SCLC; 10 years post diagnosis

Hi

10 years ago in early August 2011 I was diagnosed with extensive but 'limited' SCLC (in one lung only).  Then began 2 months of a plethora of testing; CT scans, MRI scan, Ultra-Sound scan, lumbar puncture, bronchoscopy/biopsy, lung function test, cardiograph, X-rays and endless blood tests.  As someone not blessed with the gift of patience, these two months was so very frustrating; all I wanted was to start some form of treatment!  Of course, this period of testing proved to be very necessary in order for the experts to plan the best treatment for my cancer.  

The treatment plan was  3 days of chemo every 3 weeks over 4 cycles. In addition, from the first day of the second cycle I started 33 days of once a day very high dose radiotherapy (I got weekends off). The high dosage was part of a trial looking at the usual dosage of 2 x low dose radiotherapy per day versus the once a day high dose.  I think I was put into the high dose category as, cancer aside, I was very fit and healthy. My Consultant did warn me that this combined treatment would be "brutal"; he wasn't wrong!  I am not going to say that getting through the treatment was easy but it was bearable.  I did have bad days as the treatment progressed, especially with my blood counts. After both the 3rd and 4th chemo cycles, both my white and red cells counts dropped through the floor, To increase the white cell count I had to self injected a bone marrow stimulant, blood transfusions sorted out the red cell issues. 

I finished my treatment  two weeks before Xmas 2011 and just before New Year 2011 I received the news that the treatment had worked and there was no sign of any active cancer. Apart from 10 daily sessions of preventative radiotherapy to the brain in February 2012, I have not had any further cancer treatment.  The ever wonderful The Christie hospital still keep track of me every  6 months and my 2022  appointments have already been arranged.

I hope that this post can bring a little hope to those recently diagnosed and/or have started their treatment. 

Kegsy x

  • Wow....thank you for sharing...I think we all appreciate stories like yours as they give us hope. What stage was your cancer?

    I too am under Christie's but have my treatment at wythenshawe hospital. I've just started immunotherapy.

    Its less than a month since my diagnosis so your story has really cheered me up 

    Thank you xx

  • Hi

    Thank you for your response.and pleased my post has given you hope and cheered you up. Mission accomplished!

    Small Cell Lung Cancer does not have the same staging system as Non Small Cell Lung Cancers.  My diagnosis was that my cancer was 'limited' i.e it had not spread beyond the lung..

    Do you know what type of lung cancer you have?   From the posts on here, immunotherapy treatment is getting very positive results, so it is great that you have started this so soon after the diagnosis.

    One of my Consultants at The Christie (Dr Paul Taylor) also works at Wythenshawe Hospital, and I saw him there a couple of times during my initial testing period whilst they were trying to fit me in to his weekly clinic at The Christie.

    Kegsy x

    "If you are going through hell, keep going" ; Sir Winston Churchill
    " Cancer may take my life; however it will not become my life" Kegsy August 2011
  • This is amazing and so wonderful and kind of you to post xxxxxxx xxx sending lots of love Nicole x

  • I've got nsclc... Ive a tumor in my lung and cells in the chest cavity. Just praying the immunotherapy can keep thi has at bay...xx

  • Hi Elsie, my mum has non small cell adrenocarcinoma , tumour in lung and spotting on adrenal gland and spotting on rib,  my mum is having chemo and immunotherapy, she has been having treatment since 2nd June this year and is on her 5th round of chemo and immunotherapy, Wednesday just gone , her tumor has shrunk oncologist is happy with how things are going,  I kno it’s hard but try and think positive and eat and drink plenty, try and keep busy if you can,   Some people  might not be able to have surgery , like my mum her cancer inoperable but treatable, we just got to go through this hard part, and pray that we keep getting good results from the treatment plan that’s in place. Xxx. Hope you are ok xx lots of love Nicole x 

  • Hi Kegsy,

    That is a fantastic heart warming story, it gives us all hope. My Dad has SCLC with mets on his spine and liver and has just had his second cycle of chemo and immunotherapy, he is having 4 cycles every 3 weeks and then to continue on immunotherapy providing the cancer is stable. The treatment has really taken it out of him but today he felt a bit better, just very tired and weak legs, he seems to perk up the week before his next cycle.

    Thank you for sharing your story, I am trying to stay as positive as possible, just so hard seeing a loved one go through this gruelling process.

    All the very best

    Lucie x 

  • Hi Lucie

    I think they have the 3 week chemo cycle for this very reason i.e chance for the chemo to fully leave the body and for the body to heal before the next onslaught!.. My 'bad' week was always in week two.  the positive is that SCLC often responds really well (shrinkage) to chemo,

    Just makes sure he gets lots of rest, especially in weeks 1 and 2,

    Kegsy x

    "If you are going through hell, keep going" ; Sir Winston Churchill
    " Cancer may take my life; however it will not become my life" Kegsy August 2011
  • Thank you. I’ve passed on your advice, it really helps. Just another couple of questions, did you find some days you felt a bit snappy/short in patience at all during your treatment? My Dad’s temperature seems to have a period of fluctuating for days, he doesn’t feel unwell with it but it goes up and down for about 5 days in a row?

    x

  • Hi

    Well I can be snappy and impatient at the best of times!  Surprisingly during  the treatment I did learn to let it wash over me when loved ones started to fuss over me or tell me what I should/shouldn't be doing. There was an awful lot of tongue biting on my part until I could shut the front door and be on my own and turn the air blue! 

    I don't think his being snappy is a direct result of the chemo; more likely a combination of how he is feeling.  He will be scared about the cancer, he will be worried about what this time is doing to his loved ones plus the chemo  is probably making him feel crap!  

    Have you asked him how best you can support him?  In terms of supporting him, what you and the family think he needs may not be what he wants/needs. It is OK to gently pull him up if he does snap or becomes impatient.

    Hope this helps a bit.

    Kegsy x

    "If you are going through hell, keep going" ; Sir Winston Churchill
    " Cancer may take my life; however it will not become my life" Kegsy August 2011
  • Hi

    I understand everything you have just said. It must be horrendous dealing with cancer, treatment and the guilt and worries that go with it. 

    He has spoke to MacMillan and said he felt better for it, I know he is being fussed over by us all and it’s hard not to because we worry but I can imagine it gets on his nerves! For some reason he seems to have less patience with my Mum, the one who is living with him and doing the most for him, I personally think it’s all guilt, anger and pure frustration of how crap he actually feels, his legs are weak from this second chemo and I know that frustrates him. He does have chats with my Mum about lots of things, I know she will always see how she can help.

    Fingers crossed it can only get better, his 3rd cycle is next Tuesday. Just hoping his blood tests are all good, this time round his temperature has been up and down for about a week, he was checked out last Tuesday by A&E, it goes up then comes down again, it’s very bizarre.

    You’ve definitely helped, thank you so much.

    x