Linking you to resources and support in the lung cancer community!
I would really like to hear from "the group" on this one. November 2007 diagnosed with stage IA NSCLC. Right lower lobe removed. Great recovery. Several times reassured I needed no further therapy ( meaning chemo or radiation). Go about my life, enjoy. Started getting a backache in November of 2011. After all the usual round about medical suggestions. Diagnosed in may 2012 stage 3B. Went into surgery with hopes of more removal but no such luck. Cancer is on spine and chest wall. Not removeable parts. So NOW I'm on chemo. Has any one been in the same boat, have an opinion, been treated differently I would love to hear from all of you. Hugs and stuff to all. Deva
It's so hard when this kind of thing happens because it leaves everyone wondering "what if?" My mom, too, had a lobectomy and was told no chemo was necessary. It was 1995 so quite some time ago. In any event, a year and a half later, the cancer had spread to her bone.
Here's what researchers have found about chemotherapy in early stage lung cancer: In stage 1b, it is thought that there might be a "borderline" benefit but each doctor ends up making his/her decision based on other factors. In stage 1a, it does not appear that there is a benefit but that chemo might cause harm. What that means is, chemo is more likely to have a negative result than a positive one. Chemo has a lot of nasty side effects, as you know, and some that are potentially life-threatening. If a doctor decided that chemo would do more harm than good (statistically speaking), they won't want to give it to you. That's what was found in studies giving chemo to post-surgical stage 1a folks.
Have they tested the tumor for mutations? What chemo are you on?
Well Amy this is my 3rd attempt to reply. First and foremost thank you for this sight and your dedication to it/us! I do not have the mutation. Started 2 weeks radiation July 2011, followed by Carbo (which they stopped 3 weeks ago) Avastin and Alimta every three weeks. With my first diagnosis (1A) I went to the oncologist 4 times and each time he reassured me that I was fine and no further treatment was necessary. That said, I was "one of those" people who swore I would NEVER have chemo. Each time I left his office, I had a sick feeling. I have never felt so STRONGLY about something. I do not blame the Dr. at all, he provides treatment based on statistics/studies/recommendations/insurance approval (all of the aforementioned and more) and I know patients cannot be treated based on gut feelings, however, for the future of those that will unfortunately be joining the lung cancer community, I feel this is worth revisiting!!! Breast cancer patients have found great success with chemo and or radiation after surgical removal - not lung cancer patients? "In addition, if you could guide me to sights that show the study results I would be ever so grateful. Hoping this is not coming to you for the 3rd time - the reply button has just shown hours of turning and turning. May the day find you well - Hugs and stuff - Me
Here are some links to some of the studies that determined this recommendation and articles that discussed the findings:
http://www.cancer.gov/cancertopics/pdq/treatment/non-small-cell-lun... (Scroll down to adjuvant chemotherapy)
Here is an example of where this might be different and a stage 1a might be recommended chemo: http://www.docguide.com/adjuvant-chemotherapy-changes-lung-cancer-g... If the margins of the tumor are clear, then it's not recommended, but if the margins are positive, chemo might be recommended.
Regarding the comparison to breast cancer - yes, breast cancer patients who have particularly aggressive or invasive breast cancers, but if it doesn't have aggressive/invasive characteristics and the tumor is small, chemo isn't always recommended in the case of breast cancer. But keep in mind all cancers act differently so you can't really compare treatment of one to another.
Hope that helps.
I was diagnose with stage lll B NSCLC in Jan, 3rd 2008. Right upper lobe removed on Jan, 15th 2008. No signs of spreading ,but had a second tumor in the same lobe. Anyhow went thru 4 rounds of chemo following surgery. Four years later no sign of cancer. I believe chemo following surgery is of great benefit . How do they know if a stray cancer cell has not broke loose and is growing and to small to see. Chemo would kill that cell or cells before they grow and spread.
That second tumor was a sign that the cancer had potentially spread, even if it was within the same lobe. Did your doctor tell you how large the tumors were or if the margins were clear? Those are some of the ways doctors get a sense of whether a tumor has likely spread or not. It's definitely not an exact science, though, and lots of recommendations are based on statistics. We all know how statistics can sometimes not be very precise, unfortunately!
Hi Amy thanks for the reply. One tumor was about 2 inches and the other was about half that. Margins were clear and no signs in lymph nodes, I have gone in every three month for the last 4 years to get scans of one type or another and all has been clear. So now I am going to go for a scan every 6 months. It is true the cancer had spread in the same lobe but not beyond as far as we can tell. We all know it can pop up anytime,but so far I am clear as best they can tell. Thanks Kenny
Good Morning and Kenny - So sorry it has taken so long to get back but for some reason I cannot post a reply from either my I Pad or I Phone??? Now that I am back at my computer I will tell you what I have run across. Amy with the links you have given me, if you dig very deep into the studies you will find that on 1A the verdict is really still out. IIA Seems to have an increased OS rate. I still believe and always will that chemo with IA should be given as a precautionary after surgical removal. I do realize that the effects of chemo need to be weighed, but that said I am not changing my mind and certainly hope that the issue is revisited. The ABC new article referenced that IA has about a 50% chance of returning after surgery. In my mind that constitutes a significant number of individuals that could have benefitted from chemo. 4 years later I am on chemo and radiation and my prognosis is not that promising. Given the choice I would have been VERY onboard with trying chemo at stage I. At least I would be sitting here now feeling like everything possible was done. Health, wellness and happiness to all. Hugs and stuff - Deva
I'm sorry you are having problems with posting responses. I just tried with my iphone and it seemed okay so maybe it was a temporary problem? Send me an email if you are still having the problem and let me know more about what it looks like.
It's interesting, from what I've seen over the years, the verdict is still out on sooo many things related to cancer. I've seen so many configurations of studies looking chemo before and after surgery, different combinations of chemo compared to others, etc. I don't think I have seen much that has been definitive. I've also seen some of the biggest experts in lung cancer disagree with each other on treatments to use in the same exact scenarios.
I think it is so hard when things don't work out and we start second guessing the choices that were made before. Unfortunately there are never any guarantees. Your doctors really did do everything they could do based on the information they had. It is imperfect information, but it's the best we have now. I know it's small consolation. Ultimately it just stinks when cancer comes back regardless.
Hang in there.
Deva, I posted to you earlier before reading this. I am so with you on this. I believe with all my heart that if I had had chemo in 2007 after my first surgery, especially since I just had a wedge resection that I would not have had the second one. I even requested it and my doctor who by the way was head of Thoracic surgery at the University of Texas and no dummy refused. Now I am going to MD Anderson in Houston and they too do not recommend chemo. Sometimes I think they should listen to the patient's gut belief.
Hi Kenny I see my earlier response did not make it and I appologize, I am having trouble with my "smart devices" (maybe not so smart afterall) I very much appreciate your response and wish continued health and happiness to you. Warm regards, hugs and stuff -
Deva, I was 1B, RLL removed 12/2007. I did have chemo and I think most/all Stage 1 NSCLC should at least be offered chemo. I am NED since my surgery and hope to stay that way. I had 4 rounds of Cisplatin/Navelbine. I was very lucky and sailed through my chemo - not everyone is as lucky. My thoughts going into it were that I could survive 4 months of ANYTHING if it would add even 5% to my 5 year survival-rate probability. That being said, I am not a doctor, nor would I pretend to have any knowledge of LC other that what I have experienced myself. I do think everyone should be able to make the chemo decision with their doctor, and that if it is wanted, it should be given. Good luck to you! Erin
Erin: thanks so very much for your response. I am so very happy you had the option of having chemo. I would really like to hear from more individuals like yourself. I would love for this issue to be revisited. Amy thanks always for your words of encouragement, and should you see more on the radar please keep me informed. Well it's off to appointments. Stay healthy, hopefully and happy - huygs and stuffD