BridgetO

I'm sorry to hear your diagnosis. What's your next step? Or do you know yet? Hang in there, Dan. You can find lots of support on this forun.

I'm sorry to hear about your diagnosis. I know you worked hard to get the robotic surgery you chose. So now you'll need to work hard to get a second opinion and hang in with treatment. You can do it! There are so many people on this site with Stage 4 who are living good lives; I hope they will inspire you.

I have in the past helped a number of people with SS disability applications, or SSI disability .(Social Security is based on what you paid in to the system; SSI is available if you haven't paid enough into the system but have very limited income and resources--the disability standard for both programs is essentially the same) Tom's advice is excellent. Two things I'd like to add. First, submit the most complete documentation and information you can at the initial application. If you have a case manager through any agency, ask for their help with this, or whether they can refer you to any other local agency that can help at the initial application stage. Second, the Socail Security Administration will probably send a questionnaire about your abilities/disabilitie to a person you name in your application. You need to be sure that this person knows that this is coming and is also aware of the disability standards (as Tom says in #3 that you should be). It can be difficult for some people to fill these out for others because they either want to maximize the extent of the disabilty to be helpful (as in "she can't do anything for herself and requires total care") or minimize it because they are in denial or trying to be optiimistic. (as in " she is a wonderful person who tries to do everything for herself and only needs a little help"). It's important for the person filling out the form to be detailed and realistic and as Tom says- be sure to include treatment side effects, especially when treatment is long-term. Social Security is a really convoluted system, so if you can find someone to help who has experience with it, so much the better. And in any case, be sure to meet any appea deadlines and don't give up!

Wow, Patricia, you have a lot on your plate! I agree with the previous post about asking for help. This site is a good place to find support as well as information. Good luck to you and Jason. Hang in there! Get as much info as you can, but don't get too bogged in statistics.Each person is a case of one.

Life does go on, thank goodness! I'm glad to hear that the VA is coming through for you. Best of luck to you and your big ol' dog. Hang in there.

Hi Dan, I see some similarities (but also some differences) with my situation. I was 5 years out and NED from the end of my treatment for a stage 3 grade 3 cervical cancer. In my routine followup CTs, they found a slow growing nodule in my right lung. It didn't light up on the PET scan. The various doctors agreed that it didn't look like a metastasis, whcih apparenlly would have been rounder, not so spread out. It was possible that it was some kind of infection or inflammation. . Unfortunately, It was in a location that couldn't be biopsied without taking it out, and it couldn't be taken out without taking out the whole lobe. So in November I had a VATs (laparoscopic) lobectomy. It did turn out to be an adenocarcinoma. The surgery was easier than I expected and my recovery was prety fast. I'm not needing any additional treatment at this time, but I will have close CT surveillance to watch for possible recurrence. I've learned a lot about lung cancer since November. I hope that what you have turns out to be benign. Once cancer per per person is MORE than enough. This site is a greap place to get information and support, so keep in touch and hang in there! Best of luck!

I was walking around the hospital unit the day of my VATs lobectomy and released the following day with a portable chest drain. The day after that I was walking around the neighborhood wearing an oversized raincoat to cover the drain tube and bag. I probably could have made it upstairs as soon as I was home, but didn't have to, as my bedroom is on the main floor. The more you move around, the easier your recovery will be. I did sleep and hang out on the couch (futon-type) in the living room- with my wedge pillow -for over a week, because it was less boring there- more natural light and I could see what was going on outdoors.

I had a VATS lobectomy in November. I wedge pillow was really helpful for my breathing and comfort during my recovery. A 12 inch foam wedge will give you about 45degrees elevation. I recommend it!

OK! Glad to hear your persistence paid off and that you're able to have robotic. Best of luck!

Hi Brenda, and welcome. I've found this site to be a great place for infomation and support. About PET scans: my adenocarcinoma didn't light up the scan at all, probably because it was small and slow grriowing.Because of its location, it couldn't br biopsied without taking it (and a lobe of my lune) out, which was done. My surgery was VATS (laparoscopic) and my recovery was fast. As Tom G mentioned, it's important to find out about genetic testing of the tumor (also called molecular testing). Best of luck and hang in there! Bridget

Thank YOU! I appreciate your posts.

Welcome, Carl. Being freaked out is normal, at least at first. This site is a good place to get information and support. As others have said, if you feel comfortable, share details of your diagnosis and those who have similiar experience will probably chime in. Best of luck to you. Hang in there! Bridget

Hi Julie, I'm not a newcomer to cancer either. I was diagnosed with a rare and aggressive cervical cancer in 2011. My routing surveillance CTs turned up a slow-growing thing in my lung that didn't look like a met, but they couldn't tell for sure without a biopsy. Due to its location, they had to take out my lower right lobe, which was done last November. Sure enough, it was an adenocarinoma. I recovered pretty fast from surgery (VATS- laparoscopic, which is much easier than open surgery.) I also had breast cancer in 2008. So I've ben around the cancer block a few times.As I've said on this site before, I think cancers should be one to a customer- or better yet, NONE! You're right that there's a lot to learn about lung cancer. I've found this site to be a good source of information and support. Hang in there! Bridget

Hi Lbelle, I'm glad to hear your checking this out! Hang in there! Bridget

Hi Judy, Wow! You're the first person I've heard of that had the same 3 cancers I've had. I think cancers should be strictly one-to-a-customer! Enough is enough! Bridget O

Hi Lady Hobbit, Of course you belong! Welcome! I don't think people on this forum judge belonging on whose diagnosis is "worse'. We're all dealing with lung cancer so we're all in this together. I've found a lot of support and encouragement here and I hope you will, too. I say ditto to what Tom G says. Hang in there!

Hi Judy, Welcome! I'm a breast cancer survivor (Stage 1), too. I also am a survivor of a clear cell cervical cancer (Stage 3b, grade 3). The lung cancer is the most recent, Stage 1 adenocarcinoma. For it, I had a lobectomy and don't need further treatment at this time. For my cervical I had concurrent chemo and radiation plus additional carbo/taxoterre afterwards. Because my gut was radiated and not my lungs, the effects may be quite different. I had some unpleasant times during my treatment, but stayed well enough to drive myself to my treatments. Hang in there and best wishes to you.

It's great that you have options for your treatment. Here are some thoughts based on my experience. I have medical insurance with very complete coverage through an HMO. It doesn't pay for outside doctors at all. On a previous (non-lung) cancer, I had some concerns about what my medical oncologist was planning for treatment-- I did like this doctor pretty well, though. I went for a second opinion from a doctor specializing in the rare type of cancer I had. I paid for this opinion myself. She recommended some specific additional chemo. I went back to my in-program doctor and told her I wanted to do this. She said that, although it wasn't what she would recommend, it made sense, and she respected the opinion of the outside doctor. I really appreciated her flexibility and we went with the outside doctor's plan. What I'm getting at with this is that you may be able to get opinions and treatment plans from "the best", such as Mayo, and have them implemented closer to home where you might be more comfortable. Of course, this would depend on having a local doctor who you trust and who is flexible, and also a treatment that's not so innovative that only Mayo can do it. Best of luck whatever you decide. Hang in there!

Welcome Karin. I'm so sorry for the loss of your sister. I too was diagnosed when I felt fine. I had a routine CT scan as a followup for an unrelated cancer, and a small slow-growing nodule was found. in my right lung. I had surgery and it was diagnosed as adenocarcinoma stage 1a. I didn't need chemo and I'm also feeling fine. I know first-hand how difficult it can be to be a survivor. I've had 3 unrelated cancers, one of them rare, stage 3 and aggressive. For several years after that, I was living day by day and being grateful for that, but not making any long term (or even medium term) plans, because I didn't think I was going to live long. I was 5 years from the end of treatment on that one, NED, and finally getting to the point of (almost) not being anxious when I had my routine twice yearly CTs for surveilance and believing in my long (or at least medium) term survival, when this lung cancer appeared out of nowhere. My perception of myself, life, and time is really different than it was pre-cancer. I've come to see cancer as an interesting journey. I've learned a lot, including about myself. I've heard people say they were grateful for having cancer because of what it taught them. I'm definitely NOT one of those people. I'd give up all of what I've learned and all of these "interesting" experiences in exchange for not having had cancer. But, since that's not possible, I'm doing what I can with it (most days at least) and maintaining a sense of curiousity about it and also gratitude for each day and for my experiences. I'm now in Santa Fe, accompanying my spouse who's on business here. I'm ready to go out this morning and have some new experiences. I'm hanging in there and you can, too. Best wishes to you, Karin

Hi Lbelle. Successive CT scans showed that my tumor was very slow growing. My pulmonologist said that it needed to come out, but there was no big rush. I opted to go on a long-planned vacation and so it was a couple of months before I got in to see the surgeon, None of the medical team seemed to think this was a problem. In contrast, I had another cancer (not lung) that was a very aggressive type Everybody dropped everything and I was in surgery within about a week of the diagnosis. So I guess it depends on what the tumor is doing. If your doctor(s) say it's OK to wait to get a second opinion, it probably is. It is important that YOU feel comfortable with your choice. Not to say that what your family thinks/feels doesn't matter, but it's your body. Can you get everybody to take some deep breaths, pray, exercise, meditate, talk to their pastor or spiritual advisor or counselor or whatever might help them calm and be a support to you? For me, it's important to learn as much as I can and make my own decsions about my treatment. I have also learned that the way I talk to others about my cancer and the way I talk to myself about it also (if that makes any sense) is important. Hang in there Lbelle. It's your life, your decisions, your story.

Hi Lbelle, I had VATs lower right lobectomy in November. A bunch of lymph nodes were taken out and were all negative for cancer. Diagnosis was Adenocarcinoma Stage 1A. I woke up from surgery with no vent and no oxygen tube. I was quickly alert and chatting, went to a regular hospital room (no ICU) and was walking around the floor later that day. I was released the next day with my chest tube still in, attached to a Heimliich (one way) valve to drain fluid and air into a bag. The tube and bag were a nuisance. The bag tended to leak if not kept upright. I did go out walking in my neighborhood the day after I was discharge, with the tube and bag apparatus covered by a big raincoat. The tube was in for about 10 days--longer than usual because I was still leaking air.. I had some pain, mostly from the tube, I think. I took oxycodone for a few days and then gradually transitioned to alternating ibuprofen and tylenol. I also learned how NOT to move to avoid pain. After the tube was taken out, I had very little pain. Altogether, the pain was less than I had anticated and I recovered fast. Has your surgeon recommended that you sleep with your head elevated? If not, ask about it. It areally helps with breathing after surgery. I got a 12 inch high foam wedge, which gave me about 45 degrees elevation. It was way more comfortable than trying to prop myself on pillows. I recommend it. I slept propped for over 2 months. Also, if you come out of the hospital with a tube in, I suggest you get some chux or similar disposable bed pads, since the tube can leak where it comes out of your side/back, and the bag can leak wherever you hang it. As I said, the tube is a nuisance. But I was able to manage it at home and was glad I got home from the hospital so quickly. I hope you can have VATS and that your surgery is as uneventful as mine was. Hang in there and best wishes/

The flight was a success! 5 hours coast to coast--no pain. I took a very small dose of lorazepam, which I usually take when I fly due to anxiety. I had a slight cough and tightness in my chest at one point during the flight. I suspect this was a result of my recent bronchitis, rather than my surgery. In any event,it was relieved by a couple of puffs of inhaler. I'm happy to know that I can fly without problem since I really enjoy travel. So here I am in Washington DC, with 5 days to spend sightseeing while my spouse is at a conference. Happy dance!

Hi, I also had a small nodule(mixed groundglass and solid) and a 90 day wait. Something was there, and VERY slow growing. Then a PET scan in which nothing lit up. I understand that because PETs show metabolism, slow growing cancers sometimes don't register on them. Because of where mine was, a biopsy couldn't be done without taking it out, and a wedge resection wasn't feasible because of where it was in relation to the blood supply in the lung. So I had a right lower lobectomy by VATs. There was an adenocarcinoma (1.5 cm.)that came out with clean margins. Mediastinal lymph nodes were taken out also and were negative. So it was stage 1a. I had a fairly quick recovery from surgery, and I don't need any further treatment at this time, just regular CT surveillance to watch for possible recurrence. About your fear of doom and death: Of course you're scared- it's normal to be scared with a possible cancer diagnosis. You're facing a lot of uncertainties. But that's different than being doomed. My situation was similar to yours and I don't feel doomed at all. I'm optimistic about living a good life for many more years . We're all headed for death, whether we have cancer or not. I don't think Im headed there vey fast, and I think you can realistically be hopeful that you aren't either. I like Tom G's suggestion about a thoracic surgeon consultation. I was seeing both a pulmonologist and a thoracic surgeon and found it helpful in understanding what was going on in my lung. Hang in there!

I'm glad to hear you're planning a trip. Yay for travel!

Thanks, Tom.