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so many questions, new here.

ForAfriend72
Posts: 6
Joined: Jan 2011

Hello everyone.
First of all may the new year bring new joys and much happiness to us all.

Secondly- Im sorry any of us are here on this board but thankful for the internet and the information and fellowship it contains.

My friend was told she has limited stage small cell lung cancer. On her PET scan, they saw one large mass close to the heart in the left lung, as well as a tiny spot they werent sure of. They saw no other activity. She has no symptoms of being ill. She is a heavy smoker.

I have done a lot of reading. I see the statistics arent good. Im not sure if Im just slow to absorb the info, I am misreading it, or they simply arent clear.

This cancer responds well to chemo and chemo/radiation combos. I understand it returns often. Maybe my question has no answer-
Is small cell actually all over the body, but on such a microscopic level they can not detect it with all their scans, etc? Is it just ever present on a cellular level, no matter how much we zap the patient with medicine and radiation? Is that why it so often comes back anyway?

I do not understand the idea of cancer responding well and yet you are almost guarenteed of not only getting sick but getting sick and being untreatable the 2nd time around. Will they be treating her under the idea that with no treatment shed be gone quicker, so treatment is mainly to prolong life? Is treatment to stop bad symptoms from rearing their head too soon?

I dont understand treating someone who feels fine, only to make their limited time left so "sickly"

Please help me understand better, so that I can be good support to my friend. She is partly in denial and wants to believe they will trying to "cure" her. From what I read there is no "curing" small cell, just prolonging life. It is my nature to research things til I go cross eyed. I just believe knowledge is power.

Thank you for reading and for your support.
Her Friend

Roisin_
Posts: 3
Joined: Dec 2010

For a friend -

I have sent you an email/private message, please check.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

That's two posts you've made so far, two different people, same exact message, is there something you would like to share with the rest of us?
stayingcalm

Roisin_
Posts: 3
Joined: Dec 2010

Hi -

Its only regarding SCLC and I'm not too comfortable posting openly as this board can be read without registering, and I'm a little odd that way :) Thats all - no secrets, no ulterior motive, zilch.

Thank you and Happy New Year.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

You don't really have much to worry about as long as you're not posting under your full name or showing your email. In my opinion, it's a good thing that people can google up information that may be helpful or reassuring to them, but I guess not everyone feels that way.
stayingcalm

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I wish I knew more about small cell, but I'm sure there are other people here who might be able to explain it better =) You can also do a site search for posts here on CSN.
Take care,
stayingcalm

ForAfriend72
Posts: 6
Joined: Jan 2011

Thanks for responding. I have done a LOT of searching, on this site and many others. There are so many questions and many sites seem to just give the same few facts. I find more questions and the same few facts. I have learned a little so far tho. We are all different so one person's experience isnt necessarily going to help me figure out whats next with my friend. Also a great point I found here today- ignore most if not all statistics. I do now understand why they exist but I also believe I understand why they do not necessarily pertain to any one individual.
I continue to surf in my quest to learn as much as I can. I still would like to hear from survivers that have good stories to share.

Thanks again

cabbott
Posts: 1048
Joined: Aug 2006

Cancer is an umbrella term for a lot of diseases that share certain traits. In every case the genes in the cells involved have gotten messed up so that the normal cellular blueprint is messed up. In every case the body's immune system which normally gets rid of messed up cells has missed these particular cells. The messed up cells grow and divide without the normal stops that cause normal cells to stop. The cells can grow into the normal tissue around them and interfere with their functions. They can also sometimes travel through the body(through the lymph system and sometimes the blood stream) and plant themselves in other spots where they can also cause trouble. Small cell lung cancer looks different under the microscope than non-small cell lung cancer. The cancer is named after the way it looks under the microscope. Doctors are working on labeling cancer by its genetic traits, but it is still more common for it to be labeled by how it looks on a slide. I have also read that small cell cancer tends to respond well to chemo. The growing cells may be faster growing, but because of that they take in the chemo better than the kind I have so it has a better response to the chemo. Some folks respond so well that they test out with NED (No Evidence of Disease). If this happens, rejoice! And yes, NED does happen. Oh, the cancer may resurface, but it might not and anyways, it takes time for it to grow back even if it does come back. Cancer does not grow overnight, not even fast growing cancers. Oncologists schedule visits and tests so that they can catch cancer and treat it promptly if and when it reoccurs. Oncology research grows by leaps and bounds every month, so the longer you live the more likely a better treatment (and hopefully a cure) might be found. Stage four cancer (when the cancer is found in a site far from the original location) is not considered curable. However, it is STILL TREATABLE. Even folks with stage 4 cancer are often NED. So don't give up hope! The university teaching hospitals with cancer centers tend to be on the cutting edge. When you are facing a deadly disease, you need the best treatment you can get to. Sometimes that treatment is easier on the body. Sometimes it is tougher on the cancer. Sometimes it is both. Treatment research for cancer changes so rapidly that even a few months can make a lot of difference. My oncologist for breast cancer (I have lung cancer too) told me that I am about to go off the medicine I have been taking as a breast cancer preventitive for the last 5 years. But he wants me to come back anyways in June when a big study will decide whether it is best to continue treatment with this particular preventitive indefinately or stop after 5 years. He won't know for another 5 or 6 months. Stopping the meds for me is the current state of the art treatment but in a few more months that might change and he knows it. I point that out because any books in print even if they came out yesterday have been in the process of being printed for at least 2 years. That means the statistics and treatment plans they contain are already ancient history. Most of the books in my public library are over 5 years old. Much of the stuff on websites is also more than 6 months old as well. Some of those websites haven't been updated for years! I don't mean that it is all useless. But the stats just don't tell you what you want to know if you want to know how long your friend is going to live. And they can't. Your friend is an individual. Even if the "stats" were perfectly up to date and said that she had a 1 out of a 100 chance of living 10 years, whose to say she wouldn't be the 1 that they were talking about? Stats can only describe groups, not an individual like your friend. So get her to the best treatment center you can get to and help her find the best doctor she can get on her team. It may be wise to make wills and other final arrangements in case the worst happens, but it is also wise to hope for the best. Good luck!

ForAfriend72
Posts: 6
Joined: Jan 2011

Thank you for your reply. She will most likely continue to get her care through the VA. She was military 5 years back in the 80s and can get 100% coverage for life through them. She also works for the state and has additional coverage through her job. I only mention this because she is quickly becoming aware how much this is going to cost. Like it or not its another fear to add to the list. I wonder sometimes if this will be the best care, but am not sure how to steer her otherwise.

I understand statistics and how they dont pertain to individuals. Im reading all I can on the disease and what they are doing these days to treat it. It is a maze of info and Im combing through it. Tuesday will be telling. They will explain more and discuss the treatment route they want to take.

Thanks again for your post.

bradygirl
Posts: 31
Joined: Aug 2010

Hi,Sorry your friend has joined our club..I was diagnosed with limited sm cell lung cancer 8/12/2010; I have completed 4 rounds of Cisplatin and etoposide; chest radiation twice a day for 3 weeks.Last CT scan on 12/29 shows no evidence of disease! I am presently doing 10 prophylactic brain irradiation txs,4 down 6 to go. Being a nurse I was devastated at small cell diagnosis,I've stopped reading the stats and concentrate on what I can do next,what is the next treatment after I finish the one I am on. There is not alot of research going on with sm cell. But I have a good team of doctors. They have me looking at a trial at Mem Sloane Kett,I live around Philadelphia. I found what works best for me is to take it one step(day) at a time. Positive attitude. Be careful who you listen to there is alot of fanatical guilters(its their way or no way).A dear nurse friend asked me if the odds are 85% fatality in 2-5 years who is to say YOU aren't in the 15% survival group! Positive thoughts and Good Luck. Mary Ann

ForAfriend72
Posts: 6
Joined: Jan 2011

Thank you for taking the time to post. Sloan Kettering is a top notch hospital- you are fortunate they are looking towards that route for you. I wish you all the best in your journey with this horrible disease. I was hoping someone would pop on and tell me something good- like they did their treatment and you have no evidence of disease!

But here is my question- I hope its ok I ask you this- NED- means in actuality that they can not SEE anything at this time, but its a waiting game now til when it comes back? Regular scans become your life after treatment is complete? Is that correct? I ask because the part I keep getting confused with is how they say it responds well to chemo- which it seems yours did. However I then read it comes back so often- so its confusing to me. I know we all want to be part of the 15% that are here in 5 years and that is completely realistic. But the other 85- they can be NED and then one day- its back?

Im just confused over the idea something responds well then has such bad statistics over all. I hope I havent said anything to offend- I can be too blunt sometimes, I know and I apologize in advance if I did.

Wishing you and everyone battling this the best.

bradygirl
Posts: 31
Joined: Aug 2010

That's the nature of the beast called cancer.I'll be scanned every 3months this year,then every 6 months next year then yearly. It may offend some but I believe even if they cut,radiate,poison and whatever else to a cancer we can be only be NED (no EVIDENCE of disease). Who can be sure every cancer cell was destroyed; likewise ANY person does not know for sure if cancer is within. All I can do is fight the battles as they come.

ForAfriend72
Posts: 6
Joined: Jan 2011

Seems that is the facts as Im seeing them too. And with smlc this is increasingly true.
I see that there are a lot of missing pieces to this puzzle the more I try to find answers. There are a lot of beliefs too where there are no solid answers. We all have to make decisions and figure out whats right for each of us (or our loved ones).

Ok- something else I dont understand. Theres an idea not to look at statistics because they are comprised of findings regarding a group of ppl, not individuals. But- I have read they wont operate on this cancer because MOST PPL dont do THAT much better from that course of treatment. So my friend has a visible tumor and they wont take it out because MOST ppl that are operated on do not better than those that are not? Im sure theres info Im missing here, but it seems thats the answer for a lot of treatments- they experiment and then start using what MOST ppl do well with.

I dont pretend to know better- I just hate all the unknowns.

broganspond's picture
broganspond
Posts: 7
Joined: Apr 2004

I had a 79% fatality rate back in 2003. I'm still here and have been cancer free for 7 years. I don't really know what they meant by that back in 2003 but every birthday that I've celebrated since then has been a blessing. I hope for you the same luck I was blessed with. Bah humbug to their statistics.

medi_2's picture
medi_2
Posts: 510
Joined: Aug 2009

Phooey on Statistics! The one you read today is probably 5 years old. I am a two year sclc/limited stage/inoperable survivor. I had a small tumor on my lung that was found by accident. I am a runner and had no symtoms. In fact after my Oncoman got my biopsy report he kept checking to see if it was really me. I was fast-tracked to chemo and radiation (cistoplatin and epitisode (spelling?) It made me tired for awhile but it was the after-effects than bothered me. Some fatique, ear-ringing etc...nothing lethal ;) I went through the whole sha-bang before I had a cat again and it was clear. My Doctor proclaimed it a 'cure'. That was his terminology for NED I suppose, but there are many who don't believe it can be cured. It's just semantics. Main thing is to keep positive. It is a very good sign that she wasn't showing symptoms and that it was caught early. Just remember that even though knowledge is power, sometimes too much info can cloud the waters. A midwife once told me that women who over-educate themselves on pregnancy and childbirth end up having a more difficult time in chilbirth; the reason being that they just couldn't 'let go' and let nature take it's course. It's easy to over-think things ;)
Good luck and happy new year to you both!
Medi

broganspond's picture
broganspond
Posts: 7
Joined: Apr 2004

I am a non small cell adenocarcinoma lung cancer survivor. My tumor was not nearly as large as you speak of and was removable with surgery. I now live with 1/3 of my left lung and I do it quit well. It is not for you to understand treatment. It is up to your friend if they find enduring treatment worth doing. I myself was offered chemo after surgery and chose not to. Getting used to living on less of a lung took me almost 2 years of being out of breath constantly to only being out of breath if I exert myself. I did not choose optional chemo, because I didn't want to live that way. But I am the exception. I am 7 years cancer free. Most people are not that lucky. Going through chemo is a choice that for some reason your friend wants to do. It should be her choice and her choice alone. Most people are driven by people that love them to do things they really don't want to do. It is the job of friends to support them no matter what that is.

My step father at 75 had that type of cancer and it was located in the same area you said your friend has. They were not able to operate on it. He had to go through chemo and radiation. He lived to be 82 and at least 5 years out of 7 were of good quality. Approx. 2 years were spent in chemo, radiation and recovery. After that I think he died of old age. Don't know if any of this helped, but I just spoke with a man today who has chosen to not do chemo and radiation and having your friends and family behind you on any decision you make is key in improving the quality of what life you have left.
I wish you and your friend the best.

ForAfriend72
Posts: 6
Joined: Jan 2011

I thank everyone for their responses. I come on here and continue to read but am spending more time in areas of the internet where the talk is specifically about small cell. SCLC is far too different to sum up with examples of non. Maybe in certain cases but not for most of my questions and concerns.

I may pop on here now and again and I lurk. Just didnt want to slip away with out one more word of thanks.

Gilhooley
Posts: 3
Joined: Dec 2010

This is my first effort at relating my experience, please bear with me. 60 years old, 40 year smoker (quit the day they told me I had cancer, haven't smoked since). Diagnosed with SCLC January 15, 2009 from a routine physical & chest xray that I get every January. Lobectomy of upper left lung on Feb 4, 2009. Zero mets, tumor was @ the size of a quarter hiding behind a rib. They could barely biopsy it. I was six days in the hospital with some very caring people tending to me (only other hospital stay was being born). All the pain meds I needed eased everything but the constipation which lasted for a month. Fleets enemas from CVS solved that.

I was in the hospital 6 days, home with Oprah for 2 weeks and said to hell with this & went back to work. Did 4 rounds of chemo in APR-MAY-JUN. No sweat, hair got thin, face turned gray, pretty tired, never got sick. Did 15 brain irradiations in September. Would rather have had more chemo than getting my eggs scrambled every morning. Hair completely fell out this time, ears got scabby, head really itched. Hadn't worn a hat since Cub Scouts. Chemo & radiation were both preventive.

It is 2 years later and my ribs & back still bother me. Lat muscles on left side are shortened and they do cramp up, especially in the cold. Oncologist is very happy and tells me I am in remission and does not expect a further presenting as SCLC is very aggressive. It would be here by now if it was coming back.

My wife, God bless her, insisted that I go to a pulmonologist which I would recommend to anyone surviving lung cancer. The chemo fried some lung and I have idiopathic fibrosis but there is no trajectory to it. I go to rehab every M-W-F for exercise and all the O2 I can suck down. The REHAB IS EXTREMELY BENEFICIAL to recovering strength & stamina. I walk a treadmill for 20 minutes, stationary bicycle for 10-12, recumbent stairstepper for 20 minutes. When I started I was on all the lower settings. A year later and I am on the high settings.

I take the Target equivalent of Mucinex w/cough suppressant every morning, takes care of the coughing and gets the tubes cleaned out. I also use a Homedics vibrator that really shakes the sticky stuff loose. I recommend both.

When I was diagnosed, I did the usual internet research and found the same dismal statistics. I couldn't find anyone, anywhere that could relate a positive outcome. I think I owe it to tell some stranger somewhere to never give up, there is always hope. I expect to get my three score & ten or fifteen in. My wife and I are closer than ever after 34 years of marriage. Our faith in God is stronger than ever. We have experienced an inner peace during this trial that can only be a foreshadowing of what is to come. We pray together daily and always thank God for our blessings.

Gilhooley
Posts: 3
Joined: Dec 2010

This is my first effort at relating my experience, please bear with me. 60 years old, 40 year smoker (quit the day they told me I had cancer, haven't smoked since). Diagnosed with SCLC January 15, 2009 from a routine physical & chest xray that I get every January. Lobectomy of upper left lung on Feb 4, 2009. Zero mets, tumor was @ the size of a quarter hiding behind a rib. They could barely biopsy it. I was six days in the hospital with some very caring people tending to me (only other hospital stay was being born). All the pain meds I needed eased everything but the constipation which lasted for a month. Fleets enemas from CVS solved that.

I was in the hospital 6 days, home with Oprah for 2 weeks and said to hell with this & went back to work. Did 4 rounds of chemo in APR-MAY-JUN. No sweat, hair got thin, face turned gray, pretty tired, never got sick. Did 15 brain irradiations in September. Would rather have had more chemo than getting my eggs scrambled every morning. Hair completely fell out this time, ears got scabby, head really itched. Hadn't worn a hat since Cub Scouts. Chemo & radiation were both preventive.

It is 2 years later and my ribs & back still bother me. Lat muscles on left side are shortened and they do cramp up, especially in the cold. Oncologist is very happy and tells me I am in remission and does not expect a further presenting as SCLC is very aggressive. It would be here by now if it was coming back.

My wife, God bless her, insisted that I go to a pulmonologist which I would recommend to anyone surviving lung cancer. The chemo fried some lung and I have idiopathic fibrosis but there is no trajectory to it. I go to rehab every M-W-F for exercise and all the O2 I can suck down. The REHAB IS EXTREMELY BENEFICIAL to recovering strength & stamina. I walk a treadmill for 20 minutes, stationary bicycle for 10-12, recumbent stairstepper for 20 minutes. When I started I was on all the lower settings. A year later and I am on the high settings.

I take the Target equivalent of Mucinex w/cough suppressant every morning, takes care of the coughing and gets the tubes cleaned out. I also use a Homedics vibrator that really shakes the sticky stuff loose. I recommend both.

When I was diagnosed, I did the usual internet research and found the same dismal statistics. I couldn't find anyone, anywhere that could relate a positive outcome. I think I owe it to tell some stranger somewhere to never give up, there is always hope. I expect to get my three score & ten or fifteen in. My wife and I are closer than ever after 34 years of marriage. Our faith in God is stronger than ever. We have experienced an inner peace during this trial that can only be a foreshadowing of what is to come. We pray together daily and always thank God for our blessings.

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Thanks for the post. You have a very positive and timely message. I will soon start treatmenst (I hope!) and love reading stories such as yours. Each positive message such as yours adds to formulating a positive outlook with people likke me. Thanks and I wish you the best always. God bless you and your family, and all of us cancer survivors.

John

bradygirl
Posts: 31
Joined: Aug 2010

I just finished the chemo,chest radiation and PCI for my limited sm cell.I am NED. It is so nice to hear good news from SmallCell survivors!!God bless you! I feel we have a duty to share positive outcomes to the newbies. I will keep you and yours in my prayers.Thanks!

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