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Limited SCLC - "Curable" or not?


SDianneB

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http://www.tnoncology.com/cancerinfotype.html

Just one snip from this link:

"Patients with limited disease small cell lung cancer have cancer that is confined to a single location in the chest that is not detectable outside the lung. Patients with this type of cancer are potentially curable."

Many times since I was diagnosed, I've heard quite the opposite of this. I'm also coming across more and more people who have survived a long time with SCLC. What have you all been told, if anything?

Di

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My PCP has two patients who are 6-8 years out from dx with sclc. They are considered cured.

My onc told me the first time I met with him that this is curable. He also said "no guarantees", which I knew....but my goal is to be cured. Why not? If it doesn't happen...it doesn't happen! But there is no good reason I know of, not to strive for a cure! :wink:

"Patients with limited disease small cell lung cancer have cancer that is confined to a single location in the chest that is not detectable outside the lung.

As to this quote, my understanding was that to be limited stage, the cancer must be confined to one lung and the lymph nodes in the chest (mediastinum). Any mets outside of the chest area, constitutes extensive stage....but altho mets to the mediastinum ARE mets...the fact that they are still in the chest area means it's limited stage.

(Hope that convoluted definition made some sense~! :roll: Can you tell I'm not a doctor? :D )

Now I have to go read the article you linked to...but wanted to say this first.

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They had me meet one their longest survivors 10 years and he was extensive. Cis and VP, no radiation. He is one hell of a guy. He also went through this when there were no effective anti neusea meds. Says he lived on his bathroom floor for 9 months, lost 60 lbs.

Jen

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I've heard around here of survivors up to 8, 10 years, but haven't met any of them yet.

I tend to think more along the lines of 30 more years! :P I'm 51, almost 52, and yes, I'd like to live to be 80 or so! Can't always have what we want, but if I get to that 1 or 2 years at a time, that is my first line goal.

In the treatment trap I'm in now (posted about elsewhere), I think it comes down to a fairly easy choice -- that a) I'm clear of disease and they will do PCI soon, or B) I'm not clear of disease and they will start 2nd line chemo or some kind of treatment. Just letting me sit around for weeks/months is NOT an option. When first diagnosed, they insisted I start the chemo on Friday rather than giving me a weekend at home and coming back on Monday to start. So, if it's that important, then they will be doing something to help me get to some kind of "cure" stage.

Interestingly, of all the docs I've seen, there is only one group where I get either negativity and gloom & doom -- the oncologists. Of all the docs I've seen, there is only one group where they seem content to withhold treatment based on hunches not substantiated by the umpteen scans they order -- the oncologists. There is only one group who won't even discuss this in terms of recovery or "potential cure" -- the oncologists.

Well, by golly, it's their own website where they say it's potentially curable, so they are going to show me that, and soon, or not. So there!!!

Di

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Well, by golly, it's their own website where they say it's potentially curable, so they are going to show me that, and soon, or not. So there!!!

Exactly!! That's the attitude, Dianne. I know the one time my own onc sounded less than positive, it hit me like a ton of bricks. Brought me WAY down....where I don't like to be emotionally. So....I got myself all fired back up and the next time I saw the onc, was for the follow up AFTER my CT scan following treatment. We already know the results of that scan, right? NED.

Everyone was smiling and positive that day...and I told the onc how his sorta negative mood the time before, had impacted me. My hubby kept saying maybe the onc just wanted me NOT to get my hopes up too high....but like I said, "If he doesn't already realize that along with my optimism or positivity....I'm ALSO a realist....then he hasn't been paying attention!!"

I'm sure you feel the same. It's one thing to accept the realities of this disease. It's quite another to set out on the journey - OR find yourself at any time on the journey - so locked in negative thought that you lose any possible joy to your days!

We are alive....until we aren't anymore. I don't want to die of cancer...but I might. Until that happens, though, I'm going to enjoy my life as much as I can AND do what I need to do in terms of trying to beat this thing. Anyone locked in pessimism will not be on my team. It's just that simple!

I'll allow for anyone to have a bad day or an off moment...which is how I look at that one occasion with my onc. It wasn't his typical demeanor that day. It better not BECOME typical...or I'm outta there! :wink:

Go after what you need and want, Dianne. This is your battle, your life. You can bet your bippy that no matter HOW good and caring ANY doctor or any other person might be....that nobody cares ANY MORE than YOU DO about the outcome here! So go after what you need and keep on believing in a cure. Why not? It could happen, right? So go for it!

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"We are alive....until we aren't anymore. I don't want to die of cancer...but I might. Until that happens, though, I'm going to enjoy my life as much as I can AND do what I need to do in terms of trying to beat this thing. Anyone locked in pessimism will not be on my team. It's just that simple!"

You bet yer assets, it is! I can't believe I'm so dumb sometimes. I was stewing about having to wait on another PET scan (one that may be useless), and it occurred to me that no matter what, someone is going to have to commit either way -- PCI or more chemo. If not, then Di is going to be going to the other place, and taking her insurance with her.

Oh, and your use of the word "bippy" almost made me swallow my popsicle whole -- too funny! I haven't heard that in years!!!

(Hope the PCI is going well??)

Di

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(Hope the PCI is going well??)

Uh.......would I really know if it wasn't? :wink:

Just spoofin' ya! Going fine so far...but I am tired. After yesterday and today off...I'm not so snoozy today. But for the most part, I notice the decline in energy and my ability to sit down without dozing off...and that's about the worst of it.

Had a very mild headache the first couple of days but that seems to have gone away. I keep waiting, as Nancy B. said happened to her, for my appetite to diminish. So far, it's not really happening. :roll: I could stand to lose about 10 lbs. and was hoping that as I *lost a few marbles*, so too, would the pounds melt away.

But really, it's not bad at all. Only 8 days to go...and by then, I figure my hair will be taking a hike again....just in time for the cold weather. Back to wearing my pink knit skull cap, I suppose.

About "bippy".....I dated myself with that one, didn't I? I still miss Laugh In. Can you tell? 8)

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Glad to hear you're not having bad troubles with the PCI. I'm disappointed I couldn't have it before Halloween, as I thought I might grow a 2nd head, and give all the kids a thrill trick-or-treating! :P

I miss Laugh-In too -- and how cute Goldie Hawn was then! I'm too old ... pout.

Di

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as I thought I might grow a 2nd head, and give all the kids a thrill trick-or-treating!

What a pair we'd have made....you with the second head, and me with the second arse! :wink:

I miss Laugh-In too -- and how cute Goldie Hawn was then!

Now I'm thoroughly enjoying her daughter Kate Hudson, who is about the cutest thing going!! (Just watched Raising Helen the other day, from my "post" on the sofa!)

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In response to the oncologist negativity thing.....

I think the reason that oncologists come across like this sometimes is that we have been burned too often. We know more so than anyone that good scans can turn bad. I've also had so many angry patients and families who are furious when on one visit I tell them no sign of cancer and the next that the cancer has spread. This is usually the point at which I get fired (I swear oncologists must be the most frequently fired group of all specialists....).

So the human reaction is that when we have a good scan, for self preservation I have to make sure the patient understands that it doesn't necessarily mean the cancer is gone for good. And you may tell me that of course you know this already but after having my competence questioned on countless occasions, I sometimes have to make sure that this fact is understood.

I write this of course after having just been fired by a family this morning. Why? Well because the mom's cancer has recurred after her most recent chemo. Of course demanded to be transferred to the Mayo Clinic where there are people who actually know how to treat cancer. I wonder if patients ever tell the doctors at Mayo that they don't know what they are doing? I suppose there is always Sloan Kettering or MD Anderson........

Well anyways, gotta go finish rounds.

By the way, the answer to the cureable limited stage small cell is yup, even this apparently clueless oncologist has seen it happen.

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Joe, if I didn't say it already, I apologize, but I truly think that any bad experiences I've had with doctors -- including oncologists -- represents the minority --- by far.

I've also considered the burnout factor, because I've been there, done that, with more than a few health care people in my lifetime.

But here is the deal, I think, that providers make when they make up their minds to do what they do. I think they must realize that just being a doctor means that you won't get much sleep, may miss out on lots of time with your family, and may have to work strange hours.

Never once have I expected miracles from these docs, but I could literally write a small book about the misinformation, different things being told to me on different days by the same person, and having to always be alert that everyone is singing off the same page. That is NOT what a patient should have to do, IMO.

I realize that doctors deal with each other in a totally different way -- as colleagues. But, as patients, we generally see something way different.

I "fired" the first oncologist because all he could come up with was gloom and doom, and his treatment wasn't at all within their own protocols, nor those of the other major cancer centers in the country. (He wanted me to have a PET scan the day after I finished chest radiation -- prime time for NOT having a PET scan. He was going to withhold the radiation to begin with because he thought I had adrenal gland involvement, even though all the other doctors disagreed, and there were NO clinical indications that they were. It took a week of my time to get the Pulmonologist to talk to him and get him to refer me for the radiation anyway. I firmly believe that had I not taken the time to listen and learn, my situation now would be perilous, at best.

The one I have now is a breast cancer specialist, and doesn't appear to know SCLC protocols either. I had to spend almost a week going back and forth between her and the Rad. Onc. just to get the right tests done at the right time, and to get them to communicate to each other, and say the same things they were telling me.

If nothing else, the mistake was mine in not seeking out someone who at least knows more about lung cancer, if not a lung cancer specialist. Apparently, not all oncologists are trained to treat all cancers.

Keep in mind that these are 2 docs out of many wonderful ones whom I'm am most grateful for. The wonderful ER doc who got me to the right Pulmonary doc when my PCP was out of town, the PCP himself who is a great friend, the Pulmonary doc who has saved my skin more than once, etc, etc., etc.

I want honesty and competency. And I don't think that's too much to ask for.

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I'd like to speak to this "doctor negativity" issue. Dr. Joe, it's so obvious to all of us that you are a caring, kind doctor--you wouldn't be spending your time here otherwise.

I have been incredibly lucky in both of my cancer journeys to have really great doctors--my original consult with my breast surgeon literally consisted of me sitting on the end of the examining table sobbing and he sitting in the chair for about 45 minutes with me trying to be factual and to comfort me at the same time. Radiation oncology--same thing--by then I was having some emotional reactions from tamoxifen--again with the crying, but for no reason I could think of--again, they got me all fixed up, and these doctors actually hug me when they see me now for yearly check-ups.

With the lung thing--different surgeon--different hospital. He is very skilled, one of the best in the business, and for that I am very grateful. He's cordial, not particularly outgoing, but very serious about the health of me and the rest of his patients. I also consulted with their oncologists at that hospital, just for a second opinion after surgery. I was already sure that if I were to get chemo, I would do it at home, which is right down the street from my house, and not in Chicago, which is about an hour away.

I saw Dr. Ezra Cohen for that onc consult, and, not only did he recite my case history better than I could, he talked with me about options, and said before I left, "I think you have an excellent chance of never having cancer occur again. Go get the chemo and keep up with your check-ups and live your life." I came home and told my onc what he said, and she said she totally agreed with that opinion.

So, when I start to get goofy about upcoming tests, I remember back to that and take great comfort in that.

I am a police officer, so I also know about displaced anger. We can't always make everything better for everyone because of limitations--mine are with the law and doctors have limitations with medicine and other circumstances.

I just thought I'd offer my 2 cents worth--this is such a stressful thing to deal with, and while we don't want anybody to be talking at us all the time with some Polyanna viewpoint, I feel sorry for folks who have doctors "gloom and doom" to contend with. I am one of the lucky ones, I know that......

Cindy

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By the way, the answer to the cureable limited stage small cell is yup, even this apparently clueless oncologist has seen it happen.

Awwww, Doc Joe...you are a LONG, LONG way from clueless and plus, you've got to have a bigger heart than most to spend some of your precious free time here, helping all of us! We appreciate your input here more than you could ever know......or maybe you DO know, and that's why you're here, eh? :wink:

For edification....my onc was sort of doom and gloom with me one time only....on my last day of chemo. At that point, I'd had NO tests or scans done since my dx!! So any of the sort of downbeat comments he made that day were NOT based on any info specific to how I was doing...because there was no such animal. All there was to base any expectation upon....was how I was feeling at the end of chemo.....which was REALLY good! :wink:

So...that being the case, he sort of shot the air out of my tires...as I was pretty pumped up to be FINISHED with chemo and feeling that good! The thing is....my onc was the first person to really GIVE ME hope....at our first meeting. Everything I'd read on the net up to that point told me I'd be lucky to live 2 years!! :?

My onc said, "You know this is curable?" Well....no, I didn't. Not from any "horse's mouth" anyway! 8) So I made him repeat his words...which he did....my hubby and I smiled at each other like we'd just been given a reprieve (because we HAD!!)....and since that day (May 12, 2004) for the most part, I've maintained a positive attitude.

As of October 6th, by all appearances I am keeping company with NED. I understand how important it is to keep NED on my dance card for the next two years....how much that will increase the odds for making it to 5 years out and a cure.

But....even if ED shows up again within that time frame....I will not feel like it's my onc's fault or my rad onc's fault or even my PCP's fault. And I'll still want positive people on my team....even if I am back deep in the battle again.

Doctors are people too :wink: and are entitled to have their off moments, their off days. It cannot be easy from your end either, Doc Joe....dealing with cancer patients and knowing that you're going to lose a lot more of your clients in the long run...than the guy running the dry cleaners or managing the local grocery.

I've had pretty good luck with the medical professionals that have come into my life since my dx. There was only one nurse in rad onc with whom I could make no connection. In fact, she scared the peewaddens out of me, explaining the possible side effects of radiation. :shock:

It was my great good fortune that she transferred out of rad. onc, the day before my lung nuking began! I do not miss her a bit! :D

Everyone else has been terrific. I even get hugs now from the gal in my onc's office who draws my blood! :wink: (Decent recompense for being stuck yet again! :roll: )

I'm sorry you got fired, Doc....but you can bet WE'LL never fire you here as we are thrilled that you're willing to spend a little time with us. You add a real touch of professionalism and authenticity to these boards and I think I can speak for everyone when I say it's important to all of us that you are here!

So you had a down day today...but tomorrow...things will look up again for you, I hope! And whenever you need to feel appreciated...just show up here....and we'll take care of it, ok? :wink:

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Addie says: "My onc said, "You know this is curable?" Well....no, I didn't. Not from any "horse's mouth" anyway! So I made him repeat his words...which he did....my hubby and I smiled at each other like we'd just been given a reprieve (because we HAD!!)....and since that day (May 12, 2004) for the most part, I've maintained a positive attitude."

My sister went with me the first time I saw the Rad. Onc. I had to ask the nurse why I was there, because the Onc. had not told me -- they told me at the desk when I checked out, when they told me he'd ordered a CT/PET scan that he'd not mentioned either. The last thing the Onc. told me was that radiation probably wouldn't do me any good, since I had adrenal gland involvement (I did not). I saw the Pulmonologist and found out that he'd called the Onc., and asked him to refer me for radiation anyway, and to just go forth with the idea that I was limited stage. I was lucky. Well, lucky and exhausted from having gone back and forth to all the docs because I was hearing different things from him than I was from the other 2.

So, in the Rad. Onc. office, the nurse said I was there to be set up for radiation, and didn't Dr. S talk to me about this? Well, no. I told her exactly what he'd said, and I told the Rad. Onc. Not only did he think radiation would work for me, he told me that day that they were all (at the cancer center) "working with me for a cure." Wow. My sister and I burst into tears, and I told him that was the first time anyone treating me for this had said anything like that. And that was after I'd finished 2 rounds of chemo.

So, imagine with all the stress and mental duress you're under with all this, going through chemo, and hearing nothing but gloom & doom, and in a tone of voice that just about says "she's six feet under already; just get her chemo done and she's outta here." (I took 2 different friends with me on 2 different visits, and my sister was with me once, so I had witnesses to all this, and they actually come down harder on him than I do, if that tells you anything about his personality -- or lack thereof.)

Do I wish Dr. S ill? Of course not. He and his wife have just had a baby, and I hope that he learns to be a human being while raising his new child. I hope that for him and his child. (His wife is a dear person.) I will admit that I've wished him a few flat tires now and then, but that's about the worst of it.

It's like night and day. I'd gone through the 2 rounds of chemo, feeling really better than I thought I should, but not hearing anything to motivate me to keep going. Believe it or not, when I went back to Dr. S., his only comment about my adrenal glands was that "apparently the Radiologist doesn't agree about the involvement either." Indeed. And his comment when I told him what both the PCP and Pulmonologist said to explain why they thought there wasn't adrenal gland involvement -- "Well, I see a lot more of this than they do." (They've been practicing since way before he was even an itch in his daddy's pants.)

And yes, this is only a small part of the overall picture with him -- each and every visit was a new jaw dropping experience.

Di

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I know of several people that have surived from 5 to 10 years and are still here today. They had extensive sclc. Just like me and I am at the 2 year mark now. Anything is curable so dont give up just keep the faith.

Besides that I want to collect social security someday and get them discounts for meals, planes and trains. Wont be much but I will be tickled about it.

Doc Joe I remember walking into my onc office maybe after he had a hard day or just gave someone some bad news and I would smile at him, pat him on the shoulder and say dont worry doc am gonna make you famous. He would look at me and shake his head but if I cant keep my doctor motivaed then who will. Well today he is in Bagdad healing our soldiers so we send him cans of homemade oatmeal and peanut butter cookies along with tootsie pops and other things. Your not fired until you give up and quit. :wink: I placed a note in the last cans that said if hardend then use as frisbees against enemy. His reply back was REAL GOOD AND REAL GONE.

Someone ought to create a take your doctor a batch of cookies day.

God Bless

Don

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Someone ought to create a take your doctor a batch of cookies day.

Good Idea Don, I made cookies last Christmas and gave a couple big plates to the Oncologists office, but he wouldn't eat any, said he had to watch his girlish figure. But I will take thenm again this year as well, because even though he says I am not 'curable' I am NED and he seems to be keeping a close eye on me to keep me that way!

Dr Joe, if you PM me your address, I will send you a plate of cookies, because we surely do appreciate you here. :)

Blessings

Betty

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Dr. Joe,

Clueless is NOT a word I would use to describe you at all. I find you helpful, honest and throughly knowledgable. I think your patients are lucky to have you and if I were in your area I know I would come to your office with confidence. You are a wonderful addition to our family here at LCSC and I hope you stay with us for a long, long time.

You have a darling family and to take your time to spend with us is a gift. Thank you.

Nina

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I think that those of us here have a wonderful insight to you, your empathy and demeanor. The fact that you care enough to come here and learn more about care givers and especially people living with lung cancer, and in turn you offer so much support to us voluntarily.

Unfortunately, your patients may not get to see that in the "real" world, due to time retraints of an office visit, stress from their situations and the fact that you are the one person that they can lash out at if things don't go the way they had hoped.. And I can picture you in my mind with a big bullseye painted on your forehead! HA!

From personal experience, when my dad had a set back...I looked for any reason or any excuse to blame or lash out at what I felt was the cause of it. Fact is, the only thing that was ever to blame was the cancer itself. I'm glad I never said anything to his medical team that I would have regretted. They were all very good. And doing a job that I could never do, where your losses are greater than your victories.

I don't have any wise words to say that will make "getting fired" sting any less. I just know that you must have patients who value and trust your judgment and the medical care you provide and who feel very lucky to have you fighting for them.

I know we are all lucky to have you here with all of us.

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Well this the first chance I have had to read this whole post!!

DOC-you have the terrible job of telling pts. things they DO not want to hear.

I have been an RN for along time and have been in there when families have to hear these things. It is so hard on medical prof. to go thru this. It is hard to go home day after day knowing that a families entire life has been turned upside down. Just because what we had to tell them. It is so easy to 'blame' the person who tells you the bad news!

I am a long term survivor! I am almost at the 4 yr mark since diagnosis. Granted I have had 1 relapse in 2003 but I still feel good and am back working! My oncol just smiles when I come in-every 2 mos-because he thinks he has saved me :D:D:D I let him think that :D:D

Anywa, Med. people have thick skin. It does get bruised tho.

Thanks for being here Dr!!!

Love to all Cindy

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Some of us may have read recently about the medical profession's hesitancy to use the term "cured." Given that, this discussion, and similar ones in other threads, I'd like to pose this question to health care professionals: (We know they certainly aren't immune to disease, as Cindy points out, but just as a hypothetical question.)

If it were you, your wife or your child, and you had difficulties getting full or straight answers from an oncologist or a radiation oncologist, would you be inclined to forgive it as a "bad day," or a misunderstanding, or something else? Would you not do everything in your power to seek out the best you could find, and not want to waste time with people who weren't helpful to you? What would you be saying to someone who told you to just take your child home and love him/her, because treatment would be a waste of time? Your mother? Your father? Your sibling? Your spouse?

It's a given that health care professionals normally have some advantages within the system -- "professional courtesy." It doesn't, however, mean that they get perfection, no more than any of the rest of us. From the years I spent in the field, I am awestruck by the many health care providers out there (docs, nurses, and all the other allied care givers) and how overburdened they are, yet they keep on giving of themselves for us. But, when we come across a bad apple in the barrel, what would you have to say about it? What would you be saying to them directly?

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