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Non small cell inoperable

Diane03
Posts: 42
Joined: Jun 2008

I was diagnosed in May. Stage 4 mestatic lung cancer. I'd love to hear from someone that has a similar diagnosis to see how they are coping.
I've had 2 weeks of radiation to try and shrink it so I can breath. It's wrapped around my pulmonary and carotid arteries. I am now having chemo. I'm not sure what to expect. I know it can not be cured. I can't bring myself to ask the
"prognosis" question. It's all based on statistics.
Thanks for reading.

cabbott
Posts: 1048
Joined: Aug 2006

I have been told that how we cope with a cancer diagnosis depends more on the person than on the extent and seriousness of the cancer. I was diagnosed in my mid 40's with stage one breast cancer and was so scared I could hardly breathe. For days on end. It was a nightmare and I couldn't get away from it day or night. Since then I have had operations for ovarian cancer--turned out to be a false alarm, and for what they were sure was stage 4 breast cancer mets to the lung that turned out to be stage one lung cancer. I almost forgot the biopsy for breat cancer reoccurance on the other side that had to be postponed half-way into the procedure because the specialist decided it was just too small and would have to grow more so he could hit the target. We are still waiting for that problem to be resolved, but I've stopped staring up at the ceiling every night wondering if it is big enough yet, now that it has been 5 years. No, I don't have what you have, but I sure have had lots of opportunites to "cope". I'm not so good at it, but I have tried to learn something from all the folks I have met here and survivors I have met at home. Cancer is serious. Stage 4 cancer is nasty stuff. But some folks I've met have lived a long time with stage 4 cancer. One lady with stage 4 breast cancer that I met in person told me that she was diagnosed with stage 4 and given two months tops to live when her baby was 4 months old and she was in her 20's. When I met her, she had given birth to another son who was now turning age 18. She had been through chemo not once but 5 times, so I wouldn't say it was a breeze, but she was alive and enjoying life anyways. She shared her tips with me. First of all, pick the best clinic that is the most up to date on cancer treatment that you can find. University clinics are often the most knowledgeable. Next, make sure you are comfortable with your doctor's philosophy and treatment plan. You want to make sure that you are both in aggreement in how aggressive you want to be in treating the cancer. It is your choice on how aggressive you want to be. Chemo works for some folks, no doubt, but some forms of it can make life difficult. Sometimes the stats are against you, but even if only 1 out of 10 folks is cured by a particular treatment plan, who is to say you wouldn't be the one? Some folks would rather not go through chemo. That is a valid choice too. There is something called "pallative treatment" where doctors work to make sure you are not in pain and that what time you have is as good as they can make it without trying to stop the cancer from progressing. There are no wrong choices, but there are choices that would be wrong for you. Another friend of mine was told by her doctor to get everything in order. She said that it was depressing to have to update her will and get those things done, but after she did so she felt considerably less stressed. She knew she had done her best to take care of her kids and her husband and that gave her the peace of mind to take care of herself. She didn't stop fighting the cancer or living life, but she did get ready just in case things got serious quickly. Prayer helps too. In my case, I just don't cope all that well, but I figure God can handle it. That's what works for me. I am thinking of you.

Diane03
Posts: 42
Joined: Jun 2008

Thank you so much for the words of wisdom. I have been working on getting things in order. It's ironic, I work for University of Miami, which is a cancer research teaching facility. Unfortunately, I am removed from the main campus and didn't feel comfortable going there for my treatment. I opted for a group of physicians that I have known, by reputation,for a long time.
A new set of scans should be done after my next chemo, scheduled at the end of July. I will know more about the total treatment plan at that time.
I read many of the postings in this website. They keep me going.
As you said, "cope" is to do what you have to do.
Thank you for taking the time to write. It was really appreciated.
Regards

jagged
Posts: 55
Joined: Apr 2008

I too have Stage IV inoperable cancer, except it is a cancer of unknown primary (CUPS), currently in both lungs and brain.

There is absolutely no 'right' way to cope. This is very individual. It depends on medical surcumstances, money, and it depends on beliefs.

For me, coping has been difficult at times. Moving out of denial and grieving was a critical step (although my thoughts still move in and out of denial). I had a few bad weeks of doom and gloom, and used that time to update my will, make funeral arrangements, assess my options, and grieve.

I found, yes, I am afraid to die, but I am more afraid of how I die. I have been through various cancer treatments. My option now is to take what to me is unacceptable treatment and "maybe" gain a year. Or, I am otherwise very healthy, stop treatment and hope my immune system takes care of things. Either way, I am not getting out of this alive.

I work with the Dr to monitor if any pallative care is needed. I took a leave of absents at work and am spending my husbands inheritence. ;) I got a new puppy (a great distraction), am doing a little travel, and just playing. All this until either the cancer gets me down or I go back to work. In dieing, I know now what is important to me, so I don't spend as much time dwelling on death. What will be, will be. And, so far, this works.

I don't know if this helps you to sort through how you will cope. Answering this type of question is a great way to help me cope. Thank you.

I would love to hear how you progress in this journey. Please do drop me an email sometime. I wish you the best.

Jo

Diane03
Posts: 42
Joined: Jun 2008

Hi Jo-
Thank you for your thoughts. I am going through the steps of chemo, but still disassociate myself (deep inside) as the person with cancer. I did complete my living will, but have yet to see an attorney and have a belongings will drawn up. I think that's hard for me becasue I have to face the pain this is causing on my family.
Funny you should mention that you have an unknown pirmary. The biopsy of the tumor on my adrenol gland is that the primary site is intestinal or stomacy. All of the scans in that region come back clean. So my Dr is saying the lung has to be the primary.
I am a widower with 3 beautiful adult daughters. They, as well as my Mother and siblings, have bee extremely supportive.
I am not afraid of dying. My philosophy has always been that as long as you're learning lessons, you're living. Maybe this has happened to me to teach someone close to me a lesson that is of importance to them. Sounds weird I know.
Unfortunately, I am unable to take time from work as my finances are tight.
I do plan on taking a trip up north during the Fall though. That is my favorite season. I live in Florida (this is where my family is) and miss the seasons terribly.
I'm not that far into treatment, but think about having a good quality of life for whatever time I have left. The chemo makes me sick for 1.5 weeks. I start getting back to being able to walk around the malls and it's chemo time again. I know I have to give it more time. The doctor just changed my meds becasue I had a reaction to 1 of the drugs. So, it's a less aggressive therapy beginning 7/25.
You're right, just sharing thoughts helps you cope.
I hope you're doing well.
Be safe
Diane

I tried using the envelope to e-mial, but I couldn't find your name in the directory.

jagged
Posts: 55
Joined: Apr 2008

Diane,

I hear you on the disassociation from the cancer. Especially when I feel good. It is just so unreal at times. Unfortunately, I have had three years of treatment to come to terms with the fact it is there. Now every time I sneeze I think it is the cancer.

Regarding your tumor markings showing the primary being intestinal or stomach and your Dr says it must be lung cancer. Ask him why he thinks this is lung cancer and suggest a second opinion (people get second opinions all the time). You want to get this primary right. Treatment drugs are taylored to specific types of cancer. In CUPS (cancer of unknown primary) the cancer at the primary site dies off after some cancer cells break off and stay in your body.

I hope that your work is understanding of what you are going through. There are good days, but definatly bad. There is a program called FMLA (Family Medical Leave of Absence) where on bad days, you can take the time off without pay, and be guareenteed to not lose your job. It has helped me and others I know.

I live in the Seattle Washington area with my husband. My kids are the cats, birds, and new puppy. Talk about a handful. I love both Fall and Spring and this Summer's not to bad too. ;)

I tryed to find you in the email on this site also. No luck. Here's my personal email: JAGGEDLNS@yahoo.com. I can't find my web page to share. Somethings on this site are just wierd. Better then not.

Jo

Diane03
Posts: 42
Joined: Jun 2008

Just checking. I haven't been on the computer much. I come home from work, feed and walk the dog, and I'm done for the day.
I just got back from my mom's house. She was hit by tornados from the tropical storm Fay. Unfortunately, her home was totaled.
I sit here feeling a pity party bacause I am unable to help her like I used to- physically that is.
Anyway, I'm still having chemo. No mention of follow up scans yet. I'm anxious to know whether or not all of this chemo is making a difference.
I hope all is well in your home-
Be safe-
Diane

jagged
Posts: 55
Joined: Apr 2008

Hi Diane.

It is so nice to hear from you. I thought I lost everyone on the web site. I am technically savey, but have yet to understand the changes they made. :(

Thank's for the update. Hope things work out for your mom. I would like to hear when you get the scan, too.

Well, my cancer didn't go away like I wanted it to. Found a few more spots, a small one on my kneck. I see the Dr tomorrow. We may radiate. I would hate to die from starvation.

Actually, otherwise, things are still going well here too.

Thanks for the note.

--jag

shannalanai
Posts: 22
Joined: Jun 2008

Never give up hope. The doctor's are not always right. The statistics aren't always right. Everyone is different and everyone's body responds differently. I have known several people who have been given a year or less to live and are still going. Ex one: My mom's friend was diagnosed with cancer and told she had a couple of months. Her doctor didn't even see a reason to try so she went to another doctor. That was 15 years ago and she is doing great and cancer free. One of my friend's little boy was diagnosed with a rare cancer that was stage IV and told her that he would have less than a year. She chose not to give up. That was almost 3 years ago and he has beat it twice since then and is out there playing baseball. My friend's mother had stage IV breast cancer. They gave her 6-12 months.That was 2 years ago and she is doing great today and in remission. Hang in there. Don't give up hope. You are in my thoughts and prayers.

sharonbu
Posts: 1
Joined: Aug 2008

hi.
My name is Sharon,nice to meet you.My mom has adencarsinoma in her lung.She is now finished treatment.Now we sit and wait.I wanted to ask the doctor how long.But I did't want to ask him in front of her.The stories you have are good to here.We had a ittle scare thinking it was back.But shes ok we have an appointment for another scan in Sept.I will be sure to tell mom of your stories
thanks
sharon

hoppy2
Posts: 10
Joined: May 2008

My husband was diagnosed April 28 of stage IV non-small squamous cell lung cancer. PET scan showed cancer in the abdomen and adrenal gland. Surgeon could not operate on the tumor in the lung without jeopardizing the other lung. He had 4 cycles of chemo when he had a scan that suggested his pnemonia is back for the third time, that is how we found out about the cancer. He is off chemo and taking antibiotics. He will be starting a different chemo after the pnemonia is cleared. I set this account up him, but have not had the time to show him. He is definitely NOT a computer person. He always said he tries to stay away from computers :) I am hoping that maybe he will try it.
REMEMBER everyone is different,everyone will respond differently to chemo therapy. He seemed to do better than some with his chemo. They did have to lower the dose of one of the drugs because his platelet count plummeted. As time went on he did get tired quite easily. Now with the pnemonia he gets tired alot. Lately his spirits are low, where before he was in good spirits. My daughters father-in-law had an awful time with chemo. He may have been (most likely) on different drugs.
His doc told him that if one type of chemo drug does not work that there are others to use and not everyone responds to the same drugs the same. I have not heard anyone on this discussion talk about what chemo drugs they are taking.
Thanks for listening

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