Another Daddy's Girl

[jdjenkins]

Hi,

I have been visiting this site for a couple of months now and have found it so helpful. I thought I would finally introduce myself.

My Dad was dx with Stage IV NSCLC in October of '04. At the time he had one tumor in his right lung (very large) and one brain met. He has always been so healthy the news just shocked my family. We decided to go to the University of MN Cancer Center and have received very good care. Back in January we met with surgeon who agreed to operate. My Dad's oncologist didn't seem to agree with the surgeon. He thought my Dad's cancer had spread to far and surgery would delay treatment further. He would not be able to start chemo for awhile.

Next is what keeps me up at night wondering if we did the right thing. I called oncologist and told him we were getting the feeling he was not in agreement with the surgeon and asked why. He said my Dad would most likely have to have whole lung removed and he felt it was a risky operation. I told him my family wanted my father to have the best care and be able to enjoy the time he had left with us.

Well the next appt. the oncologist came in and told us we were going to have 7 weeks of chemo and radiation instead of surgery. He told my Dad that this treatment was just as good as surgery and we could always come back to surgery. I called the surgeon myself to ask if he agreed with this decision. He said yes, but I suppose they all stick together.

Well after seven weeks of chemo and radiation the tumor only shrunk 35% and my Dad developed non-maligant fluid around his lung from all the scare tissue from radiation. He had to have a tube put in to drain fluid. His latest PET showed active tumor in right lung and one lymph node lite up. Now oncologist says no surgery.

I'm just beating myself up for not pushing the surgery in January. I feel if my Dad does not make it I will always wonder if I missed his chance for a cure.

What makes matters worse is that my Dad has relied on me for everything since dx. He is suffering from great depression and aniexty (long family history, but ok until got dx.). He is unable to make decision and does not want to read or learn anything about lung cancer. I have tried to get him to support groups, but he will not go. He is on Zoloft and Ativan for aniexty, but still does not enjoy any part of life. It breaks my heart to see him like this. He wants to sit around and wait for the doctor to cure him.

My Dad was a wonderful husband, father, and grandfather before dx. My eight year old is always asking me when Grandpa is going to be done with Cancer so they can golf and play hockey together again.

I have taken my Dad to every doctor appt., chemo treatment, and radiation appt. I'm so fortunate to be able to help him so much during this terrible time, yet I feel so helpless. I would do anything to help my Dad enjoy just one day again.

He is currently taking Avastin and Alimta. This treatment has really hit him hard. He has become very weak. We have a scan next week to see if it is working. I keep praying for a miracle.

He had a brain MRI this week and I'm happy to report he is part of the "empty head club".

I was wondering if we should have the lymph node tested to see if it is really cancer. If not maybe we could still pursue surgery.

Thanks for listening to my story. Your posts have helped me so much over the last couple of months. I will keep reading.

Denise

[Don Wood]

Welcome! If I read your post correctly, your dad had a brain met in addition to the tumor in his lung. If this is so, then the cancer had already spread from the lung, and it doesn't matter whether the lymph node was clear or not, as far as surgery not being an option. No course of action is guaranteed -- one has to go with what one knows, and not second guess after the decision is made.

You are a great help to your dad. Continue to do so. I am glad you are able to do so much for him. Remember that there are many here who can attest to a good life after diagnosis and treatment. Don

[Connie B]

Hi Denise,

Sorry you had the need to find us, but I'm glad you did.

Who is your dad's Onc Doc? Dr. Dudek by chance? If so, he's one of the BEST! Dr Dudek is VERY dedicated to lung cancer patients, and he knows all the ins and outs of lung cancer. And if it's NOT Dr. Dudek, then your dad is STILL in good hands at the U of M. I'm guessing this is Minnesota???? Maybe not??!?! Then if not, then I have no clue which state you might be in.

I am VERY surprised to hear anyone would do surgery on him if he was stage IV! That's just really not heard of. If the cancer has spread to another organ or to the brain, etc., then surgery is not an option. Other then for comfort reasons. But, I never say never, and maybe they had reasons to give it a try.

Don't EVEN start to blame yourself for not doing this that or the other thing. This is a very baffling disease and even at times the doctor's can be somewhat in question to what is best and what might or might not work. There is NO ONE TREATMENT that works when it's a late stage cancer.

Depression and cancer go hand and hand. NOT UNCOMMON!

Drugs are a GOOD THING right now. What ever it takes to get him through the rough spots, then I say, go for it.

I wouldn't be all that concerned with the lymph node. Talk to the Onc Doc and see what he/she thinks. I'm sure they are in tune to all that is going on with your wonderful dad. Just ask them.

I wish you and your dad all the best.

I hope you will continue to hang out here and get some education and support.

Best to you and your dad.

[bunny]

Welcome, though I am so sorry you have to be here. You sound like a dedicated and contientious daughter, you are doing more than enough for your dad. I completely identify with everything you're feeling.

Please don't second guess yourself. You've been vigilant, this disease requires impossible decisions.

I think it's amazing you're doing so much for your dad, as long as its not at TOO great a cost for you. I ran myself nearly into the ground over the last several weeks and I am paying for it now. I have finally trusted others to help look after my mom a bit (it's OK if I stay one of her primary emotional connex) because I HAD to, I was crashing. I had to be willing to TELL others in her life to step up.

All I can tell you is the professionals in my life (my GP, for one) have had to get through to me that no matter what I do, my actions will not change my mother's cancer outcome. All I can do is help her steer the course, support her and keep her comfortable. My doc (who I love) also pointed out yesterday that LC is often a long road, and that if I burn out now I won't be there for whatever comes later. I just wanted to share my experience, in case it's helpful to you.

This place is an amazing source of love, support and information. I'd be truly, truly lost without it. Keep coming to us.

xoxo

amie

[Maryanne]

Hi Denise,

Welcome here. As you can see by all the replies to your post you have absolutely nothing to feel quilty about. The people here all have hands on expiences on what you are going through and the feelings you are having.

Do not second guess yourself, as you have done nothing wrong!!

You dad has a difficult stage and the doctors are doing everything right.

I will send a prayer out to your dad. Keep us posted on this condition. We are always here for you.

Maryanne

[KarHart]

Hi Denise,

Since your father is stage IV, surgery is not likely at all to help. I am speaking from hard experience. My husband had a primary lung tumor and met to the liver. He had surgery on both just a month apart. Within 2 months he had tumors not only back in his liver but now both lungs. He is still recovering from the major surgeries and now is on chemo again. He went thru a lot of pain and time in the hospital for these surgeries. Chances are if we had switched to another chemo (as he is doing now) he may have not had so much progression. So please don't feel bad about him not having surgery. This is only really effective if it is caught in the very earliest stage (which unfortunately is not often). There are a lot of treatment options and hopefully his doctors will be able to find the best ones for your father. It's wonderful he has you to support him as that is one of the most important things he needs now. Good luck to you both.

Karen H

[Patkid]

Denise,

Each day we do the best we can with the info we have at the moment.

You are a loving daughter.

Bless you, now don't waste any enery on anything like the past.

You need it today.

Love

Pat and Brian

[cindi o'h]

Hi Denise!

First I would like to offer a big, warm welcome to you.

And next, I want you not to second guess what has already been done. It is my understanding that doctors do not recommend surgery on someone beyond stage llla. Also, after the chemo and radiation is completed, the pt. is not a surgical candidate regardless of the amount of disease that is or is not present. The rationale being that the lung tissue does not heal properly after it has been "damaged" by the radiation.

To me, it sounds as if you are doing all of the right things. It is not uncommon to find a person who has just been diagnosed with a life-threatening disease and one who has just gone through some grueling therapy to be sitting on their duff! They don't feel good. They feel rotten.

However, you may want to include him in some activites of short duration and little efforts that will reap multiples as far as his spirit goes. I did not want to admit to myself or others that I just had my butt kicked. Maybe he thinks you don't know. Maybe he is trying to be strong for you. Maybe he doesn't want you to know how badly he feels. These are just my thoughts.

Anyway. Short trips. Short amounts of time doing the things that make him happy. BBQ? Trip to the Zoo to watch the dolphins with the grandson? Walk through the Rosegardens by Lake Harriet? Bird watching down by the river? Anything you can think of to get him out. Nature does it for so many of us.

Good luck to you!

And, again. Welcome!

Cindi o'h

[jdjenkins]

Thanks so much for the warm welcome you all have given me. I feel like I know you all so well, I have been reading your posts for so long.

It was comforting to hear that so many of you doubt surgery would have been a good choice for my Dad.

Connie, my Dad's doctor is Dudek. We were lucky enough to get in to see him. He was not taking any new patients and we called him personally and asked for his help. He agreed to see my Dad on his day off. He is a very kind man. It was very reassuring to hear your praises of him. Are you at the UofM also?

Karen, I read that you are fighting the insurance company for payment of Avastin. My Dad has been getting Avastin for 6 weeks now. His insurance just approved it for treatment of lung cancer. He has Atena. You may want to use that information in your fight. Also, my brother works for Genetech the company that makes Avastin. He said that if Dad's insurance didn't work the company sometimes pays for individual cancer treatments. I would check their web site and get in touch with someone. He finds out next week if it is working for him. He has been extremely weak while on this treatment. We are worried if it is desease progression or side effects of treatment.

You all are truely amazing to me. The way you all stay so strong and positive during this ordeal. My Dad is not in a very good place mentally. I have tried everything and I mean everything to get him past this depression. I just don't think I will ever be successful. I won't ever stop trying though.

Thanks for the support.

Denise

[shineladysue]

Hi Denise,

I would just like to welcome you to our family. You have already gotten some very good opinions from some of our most knowledgeable members. I hope you feel better about the choices that have been made for your Dad. It sounds like he has an excellent oncologist . You can't carry the burden yourself, Denise. You have to put your trust in the doctors and trust in their education and experience. We are glad you are here with us. Know that you have my prayers for good results on the scans next week. Looking forward to knowing you better.

God Bless you,

Sue

[richinsdakota]

Yep; welcome. As you can see, this is a great place for info and support. And I agree with the advice above...all we can do, is do the best we can with the decisions we have to make, and then dont beat on ourselves trying to second guess ourselves, etc.. Sounds like u are getting the best treatment possible, so ur doin good. Good luck to all of us...Rich B.

[Don M]

Hi Denise: I would like to add my welcome too. I hope your dad cheers up and that the avastin is working for him.

Don M