Linking you to resources and support in the lung cancer community!
newly diagnosised
Feb 4, 2011 I was diagnosised with SCLC. I knew it. I had been so medically lucky thru the yrs. My luck wore out. I had seen the md I had prayed to quit smoking. I didn't want the chest xray. I knew by how my lungs sounded it wasn't just pneumonia. But when I read my ct scan results. I just dropped it sounded like I was as good as dead. I knew small cell was agressive and bad. I took my md's advice and seen my onocologist who after looking at me and all tests said we are going for a cure. I have been through 6 wks of radiation and so far 2 cycles of chemo. I am starting another cycle tomorrow. I just had on friday a PET and ct scans. I am nervous but not terrified like the first time. I am still healthy and strong. I am still afraid. I just needed to talk with people who know, and understand what I am going through. I am so tired of the looks, the stares when I am out in public. I just want to scream I have to wear this because you can't cover your nose or mouth and I can't trust you wash your hands. Please don't tell someone who is losing their hair because of treatments, well it will grow back, don't worry. It's not that bad. Don't play kid games with me. I don't have the time or the patience. Look for the good and the beauty in what God has created. Appreciate what you have.
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Replies to This Discussion
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Permalink Reply by AmyLCA on -
Hi Lori,
Like you said, you are healthy and strong and both of those things will help you as you go through this. I don't think anyone here will tell you that losing hair is no big deal. It's a really big deal! For a lot of people, it's the first "outward" sing that they are sick. It's a heavy symbol. I think there's a lot that people say that they shouldn't - I think mostly it's because people still just don't know what to say or do.
Hang in there.
Amy
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Permalink Reply by lori13975 on -
Thanks for allowing me the rant. It felt good. If I get the opportunity. What does anybody think of the low dose radiation as prevention to the brain?
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Permalink Reply by AmyLCA on
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Hi Lori,
There's a lot of good research out there that indicates it's benefit. Basically, in SCLC, it tends to spread to the brain and if there are cells floating around in the brain, they won't necessarily show up on MRIs. But it's much harder to treat if a tumor develops there so the goal is to radiate to kill whatever is there and keep the metastases from happening.
It's not a guarantee - If you have it done, you might still have tumors develop, and if you don't have it doen, you might be free and clear the rest of your life. But it does significantly decrease the risk.
Amy
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Permalink Reply by John H MOD on -
Hi Lori, sorry to hear what you are going through right now. I am a nsclc survivor but I do remember the pain and that hasn't changed. I think you chose the best thing by coming here nd venting as you'll find we get it!
I remember just coming home and wanting to cry at how insensitive people were and they were my friends. As time went on nd I started to feel sick and discouraged I got so sick of hearing " how are you" . When your healthy it ws just something you said. But in my state it just reminded me how bad I felt and then how bad I must haves looked. Scarey thoughts but I needed to go there so as my mother would say get my Irish up. I got angry with myself and pushed to the other side. I took stock of where I was in treatment and said I was over half way through and who cares what anyone thinks bout me. I'm fighting for my life and that's all. I started to speak my mind and if you upset me I let you know it. I think over all people were very receptive because they truly didn't know and were happy to discuss things . You just have to appreciate the facts people are scared you are and so aren't they.
Come back often and keep us in the loop. We love good stories and even gossip if you don't have any new stuff to chat about! Lol
Take care, nice to meet you, John
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Permalink Reply by HollyJo/MOD on
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I have friends with SCLC. I think most or all have had PCI. My husband has NSC and developed Brain Mets almost a year out.
HIs Lungs were/are clear and have been since chemo/radiation. The Oncologist agree that the cells were probably already there.
Your probably aware that chemo does not cross the BBB, hence the need for radiation. My husband had CyberKnife to on his 2 Brain Mets....that's one option, if you don't develop several Mets at once. If my husband were to develop what they refer to as a "Scatter"...(Several Small ones)...then they will want to do Whole Brain.
Bottom line for me-
I have been researching all the treatments and options for almost 2 years now- If my husband had SCLC, he would have PCI.
LC like to travel, especially SC...it sounds like you may have Limited SC. So, they are attacking it aggressively..."Going for the Cure".
Hope this helped a little..
God Bless,
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Permalink Reply by bronie2MOD on -
Hi Lori, just read your original note and I must say the hair thing was a very big trauma for me. We women are so identified by our hair, it's not even funny and more importantly as Amy mentioned, it is the first hint that we are dealing with a life threatening illness..a far more frightening experience. I am someone like you, diagnosed w/SCLC 19 years ago. I was 38 y/o at the time. I too had PCI (brain radiation) to take care of those rogue, roaming cells floating around. Chemo can't capture these as the chemo doesn't cross the so called "brain barrier". I had no side affects from this and actually I got my master's and doctorate degrees in nursing after all was said and done. My oncologist put it this way in re to PCI: no sense in losing the war because of one battle.
I can say that my experience w/others in this experience has been interesting. I think that most of us struggle w/thoughts of illness and dying so that when of us goes down, the rest get really anxious because they get that everybody gets something sometime, someplace. I also think that the anxiety gets folks to say the MOST peculiar things. In the moment, I found this tough to handle. I think what helped was to hang around with people who didn't focus on the illness so much but focused on the healthy me which was still very much in place. Stay the tide, as they say, Lori..stay in place w/this terrific support group and ACT and BE well..best, tonie (bronie)
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Permalink Reply by bonnie on
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19 yr surviour of sclc that is fantastic I have the same cancerr was diagnosed last oct been through the chemo and rad and pci go for a ct scan in june and I am scared but hearing your story give me great hope I am so happy for you god bless you
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Permalink Reply by bonnie on
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had it done last month nothing major just lost my hair again LOL but it was not bad have it done please it is worth it
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Permalink Reply by Diana48 on
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I hear your pain and understand your feelings. I myself had my radiation (35) and chemo (8) together at the beginning of my treatment 5 1/2 years ago and I am now going strong. You sound like a fighter and I know you will give it a good old one two punch gal. As for those who stare, their day or the day of someone they know will more than likely come and then they will understand, hold your head up high and be proud of the person you are. Losing my hair was worse than being told I had cancer and when it started to come out, I handed the clippers to my husband and said "do it".
((hugs))
Diana
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Permalink Reply by lori13975 on
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Just finished my 3rd round of chemo on Thurs. They kinda changed things around a little. Instead of a total of 6 days I get it all in 3 days. It really has kicked my behind. I am worn out, depressed etc. Sucks. I went back to work on Friday. Just for part time for now. I needed some focus. I have to snap out of this. I go back to chemo for another 3 days on May 12. The results of ct and pet was encouraging. They did see 3 mass like areas in my left lung. But feel they are related to inflamation from radiation. both scans say responding well to tx.. I was a little down the mds didn't make me feel as confident in the readings as maybe I should be. They just said they will be watching the areas closely. That it still looks good.
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Permalink Reply by AmyLCA on
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Hang in there Lori! You can get through it!
Talk to your doctor if you are feeling down and depressed. There may be support options that can help you.
Amy
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Permalink Reply by Diana48 on
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Sorry to hear that people in your area are being so ugly. Just remember to hold your head high and proud and fight for what you need and don't worry about others. I had radiation and chemo together when I started my journey over 5 years ago and I am still going strong today gal.
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