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Guest Terry Smith

Husband dx'ed with NSCLC

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Guest Terry Smith

Hello Everyone,

I've been reading the posts here for a couple of days now and finally got the courage to write.

My husband was dx'ed with Stage IV NSCLC with mets to the brain and lymph nodes in January 2003. This dx came 17 months and 20 days after we were married and 4 months later I'm still in shock. There were NO signs. He had a seizure and was taken to the hospital and was transferred to UVA Medical Center in Charlottesville VA. Two days later a very heartless doctor came in and told us, get your affairs in order, you have 6 months to live.

My husband was a very vibrant man, a tennis coach, teacher, and private pilot. I'm so angry because so far this cancer has taken all of this from him.

He has finished 12 rounds of whole brain radiation and it currently on carboplantin and taxotere. The radiation has caused problems with his eyes. Is this normal? He has trouble seeing and his eyes constantly water. He lost 45 pounds and can't eat even though he's taking zofran, which by the way is the 6th nausea medicine that he's been on. Also, is it normal to be falling. He does this constantly. I'm so afraid to leave him alone at all. We have a wonderful oncologist that I thank God for every day.

My biggest problem seems to be my husbands denial. He wants to know nothing! He tells the doctor, Do what you have to do to get rid of it, but don't tell me anything. He gets angry with me if I talk to the doctor also. I want to know though. I want to know about the cancer, what to expect, how to help him, everything in general. How do I handle this? He won't even talk about it and that's so difficult for me.

I hope you guys can help me! I want to fight with him to beat this but I'm so scared. I pray and pray for God to take this away. My husband is my best friend and I'm so scared of losing him.

Thanks for letting me vent?

Terry

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Terry,

My father was (and IS) the same way. It's been 8 months since his dx. and he doesn't care to know statistics, what the Dr/ says etc., still to this day.

A few weeks ago someone asked him if the Dr. ever gave him a life-expectancy with this disease...his answer...um, no, he never said.

I've been sitting in that doctor's office right by his side from the beginning when one Dr. said 4-5 months, the pulm. Dr. said 6-8 months and his first clinical research nurse said..he "might" make Christmas. HUH?

As you can see they were all wrong! (Yippee) but I know what you mean by denial. In my dad's case, I think it is what keeps him fighting and going strong. The truth (because I know he has heard some of it) is too much for him to handle. And why would he need to, with me doing everything and staying on top of things? His job is to rest, get stronger and survive the treatments so that eventually he may begin to live a full life one day.

Talk with your husband about how you feel. Tell him that his job is to get thru treatments, rest, build strength to fight the cancer. But your job is to research, find out the facts, be his biggest supporter and be his biggest advocate. Tell him to stop being angry with you and that you are only trying to help and to ensure that he get the best care. Research your Dr., the medical facility, the disease, on the internet and even right here- is a great place for info. Tell him that you feel helpless and knowing these things and staying on top of his care makes you feel useful and secure that they are doing everything they can for your husband. He doesn't need to know every detail, that's ok.

My dad only knows details about treatments and medicenes and possible side-effects to watch out for. All tests, every detail about his sclc, those terrible stats, those are all my burden to keep. It's the least I can do.

Best of luck to you. Keep us posting and you will be in our prayers.

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Guest bessb

Terry

I'm so sorry you had to find our board but welcome, you won't find a better place to get answers to your questions and just to share with others in your situation. I was diagnosed with SCLC w/mets to the liver on 2/14. At first I didn't want to know anything either. I was hiding my head in the sand. The first oncologist I went to told me I had a 70% chance of remission and a 30-40% of cure because of my overall general health. The second one I saw told me I had 12 months to live. At that point I thought I had better find out what is going on. I researched the internet and came away scared and upset. Then I found this board and this wonderful group of people and read some amazing statistics. People were living with this disease and a lot longer than 12 months, and many of them were not in as good health as I am to start with. Every case is different and the only one who really knows when our time will be up is God.

We all deal with things differently and I can understand your husbands position, he just cannot deal with it and thats okay. Just continue doing what you have been doing and tell him to just rest and get well. However, I would also stress to him that a positive attitude is half the battle. When they told me I had 12 months to live I thought "like Hell!", I will prove them wrong and I am sure trying. I am not going down without a fight and I won't give in to this disease.

Perhaps in time when he is feeling better he will be able to deal with it a little more. Just keep encouraging him and being there for him, thats all you can really do. A supportive caregiver is SO important and it sounds like you are the best.

My prayers are with you

Bess B

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Terry,

Welcome, but sorry you are here.

If you read my profile, my husband is very similar to yours. He also does not ask the drs. about the stats or survival rates. Albeit, the drs told us from the beginning that there was a 40% cure rate with his type of cancer and because he was young and healthy. He turned 61 in Jan.

I only research the treatment options and side effects. If I accidentally get to a site that preaches gloom and doom I am gone. The stats only put me in a deep funk and I do not want to be in any kind of funk when I am with him.

Why are they not talking surgery??

It looks like my husband will have some long term problems from the whole brain rad. They think it damaged his inner ear, so he has balance and vertigo probs. They told him he will learn to compensate, since the meds to help this only make you sleep. Also, his concentration and short term memory leave something to be desired. But these are constantly improving and our onc. said other parts of his brain will continue to take over for the cells that were damaged in radiation.

Glad you are here, it has been infinitely helpful to me.

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Terry,

My sister was diagnosed in January with NSCLC. She was restaged to VI when a MRI showed a brain met. I tried to talk her out of whole brain radiation but she had 12 treatments. She just got back from UVA where she had Gamma Knife for the met. The found another lession so she had it in two spots. I noticed from your post that your husband was taken to UVA. Perhaps the Gamma Knife is an option for him. My sister is also continiously naseaus and has lost alot of weight. I've read where brain radiation can cause this although for us it has been an ongoing thing. Welcome to the boards, they are a great source of information and encouragement. We live in Virginia Beach, are you all near by?

Keeping the Faith,

Mary

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Welcome! Sorry you have to be here but it is a good place to be! if need to be!

Attitude is have the battle & willingness to fight!

I was told of my DX NSCLC also to lymth nodes a week after I had signed up for retirerment! I went down hill fast! was on oxygen 7/24 But I said I didn't Retire to Dye of CANCER!!!!!!

I had 4 treatments of taxol & carbo & have improve immensely!!! off of oxygen completely!!!!

My Hubby is my care givver & he did a TERRIFIC!!! job!!! He wasn't about to let me give up!!!!

I sometimes think it is harder for the caregivvers than the person with cancer! CAuse as my hubby said he felt so helpless!

Hang in there!!!

((((( hugs))))

Estelle

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Guest Terry Smith

You guys are all so great! I appreciate all the love and concern you have expressed. As for surgery, they didn't suggest is because he had too many mets to the brain. He has 7 mets, 2 in the temporal lobe, 2 in parietal lobe, in some ventricles and in the brain stem. Also Gamma Knife was out of the question because of the number and size of the brain mets. We go back Friday for his first CT scan since starting Chemo and we're just praying that the Carbo/Taxotere is doing it's job! He seems to be going down so fast and that frightens me so.

He can't remeber the smallest things. He went for an appointment for Social Security Disability and called me at work crying. He couldn't remember our anniversay or his daughters birthday. That BROKE my heart! I agree his denial is a saftey net for him right now. I don't want him to know the stats because they are bull as far as I'm concerned, I guess I just want him to take some interests in what they are doing to him and giving him. I can take care of everything I just want him to fight and I guess to me, having all the information is a way of making the best decisions on how to fight this terrible disease. He laughs at that, My job is in Information Systems. Private joke if you don't know what that is :lol: .

I have been to all those crazy sites about stats and forbid myself to look anymore. From now on I only go to those with useful information

As of yet, this is the best I've found. Sometimes you just need a sympathetic ear and to know that someone else knows what your going through and they care. Thank you all so much. Please stay in touch as I will check in as often as possible.

My love and prayers go out to all of you!

Terry

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Guest Terry Smith

Hi Mary,

Steve and I live in a small town called Martinsville. If you like racing you've probably heard of it, if you don't like racing, chances are you've never heard of it. Steve is being treated here in our home town. UVA was just to big and uncaring for him. We have a great oncologist here who is very very caring and knowlegeable (sp?). I've called him at all different hours of the day and night and he's always there. We are blessed for having him.

Terry

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Guest

Terry, I am so sorry that your husband was dx'd with LC. I would like to welcome you here though. Have faith and keep up the hope. I am praying for your husband.

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Guest

Hello Friends,

Steve and I had some good news today. For the last week I've been giving him Neuprogen shots because his white cell count was really low. He went for his blood work today, and NO MORE SHOTS!!!! Yeyyyyyyyy :D Blood counts are back to normal. He's going for his CT scan Friday, I'm praying for more good news.

Keeping you all in my prayers,

Terry

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Hello to all,

Sad to have to meet this way.... however nice to have others to talk to. My fathers ordeal started with a "small spot" on a xray .... they told him it might be valley fever (common in AZ) A visit with a lung spec. said yes you have a large mass (4cc) however it doesn't look like cancer, your lymph nodes look great. We will biop it and see what we find. That has now turned into Stage 2 maybe 3 Non Small cell Lung Cancer.

WOW!

My husband and I have planed for years to move to AZ after he retires from the Navy. Well March 31 we completed our 20+ yrs and moved to AZ to be closer to family. I don't know why this ton of bricks has been trown at us. I can see from this forum..... others have are dealing with the same bricks. (stupid bricks)

Where are we now and what do we do next? The Lung Dr. ...... say's that they are tring to find a surgon to maybe cut out the infected lung..... if they open him up and find to much cancer or cancer infected lymph nodes.... they aren't goint to cut out anything. Well why is that? Today is May 7th he was giving opperation date of May 20th ...... why is it so far away? Why do Dr.'s move so slow? My Dad doesn't even have an Cancer Dr. as of yet...... Are there any good Dr.'s in AZ that really care about saving people?

I see in this forum.... that people of all stages can fight and beat this cancer fingers crossed, lots of prays to God I can be one of those people that who say "my dad beat cancer".

Thank you everyone, michelle

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Michelle,

I am sorry to hear about your father. It does seem like things crawl, especially when you are waiting for action to be taken, and all your heart wants is for this to be fixed and cured NOW!!!

Has your father had any tests other than the biopsy and x-ray. A CT scan or PET scan should be able to identify whether the cancer has spread to lymph nodes or other areas. Usually a stage 2 or 3 means it's spread outside the originial lung, so they may be having the surgery later to run more tests to make sure surgery is a viable option. If so, that is great because there are so many people here that are surviving long times after surgery. DavidA, has had a lung removed and has been cancer free for 26 years (is that right David?). Non Small Cell Lung Cancer is generally a slower growing cancer, so the doctors are probably comfortable with taking the time. But if you are not comfortable with the time schedule, then I would suggest you call and put some pressure on.

One of the things people here will tell you is to take charge of your father's treatment. All Cancer warriors need to personalize and impower their own treatment and know what is going on, and have a say in it. However, sometimes the diagnosis and the symptom of cancer can have a crippling effect on the patient, and they will need an advocate, someone to fight in their corner for them. If your father is comfortable with it, get involved, call the doctors and question them on what they are doing, why they are doing, and when. Bring the doctor information you find and ask him about other options and ask for explanations. He really is there for you and your father, he is your employee, and if you don't like how he is responding to you or your father, fire him and get another one.

My husband has been through 3 doctors already. Eventually you will find the one that fits your needs and is caring, compassionate, and determined to win this fight.

You, your father, and your family are in my prayers

Carleen

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Hi Michele,

As Carleen has pointed out, your husband needs to be Staged correctly. If a surgeon goes in to take out the tumor and doesn't know what he is getting into, he can cause further spread of the cancer. YOU NEED AN ONCOLOGIST to call the shots. Most Staging can be acheived after the patient has CTs, MRIs, PET scan and either a biopsy or a bronchsomething to tell what the actual cancer is. SCLC or NSCLC squamous cell, adenocercinoma or large cell. The doctors HAVE to know this before proceeding.

The MOST IMPORTANT DECISION a cancer patient makes is the choice of doctor(s)! Don't let this doctor open him up to take a fishing excursion!!!!!!!! NO NO NONOOOO!!!!!!!! Once he is Staged you need to find a thoracic surgeon who has performed MANY of these surgeries. Go to a Cancer Center. There MUST be one in the PHX area!!!

JudyB

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