Attitude is everything

SASH
SASH Member Posts: 421 Member
edited May 2019 in Head and Neck Cancer #1

A little background as to where this post is coming from.

I was diagnosed a few months after my 34th birthday with Stage IV SCC of the Tongue.  It started with issues swallowing which the local ENT diagnosed as a sinus infection.  After my primary care doctor took a look he suggested getting a Biopsy.  This is how it was discovered.

Went to the local Cancer Center, well within 50 miles of home, and met with a Surgical Oncologist from the ENT department.  After a scope he realized it was too far advanced to start with surgery.  So he went to the tumor board where it was discussed with Oncology and Radiation Oncology.  The plan of action was 46 high dose radiation treatments with 12 simultaneous chemo sessions.

After done with those treatments, surgery was scheduled for 18 hours to remove 85-90% of my tongue.  During the surgery they did 6 deep tissue biopsies and discovered scar tissue and dead cancer cells.

I was elated that the treatments worked, but with the known side effects that we all experience.  Dry mouth, issues speaking, issues swallowing, etc.

As time passed, my lower teeth deteriorated and as of about 3 years ago I was down to 4 lower front teeth.  Not exactly easy to eat with just those lower teeth.  It was recommended that I go to a Maxillary Surgeon that specializes in highly radiated patients.  He had a plan to remove the remaining 4 lower teeth and put in 4 implant posts in the only part of my jawbone that still had some structure.  About 10 months later I was fitted with a permanent denture.

Well this past Monday I was at the dentist for a cleaning and they found what they thought were a cavity in one of my remaining 11 upper teeth.  There was no sign of this back in January.

Well after some x-rays, they determined it was not only a caviy but they are seeing some tooth resorption on the top.  The is affecting 3 of the 11 teeth. Due to the surgery and other damage to my mouth from treatments, the only side I can actually chew on is the side where these 3 teeth reside.

The dentist is going to check with my Maxillary surgeon to come up with a plan to deal with yet another hurdle.

Will this be to surgically remove these 3 teeth, remove all 11 teeth and add posts.  At this time I don't know what it will be.  Will I be able to chew and swallow after what ever they plan to do is complete, I don't know?

Will I need to be put back on a feeding tube for the rest of my life, I don't know?

Sorry for the long post, but I want to let others know, that I will "live" with whatever the decision is and to not give up.  Treatment is hard as are the side effects but we can "live" with them.  Don't let the cancer define you.  You are not the cancer; it is just part of your life.

I've made it 19+ years so far since diagnosis and I plan on a long "life" with whatever path I need to travel.

 

Comments

  • SASH
    SASH Member Posts: 421 Member
    #2
    Formatin

    Don't know what happened to the formating of the post, but you can still read it.

  • DragonLadyHere
    DragonLadyHere Member Posts: 29
    #3
    Marvelous post, Sash. Good

    Marvelous post, Sash. Good reminders!

    Peace Always, 

    Johanna

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    19+ years?!?!?!

    Hell yeah, brother.  This is the kind of post we need more of!  Bummer about the teeth...  Keep on keeping on.

     

    Brandon

  • caregiver wife
    caregiver wife Member Posts: 234
    #5
    attitude

    Couldn't agree with you more!  Husband has gone thru all treatments, set backs, with very few complaints.  He makes a silk purse out of every pig's ear he has encountered.  I know his mental health has been greatly effected.  I believe his physical health has been better as well.  You go, Sash!!

    The very best Good Wishes to all that battle this beast!

    Crystal

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #6
    Sash A Great Story

    and points made for others to read. You certainly went through some of the toughest treatment I have read of on here. No wonder you have some leftovers. But you don't let it drag you down you are an inspiration to us all. Take care-God Bless

  • SASH
    SASH Member Posts: 421 Member
    #7
    Update on Teeth

    I received a phone call early this morning from my dentist's office wanting some addtional x-rays so they would have all the information before speaking with my Maxillary Surgeon. So on the way home from work, I went to their office and had the x-rays done.  Then the dentist came to me and reviewed the films.

    Well it appears the teeth on both sides are having issues, which would leave just the front 4 that are solid.  She was finally able to speak to my Prostodonist after I left the office and got me an appointment with her 30 minutes before I see the Maxillary Surgeon in July. 

    So the plan will probably be to remove all 11 upper teeth and do impants and then make a permanent denture for the uppers to match my permanent denture that I have for my lower.

    I'll get the full plan in July, but it looks like another year of just liquids until I get my new teeth.  Then when I get them, I might be able to chew, but will still have the swallowing issues.

    Just another bump in the road to survivorship.

  • Logan51
    Logan51 Member Posts: 467 Member
    #8
    SASH said:

    Update on Teeth

    I received a phone call early this morning from my dentist's office wanting some addtional x-rays so they would have all the information before speaking with my Maxillary Surgeon. So on the way home from work, I went to their office and had the x-rays done.  Then the dentist came to me and reviewed the films.

    Well it appears the teeth on both sides are having issues, which would leave just the front 4 that are solid.  She was finally able to speak to my Prostodonist after I left the office and got me an appointment with her 30 minutes before I see the Maxillary Surgeon in July. 

    So the plan will probably be to remove all 11 upper teeth and do impants and then make a permanent denture for the uppers to match my permanent denture that I have for my lower.

    I'll get the full plan in July, but it looks like another year of just liquids until I get my new teeth.  Then when I get them, I might be able to chew, but will still have the swallowing issues.

    Just another bump in the road to survivorship.

    Sash

    Thought you once said you had a partial jaw replacement? Did you? Was on the forum for years under a AKA, and your post on that really opened my eyes and asking questions about. 48 Rads is mega! I only had 30 full and partial: full were in 20 places, and partials in only 4-5 places. NPC, but data suggests a lot of the zappings were to the neck- though mouth damage suggests otherwise. And was NPC. 6800 cGys, total.

    Have not lost any teeth in past 10 years, but have spent over $15-K on Dental bills getting the tops on teeth rebuilt, 2 Root Canals and 3 Crowns.

    Your 19 years is an inspiration. Hondo/Tim once alerted me to an entry on a different discussion board made by a man with 20 years, or so he said. He is the only one I've ever found with the same regiment of Chemo/Rads I got, and was hospitalized all 8 weeks of tx because they didn't have the technology to carry 2 bags and pumps for concurrent 5-FU and Cisplatin when he got his: 96 hours of both, or 4-week floodings of the Chemos, twice, while getting the Rads- that landed me in a Hospital for 4 nights after the second 96-hour Bout. He was so negative that Tim wanted me to message him, which I did without response. The extreme of his negativity kinda hit me hard whenever I thought of long term. Only 10 years out, with aspiration getting worse over the past year-plus and feeling so danged tired all the time I must admit the dark thoughts have krept back into my mind (AKA the Beatles' Day Tripper- "got a good reason for taking the easy way out"), and your 19 years is an inspiration to get back into the Butkus mindset and Come What May.

    Thank you. 

  • SASH
    SASH Member Posts: 421 Member
    edited June 2019 #9
    Logan51 said:

    Sash

    Thought you once said you had a partial jaw replacement? Did you? Was on the forum for years under a AKA, and your post on that really opened my eyes and asking questions about. 48 Rads is mega! I only had 30 full and partial: full were in 20 places, and partials in only 4-5 places. NPC, but data suggests a lot of the zappings were to the neck- though mouth damage suggests otherwise. And was NPC. 6800 cGys, total.

    Have not lost any teeth in past 10 years, but have spent over $15-K on Dental bills getting the tops on teeth rebuilt, 2 Root Canals and 3 Crowns.

    Your 19 years is an inspiration. Hondo/Tim once alerted me to an entry on a different discussion board made by a man with 20 years, or so he said. He is the only one I've ever found with the same regiment of Chemo/Rads I got, and was hospitalized all 8 weeks of tx because they didn't have the technology to carry 2 bags and pumps for concurrent 5-FU and Cisplatin when he got his: 96 hours of both, or 4-week floodings of the Chemos, twice, while getting the Rads- that landed me in a Hospital for 4 nights after the second 96-hour Bout. He was so negative that Tim wanted me to message him, which I did without response. The extreme of his negativity kinda hit me hard whenever I thought of long term. Only 10 years out, with aspiration getting worse over the past year-plus and feeling so danged tired all the time I must admit the dark thoughts have krept back into my mind (AKA the Beatles' Day Tripper- "got a good reason for taking the easy way out"), and your 19 years is an inspiration to get back into the Butkus mindset and Come What May.

    Thank you. 

    Dave - Jaw Replacement

    When the took the lower they found enough bone in the front of my lower jaw to put the 4 implants to hold the partial permanent denture.  Currently the bone holding the implants is holding and no bone had to be grafted in, but I don't know yet when they need to do for the tops.  I'll find out next month.

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