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It just keeps getting worse...and more news that I didn't want to hear

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

After the scope and they confirmed that the "nodule" was a tumor, they also wanted Steve to see a pulmanologist (sp?) which we did yesterday. After he looked at Steve's CT, he says...you have a collapsed lung with fluid around it and there is not much that I can do beccause your case is so complicated with the lung ca...i menan cancer, you need to see a specialist that deals with that....ok, well up to this point there was no mention of anything with his lungs, i know that with the spots on his liver, it's a possibility...why are they all dancing around this? We have an appt. with our family Dr. today and I am going to demand they tekk us what is going on! I saw a change in my husband after that appt. yesterday that frankly, I didn't like. He seemd to be doing better and was having a somewhat positive attitude about this, but now he seems different. I guess I would to. I just have to take one day at a time and I know that, but it's not gonna be easy.

Chris

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Chirs,
Sorry you are both having a rough time with this right now. This is just one bump in the road. I feel it is time for you to get another opinion. Find a cancer center that does specialize in lung cancer. If you are both unhappy with these drs., get new ones. The American Cancer Society should be able to help you find other cancer specialists in your area.

As hard as it is....stay positive, keep your faith, and continue to fight. You will both remain in my prayers. Keep us updated.

God Bless,
Tina

oriontj
Posts: 390
Joined: Jul 2009

You have a right to know everything...My husband has not asked the drs how long etc..what's next...he said he will when he has to .. but you need to be informed...not knowing is a spirit killer because you don't know what to battle...you can't fight what you don't know..I'm basically a realist..all of us are different..but find out what's going on for your peace of mind.

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

I talked to our primary care Dr. She said she thought I was out of the loop on what was going on. She basically said that there is a 99% chance the spots on his liver are cancer and that the fluid around his lung is probably due to the cancer. She said that she spoke with an oncologist after she saw the Ct and they even said that there is not much that can be done. She also said that Steve told her if it was cancer he just wanted to be comfortable. She siad she will do whatever test that Steve wants to do, but she honestly thinks this is the begining of the end. I feel as though I am dying inside. In the back of my head I knew it, but now, its a reality. My husband is going to die, and some how i have to be ok with that. I don't know how! We had so many plans and some many more Sturgis trips to take. This is just not fair.

Chris

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

I am glad though that you got some answers finally. I am surprised though that they are saying all this without KNOWING that those spots are cancer or that the fluid if from cancer. I mean, there are tests to find all these things out.

As for how you do this part of the journey, I don't know. I have wondered if we got there...how do you do it? But I do know that God will carry you when you are too weak to do it. He will send you people and situations that help you.

You are in my prayers...and will be always.

Betty

chrisk06's picture
chrisk06
Posts: 114
Joined: Nov 2009

Betty,

I asked my self the same question of how they can say tis without more test. I guess it's the CT results and the symptoms. He has lost almost 100 pouunds since Feb. and at least 50 of that since surgery. I hope they do a PET and see it's nothing, but I know it's something. I have that gut feeling. I've had it for a while. Keep praying. Thank you!

Chris

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Chris,
I am so sorry you have had such a bad time and lack of information. I feel that there should be more tests before all these conclusions are reached and maybe a PET scan also. I will keep you and your husband in my prayers, I pray for all on this board everyday. I don't know what to say about the possibility of the journey you may undertake. I have tried to prepare my husband for unexpected turns esp with my surgery coming up, but he doesn't want to hear it. It is hard for the patient and sometimes I think harder for the caregivers when so much seems to go wrong. Prayers always,
Donna70

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi Chris, Big hugs to you and your husband. You have been so strong throughout this whole situation. I still feel a second opinion is in order. Definitely have the p e t scan. They show more detail than the ct scans. My heart aches for you. Hope you have a good support team near you. I told my dad that he can not give up until the drs say he is terminal, and there is nothing else they can do for him. Until then he must fight. We have that agreement. Do not give up hope yet. Hang tuff, and keep us updated.
Tina

MAE66
Posts: 70
Joined: Nov 2009

I don't have any great advice to give you. Know that I am thinking and praying for you and your husband. I think you are a great advocate for your husband and you should give yourself a pat on the back.

Susan

MOE58's picture
MOE58
Posts: 649
Joined: May 2009

Chris,

I really don't know what to say other than I will say prayers, and hope for the best, I am not good with words when someone is at the end of the stage. Just do his wishes I haven't walked this road with my husband only my parents.

I am here though if you need me

Lori

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Chris,
Your beloved hubby is lucky to have you by his side---take some comfort in that. It is not or will be---easy--but you will grow because of it. Somehow--God did not want him to be totally alone--. It pains me to think of anyone one suffering--but now since being on this site and my Dad having this EC--it makes it that much more real. Maybe we all can help you soehow---we may be going on this same journey--who knows?

My brother said something to me early on when I asked "How are we all going to make it through this?" He simply said "ONE DAY at A TIME"---it really helped me since I tend to look at all the details AND the BIG picture.....

I keep you , your hubby and all these great EC CSN people in my prayers each nite and early AM when sleep may be elusive>>>
GOd BLess
Kim

oriontj
Posts: 390
Joined: Jul 2009

Chris I feel so bad...I know there is a big possiblity I'll hear those same words one day..I want you to know my thoughts and prayers are with you and Steve..I'm just so sorry and really upset that they kept this from you...my prayers are headed up for the two of you.

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