Linking you to resources and support in the lung cancer community!
Good day everyone.
I have posted here many times and have always appreciated the advice I got from everyone. Now I need help with something that has been bothering me from my 1st surgery and now after my second surgery.. Both times all I had was surgery. No chemo, no radiation. It seems that everything I read talks about how you have to fight the good fight and how hard some people do just that. I'm not sure I understand what that means and I really don't know how I am supposed to fight. I feel guilty that so many of you have to endure so much and all I have had is surgery, although that is nasty enough most all of you have had that plus a miriad of other treatments and side effects. I was told that the chances of me growing a 3rd cancer is high but noone told me how to fight that or if it would even do any good to do anything. I feel like I should be doing something but don't know what to fight!!. I am taking a lot of supplements and try to eat organic. I use only green products in my home and do a lot of research but still I don't feel I am fighting the good fight. Have any of you experienced anything like this. My cancers were 1A the first time and 1B the second.
Hi jc, it's good to hear from you again. Sounds like you are going through a hard time emotionally right now. We all have those and it's good to be able to talk to people who have been through the same or similar issues. It sounds to me like you are fighting the battle exactly the way you should. The only thing we can all do is live a healthy lifestyle and keep up the positive attitude. Don't feel guilty at all. We all have a hard time with this dreaded disease. Some have it harder than others, but it's not easy for anyone. Hang in there and keep doing what you are doing. Good luck, God bless and keep the faith...
Hey jc: Think we've all pretty much been in your spot at one time or another. Might I suggest you get 'pushy' with your docs and tell them you want to know why they have decided no other treatment modalities are appropriate for you. You have every right to know what their reasoning is so you can make necessary decisions for yourself. You may find you want a 2d or even 3d opinion from a different treatment center. Investigate clinical trials (most will 'interview' you online and can tell whether or not your situation would qualify, without an actual visit).
From your chair, all is fair game........anyone not being completely forthcoming with you should be questioned strongly.
I had to 'fire' one of my docs for not telling me everything........now have one who tells all.....plus some!!
Stay strong and keep your faith..........
A few things come to mind:
1. You *are* still fighting this by making lifestyle changes aimed at keeping you healthy. You are being vigilant about follow up, getting support and doing some research. So you are definitely doing something and absolutely fighting the good fight.
2. It might be worth checking to see if there are any clinical trials aimed at preventing recurrence. There aren't as many trials related to prevention as there are to treatment but there are generally things out there. You might call the Lung Cancer Clinical Trials Matching Service at 1-800-698-0931 to see if they have any in their databases for someone who is looking at recurrence prevention.
Ask for a treatment option. Get a second opinion! Ask about chemo.
You have already begun fighting by posting here, asking questions! As some one who's life was saved by it, I can't recommend strongly enough that you get a second opinion. From the moment I heard the words, "the standard treatments aren't going to help you" (NSCLC, 3b), I KNEW I had a fight on my hands.
Although the second opinion and recommendation (made by a team of 5 doctors) was the right one--which was to go with one of the standard protocols (NSD after 5 years, 3 months), it was a fight all the way. And to some extent, it still seems like it is. For instance, they were going to stop scans altogether after 5 years. Reasoning that since I was susceptible once, I could well still be open to another tumor, I insisted that the scans not be stopped totally, and am now on a regimen of a CT can annually.
So you are right--you have to fight, and the first punch should be to get that second opinion!
After a terminal (2/3 months) small cell lung cancer diagnosis in 1993 and another of non small cell in 2007 I followed an exercise regime which has consistently given me a good quality of life.
I am a founder member of our local support group, where our top 7 survivors all take regular exercise.
I found these enlightening studies-
Patients with advanced cancer suffer from cachexia, a condition also called body-wasting or wasting syndrome, which causes significant weight loss, extreme fatigue and reduces quality of life. A study shows that higher levels of cancer-related fatigue coincide with lower levels of muscle mass. For this study, the fatigue levels, muscle mass and strength of 84 patients with newly diagnosed and inoperable lung cancer were assessed. Handgrip and quadricep strength were determined using muscle strength tests, and skeletal muscle mass was calculated using X-rays. These measures were then compared to a "brief fatigue inventory” which was found to be positively associated with body mass, weight loss, anaemia, activity level, pain, and depression. All advanced cancer patients suffer from this type of fatigue.” The study hopes these findings will encourage hospitals and health centres to launch specialized strength or aerobics training programs that can improve muscle mass among cancer patients.
And another excellent site I found is-
Hope this helps?
I had my right bottom lobe removed Dec. 9,2010. I have not recieved any treatment either. The surgeon said the margins were clear. Something happened that he did not send lymph nodes to pathalogy. (weird) He said they were neg. but pathaogy did not get anything. I just had pet scan ( I had a bright spot on middle lobe) but is has not grown. Thank God. Please keep the faith. That is what I am trying to do.
Fight a good fight? Well for me doing chores, getting up, remembering things and getting things done. Distractions from what is really going on is how i believe to fight a good fight.
It sounds like you are fighting. We are all different with different issues.
I too had surgery with no treatment after. Like you, I try to eat right, take supplements and try to just make little changes. Sometimes when I read these, I too feel like "why am I here, I don't have the chemo or radiation concerns" but we all belong here.We might just have an answer to help someone else or ourselves. I'm still fighting the urge to smoke.
Hi there Kathy,
Please do keep fighting the urge to smoke. I think if God would have ment for us to blow spoke out of our mouths he would have made us that way. yep. I know when I smoked I coughed like everything trying to learn how to learn how to inhale. Boy was I cool. I was a kid. yep.. I had bronchitus for years after and kept smoking I went on nicotine gum for at least 20 some years. Then I went on the patch a few weeks and then I was nicotine free. That has been about 2 yrs.. now. I have not had chemo or radiation either. So far the spot on my right middle lung has not grown. Thank God. We just need to take it day by day by day by day. Please do not smoke my dear. I know I used to look so sexie blowing that smoke out of my mouth llike a dragon. ( not really I was in high school and thought it was pretty cool) Now I have had lung cancer, copd, and emphazima. Sure am glad I smoked. (NOT) Take care my dear and keep the faith.