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iris Offline OP
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My husband was diagnosed in Jan 14, stage IV. He is refusing any treatment. By now, he feels, that he'll not be able to work any longer. He is thinking of resigning; he said, I'll pass (MD's prognosis was a 6 months life span), so I do not want to lie about coming back to work. - I'm afraid, he'll loose everything, even our (whole family) health insurance.
Is there a better, financially safer way for his situation?
Thanks for all your input !

Last edited by iris; 07-18-2014 06:51 PM.
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Welcome to OCF, Iris! Im so sorry to hear about your situation with your husband! Im sure its very stressful for both of you. I wish I could help you with your problem. It sounds like you have quite a mess on your hands and the weight of the world on your shoulders.

My suggestion is probably one your husband would not even consider. I advise going immediately to a comprehensive cancer center (CCC) and finding out what they suggest. There have been many Stage IV OC patients come thru this forum and Ive seen the majority of those that were treated survive (myself included). Even if the first doc said it was terminal, that does NOT mean it always is. "Letting nature take its course" with oral cancer is NOT a pleasant way to go for either of you. I suggest also seeking out a therapist for counseling to help each of you deal with this situation. Its so much for each of you to handle, talking with a professional sure couldnt hurt.

If it would help your husband to speak directly to a survivor, I wouldnt mind talking with him. I have been here for over 7 years and by now Ive probably spoken to hundreds of OC patients and caregivers from all over the world. Let me know and we could talk tomorrow.

Best wishes with everything!


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: Dec 2003
Posts: 2,606
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Iris, that sounds awful. Listen to Christine, please. I haven't heard of many doctors say something like that. Is it because your husband refused treatment last January?

I was diagnosed 11 years ago today, also Stage IV.

As far as health insurance, I'm not sure of your husband's position or if FMLA rules would apply but insurance can still be kept provided you pay the premiums. I don't know your income or money situation, though.

It sounds like you are a in an extremely difficult situation and need to get quite a few questions answered quickly. Can you talk to a social worker at the place treating your husband? Can you speak with his employer? There are so many questions you need answered.

Is there any way we or I can be of service?


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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Hello Iris - Has your husband talked to a doctor that truly knows cancer, particularly oral cancer. I'm assuming your husband has oral cancer (you didn't mention what type above).

You said his MD diagnosed his cancer as terminal with 6 month's prognosis. If that guy is not an oncologist I know I would seek a second opinion from someone trained in this particular field, ie an ENT (ear nose & throat) doc with specific experience in oral cancer, ie exactly what you will find at a CCC (Comprehensive Cancer Center). You wouldn't want a bicycle repair man making repairs to your car any more than you want a GP (general practitioner) diagnosing your cancer. Do you think you can talk your husband into at least getting a 2nd opinion from someone who knows.

How old is your husband. I ask this because in my parents generation (they are in their 80's) they trusted authority a lot more than my generation does. If their doctor said do something they did it, without question (except to quit smoking, they didn't listen to that). Said another way, they didn't question authority like we do. Is your husband the type to not question authority. If that's so, that might explain why he seems to be giving up and refusing treatment. You know what type of guy he is, so you should be able to determine if this is why he is thinking this way.

I concur with what's been said above by others. Many stage IV members of this forum have survived and thrived after cancer and it's treatment. Some types of oral cancer are slower growing than others, I think that slow growth gives the docs time to treat it and cure it even if it was originally diagnosed as stage IV.

I hope you can get your husband to listen to what we all say. Oral cancer is NOT a death sentence. Many of our stage IV diagnosed members are still with us today, if fact I'd go so far as to say the majority of our stage IV members are still with us.

He has to fight, he can not just give up. You may be the one who has to put the fight back into him. That may be the hardest job of all right here.

Good luck with this. Keep us informed how it's going. Even if he won't seek help, we can help you get through the issues you face now and will face in the future. This family is as much about helping caregivers as it is helping patients.

Tony





Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Hello and welcome to OCF.

You must try to get your husband to see a cancer specialist asap. Not sure if he is refusing treatment or not wanting to go since he was told he has a limited time.

Either way, see an oncologist and get an update on his disease. As many stated, one may be diagnosed as terminal and receive palliative treatment and be around for many years.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Feb 2014
Posts: 3
iris Offline OP
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Thank you all so much for your advice !
My husband got a 2nd opinion, but keeps it all kind of secret; he did not want me to go along with him to the doctor. - He is not able to talk at this point, has a low energy level.
I had to fight to get his permission to tell our sons, who are young adults(20&22). - We all tried to convince him to approach a way to help him better.
I can do it again.
He has not informed his employer yet; he told me, he would be layed off.
Thanks again, I'll see what I can achieve & then, be back here.

Last edited by iris; 07-19-2014 03:27 PM.
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I also WAS a Stage IV and that was 8 years ago so you need to hog tie him and get him to a CCC.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Feb 2014
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iris Offline OP
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Thanks for your encouragement David.

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Ive sent you a message with helpful info. Please click on the small flashing envelope next to the My Stuff tab. Its very important to have a signature. Detailed instructions are in the link Ive sent you.

Thanks.


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: May 2013
Posts: 42
Contributing Member (25+ posts)
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Posts: 42
Hi Iris. Welcome to the OCF forum. A place that will help both you and your husband through your journey. Sounds as if you have one of those stubborn husbands that need a kick in the pants- and your gonna need to be tough on him. First of all- this disease does not only affect him- it affects you,your children and all that love and care for all of you! He needs to understand this and the importance of a second opinion with a Comprehensive Cancer Center. You mention he had one but won't share details? I suggest you research a CCC and make an appt for him. Go on line and look to see if they have a "multidisciplinary Head & Neck Team". Make the appt- and tell him this is for you and children and if he cares about you - he will go WITH you.the right kind of second opinion is vital. My husband was given a stage IV diagnosis too. Today we learned his one year post treatment scans are clear! He was a stubborn patient with me too...but we both survived. : ) Tough love... Keep us posted.


Colleen
Wife/advocate for husband. 52 yo nonsmoker
ISSC tonsil stage IVa. HPV + Enlarged node & tonsil,
CT 2/13
Bx lt tonsil 3/8,
PET 3/16
Tx started 4/9/2013 Cisplatin x3 and IMRT x 7 wk
Tx end 5/29
GT 5/24-7/17
Officially in Recovery Phase! : )
CT scan 8/13-NED !
CT scan 7/14-NED
5/2018- 5 year anniversary -NED
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