stage 3 sclc cancer

Hi Jim, I'm so sorry to hear about your diagnosis. My mum was diagnosed with extensive SCLC a few days ago and as a family we've also felt devastated.

One thing I'm clinging to is that my mum has already defied the odds in getting this rare form of lung cancer in the first place, so it's not impossible that she could defy the odds in her response to treatment. The stats can give an overall picture, but they can't capture the individual stories of hope that buck the trend.

On the countless forums I've trawled through in the last few days, I've found experiences that have made me feel more positive. I'm not saying there's a miracle cure, but some people have seen their SCLC shrink or remain stable with immunotherapy, and some were diagnosed with SCLC years ago but are still here. This has given me the glimmer of positivity I've needed. I've joined this forum in the hope of finding more.

Even though it's easier said than done, as a family we've also been finding it helpful to focus no further than the current day, and to look at how we can do something positive within it. For me, that's meant researching the possible side-effects of chemotherapy and how nutrition can help, so I can know how to best support my mum when she starts her treatment next week - that's helped me feel more in control of the situation.

For my mum, it's been about chatting with close friends and family (about the cancer but also about more everyday things), and trying to maintain a sense of routine and normality as much as possible. She hasn't wanted to find out her prognosis and is avoiding the internet to prevent herself from stumbling it, so I appreciate that this makes it easier for her to remain positive.

I'm so sorry you're going through this - it's so deeply unfair. What's working for us may not work for you, but I hope you can find some comfort and hope. 

Many many thanks for your kind words, it really means a lot, I suppose it was the negativity of the NHS that really got to myself and my partner, like you my partner has being doing lots of research etc and you are right it is possible if maybe unlikely that I may have years not months/a year, in some ways I am very fortunate that I have a great partner and actually my diagnosis is somewhat positive in that it is only in one lung and lymph nodes contained within my chest cavity plus I am only 56 and in relatively good health.

I wish your Mum, yourself and all of your family all the best from the bottom of my heart and please keep in touch as we all embark on this horrible journey, if you ever want to talk or share information please contact me anytime, much love

Jim X

I totally understand that - I think the NHS has a duty of care to prepare people for the worst, but I'm finding it helpful to take comfort in the unpredictability of cancer and that it means there may be good surprises ahead too.

Thanks so much Jim, that really means a lot. I'll be keeping everything crossed for you, your partner and all your family as well. 

Talking with people who are facing similar experiences with SCLC is helping me lots, so I'm sure we'll cross paths many more times on this forum through the journey ahead. One step at a time x 

you are so right, speaking with other people in a similar situation and some with positive things to share is a great comfort in the most demanding of times, take care and speak soon X

Hi Jim

My friend was diagnosed with stage 4 SCLC upper left lung a year ago. Oncologists said they could not operate and it was incurable, they said that they could begin palliative treatment in the form chemotherapy. The term "palliative" can be quite scary, it implies end of life care, but people can be on palliative care for years.

Anyway, her first follow up CT scan three months following chemotherapy was excellent, the tumour had shrunk and she was told SCLC responds very well to chemotherapy. When her chemotherapy course was finished she was then put on immunotherapy medication. Her second follow up CT scan showed that, although the tumour is still there, it has not grown and remains stable - in effect it is dormant.

It is now a year since diagnosis and she feels fine and is able to go about her daily life enjoying walks, meeting friends and going to restaurants and pubs etc. She will be kept on three monthly CT scan follow ups.

Life may look bleak now, but after your chemotherapy treatment, although there may be side effects, you will be feeling much better with regard to your worries, and please don't think of this as a death sentence, look ahead with positivity. I had all those feelings when I had cancer, but it was in the breast and was diagnosed at stage 2 with lymphatic spread, that was 34 year's ago. 

Best wishes to you and your partner.

Ann 

Thank you so much for your positive email Ann, I had my 1st session of chemo/immunotherapy yesterday and me and my partner at least feel as though we are doing something positive at last, it is great to hear that your friend is doing so well and my partner and I are trying to look to the future, it could be 12 months or 5 years who knows?? Please keep in touch and hope your friend continues to enjoy life to the full.

Thanks again

JIM X