SDianneB

Lily, we all sort of learn through this, don't we. It seems like such a little time since I started down the road of dealing with this disease, yet it's been about 6 months already. Like you, I've had some frustrations with the way I've been treated by medical professionals (and I use the term loosely for some of them), especially the thriving bureaucracy that exists within the system itself that doesn't necessarily involve direct patient care. I think sometimes that if I have one more oncologist look at me with that "blink-blink" look, and then say "well, it could be this or that or this ..." it will be time to scream!! With one, my mistake was expecting him to be a human being, and with another, I failed to find out her credentials and qualifications for treating lung cancer specifically (she's a breast cancer specialist I found out later -- my bad). I can't and don't *blame* either one, because they are who they are. But, I hoped for more when this started, and as a result, have developed a bad case of skepticism that isn't a great thing to have when one has cancer. Fortunately, the other physicians I've seen have been wonderful. Unfortunately, the ones I needed most to treat the cancer -- the oncologists -- are the ones who have left me with a feeling of disappointment. I talked to a friend this week who called to see how I've been doing. She lost 2 husbands to lung cancer -- both of them had severe brain mets by the time it was diagnosed. One never smoked a cigarette in his life, the other did. Her first husband, the non-smoker, went to a hospital where they were going to try WBR. The hospital had a new MRI machine, and as my friend found out later, it had been almost given to them on the condition that they do "x" number of procedures in it each month, and allow the company to send other potential buyers in to see the machine. Her husband was hospitalized for 18 days, and had 13 exams in that MRI machine. They were just using him as a piece of meat to run under the scanner and help meet their quota. (They were told these scans were needed to measure the effects of the radiation therapy he was getting. ) By the time she figured all this out, they were after her intensely to pay a big hospital bill (he'd been laid off and had no insurance). Once she confronted the hospital CEO, she didn't pay a dime. And the doctor who ordered all those scans refused to even discuss it with her, but did write off his bill too. I often wonder what happens to people who are treated like this and don't know any better than to think it's "normal." I know the feelings of desperation that can come over you at times, and can see how very easy it would be to just do anything you're told in hopes that it will be the right thing. And on Thanksgiving, the negative is there yes, but the positive side is that we DO learn, and we DO go on, and we DO try to find better care when we need it. At least in part, I have people like my friend and you to let me know I'm not the only one on the planet this happens to. Take care. Di

I remember the dumb things I thought when I first found out I had "the big C." It was June, and I'm a fan of West Wing (tv show), so I wondered if I'd find out if Donna made it through her surgery , and would I get to see the Olympics, would I get to vote, have another Thanksgiving and Christmas, another birthday, see so and so again, and should I go ahead and find homes for my kitties while I'm still able, and on and on. What I didn't realize then and I believe in wholeheartedly now is that I want to live a LONG time. If I want to live another year, I have to first live another month, 12 times. If I want to live 2 years, I have to live a year, twice. And on and on. The day before I found out I had cancer, I had no guarantee of how many days I'd have left on this earth, and knowing about the cancer didn't change that. Thanks for your words. I'm truly amazed at the people in this forum, and the depth of emotion and feeling one can find here just reading through 1 day's posts. Have a wonderful Thanksgiving. Di

Yeah, one of those coincidences that happens to people who are truly blessed! Those people are fortunate to have you in their lives, Don & Lucie. What a difference it will make to you all. Have a good Thanksgiving, and eat some for me!!! Di

Fran, I sympathize. I'm having issues with my sister and mother (age 91!) right now that are difficult, but not when compared to what you describe. My mother is good at the blame game, but I've found that if I stick to my guns with her, she generally comes around. She is just very frustrated and worried about me right now, understandably, and says all she can do is pray (she lives in Texas, Im' in Tennessee). So, I tell her over and over that's exactly what I want and need for her to do. It works until she gets worried again! I call her as much as I can -- I even bumped up my cell phone plan so I could talk to her more and longer. We talk about just stuff, and it seems to help when she can hear my voice and know how good I'm feeling and what this or that doctor said, etc. You'll get through it. Glad to hear you have such a great support system. This family stuff is just one more battle many of us have with this scourge they call cancer. God bless you all, and have a wonderful Thanksgiving. Di

Oh my. One of my good ol' southern friends would say about now, "if it ain't cockroaches, it's pi$$ants." Will keep you all in my thoughts and prayers. Hang in there. Di

I am in awe. That you submitted to the MRI, and stayed under for (gulp) 1 hour. WOW! I can't go near those things. (shudder) "The boys," huh. If it were me, they'd have to keep rolling me over and over to figure out which was the right side. Di

Puhleeeze. I go for a PET scan this morning, actually feeling good and feeling positive about the scan. The tech is great, funny, good to talk with me and let me know what's going on, how much time is left, etc. Almost makes up for my arms screaming after being over my head for 15 minutes! He is also helpful about getting a copy of this scan onto a CD for me, and will oversee copies of the others so that I can go by in the morning and get them for my consult next Tuesday. I leave there, go to the 4th floor and to the doc's office to get copies of those records, and I run into the same company again as with the hospital - aarrrggghhh!! This time though, I have to fill out the request and wait 3 working days to get the copies! Now, guess the rest -- today doesn't count, so tomorrow (Wed.) is day 1, and Friday day 2 .... uh no. They aren't working Friday, so it doesn't count. So, they will be ready next Tuesday. grrr. I explain that I have to have them Tuesday to take to the doctor, and they offer to fax them at no charge. The new doc won't take them before seeing me so that's out. Finally, a nice person came up from the back and having heard my pleas, said she is sure they can get them done by Monday, and I just need to call and make sure. Whew. (Given my experience with these people, I'm not hopeful this will work out, but if I have to as a last resort, can just get them to fax the records Tuesday if the copies aren't ready, and hope I'm in the office and checked in when the fax comes through!) Next is the oncologist's office (current) and the records are ready, but feel a bit thin, so when I get to work and go through them, all I find are the doctors notes and copies of the scan reports that I already have copies of. Nothing about the chemo or labs or anything. So, will go by tomorrow and get those. Stopped by the imaging center and picked up the CT/PET scan on CD with no problem whatsoever. Starting last Wednesday, this makes every day since then that I've had to go by and pick up or take care of something just to get these records. If anyone is reading this and doesn't already have their records, GET THEM NOW before it's really a lot of trouble! What really ticks me off about this isn't just having to pay, although I think they charge WAY too much, it's more of what I call "institutionalized disrespect." They obviously don't want the lowly patient to have copies of their own records, in spite of the law saying otherwise, so make it as difficult as possible for patients to get their hands on them. I could create a fictitious physician, give them an address, and I swear they'd send them immediately and for free, but I went about it the honest way, and have encountered nothing but their ridiculous procedures, rudeness, and total lack of respect for the patients who pay their salaries. Reading through the progression of the scan reports makes much more sense about my progress. I only wish the docs themselves could have told me as much rather than me having to read it myself, and after I've already made arrangements for a 2nd opinion with a specialist. I found out that I have an old healing rib fracture and a left ovarian cyst that no one told me about. Also confirmed that Onc. #2 is concerned mostly about my radiation wheeze, and I doubt the Rad. Onc. would ever admit that it came from the radiation. So, there ya go. Di

Karen, I can't express the feelings I had when I had my first scans for restaging and was told there was "significant" shrinkage. I know just what you are all feeling, but especially the patient!! For me, it was all so cloudy and unknown at first, and to have that positive reinforcement come when it did was invaluable. It renewed my commitment to treatment and my motivation to stick with it. I'm so very glad to hear this from you all -- happy Thanksgiving!! Di

Ditto what the others have said -- I just had one this morning! Where I go, they do the injection (radioactive glucose) then I sit for an hour (some places it's 45 minutes), then on the table and the scan takes about 45 minutes. I don't like the arm over the head thing either, but if I grasp the other arm with each hand, it's easier. The first set of scans had my head inside just barely -- just about at my chin. After a few series of scans and as I came out of the donut, they let me relax my arms, so it wasn't too bad. I will NOT have an MRI in one of the old machines, but CTs and PET scans in these smaller, "donut" shaped machines are fine. They aren't very wide at all (CT machine is wider than the PET scanner I was in this morning) so there is light all around. I've had 3 CTs and 3 PETS since June of this year, so I'm becoming an expert on being the patient. Ha. I told the tech this morning that I was worried because I'm beginning to know my way around that massive Radiology Department. Di

Hey -- I'm not 60 yet either! First off, congrats to you on the pending new little one. What a joy that will be! Not glad you have to be here or that your mom has to go through this, but you're in the right place. There are lots of caring folks here who have helped me through the doldrums plenty of times. You're in my thoughts and prayers. Take care, Di

Elaine, thanks so much. It means a lot, truly. The "answers" from this bunch I'm just not so sure about! All but one doctor, Onc. #1, figured out the adrenal gland thing, and even Onc. #1 was with them on the hemangiomas. What I think is that Onc. #1 is there primarily for research. In fact, they just recently announced their new foundation that will increase their clinical trials a whole lot by 2006, and he's right in the middle of that. Onc. #2 is also right in the middle of that, and is their breast cancer specialist. That's all fine and good, but I don't have breast cancer. Onc. #1 had ordered a CT/PET scan for the day after I finished radiation. That was when the Rad. Onc. first told me that PET scans are "useless" until 4-5 months after radiation. That's when I left Onc. #1 and asked for a referral to another one -- in the same practice. (Probably a big mistake on my part for not asking for a lung cancer specialist right then and there.) Rad. Onc. said the protocol is to come back about a month after chest radiation for a follow-up CT, then they will decide on the PCI. Onc. #2 says I'm to come back in Jan. for a CT/PET scan -- wrong on 2 counts, as I finished radiation on Sept. 9th, and waiting until Jan. would be 4 months, and just barely within the time period after radiation ended. Rad. Onc. calls Onc. #2 and tries to explain, so they call me to reschedule in Nov. -- wrong again. "About a month" after radiation stops is in October -- finally got this scheduled for the end of Oct., but had an ER trip before then, so had the CT done there. (That's the one that mentions nothing at all about lungs or cancer.) After that CT, I go back to Onc. #2 who says "we don't know." Pulmonologist says it's scarring from the chest x-ray report and from actually looking at the CT films. Now, they've scheduled the PET scan for tomorrow -- less than 3 months after the end of radiation, and within the time period the Rad. Onc. says it will be "useless." Make any sense to you? Sure doesn't to me. These Oncologists don't seem to understand the drill where PCI is concerned, and don't seem to know their own protocols. (It took me about 5 minutes to find the protocols on their web site.) This will be scan #6 I've had since June -- the 3rd PET scan. Sheesh. Di

I meant "nothing' as in no cancer -- no PET uptake. Sorry if I didn't get that all out accurately. The "resolution" is in size -- adrenals back to normal size on CT scan, hemangiomas on the liver are smaller. (The Oncologist did say that would happen with chemo/radiation -- that they tend to clean out a lot of things!) The 1st PET scan report was done the day after the 1st chest CT -- the PET scan showed NO activity there. The report I'm missing is the CT/PET combo done after 2 rounds of chemo where they pretty much ruled out the adrenal glands for good. PET scan #1 said no uptake, and the impression was "benign infection." I should have the CT/PET combo report tomorrow, so will be interesting to see what that one said. (It's the one that the Rad. Onc. said ruled out the adrenal glands, but the Onc. #1 didn't like hearing that, and said "I see the Radiation Oncologists don't agree with me." ) Di

The adrenal gland story is this -- they were enlarged when I was hospitalized on May 31. This showed on the first scan I had - a CT scan of my chest. Then I had a PET scan, and it showed NO uptake in either the adrenal glands, liver, etc. The "spots" on my liver are hemangiomas,"and I've probably had them all my life. The pulmonologist says that where I had uptake on the first PET scan was very prominent where I had tumor, so he believes that something would have shown up -- even a little bit -- around my adrenal glands had there been cancer there, and it didn't. Not even a hit of activity there. I never had any symptoms, and nothing has changed there in all the scans I've had since, until this last one showing them to be normal. Both my PCP and Pulmonologist say they treat a lot of patients with this symptom with no cancer, and the heavy duty antibiotics I was taking in the hospital and when I got home probably did the trick. I don't know about Medical Directors. There are a lot of physician practices that are managed by other companies, and they probably hire lay people as "Medical Directors." In hospitals, they have to have physicians as department chairs, but not necessarily as directors, but I don't think the same thing applies to physician practices. (Example -- a hospital would have to have a physician Radiologist to head the Radiology Dept., but could hire a credentialed Radiology Technologist as the department director.) Di

And now more ... Last CT scan - chest/abdomen/pelvis with contrast - on Oct. 20th. I read the report after all the hassle trying to get copies. There is absolutely NO mention of lungs or cancer or anything in my chest in that report. Nothing. Nada. Zilch. It mentions that my once enlarged adrenal glands are back to normal, and hemangioma in my liver are decreased in size. Signs of early arthritis in one leg. But not a thing about the lungs. Go figure. And this is what they are being so equivocal about? Guess the PET scan tomorrow will tell the story, if it isn't "useless." Di

Lisa, what an incredibly awful thing to have to go through. Sounds like you're all on your way out of it though - finally. You have my best wishes and prayers that things continue to get better for you all. Di

One more footnote to this saga -- After 3 trips, I finally got almost all the hospital records I need. I'm still missing the complete ER record from Oct. 20th, but got the scan report which is most important, so will not go back a 4th time just for that. I got the bill down to $90 from $150 though -- they had copied a 2003 admission (unrelated) that I didn't ask for, and I found 20 or so pages that belonged to another patient, plus about 10 blank pages. I sat down over the weekend and read the scan reports in order. For some reason, I had it in my head that there were patches of cancer in my left chest, but there aren't -- never were. Don't know where I got that idea, but the scan reports are better than I thought. This last one shows complete resolution -- or at least the report says so, but mentions the "pneumonia" in my right lower lobe that the radiologist compared to the first CT scan I had back in June. Looks like that's what they are seeing on the CT scans that are holding things up, and I guess they think another PET scan will clarify what's going on. (I'd like to think that too -- just hope the Rad. Onc. was wrong when he said a PET scan this soon after radiation will be "useless.") I got through my anger over the weekend, thanks to you guys and your support! I even apologized to the medical records clerk when I went back this morning -- for being snippy with her last week. None of that was her fault, but she was the one I could see, so she got my first blast! So, PET scan tomorrow, and I hope I can easily get the scans on CD while I'm there, then records from 2 doctors, and I'm done. Whew. Di

Lisa -- I hope it's something easily fixable! If it isn't, you know you're not alone. Di

I reread from the start and this is what I first responded to: -- this found on a CT scan 2 months ago -- September or thereabouts? Plus the pain and location of the pain. And waiting until December to do anything else.Sounds like you had a lot -- CT, PET, tests, etc. and I did too -- to rule out some other possibilities. Doesn't sound like Lisa had all that, although she may have and I just misinterpreted. Since that first post, there was a little more info. Going back in time and not knowing then what I know now, I might be content to wait it out, but knowing how aggressive small cell lung cancer is, I think now that I'd be wanting to do a lot to find out what it is. But NOT "recklessly" invasive procedures. I have no idea where that came from. Di

So good to "see" you around here again! And thankful - Thanksgiving or not - that you're doing well. Keep it up!!! Di

My question was would the doctor "wait and see" when there are nodules in the lung and that kind of pain, not "wait and see" vs. being "reckless." You'd honestly prefer that to finding out what is really going on as soon as possible? I guess if you're saying there is no way to find that out other than a "recklessly invasive procedure," that's understandable. But given other options, I think I'd do what I could to find out what they were NOW rather than "wait and see" while they might be spreading. Di

Also try churches in your area, and even Meals on Wheels. In the little town where I grew up and where my mother still lives, they have a very active Meals on Wheels program. They have to go "to town" (into the big city!!!) every day to get the food, so they worked out a schedule where they take elderly people for doctors appointments, treatments, etc., when they go, and later in the day when they go back, pick them up and bring them home! They seem to have a good time, and usually stop for lunch on the way home, making it a fun day out. They have to schedule a few days in advance though, because they won't do this for just 1 person. They have transportation here in the city for things like that -- special vans and small buses, so you might try your own City Hall. Other than that and what everyone else has said, I don't know what else to suggest. Di

I just wish it was that easy. I just talked to a young woman who was concerned about me, and I warned her and warned her and warned her again to not let her docs forget to check her for lung cancer now and then. She had a strange look on her face, so I explained to her how so many young women come down with this "out of the blue," and often found when it's already advanced, because no one ever thought to check for lung cancer, because they never smoked, and on and on. One more person knows now, and she'll tell someone, and maybe they will tell someone else, and maybe one day, when enough women are mad as heck about this, someone will finally start paying closer attention. Di

Yay!! A great gift for Thanksgiving, huh. Enjoy! Take care, Di

Well, golly. I'm so thankful to have come across the two of you this year. Would you like to adopt me? I'm fairly quiet, and promise to keep my room clean, but must bring my 2 kitties. Ok? I can have my bags packed in a minute! Seriously, have a wonderful holiday with your family. Di

"Thanksgiving is a national holiday, but I doubt American Native Americans find it a really celebratory occassion. Hmmmm... I doubt the Constitution has an amendment for days off for government offices and officials, nor a listing of holidays celebrated by the Nation. After all, when those government workers are off for Martin Luther King Day or Presidents Day, MOST workers in the U.S. who receive minimum wage or the like are working! It's "just another day" to them, as most do not receive holiday pay NOR overtime, ya know?" Yep!! How many federal holidays are there now -- 15 or so? More? We get 6 a year. And we're open 6 days a week, so have to stagger schedules too. I'm the only one with Sat/Sun off. A friend of mine is a Constitutional scholar, and we were having this conversation once, and he pointed out to me that having a Martin Luther King, Jr. holiday could be considered discrimination if we use the Constitution and framers' intent as the basis for discussion. In the U.S., we are free to believe whatever we want, and even free to be racist. Not having a holiday to honor a well known racist to offset MLK Day might be considered discrimination by some. They might even be in the minority. (All depends on whose ox is being gored, I guess.) And no, I don't feel that way and neither does he, it was just a hypothetical discussion on the issue of separation of church & state. I agree though, Becky. Staggering schedules might be a good thing for John Q. Public, except we couldn't hold our tax returns longer when the 15th falls on a weekend!!! Di