small cell lung cancer

groggydog
groggydog Member Posts: 3
Hello, I am 47 years old and was diagnosed last month with extensive small cell lung cancer. After PET scan they discovered a tumor on my adrenal gland. My tumors in one lung are about 2cm in lung (two tumors).

I have gone through 2/3 on first session of chemo. They have scheduled me for two more sessions. I have a positive attitude (not positive outlook though because of stuff I have read on internet about sclc).

I have read posts here of tumor sizes being from 10cm to 14cm. So mine are small. Doctors said cancer is inoperable. But seemed “positive”. Positive to put in remission for a while? –I didn’t ask.

Not sure what is going to happen next. I do not want to put my head in sand or get some grandiose ideas of cure from doctor when it is not true. My mother died of ovarian cancer so I am familiar with the terrible things cancer does to a body.

Any thoughts out there on this? Suggestions, advice? Want to just say, “hey”?
Is there a “normal” course of actions and consequences that happen next?

Comments

  • dennycee
    dennycee Member Posts: 842
    Hi Groggydog,
    The inoperable

    Hi Groggydog,
    The inoperable part comes because you already have mets. The "seeds" are already circulating in your body. Please ignore those statistics you have read. They do not include figures on the newer treatments which have proved successful. Stay well hydrated to avoid damage to your kidneys. Sclc responds faster to chemo and tends to shrink more than nsclc. There are those here and on another site I frequent (inspire.com) who have lived 4+ years with ext sclc. Do not be alarmed if you need a transfusion. I had 3 over the course of my treatment.

    Normal course of action is to take a short break after second or third chemo to let it work a bit then to take a new CT to verify the efficacy of the chemo. If it is not working they will switch and start over. If working they will finish the last 2-3 chemos. They will wait a bit then do CT's every 3 months to check for progression. They may want to do PCI - prophylactic cranial irradiation. First they are going to want to see if the chemo is working. Sclc is unique from other lc's (and other cancers) because having brain radiation actually prevents most brain mets. My friends husband drove himself to pci and home (prob shouldn't have). The pci will eventually be offered because cancer cells may already be circulating and in the brain a size to small to register on pet scan. Not said to scare you just trying to prepare you.
    Best regards,
    Denise
  • groggydog
    groggydog Member Posts: 3
    dennycee said:

    Hi Groggydog,
    The inoperable

    Hi Groggydog,
    The inoperable part comes because you already have mets. The "seeds" are already circulating in your body. Please ignore those statistics you have read. They do not include figures on the newer treatments which have proved successful. Stay well hydrated to avoid damage to your kidneys. Sclc responds faster to chemo and tends to shrink more than nsclc. There are those here and on another site I frequent (inspire.com) who have lived 4+ years with ext sclc. Do not be alarmed if you need a transfusion. I had 3 over the course of my treatment.

    Normal course of action is to take a short break after second or third chemo to let it work a bit then to take a new CT to verify the efficacy of the chemo. If it is not working they will switch and start over. If working they will finish the last 2-3 chemos. They will wait a bit then do CT's every 3 months to check for progression. They may want to do PCI - prophylactic cranial irradiation. First they are going to want to see if the chemo is working. Sclc is unique from other lc's (and other cancers) because having brain radiation actually prevents most brain mets. My friends husband drove himself to pci and home (prob shouldn't have). The pci will eventually be offered because cancer cells may already be circulating and in the brain a size to small to register on pet scan. Not said to scare you just trying to prepare you.
    Best regards,
    Denise

    Thank you
    Thank you very much.Gives me a good place to start where things could go. Also thanks for the tip on drinking fluids.
  • medi_2
    medi_2 Member Posts: 505 Member
    groggydog said:

    Thank you
    Thank you very much.Gives me a good place to start where things could go. Also thanks for the tip on drinking fluids.

    Hello!
    I had sclc limited but I too was diagnosed 'inoperable' but only because the tumor was too close to my heart to operate. So please do not take that as a sentence. I also had PCI after I finished treatments and I really couldn't tell you if I am more dopey that i was four years ago or not! Now what was I saying? ;) Definately listen to advice on drinking fluids. I ended up in he hospital because of that; it is easy to do.
    Take care and if you have questions, just ask! There are lots of people here to help.
    Cheers!
    Medi
  • weirlion
    weirlion Member Posts: 16
    medi_2 said:

    Hello!
    I had sclc limited but I too was diagnosed 'inoperable' but only because the tumor was too close to my heart to operate. So please do not take that as a sentence. I also had PCI after I finished treatments and I really couldn't tell you if I am more dopey that i was four years ago or not! Now what was I saying? ;) Definately listen to advice on drinking fluids. I ended up in he hospital because of that; it is easy to do.
    Take care and if you have questions, just ask! There are lots of people here to help.
    Cheers!
    Medi

    new here
    I am the caregiver for my mother who was diagnosed with sclc, she has had the first round of chemo, and three radiation treatments, we go back this week for second round of chemo and more radiation, then 21 days later they are gonna scan her to see if the chemo has shrunk any of the cancer, Im just hoping that after 2 treatments of chemo and the radiation that we see improvement. guess im asking will we see a impovements after jsut two treatments?
  • francisc
    francisc Member Posts: 1
    weirlion said:

    new here
    I am the caregiver for my mother who was diagnosed with sclc, she has had the first round of chemo, and three radiation treatments, we go back this week for second round of chemo and more radiation, then 21 days later they are gonna scan her to see if the chemo has shrunk any of the cancer, Im just hoping that after 2 treatments of chemo and the radiation that we see improvement. guess im asking will we see a impovements after jsut two treatments?

    my boyfriend was just
    my boyfriend was just diagnosed with small cell also. he starts treatment on tuesday.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    dennycee said:

    Hi Groggydog,
    The inoperable

    Hi Groggydog,
    The inoperable part comes because you already have mets. The "seeds" are already circulating in your body. Please ignore those statistics you have read. They do not include figures on the newer treatments which have proved successful. Stay well hydrated to avoid damage to your kidneys. Sclc responds faster to chemo and tends to shrink more than nsclc. There are those here and on another site I frequent (inspire.com) who have lived 4+ years with ext sclc. Do not be alarmed if you need a transfusion. I had 3 over the course of my treatment.

    Normal course of action is to take a short break after second or third chemo to let it work a bit then to take a new CT to verify the efficacy of the chemo. If it is not working they will switch and start over. If working they will finish the last 2-3 chemos. They will wait a bit then do CT's every 3 months to check for progression. They may want to do PCI - prophylactic cranial irradiation. First they are going to want to see if the chemo is working. Sclc is unique from other lc's (and other cancers) because having brain radiation actually prevents most brain mets. My friends husband drove himself to pci and home (prob shouldn't have). The pci will eventually be offered because cancer cells may already be circulating and in the brain a size to small to register on pet scan. Not said to scare you just trying to prepare you.
    Best regards,
    Denise

    Thank You
    Thanks for your story and encouragement. I too am just starting out on this Lung Road. However, I have already traveled the Head and Neck Road for quite a while. But I do need, and do appreciate, advice about this new landscape. Rick.
  • tdejonge7684
    tdejonge7684 Member Posts: 11

    Thank You
    Thanks for your story and encouragement. I too am just starting out on this Lung Road. However, I have already traveled the Head and Neck Road for quite a while. But I do need, and do appreciate, advice about this new landscape. Rick.

    This site is great for LC
    This site is great for LC related issues but SCLC and NSCLC are very different and I hate seeing one or two replies days apart.

    I check this site and the Inspire forums daily. Inspire has separate forums for SCLC and NSCLC.

    I would add Inspire to your list of SCLC sites

    SCLC Extensive - http://www.inspire.com/groups/lung-cancer-survivors/topics/small-cell-lung-cancer-extensive/

    SCLC Limited - http://www.inspire.com/groups/lung-cancer-survivors/topics/small-cell-lung-cancer-limited/

    SCLC General - http://www.inspire.com/groups/lung-cancer-survivors/topics/small-cell-lung-cancer-general/
  • reddar7
    reddar7 Member Posts: 4
    yup small cell lung cancer.
    Well lets call you friend then. My story is same as you, I'm just at 6 months after you.
    New on this network and haven't figured out how to start my storybook like you, so I'm
    just hitting your reply button, so to start myself visible.
    I have 10cm lung tumor and its moved on to my spine and brain. Have been thru 6 rounds of
    chemo and doing brain radiation now. I was going to be one of the 100 in the Seneka Valley Virus study, that looks to have a lot of promise over any other. However got disqualified at last minute, because my progress to the good after last chemo was not good enough to qualify under the study rules. I would be getting the injection right now. bummer. But I can tell any of you all about that if needed. Now I looking onward to the next of anything that can make any different story than the norm.
  • MuttisDaughter
    MuttisDaughter Member Posts: 1
    groggydog said:

    Thank you
    Thank you very much.Gives me a good place to start where things could go. Also thanks for the tip on drinking fluids.

    My Mother LS-SCLC diagnosed in 2006....still going strong!

    Hello all,

    I am happy to report that my mother in 2006 was diagnosed with SCLC limited stage. She went through chemo then PCI. She is doing well. She works fulltime and goes to the gym regularly. Comes out to visit us every 3 months.....well she visits her grandchild...HAHA. We are just here... Anyway, just wanted to post a happy story.

  • harshtiwari
    harshtiwari Member Posts: 2
    in my knowleage extensive of

    in my knowleage extensive of lung cancer is hard to treat, and only chemotherapy is the option.

  • sondrahays
    sondrahays Member Posts: 23
    Husbands small cell

    My husband was diagnoised in June of 2017 with SCLC. we went through Chemo/Radiation and PCI. he was confirmed to be in remission in September. he had a lot of the disease but was at that time only in his lung, he responded very well to treatment. unfortuantely his returned in FEB very small pea size spot on his adrenal gland. we are getting ready to go to Maryland for a trial treatment. as we were advised this was our best option at the moment. we trust our doctors and we are staying positive this will have a good outcome. my husband is also 47. we were hoping for the immuene trials for small cell. but the spot on his adrenal is not big enough to biopsy. so they advised we would do a small dose of chemo/targeted drug. prayers to all here. we are making progress with this disease. keep postive and fighting. God Bless.