what was generally makes things worse.  Like you, I am generally upbeat and take things as they come.  That served me well through this.

 

It may also be the time of the year that is causing some of your distress.  It's winter and the days are shorter, and the holidays are upon us.  These stir up lots of emotions.

 

Yes, he holidays do add

Yes, he holidays do add stress.  Not necissarily in a bad way for me but just so much to do and the pressure to get it done on time.  I was told that having dentures would feel like you have a couple of tennis shoes stuffed in your mouth for a while....then you'll get used to them.....it should be interesting.  I hear the "new normal" phrase all the time.....its really true.  Nothing is the same, thats for sure

 

cbeaz4626

phrannie51 said:

When I had my...

three months with no teeth, our pump went out....I had to do all the dealings with the pump installer.  I remember the first time I had to go out and have a LONG conversation with him....I didn't want to go, but knew I had to, I didn't want the conversation to be long....but it was.  Then 3 days later it came time to pay for the pump.  I told my husband that if I were him, I wouldn't take a $4000 check from somebody with no teeth....LOL. 

p

I'm going on 6 months with no

I'm going on 6 months with no teeth at the moment.  I am hoping to have them by the 1 year mark

cbeaz4626

CivilMatt said:

I feel your pain

4626,

You have been through a lot with any one of your battle wounds being enough to kick the heck out of your psyche.  With so much at hand I would think to go after a small portion at a time and to seriously look at meds to help out. 

            “I don’t care that some H&N members can handle the mask without meds, I did not.  Matter-of-fact I consider Lorazepam one of my top 3 items to hold my hand while going through this crap.  The other 2 items where Magic Mouth Wash and Silver Sulfadiazine Cream.”

I always felt like I was pretty normal when on Lorazepam, but from what I learned, I was always two sheets to the wind (in a good way).  Drugs helped me to find the rad time as very interesting, but the mask and I are still on different planets.

If you choose not to take meds for help, then your path to nirvana may be different, but the goal is to get you back to a happy new normal.

Your smile looks sweet.

Matt

I'll be talking to my primary

I'll be talking to my primary care doctor about this stuff next month.  I am going to try a low does anti depressant for a while and see if that helps.

SASH

Insurance and Teeth

It is possible to get medical insurance to cover most of the cost of implants and a permanent denture.

My insurance covered 40 sessions of HBOT, multiple surgeries to remove teeth, flatten mandible, put in implant posts, uncover posts, skin graft, etc.  They also paid 80% for the actual perment denture.  

They didn't cover the permanent posts to affix the denture to the posts.  I calculated that they covered roughly $ 172k while I had to cover about $ 3k plus my normal deductible and out of pocket amounts to have this done.  

I went through a Maxillary Facialist Surgeon who accepted my medical insurance and my dental insurace.  Talk to the doctor's insurance specialist to make sure they properly file the request and stress to them that this is "MEDICALLY NECESSARY" as it was caused from the side effects of cancer treatment.

 

slk2015

Maybe not two tennis shoes!

I'm not sure it's two tennis shoes, but they do have bulk!  I managed to eat with both of mine in twice today, though I popped the bottom one out once and had to try again.  So far, I'm not to where I can eat salads--lettuce is very tricky with dentures.  Adding something like bread helps.  Since I had to go for months without teeth, I have mastered the art of gumming foods with a vengence!  (I'm not sure that's good or bad  ) so I can eat most foods except the super crunchy ones.  While I had hoped to progress faster with the eating, I keep reminding myself all of this takes time.  

traceyd1

insurance

My husband also lost teeth during his treatment.  His weren't pulled due to radiation, they were removed when they removed the his right mandible.  He was terribly self-conscious about it and didn't smile a lot when he was out in public.  Our insurance company refused to pay for the dental prosthesis and implant surgery.  The cost for his was over more than 10,000. just for the prosthetic, which we couldn't afford.  We were even told that if someone had hit him with a baseball bat they'd pay, but didn't pay for teeth when disease was the cause of loss.  He went to the Human Resources dept. of his employer and was put in contact with a patient advocate.  Within a month, we had approval for teeth.  His surgeon was amazed.  He has had his teeth for two years now and is grateful every day for the help of that advocate.  Good luck to you.