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#23346 06-01-2007 04:25 AM
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My husband was just diagnosed with stage 4 mouth cancer. They say surgury is not an option,as the roots are too far into muscles and bones of face. We are tring to get him insurance now, as he has to have 20 teeth taken out before they start treatment. He will have 7 weeks of radiation and chemo 5 days a week. We were told he has 40-50% chance. Those numbers don't sound good, has anyone been in this situation? Both of us are scared to death...we also have 2 children, the oldest knows some but the little is too young. How can we handle it when he does start treatment, they will ask all kinds of questions. Ok enough I'm just going on and on, that you for any advice and for your forum.


Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
#23347 06-01-2007 04:48 AM
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Welcome to OCF .Like my husband yours seems so very young to have been diagnosed with this terrible disease.Take some time out and use this site to learn all you will need to know about the actual facts of this disease,the types of treatment ,the after effects and the future outcome.You will find these on the side bar on the home page.When you have read everything write down your questions and then fire away.There are dozens of very experienced people on this site who will be more than able to lead you through this mine field just as they did me.I would never have managed withour them.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#23348 06-01-2007 08:12 AM
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Posts: 525
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Dear tnkay2001

You did good with your signature. That will help all. Welcome again.

In the forum "Currently in Treatment" there is a topic titled "When Mommy or Daddy has cancer" by Sue K on 4-22-07. I will E-mail you the thread. This may be helpful.

You need to go to the Department of Health, or Family Services in Brownsville and apply for "Emergency Medicade". Or find out the County Hospital that handles people with no insurance. They will help you. You need to get treatment going NOW. This is an acute emergency and he needs to get his first treatment asap like yesterday.

I just fought for 60 days with the state of Fl. to get help but mine was a different story. You should get in contact with the Dept of Health immediately. I will put my phone# in an e-mail. You can call me anytime and I will help if I can. You can E-mail me also.
I will try to get more info and send it to you. I will write back shortly. Take a deep breath. And be strong. Everyone here will help you get through this. We know what you are facing, and we will get you thru this. Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23349 06-01-2007 09:52 AM
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Dear Kay -
Please know that several people have walked the rocky path your husband is about to tread. We are all here for both your husband AND for you as a caretaker. This is an excellent place to "vent" as his treatment progresses. As Cookey suggested, comb thru the extensive archives using the OCF search capabilities, then come back and ask more questions about anything that you must know. Petey is also very willing to help. Wishing you the best...come back often. Warmly, JaneP


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)
#23350 06-01-2007 10:10 AM
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Hi Kay,
I raise this question every time someone says they have to a zillion teeth pulled. Did they give you a reason? Are his teeth in bad shape? Or is it simply that this dr still has everyone's teeth pulled that will be in the radiation field. They used to do this 10 years ago to healthy teeth, but no longer do it.

If his teeth are healthy, I'd get a second opinion. 20 teeth is a lot and it is forever before you can get dentures after radiation and they cost a fortune. Plus it makes recovery that more difficult if you can't chew on anything but front teeth.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#23351 06-02-2007 03:02 AM
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Hello tnkay2001

Can we call you Kay? What is you husbands name? I'm sending you a "link". Click it and find where you need to go or call. Look in the online services. You should find all the info you need here.

http://www.state.tn.us/health/

I do not think you will be able to get insurance and you must go thru the state. In your husband


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23352 06-02-2007 04:46 AM
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We have an appointment Monday with Dept of human services, they have something called Tenncare, that we are trying to apply for. Also, just got a fax that cancer dr sent to oral surgeon, will post more in a bit, so maybe someone can help me with the all these big words they use. And yes his teeth are in very poor shape, most are broke off at gums, so this won't be easy on him either.


Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
#23353 06-02-2007 05:02 AM
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Hi Tnkay,

If his teeth are that poor, it's wise to have them removed. Sounds like he hasn't had good use of them for awhile so it won't be such a hardship on him now.

Please let your husband know that I was 41 when I was diagnosed with stage 4 oral cancer in my jaw and four years later I am doing fine. A few differences in me and how my mouth works, but nothing that keeps me from doing everything I did before the cancer. DON'T let the statistics given to you matter, they will only scare you. When I read the statistics I considered my life over, done, went into a huge depression. Then I got over it and realized my situation is unique and can't be measured by someone else's outcome.

Right now, you need to find him treatment. You won't find an insurance company that will take him on now, not after a diagnosis of cancer. Take Petey's advice and try the routes he's given you.

As far as your children go, I still have three at home. Our youngest was 9 when I was diagnosed, to young to understand it all. We didn't give her all the details but at the same time, didn't hide anything from her either.........if that makes any sense. No need to sit her down and give her all the scary stuff, just give him/her the condensed version of it, let him/her know that Dad WILL be sick for awhile but that docs are doing all they can to make him healthy again. Most importantly, keep the kids schedules as close to the same as possible. Dedication to this served my family well when I was going through treatment, it really helped my younger kids.

Good luck and talk to you soon,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#23354 06-02-2007 05:04 AM
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Posts: 525
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Here are three links that will help you with the terminology.

www.cancer.gov/dictionary/

www.ask.com

http://web.utk.edu/~aalix/abbreviations.html

Also, use the two search engines in this site. And there is so much information here. You just have to find it. Surf the site, and you will learn a lot.

Post anything you need help with. You are not alone in this difficult time. We are always here.

Be very blunt with the Health Dept. Tell them that AS WE SPEAK THIS CANCER IS GROWING. There is no time to be waiting for approval. It is almost like your husband is "bleeding out"...The bleeding needs to be stopped NOW! Tell them this is an ACUTE EMERGENCY. Do Not Let Them Give You A Run Around. He should be in treatment now. YOU HAVE TO STAND YOUR GROUND WITH THEM. I KNOW. Good Luck. Petey


DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
#23355 06-02-2007 06:55 AM
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ok here we go.

Ct scan does show bone erosion of the maxilla posteriorly at the tuberosity with extension into the pterygopalatine and infratemporal fossa. The lateral pterygoid muscle is thickened. The planes between it and the medial pterygoid muscle are gone and this loss of fat planes continues all the way to the mandible and looks to go right up to the temporomandibular joint as well, though with outgoing erosion of the mandible. This definitely would explain his significant pain and subjective and odjective trismus. Surgically. it is extremely difficult or effectively impossible to be able to eradicate tumor when it has spread along these muscles and fascia planes of the infratemporal fossa, and even if one could technically achieve negative margins, rarely is it ever the case and local recurrance is high. His cure is going to depend on whether or not he has a good response to chemoradiation therapy and it makes every bit of sense to do that up front.


Husband age 48, diagnosed 5/10/07 with stage 4 mouth cancer, surgury not an option, teeth removed 6/21/07, 5x wks of rad with Cisplatin 1x week for 7-8 week course starting 7/10/07. Update 02/25/08 right maxillectomy and right infratemporal fossa resection
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