LexieCat

Wow, that's frustrating. I don't know a lot about the targeted therapies, but plenty of other people here do, and I'm sure they will have an idea about how to get things moving in the right direction. How are you feeling after your back surgery?

Hi, Susan, and welcome. I'm sorry, too, about your diagnosis. Lung cancer sucks no matter what your age or your smoking history. Like Bridget, my cancer was caught very early because I was in a screening program for longtime smokers. I'd given up smoking a year before my diagnosis. There are, indeed, quite a few long-term survivors here whose cancer was Stage IV. They will be along shortly. Has your tumor been biopsied so you know what type of cancer it is? Do you know if it's been tested for genetic markers that might make you eligible for targeted therapy? Glad you found us--this is a great group of folks and you will find a lot of collective knowledge and support here.

Hi, Kathy, My situation is quite a bit different from yours, but I had to make a decision, too. Although my surgeon was convinced that my cancer (adenocarcinoma, caught by screening) was Stage 1a, the pathologist concluded it was stage 1b, based on his belief that the tumor had invaded the pleura. After a whole big debate at the the tumor board, the pathologist "won," so it was staged 1b. Interestingly, my stage is apparently about the only one without a clear-cut recommendation for further treatment. Chemo is never recommended for 1a, since it's actually been shown to result in worse outcomes than surveillance alone, and with stage 2 or greater there is always a recommendation for either chemo or radiation. But for my stage, ehhhh, nobody really knows what's best. My oncologist laid out all the options, and given the relatively small likelihood chemo would increase my chances of survival or avoiding a recurrence, I chose to pass on the chemo. I'm pretty comfortable with that decision, but there's really no way to know for sure whether I would have been better off with the chemo. But I'm pretty sure that if there were a strong, clear-cut indication that the chemo would be of positive benefit in terms of survival or avoiding a recurrence, I probably would have gone for it. I get your point (as I think we all do) that when faced with a highly aggressive cancer then there is sometimes a point at which quality of life takes precedence over extension of life. But right now it doesn't sound to me like you have enough information to conclude it's only going to be "misery before death." Remember, you can always stop later if that's what seems appropriate. But if you make the decision not to pursue treatment too soon you might really be shortchanging yourself and your chances for many, many healthy years to come. It is, indeed, a very personal decision, but that's how I tend to think about it. Teri

WooHOO!! Sounds to me like some serious celebrating is in order.

Wow, Ray, you're another one who's gone through the wringer with the surgery. Hopefully things start to get easier from here on, even though you will be dealing with the pain and other fun stuff for a while. Hang in there!!

Hi there, and welcome! I had a nodule that was discovered through screening, while it was (fortunately) quite small--when the nodule had grown since the scan the year before, I had a lobectomy (July 10) and I, too, am now on a surveillance protocol. I opted not to have chemo (surgeon was strongly opposed to chemo in my case and my oncologist was neutral, but was just fine with my decision to forego it). I won't have my first post-op CT scan until late November, and I know I'll be nervous, too, even though I'm feeling great and reasonably confident about my decision. Hopefully yours will be good news! Teri

That's TERRIFIC!!! So happy to hear your good news.

I'm so sorry, Larry. I can only imagine how you're feeling. I don't have any good suggestions/advice but wanted to send you a word of support. Those who have been through this drill will be along shortly. Teri

Awesome! So happy for you, Dave!!

Great--you just want to keep an eye on it. With regular scans, if something DOES go bad, they can jump on it right away. That's what happened to me--it was still very small (though slightly larger than before), and the CT/PET showed that nodule as the ONLY thing lighting up--I had my upper left lobe removed, was recovered in no time flat, and don't even have to have chemo or anything--just periodic scans to make sure everything stays happy. When they know what to look for, you can be WAY ahead of the game.

Yay! I'm not sure why you had the CT scan that started this whole thing--was it for a cancer screening? If you're a former smoker or have other significant risk factors, it might be a good idea to have a yearly CT scan to keep an eye on that nodule. One of mine became cancerous a year after I started the annual screenings. If you're NOT at any particular risk for lung cancer, then it's probably just one of those nodules that is sitting there doing no harm and no need to watch it closely. Discuss it with your doctor. But for now, sounds like you're in good shape--be happy!

Hi, Ernest, Lung nodules are not always cancer--they can be scar tissue from an infection or other causes. The PET scan will help determine whether there is suspicious metabolic activity--cancer cells are hyperactive when it comes to using glucose, so the PET scan will show the nodule as "lit up" if there is cancer, and it may also show whether any cancer has spread. The PET scan isn't foolproof, and you might need further tests, like a biopsy, to determine whether it's cancer. I know it's scary, but try not to get ahead of yourself. If it IS cancer, and it's a very small tumor, it may be quite treatable. I just had the upper left lobe of my lung removed for a small nodule that turned out to be cancer. I had the surgery on July 10, and I'm feeling great. I don't even have to have chemo--just periodic scans to make sure everything stays happy. Hopefully you will get the results soon and you will get good news. Welcome, glad you found us. Teri

Hi, Roger, I'm so sorry about your wife. I am not, myself, a fount of information on the subject, but I do know there are treatments that can make her much more comfortable--palliative care is available to help someone with pain or other symptoms caused by the cancer or by other treatments. Other folks who are more knowledgeable on the subject will be along shortly. Please remember to take care of yourself, as well. Glad you found us. Teri

Hi, Roger! Nice smile. Welcome, jump right in, the water's fine. Teri

Crap--sorry to hear that news. I was fortunate enough to be early stage so I'm not much help in terms of treatment or what to expect. Thankfully there are some very knowledgeable people around here who can give you more guidance as far as that goes. I know that for myself, personally, I can't stand the thought of anyone worrying about me. I think it's nice that you made him laugh, and that you are having this opportunity to connect after so many years of estrangement. My guess is that he's feeling some regrets about not being closer to you--before I had my surgery, I was doing some of that soul-searching. I'd suggest just kind of following his lead. Maybe your half-brother can keep you informed about the details and you can just provide whatever emotional support he seems to want. Just sending you a hug, if that's OK. Teri

Hi, Julie, I just had my upper left lobe removed after a lung nodule my pulmonologist had been following grew and had a "highly suspicious appearance." Pulmonologist said there was, based on what he was seeing, maybe a 1-2 percent chance that it was non-malignant, and it was suspicious enough he recommended removal regardless of whether it turned out to be cancer. At the time, the nodule was about 1 cm (it grew a bit more before surgery and was about 1.5 cm when it came out). Everything I read about cyberknife suggested that it was really only appropriate when the patient can't tolerate surgery (e.g., poor lung function). I was tested and found to have GREAT lung function, and my surgery (VATS--minimally invasive) was pretty undramatic (though I did have a post surgical air leak that puffed me up pretty bad and put me back in the hospital for a few more days to properly deflate). I had surgery on July 10, and have recovered virtually completely. I still try to take it easy stretching the area of the incisions--I started back to yoga bit too soon and paid for that, but after a week off from yoga and going slow and easy, I'm doing great. I figure in a few more weeks I probably won't even feel the effects of the surgery. After the pathology was finally worked out, I was staged at 1b NSCLC (adenocarcinoma) (surgeon thinks it SHOULD be 1a, but there was some disagreement about whether the tumor had invaded the pleura). Anyway, no chemo for now--just on scans every six months to make sure everything stays happy. I just wanted to reassure you that if you are eligible for the VATS surgery, it really isn't a terribly big deal, and offers the best prospects. When I asked my surgeon to explain the reasoning behind removing the entire lobe, he said that doing that cuts off (literally) all the blood/lymph vessels that errant cancer cells could use to escape. That's why it's the preferred mode of treatment when it's early stage. The traditional "open" surgery is a much bigger deal in terms of recovery time/pain/etc., so I was really relieved I didn't have to go that route. Keep us posted! Teri

Megha, the best advice I can suggest is what we suggested on your other thread--look into hospice. They can definitely help keep her comfortable, and relieve you of some of the worry over how to do that. You can continue to take care of her--they will come to you. She can be comfortable at home that way.

Does that mean you have to tip?

YAY!!!! Doin' the happy dance for you!! Thanks so much for sharing your good news!

Agreed--closer to 25 minutes. Always glad to contribute to research, though....

Hospice doesn't mean you can't continue to care for her. I have a good friend who's a hospice nurse, and she makes regular visits to her patients in their home, managing medications etc. I'd suggest giving one or two places a call and find out about what they can provide that will help you both and keep your mom comfortable.

Great news! Thanks for the upbeat update!

Another voice for hospice here. It's always sad to lose a parent, but to the extent we can spare them suffering, we will be honoring and caring for them. Hugs and support to you and your mom, Teri

So I met with my VERY young oncologist yesterday. Nice guy, like his taste in socks. He started off doing the "lung cancer for the utterly uninformed" routine--I cut him off and told him what I do know, what surgeon and I had discussed, etc., and he switched gears and started talking to me as someone who understands the basics. The tumor board hashed out the dispute between pathologists and surgeon, and pathologists carried the day. Oncologist understands surgeon's position but his recommendations have to be guided by what pathologists determine. Bottom line, tumor is classed as T2a, and cancer is staged as 1b. He tells me that, interestingly, stage 1b is the one stage at which it's really anyone's call whether chemo is appropriate or not. With stage 1a, chemo is NEVER recommended, as it actually has a negative impact on outcome. With stage 2 or above, chemo is the standard recommendation. But with 1b, apparently the evidence is equivocal, and there is some indication chemo might improve the outcome in 2-3 percent of cases. He said if I chose chemo, it would be four rounds of Cisplatin/Alimta. He went through the possible side effects, and asked what I thought. I said, well, I know my surgeon was advising against chemo, and as much as I'm willing to do whatever is necessary, I'd just as soon skip the chemo if that's a reasonable option. He immediately assured me that he was totally fine with that--he thought it was a perfectly reasonable and sound decision. I asked about what kind of scans they would be doing for surveillance, and he said they were more "intense" than the ones used for screening--more detailed. So my first scan/followup with him will be in four months (late Nov/early Dec). I mentioned what my surgeon had said about followups with him, and he said, "Well, you COULD follow up with either one of us, but if there were to be a recurrence, I'm the one who would be handling your treatment," so guess I will stick with him. Oh, and I did ask about genetic mutations, etc., and he said none of that has any relevance unless it is stage 3 or greater. So overall I feel good about the game plan for now. If a recurrence happens, it happens and I will deal with it accordingly, not beating myself up for not doing the chemo (which wouldn't guarantee a nonrecurrence, anyway). Yesterday was a good day. I had the day off because my birthday was Thursday (I switched days off to get Friday instead), and I also got good news about some expensive repairs I have to have done to my house (won't be QUITE as expensive as I'd feared), met some friends for lunch in Philadelphia, met with oncologist, and then drove up to the Stone Pony for a concert, surviving one song in the pit before deciding my post-surgical body was probably better off further back (punk bands, gotta love 'em). I've started going to yoga class and walking on the other days. This experience has driven home how important it is to stay healthy, so I'm trying to put that momentum to work!

Fingers crossed! Of course, I'm willing to do what has to be done to maximize the likelihood of nonrecurrence, but if there is truly no benefit, I'd just as soon skip the unpleasantness of chemo. LOL, surgeon was still regretting my unfortunate post-surgical crepitus experience. He was describing how I looked, to the med student who was there for today's appointment, as "the Sta-Puft Marshmallow/Michelin Tire Woman." Pretty accurate!