Small Cell lung cancer

My Mum has been diagnosed with Small Cell lung cancer, (...well, they said last week they're 99% sure it's small cell. I think this will be confirmed tomorrow).

It's been such a huge shock, until Christmas Mum was swimming 30 lengths a day plus long walks and pilates weekly, she only stopped swimming because she developed a rash, then came a niggling cough, wheezing, then breathlessness, and now this this bombshell.

Mum is 65. The hospital have said they can only offer chemo, palliative care. They said there were smaller shadows around the larger one and fluid on her lung. At the following appointment with more tests they said it's in her lynth nodes and nodules. (this was last week).

We thought she was starting chemo tomorrow but she has just been told this first appointment will be about records, paperwork, discussing things, etc. The hospital didnt have her biopsy result last time, that should be there tomorrow.

Inside i'm half grieving already, i love my Mum so much and i cant imagine life without her, but i'm keeping my sadness well away from her. - In fact it's very hard to feel sad in her company, as she is SO extremely Positive!! (We both cried at the hospital when she was told, but within days her mindset was that of acceptance and positive forward thinking).

She says she feels lucky because so many people do not get a chance to get things straight or say goodbye to those they love, and i totally understand this, (the only experiences i've had are of people losing their lives very suddenly). Mum says she views it a wonderfully loving journey we are going to go through together, (i can think of more preferable trips!). I'm privately struggling with positivity, because i know i'm going to lose her :-( and this hurts so much! ..But i will be with her every step of the way,  and i want to be all that she needs me to be  through this.

Mum has not read anything about small cell lung cancer but i have. I wanted to know as much information possible to be mentally prepared, (as much as its possible to be), for what is to come, but it's all very clinical/statistical/cold factual, no personal experiences. This site is a blessing to find.

Is there anyone on here who is dealing with this same cancer?

I respect that my Mum has chosen not to seek out any details about this cancer, maybe i'd feel the same if it was my body, so i do not speak about what i've read.

Last weekend she said she feels that she has many years ahead of her, that she could even live until she's 80 ! / I admire her optimism but i did feel sad hearing her say this because i've read how fast spreading it is, but i put on a twinkly 'yes you probably will' type smile. This seemed better than to verbally agree or show i've read otherwise.  I pondered afterwards if this is the best way to deal with it; Is it ok for someone to be in denial?... and i decided Yes it is ok if they want it to be this way. Things will come with each step and she/we will handle them then. Maybe later she'll decide she does want to know more about it, in the meantime i'm guessing the medical people will make her aware of all she really needs to know...

Yesterday someone from the hospice rang and suggested she might want to go to view the inside of the building. This really shook her up a lot! She said afterwards 'Maybe they dont think I have as long as I think I have?'. (It was said more like a question to herself, i didnt feel i had to answer). I just said when she's ready to visit i can go with her if she wants me to, which she does).

Soon after diagnosis her symptoms increased, at night she didnt have enough breath to use the inhailer the doctor had given her and pain became unbareable in her shoulders and back. Luckily her next hospital appointment was the next morning (the one for ultrasound/biopsy/another CT etc) and she was able to get some painkillers.

She took the painkillers regularly for 4-5 days and now those pains have passed.

Last night i spoke with her on the phone and was so surprised by how clear her breathing was.

At times like this it's hard to believe what's going on, it just seems unreal!

This morning she said her eye felt strange, luckily again she had a GP appointment already booked or she might have shrugged this off for a while.

He sent her for an emergency check up at the hospital. They said it wasnt a bleed as the GP had feared, but she has a bad infection and they were taken aback by how many cells there were behind the eye. He wanted to discuss this with collegues and for her to return tomorrow, but she has the appointment elsewhere with the chemo people. They've given her some eye drops and wanted to give her steroids too, but she's already taking steriods since the cancer diagnosis. If poss she's going to return about her eye after the chemo appointment.

Does anyone know if lung cancer can bring about a cell build up behind the eye? (Maybe these things are linked?)

Sorry i've written so much in one go! I guess i needed to get it all off my chest right now. Emotionally the last 2 weeks have felt more like 2 years!

  • - i've just realised i didnt even say 'hello' at the beginning!! - I'm so sorry.

  • Hi Twilight,

    My mom was diagnosed with Small Cell Lung cancer last March in 2012.  She was diagnosed at Stage 4.  At the time she was diagnosed she was already having a lot of lower back and hip pain and she finally went into the hospital to have it checked out.  I am not really sure how much you want to know about this type of cancer, but it is very aggressive.  I don't think my mom even fully had a chance to realize what was going on with her body.  By the time she had made the decision to go through with chemo therapy (which her doctors had told us worked very well to treat this type of cancer), it was already too late and her blood counts were too low.  If your mother still has the chance to have chemo therapy and she and your family decide to do it, I would suggest doing it sooner rather than waiting.

    I know everyone is different, but for my mom it was about a month and half after her diagnosis that my mother passed away.  I am so glad that I had the opportunity to tell her all of the things I needed to before she passed, and if you have the chance spend as much time with your mother as you can, and tell her how much you love her every day.

    This has been one of the hardest things I have had to deal with.  Your family is in my prayers.

    - Laura

  • Hi Twillight,

    So sorry to hear about your mom, but a positive attitide and outlook will go a long way. I am stage 4 lung cancer was dx back in June of 2009 and still going strong. My girlfriend Penny was dx with small cell lung cancer (extensive)  in April of 2011. She is currently on Topotecan one week on and two weeks on. It seems to be working the best for her so far. Feel free to chat and ask questions. I will keep you both in my prayers.  Don

  • Dear Laura, Thank you so much for taking the time to reply to me, it's very appreciated.

    I'm so very sorry to hear what you've been through, it's heartbreaking, i'm really shocked to hear how quickly things advanced from the time of your moms diagnosis. I'm so relieved for you that you were able to say what you needed to.  I'm not sure how much i want to know either now, i only know at this moment it feels such a huge comfort and relief to be spoken to by someone who understands what this cancer is like. Thank you.

    Today i've been fearing they might say she can't have chemotherapy because we thought it was going to be her first session tomorrow, but maybe it's common procedure to go first to do paperwork, etc, i really dont know. I do know that they have her biopsy and blood test result. It seems the most we can do is take each day as it comes, and now i'm much more aware of how fast this thing can take over, i feel every day must be valued. Thank you so much for your advice and for your thoughts Laura and for telling me about your experience, you have helped me a lot tonight.

  • Relieved to say the appointment was just to discuss things prior to starting treatment.

    Thank you so much for your message Don and also for allowing me to ask questions. Reading that your girlfriend is responding well to treatment after being diagnosed with extensive SCLC in April 2011, and that you are both managing to live with your conditions, is wonderful, and it brings me hope for my mum.

    Is Penny currently on Topotecan after trying other combinations? / My Mum has been told she will have carboplatin and etoposide over three days, then 18 days free before starting the cycle again. At this moment, apart from wheezing and having to catch her breath (and an eye infection which im not sure is related or not), she is managing very well. She had severe pain in her shoulders + back a short while ago but this is minimal now after a course of painkillers. During that time i really thought it was the beginning of the end, i'm totally amazed and relieved she got through that. Your message brings further hope that mum will manage to live with this.

    My best wishes to you both.

  • My Mums biopsy result showed that she does not have SCLC like we were initially told, she has large cell neuroendocrine tumour which has spread. I now feel very confused as i cant any find info about this at an advanced stage, and i dont understand why they initially thought it was SCLC.

    The chemo combination she is going to start tomorrow is one they use for SCLC, yet large cell neuroendocrine comes under NSCLC -? Its very confusing and distressing. I no longer know what to think. I thought i had a basic understanding about her cancer type and now everything has changed. Obviously im hoping this is a lesser of two evils, but in the past week and a half a lump has appeared above her coller bone :-(

  • Hello Twilight Zone

    I'm so sorry for what is happening to you and your mum.  I believe large cell neuroendocrine is a type of small cell lung cancer but you would be better to post a question under the "Ask the Nurses" part of this forum.  They should be able to help.

    Hugs to you.

    Jan x

  • Thank you so much for taking time to reply Jan, i was feeling so lost in it all at that moment and it was a huge comfort to see your message.

    I've now been told that Large Cell Neuroendocrine lung cancer is a type of NSCLC but it acts the same way as small cell, and this is why they initially thought it was small cell.

    Today Mum had her first chemo session and so far she's feeling fine, no side effects, (phew!) Tomorrow and the following day she'll take tablets.

    Here's hoping it calms this cancer down. I'd so love for my parents to be able to have calm relaxing holiday together, somewhere nice and sunny.

    The hospital want to do a new CT scan for the lump which has since come up on her neck, but we're not sure if it'd be safe to do whilst she's having chemo treatment.

    Best wishes to you Jan,

    Thank you for your sensible advice in my moment of confusion

  • My mom was diagnosed in June or 2012 and passed on March 15. Your mom is approaching this with the right attitude and even though it is extremely hard do your best to keep her positive. I do encourage you and your mom to make all arrangements and say the things you needs to say very early. Even though our family knew the end was coming it still came rather suddenly. We had a great Christmas and she was showing few symptoms. She was wrestling with my kids on the ground. The pain in her back and hips started in February and they started radiation to try and minimize various tumors that were causing issues. Even as recently as March 11, she was talking and pretty much with it (except heavy pain killers). Last Thursday things went downhill quick and she was gone the next day.

    I don't tell you this to scare you. I just want you to be prepared. We thought we had a few more months and feel like we could have done more. I guess we'll always wish we had more time. Just make all arrangements as soon as you can so you can spend all of your time loving and appreciating your mom.

  • Large cell neuroendocrine is very similar to SCLC and treatment options are almost the same. There are clinical trials for Large Cell neuroendocrine, but they usually want people that have been newly dx before they have been exposed to a lot of different chemotherapies. Penny was not offered Topotecan in the beginning; it wasn¿t until we got a 2nd opinion that Topotecan was offered. It seems to be working pretty well for Penny. She is on her sixth line on chemotherapy and has both SCLC and Large Cell.