my husband was just diagnosed with stage 4A squamous cell - tonsils and left lymph node

mrspaul
mrspaul Member Posts: 24
in Head and Neck Cancer #1

hello everyone.

my husband was recently diagnosed with metastatic squamous cell carcinoma.  it is in his tonsils and left lymph node.  the PET scan showed that the cancer has not spread.  We live in the Boston, MA area and are going thru the Dana Farber Cancer Center.  My husband is going to have surgery, chemo and radiation.  The surgery is scheduled for August 16th, it is a 24 hour stay, surgeon is removing the tonsils, lymph node.  My husband is age 52 and has smoked for 40 years.  He just quit when he was diagnosed with cancer after trying to for years and years.  

I have actually not had a family member or any close friends with cancer so I am very unfamiliar with how chemo works or radiation or the after affects - except for things that I have read / seen on tv - hair loss, nauseau, vomiting, fatique.  The oncologist we just had an appointment with did not mention any of the things people on here are talking about:  the terrible problem with mucus, the mouth sores, etc.  We do not know yet what/if any will be the extent of nerve damage after the surgery.  

My husband was already on SSDI due to spinal stenois (he has terrible spine problems due to working as a laborer for 30 years).  So - he already has medicare.  I am self employed (home daycare provider).  I have applied for secondary insurance for my husband thru a low cost program available thru our state and am waiting to hear if he qualifies.  

I can not afford to stop working....we have the mortgage on our home and our daughter lives with us and our two grandchildren ( my daughter is divorced).  our grandchildren are our life - and my husband says there is no way in he** that he is dying.  The oncologist said the prognosis is GOOD and their goal is to CURE him of the cancer.  

I am worried about all the medical costs leftover after medicare pays their 80 percent, with just the biopsy and the PET scan we have 350 dollars in medical bills in two weeks time....I know that is just a drop in the bucket considering the sugery, appointments, etc.  And - my husband's bottom teeth are not strong enough to endure the radiation he will need so all the bottom teeth have to come out before the radiation begins.  we have an appointment for that this week and he will get a lower denture plate....no dental insurance.  Oncologist is very concerned about a fatal bone infection if the teeth dont come out - so out they are coming.  

I am just really scared for my husband, I am positve he will survive this, but scared.  I would sell everything in this house to pay for treatments, except for a bed for him to lay on and a tv to watch while he recovers.....

Tonight is my night to think about practical things - each night I work on reading different things about his cancer and filling out paperwork packs.... 

Does anyone know of any financial resources?  I dont even know what I am looking for .... financial help to pay for medical costs....We have to keep this house up - we have to keep this home for our grandchildren to live in.  

We are having a yard sale this coming saturday, I already work more than 50 hours a week so getting a part time job is probably not going to be possible - besides the fact, I will need to take care of my husband.

Thanks for letting me ramble on and reading this....I dont really have anyone to talk to about this - the worries - I keep everything very positive in front of my husband, and tell him I am investigating things on the internet and that I will make everything possible - he only has to concentrate on getting well.  

thank you,

ellen

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    Ellen,

    Welcome to the H&N forum, sorry that  you are here.

    First off, don’t sell the TV and his very smart doctor said “the goal is to cure him”, I agree with that.

    I had stage IVA, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux) and I can confirm that the ride is rough, but very doable.  Many members experience nausea, throat, mouth and tongue pain, difficulty swallowing, dry mouth, aversion to the taste and feel of most foods, to name a few.  Some you get and some you don’t.  Read through the threads and check out the superthread.

    You , your daughter and the grand kids can be a huge moral support in addition to helping out.  Try to psych your husband in to being proactive and positive about his treatment.  It is better to want to fight and win.

    I am not much help on the financial aspects, but there have been a few H&N members who actually did well without much.

    One easy thing he can do is start drinking water and swallowing often.  This will become self-evident as treatment progresses.

    Good luck,

    Matt

  • Kari2007
    Kari2007 Member Posts: 108
    #3
    Financial help

    You might check with the cancer center where he will be receiving treatment. They will likely have social workers or financial navigators who can locate resources for you. Treatment is hard enough to deal with without having to worry about paying your bills. I hope that they have some hopeful information to give you on financial support. 

    Kari

  • the_wife
    the_wife Member Posts: 184
    #4
    Welcome

    Hello Ellen and welcome to the H&N thread! I'm sorry you have to be here, but it's a great place to come for support and information from those who have been there, done that.

    Last year at this time my husband was beginning treatment for HPV+ stage 4 SCC tonsillor cancer that had spread to his lymph nodes. He was treated with chemoradiation - cisplatin weekly with 6 weeks of radiation. He was hit hard right off the bat with the first chemo and it all went downhill from there. It seemed like he was always dehydrated no matter how much water he drank or how many IV's of saline were administered. He was hospitalized twice due to nuetropenia and ended up with a feeding tube about halfway through treatment. He endured just about every side effect mentioned on this thread. I won't lie to you - it was a living hell that took every bit of emotional and physical strength we had. I've been through some tough times, but honestly that was the worst. His doctors told us it would be the hardest thing we'd ever done, and they were right, although at the time they didn't elaborate and I didn't ask. That being said, not everyone is affected the same way. Some have an easier time of it. I had always thought of my husband as a very strong, tough guy. This almost did him in. He was always sick - nausea and pain was a constant companion for months. He lost almost 50 lbs.

    Since my husband was so sick it was up to me to help prepare and administer the tube feedings, which isn't hard once you get the hang of it, but between that and the medication regime, it can be very challenging to coordinate. 

    The hardest part is remembering to take care of yourself in the midst of all the caregiving. Remember to take breaks often and ask for help from family and friends. Your own health will suffer if you don't.

    You can be a huge source of support for your husband but the thing is - he has to be his own champion, too. When times got rough I would logon to this thread and there was always someone there to pick me up. I would repeat the positive stories to my hubby and it helped him see the light at the end of the tunnel.

    Personally I think I was a very good caregiver and I can tell that you will be, too! I was fiercely protective of him throughout his treatment and still am to this day. But we owe it all to his amazing team of doctors. I'm happy to say (so far) he remains cancer-free. He has almost completely recovered his eating abilities, and other than being quite thin and having suffered permanent hearing loss, he is doing very well. 

    I wish you both strength to get through the days ahead.

    All the best! Smile

  • caretothepeople
    caretothepeople Member Posts: 18
    #5
    Financial resources

    Cancer Financial Assistance Coalition is one organization that says they help with costs of care. On their website, CancerCare lists out financial assistance organizations both public and private. If you husband is already on SSDI it's likely that a social worker will be able to assist with seeing if he qualifies for other types of assistance. It might also be worthwhile to give your local Amer Cancer Assoc chapter a call and see what they might be able to point you towards. Stay strong, dear. You can do this.

  • mrspaul
    mrspaul Member Posts: 24
    #6
    CivilMatt said:

    welcome

    Ellen,

    Welcome to the H&N forum, sorry that  you are here.

    First off, don’t sell the TV and his very smart doctor said “the goal is to cure him”, I agree with that.

    I had stage IVA, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux) and I can confirm that the ride is rough, but very doable.  Many members experience nausea, throat, mouth and tongue pain, difficulty swallowing, dry mouth, aversion to the taste and feel of most foods, to name a few.  Some you get and some you don’t.  Read through the threads and check out the superthread.

    You , your daughter and the grand kids can be a huge moral support in addition to helping out.  Try to psych your husband in to being proactive and positive about his treatment.  It is better to want to fight and win.

    I am not much help on the financial aspects, but there have been a few H&N members who actually did well without much.

    One easy thing he can do is start drinking water and swallowing often.  This will become self-evident as treatment progresses.

    Good luck,

    Matt

    Thank you so much Matt!  My

    Thank you so much Matt!  My husband does not like water and is mostly an ice coffee drinker, ice tea.  I told him he has to get into the habit of starting to drink water...and practice swallowing.  He is postive he is going to beat this, but of course he is scared.  

    ellen

  • mrspaul
    mrspaul Member Posts: 24
    #7
    Kari2007 said:

    Financial help

    You might check with the cancer center where he will be receiving treatment. They will likely have social workers or financial navigators who can locate resources for you. Treatment is hard enough to deal with without having to worry about paying your bills. I hope that they have some hopeful information to give you on financial support. 

    Kari

    Thank you Kari - we have an

    Thank you Kari - we have an appointment tomorrow with the radiation oncologist - so while we are there I will look into the social worker aspect of their office.  

    ellen

  • mrspaul
    mrspaul Member Posts: 24
    #8
    the_wife said:

    Welcome

    Hello Ellen and welcome to the H&N thread! I'm sorry you have to be here, but it's a great place to come for support and information from those who have been there, done that.

    Last year at this time my husband was beginning treatment for HPV+ stage 4 SCC tonsillor cancer that had spread to his lymph nodes. He was treated with chemoradiation - cisplatin weekly with 6 weeks of radiation. He was hit hard right off the bat with the first chemo and it all went downhill from there. It seemed like he was always dehydrated no matter how much water he drank or how many IV's of saline were administered. He was hospitalized twice due to nuetropenia and ended up with a feeding tube about halfway through treatment. He endured just about every side effect mentioned on this thread. I won't lie to you - it was a living hell that took every bit of emotional and physical strength we had. I've been through some tough times, but honestly that was the worst. His doctors told us it would be the hardest thing we'd ever done, and they were right, although at the time they didn't elaborate and I didn't ask. That being said, not everyone is affected the same way. Some have an easier time of it. I had always thought of my husband as a very strong, tough guy. This almost did him in. He was always sick - nausea and pain was a constant companion for months. He lost almost 50 lbs.

    Since my husband was so sick it was up to me to help prepare and administer the tube feedings, which isn't hard once you get the hang of it, but between that and the medication regime, it can be very challenging to coordinate. 

    The hardest part is remembering to take care of yourself in the midst of all the caregiving. Remember to take breaks often and ask for help from family and friends. Your own health will suffer if you don't.

    You can be a huge source of support for your husband but the thing is - he has to be his own champion, too. When times got rough I would logon to this thread and there was always someone there to pick me up. I would repeat the positive stories to my hubby and it helped him see the light at the end of the tunnel.

    Personally I think I was a very good caregiver and I can tell that you will be, too! I was fiercely protective of him throughout his treatment and still am to this day. But we owe it all to his amazing team of doctors. I'm happy to say (so far) he remains cancer-free. He has almost completely recovered his eating abilities, and other than being quite thin and having suffered permanent hearing loss, he is doing very well. 

    I wish you both strength to get through the days ahead.

    All the best! Smile

    Thank you!  My husband does

    Thank you!  My husband does like positive stories about people who have survived cancer and are doing well today.  The medical oncologist told us this road will be hard to endure.  I am a pretty organized person with things written down and make great charts since I am a preschool teacher - so that skill will come in handy in making medication and feeding charts!  I will definitely remember to schedule some time to take care of myself too during this time.  Right now I get up an hour earlier than I have to so I can enjoy a cup of coffee and the newspaper/computer before the day begins while everyone else is still sleeping.  

    ellen

  • mrspaul
    mrspaul Member Posts: 24
    #9
    caretothepeople said:

    Financial resources

    Cancer Financial Assistance Coalition is one organization that says they help with costs of care. On their website, CancerCare lists out financial assistance organizations both public and private. If you husband is already on SSDI it's likely that a social worker will be able to assist with seeing if he qualifies for other types of assistance. It might also be worthwhile to give your local Amer Cancer Assoc chapter a call and see what they might be able to point you towards. Stay strong, dear. You can do this.

    thank you for the resources!

    thank you for the resources!  I have not heard of the cancer financial assistance coalition - and I will definitely check them out and my local cancer assoc chapter too.  I am imagining that the hospital would work with me for a payment plan after surgery, but the surgeons have already sent a letter that says their portion must be paid before the surgery date....but they did not enclosed a bill yet.  

    ellen

  • Tonita
    Tonita Member Posts: 197 Member
    #10
    Definitely start with the

    Definitely start with the hospital for financial assistance.  I'm in the process of doing that right now with Yale/Smilow Cancer Center.  Most hospitals have assistance programs.

    I wish you all the best on this difficult journey.

  • mrspaul
    mrspaul Member Posts: 24
    #11
    Tonita said:

    Definitely start with the

    Definitely start with the hospital for financial assistance.  I'm in the process of doing that right now with Yale/Smilow Cancer Center.  Most hospitals have assistance programs.

    I wish you all the best on this difficult journey.

    Thank you so much Tonita!  we

    Thank you so much Tonita!  we had a yard sale today - putting that money right to medical bills -- since my husband had to have all his bottom teeth removed before radiation...and a denture plate - that is costing 5000 dollars!  it ended up raining some this morning - we only made 166 dollars from our yard sale - but - that is 166 more than we had when we woke up this morning and I have some things listed on the facebook yard sale sites....I will start with the hosptial....I am really hoping for a reasonable monthly plan with them....

  • dougk405
    dougk405 Member Posts: 4
    #12
    hang in there

    Hey I'm a 35make and I had my surgery on 4/20/16 so it's been about 5 months so far since I went in. I had state 4 squamous cell carcinoma that also spread into 2 of my lymph nodes. The cancer started in my tongue and unfortunately they had to remove most of my visible tongue and I got an infection after the surgery while still in the hospital in my neck. So I was there about a month before I could go home. I have a feeding tube. I had my radiation and my chemo. I'm still not eating but mouth yet and can only drink small amounts of water or other liquids. I'll be honest this has been the hardest thing for me to go thru so far. But my wife and my 2 kids have kept my spirits up. And I feel like I'm getting better. He will have his good and his bad days. But remember th bad days don't last forever. Good luck and feel fred to ask questions . If I can help I'm happy to.

    Doug k

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