So Scared/Husband diagnosed w/lung cancer that metastasized - Cancer: Lung Message Board

MaryP · 04-08-2002, 10:10 PM

Hi,

I am new here and frantically searching the Internet for information on lung cancer and its prognosis.

My husband, who is 47, but otherwise healthy and has smoked many years, went into the hospital one week two days ago for what we thought was pneumonia, it turned out to be pneumonia, and they found a tumor in his left lung, one on his adrenal gland, and the lung fluid and his heart fluid {He had bloody fluid around the heart sac} were tested and came back as malignant.

His blood ox had dropped and he had to have surgery to put drain tubes in each lung and his heart...he had pleurodesis - one Saturday in the lung with the pneumonia/tumor...and one yesterday on his other lung. They used talc...he was in agony...I feel so helpless and so shocked and so so sad...he is my whole life.

We have been told so many different stories...our heads are spinning...the oncologist saw him yesterday and he had an MRI this morning to see if perhaps it is coming from the brain as they don't believe the tumor in the lung or the tumor on his adrenal gland is causing this. They just DON'T know WHERE the cancer is originating....they said the tumor in his lung is teeny....and the one on his adrenal gland is the size of a quarter..but they, for some reason, do not believe that is where it originated from...so if that is the case...my gosh did it spread and God only knows what the prognosis will be.

He is improving, but he has fevers he cannot shake so they ran blood and urine tests today..he got out of that bed today and walked for the first time....they had put him in a chair a few times...but see he was hooked up w/the three drain tubes...so he could not walk around w/those, and they are out now.

I am scared to death. I am drained and sad and scared and I get ups and downs...I get real up thinking this won't be so bad and he will beat it and get all better...then I get so low - thinking 'the worst'...up and down, down and up...WOW....this IS torture on me and the family - but NOTHING like what he has dealt with...he has it worse than we do. We just feel so helpless.

It is hard enough hearing the cancer is present....but when it has SPREAD...and they don't know WHERE it is originating from....WOW...it is a lot of waiting and wondering...hoping and praying.

I still think the pneumonia was a blessing in disguise as if he never got it - we would not know...and it would be too late when he found out...but it might be too late now...see they are in this major catch 22 here due to his heart...IF that fluid accumulates again...he can die....heart attack, heart failure, etc. So they keep a close eye on it and if it does start to accumulate - they need to drain it again...he cannot handle general again....that was rough on him. He woke up out of general flipping out and they had to tie him down...he has truly been traumatized...he is in a state of disbelief...he told me tonight he wants to get the heck out of there and go back to work and do his chemo weekly...but will he have that chance....we don't know...but he is strong and positive and we are a very positive family...so, we pray and hope for the best and keep his spirits UP.

This is so hard...I just don't have a good feeling about this...I have prepared myself for the worst...but I am holding on to hope...and I will grab anything in between.

He said the pleurodesis was the most painful feeling he ever had in his life and he wanted to die it was so bad...he grabbed on to the bedrails and just cringed in agony...I HATE THAT HE IS SUFFERING...he is too good a man to have to endure that pain.

Well tomorrow we should know the MRI result to see if the cancer is in the brain...God only knows what we will find out tomorrow. There are just so many doctors - 8 - and they are not communicating well w/one another...so I need to ask each of them what the heck is going on and blend it all together and call the oncologist and see when we get the final diagnoses and prognosis.

He was told today he will begin chemo this week...well they did not even stage this yet or give a prognosis...and they don't know when he will be released from the hospital either.

Has anyone had or heard of a similar situation? I worry about his heart with that fluid complicating matters...and the fact that they don't know where the cancer is originating from...why won't they do a PET scan...I need to ask...he is in a small hospital...no a teaching hospital or a cancer hospital. Could I have him transfered to a better hospital perhaps?

Thank You,

Mary

[This message has been edited by MaryP (edited 04-09-2002).]

niecsey · 04-09-2002, 12:47 PM

hi mary just wanted to say hello and i wish you all the love and hope in the world. just wanna wish u and your family a load of luck, take care thinkin off you xxx

Msmary · 04-14-2002, 06:17 PM

Hello Mary,

You and your family will be in my prayers. I know that this is a nightmare for you and your husband. You might want to contact the American Cancer Society to get more information and support. Like many others on this message board, I have been where you are and it is very frightening. Keep the faith there are alot of success stories. Don't give up.

kferg · 04-30-2002, 04:10 PM

Hello Mary,

I have heard of similar situations. My partner was diagnosed in January with stage 4 lung cancer. They did not think the cancer was originating in the lung either but they did a whole body CT Scan. It has been a nightmare since we found out. All of the same emmotiions you are feeling are what we went through. I can tell you that what is happening with the docotrs is normal. But you must ask questions of them and do it often. They seem to forget about us that we are not Doctors and they just make the plans without telling us the small details. My partner was sent for Chemo befor we even knew what for sure she had. She was in such shock that she could not think of the questions to ask. You will need to do it. Ask all of the questions to the doctors that you asked on your message and keep asking until you get an answer!!!!!! It works believe me. They will start talking to you when they you are informed and want to know more. Keep looking on the internet for all of the information you can. I would have your husband taken to a bigger hospital. The University of Utah has the Huntsman Cancer Institute which is Top Notch. They are doing clinical trials now with a drug called Iressa also called ZD - 1839. they have many trials there and have one of the best Oncology staff's in the country. My partner is being treated at the VA Medical Center in Utah and some of the Doctors from the Huntsman Center work with the
Doctors there. Tell the Doctors you want your husband put into the DATA BAse for Clinical Trials. If any come up matching his diagnosis they should let you know. But ask about it!!!!! Chemo has not helped my partner, she is 41. She will begin the trial sometime in May for the Iressa. There are alot of new drugs out there also. I have read that Iressa should be combined with Chemo, the most popular combination that I see is with Gemzar or Cisplatin. I dont think she will be doing the combination, not sure at this point. I wish you all the best. Keep asking questions, and searching for information. There is other research being done in Sweden with Megadoses of Vitamin C. I found it on the Web. Look up Noni Juice, SeaSilver, and Black Salve also.
Best of luck
Kim

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winmar · 05-01-2002, 12:22 AM

Hello-
Let me first say that I pray that your battles with lung cancer are won. It is a very difficult road and I commend you for looking for answers. My Father was diagnosed in April 2001 and died January 17th, 2002. He was stage 4 (never smoked) and it had mets to brain, bone and liver and he also had fliud around his heart. He was not a surgical candidate. He did not have a chance, however, your loved ones may have a chance. As mentioned above, Iressa is promising but you will need to get to a medical facility that can help you in your battle. Start by calling the Cancer Hot Kine, founded by Richard Bloch of H&R Block. He is a 2 time cancer survivor and he will send you free books on fighting cancer that are excellent. Call 800-433-0464 to talk with a cancer survivor or go to [url="http://www.blochcancer.org."]www.blochcancer.org.[/url] In addition, order a PDQ for your husband - this will tell you everything about his disease and how to fight it, clinical trials, ect. I cannot tell you how important it is to arm yourself with as much info as possible. One of the best medical facilities in the nation for cancer treatment is MD Anderson in Houston, TX. If you call there, you can send/fax over your medical records and they will review them and see if they can assist. My prayers are with you at this time and I hope you win this fight. Never give up!!!!