SCLC -- Recurrent with questions

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littlelady4220
littlelady4220 Member Posts: 15
in Lung Cancer #1
I'm back, with more questions.

A brief history here - my husband was diagnosed 1/11 with SCLC, 3 tumors in lung, one in each hip, one in liver. Had six rounds of carbo/etop, finished in June and the PET Scan after that showed two lung tumors gone, one very streaky and much smaller, liver tumor gone, one in his hip gone, the other hip much smaller.

He just had a PET Scan last Monday - we'll see the doctor this Wednesday, but he picked up the PET Scan results this morning. It's pretty clear. The liver tumor is back, although very small - others are either non-existant or not active.

So, we see this as fairly good news, although we are concerned about it coming back to the liver. We knew it could probably come back. We're sure the doctor will want to do more chemo.

What I'm asking is, should we be afraid it's starting all over again, or be glad it's only showing one small tumor after no treatment since June?

Comments

  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #2
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    My small cell cancer is very
    My small cell cancer is very aggressive. My doctors would opt to do everything possible to eradicate it. Not doing something, immediately is not an option for them. Discuss with your doctors and check with your husband about what he wants to do. Definitely investigate the cost of doing nothing versus doing something. Chemo and radiation can be helpful but they definitely cost something. Have the doctors started talked whole brain radiation yet?
  • littlelady4220
    littlelady4220 Member Posts: 15
    #3
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    Radioactive34 said:

    My small cell cancer is very
    My small cell cancer is very aggressive. My doctors would opt to do everything possible to eradicate it. Not doing something, immediately is not an option for them. Discuss with your doctors and check with your husband about what he wants to do. Definitely investigate the cost of doing nothing versus doing something. Chemo and radiation can be helpful but they definitely cost something. Have the doctors started talked whole brain radiation yet?

    We are seeing the doctor
    We are seeing the doctor this morning and hope to get some answers at that time. I have brought up WBR and PCI, and the doctor feels it is of no benefit. I have begged my husband to get another opinion, but he thinks this doctor walks on water and knows everything. May I ask when you were diagnosed and how you are doing now?
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #4
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    littlelady4220 said:

    We are seeing the doctor
    We are seeing the doctor this morning and hope to get some answers at that time. I have brought up WBR and PCI, and the doctor feels it is of no benefit. I have begged my husband to get another opinion, but he thinks this doctor walks on water and knows everything. May I ask when you were diagnosed and how you are doing now?

    I was diagnosed 4/11. I
    I was diagnosed 4/11. I fortunately got the tumor removed intact. At the moment, I just finished 5 rounds of cisplatin and etoposide. I declined the whole brain radiation because with my mutation, there is no stats advising that it will help. It is not small cell lung cancer, but a wierder rare mutation. Though since sclc is the closest to it they use that protocol.

    Right now, I am considered cancer free, with an asterisk. I have been advised that the reoccurrence rate for my variation is 80%. So...right now, I am ok. I am sweating the future blood tests and scans, but with any cancer that seems par for the course.

    My radiation doctor was ok with my declining the WBR because there was nothing beyond speculation about what my cancer would do. Once you do WBR as a preventative, you can only do it once more, should the cancer met to the brain. Though my radiation doctor advised for regular sclc it was the way to go. The WBR radiation automatically ages the brain. Should you have genetic diseases in the family like Alzheimer's and the like, it might bring the onset earlier since the brain is considered older.

    I have a lot of that in the family, so it was not worth the risk. Playing devils advocate the radiation doctor did advise that the WBR did help improve life expectancy with regular SCLC. Though really weigh any risks verus the pros. There are always other types of radiation.

    I have chemo fog, and am anemic. Recovery is slow. I have trouble keeping up my stamina. My hair is growing in funny so I just keep it shaved until it looks better. Overall I am doing ok. Small cell cancer is a major scare. All cancers are but these are so aggressive. Though I hear it can be a plus. The faster the cells divide the faster chemo kills them. Please message me if there is anything else I can try to help with.
  • littlelady4220
    littlelady4220 Member Posts: 15
    #5
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    Radioactive34 said:

    I was diagnosed 4/11. I
    I was diagnosed 4/11. I fortunately got the tumor removed intact. At the moment, I just finished 5 rounds of cisplatin and etoposide. I declined the whole brain radiation because with my mutation, there is no stats advising that it will help. It is not small cell lung cancer, but a wierder rare mutation. Though since sclc is the closest to it they use that protocol.

    Right now, I am considered cancer free, with an asterisk. I have been advised that the reoccurrence rate for my variation is 80%. So...right now, I am ok. I am sweating the future blood tests and scans, but with any cancer that seems par for the course.

    My radiation doctor was ok with my declining the WBR because there was nothing beyond speculation about what my cancer would do. Once you do WBR as a preventative, you can only do it once more, should the cancer met to the brain. Though my radiation doctor advised for regular sclc it was the way to go. The WBR radiation automatically ages the brain. Should you have genetic diseases in the family like Alzheimer's and the like, it might bring the onset earlier since the brain is considered older.

    I have a lot of that in the family, so it was not worth the risk. Playing devils advocate the radiation doctor did advise that the WBR did help improve life expectancy with regular SCLC. Though really weigh any risks verus the pros. There are always other types of radiation.

    I have chemo fog, and am anemic. Recovery is slow. I have trouble keeping up my stamina. My hair is growing in funny so I just keep it shaved until it looks better. Overall I am doing ok. Small cell cancer is a major scare. All cancers are but these are so aggressive. Though I hear it can be a plus. The faster the cells divide the faster chemo kills them. Please message me if there is anything else I can try to help with.

    Just want to say thank you
    Just want to say thank you for taking the time to write and explain all of this to me. My husband's oncologist also feels that WBR and/or PCI would not be beneficial.

    We just got back from the doctor's office. The tumor in his liver is back, so they are starting a second line of chemo on Monday. This one is not as long, 1/2 hour three days running, three weeks off. Then a scan after the second round. The first round was 5 hours three days running, three weeks off. But the doctor did say that this chemo is only 30-35% effective, as opposed to first line which is 80-85%. But we are very optimistic. Someone needs to be in that 65-70%.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #6
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    littlelady4220 said:

    Just want to say thank you
    Just want to say thank you for taking the time to write and explain all of this to me. My husband's oncologist also feels that WBR and/or PCI would not be beneficial.

    We just got back from the doctor's office. The tumor in his liver is back, so they are starting a second line of chemo on Monday. This one is not as long, 1/2 hour three days running, three weeks off. Then a scan after the second round. The first round was 5 hours three days running, three weeks off. But the doctor did say that this chemo is only 30-35% effective, as opposed to first line which is 80-85%. But we are very optimistic. Someone needs to be in that 65-70%.

    Sending hugs and
    Sending hugs and prayers....I hope all turns out well.

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