NSCLC with NE (Neuroendocrine) features

Hi Tara

My dad was diagnosed with sclc last year, I'm not going to lie the literature he was given was scary, the treatment was extremely unpleasant BUT last check up he was clear, now the treatment side effects are wearing off his health and appetite are improving.

He also has advanced prostrate cancer so he proves it's not always worst case scenario, a stubborn nature not to give in has meant he's defied the odds not once but twice. Only hope I can be as strong as him x

Good luck xxx

Hi Varmint,

Thank you so much for your reply

The literature is scary to read and my Mum has found a lot of it overwhelming.

Mum should be starting treatment around the beginning of October and we are all trying to keep her positive and upbeat. The doctor and MacMillan nurse have said that Mum was not to cancel a fortnite holiday abroad (going this week) as when she gets back the Oncologist would have seen all the results and have a treatment plan in place, so we have a meeting for that on the 16th September.

Brilliant news for your Dad! 

Once again thank you for taking the time to reply, 

Take care,

Tara xxx

You're welcome, it's not easy but staying as positive as you can is the key, I joke with my dad that it comes in handy him being a stubborn old so and so at times. He'd been referred to an hospice and awarded attendance allowance (he wasn't expected to survive) that was 8 years ago and before he had the sclc. He won't ever be free of the prostate cancer but it's under control x

Your Dad sounds amazing! 

You give me hope as we begin this journey with our Mum, Thank you xxx

Hi Tara

Hello and welcome to us. Though I am sorry to hear of your Mum's diagnosis.

I am a neuroendocrine patient too and you are right that it is a much rarer type. I found when trying to find out further information on it that it was very confusing and contradictory and some said like what you have found that it might have a very poor outcome, where as others said it was a very slow cancer and people found it very slow progressing. A lot that I found was from unreputable resources and there for to take it with a pinch of salt. The best places to research are trusted cancer sites.

From my understanding now is the cancer is graded in grade 1, 2 or 3 and the higher the grade of it is how aggressive it may be. They do this by looking at the cells under a microscope and taking a measurement of the Ki67 of the cells (the Ki67 is a measurement of how quickly the cells are dividing) this is given a percentage and they can tell how aggressive it is.

Your poor mother to be told this in a rather tactless way when she didn't ask or want this information and if they haven't the full results yet.

There are very few NECs/NETs/NENs etc on here so it is very difficult to find much information on them. I also noticed that if they do occur it tends to be in the bowels they appear with the lungs lagging quite away behind. There is a site especially for neuroendocrine patients if you wanted some reliable information this is Net Patient Foundation if you click on the green underlined writing it will take you there.

There is also a neuroendocrine group here too.

Finally, if your Mum is a NET they should be referred to a NET specialist hospital as treatment for us is different.

I hope this helps and that your Mum get's her treatment plan soon.

Hiya Tara 

Your post struck a nerve with me as 30 month ago in march 2017 the oncologist who my mam was under told her her cancer was incurable , the oncologist was new to the team and mam got a 2nd opinion from a different oncologist who told her the intent was curative. My mum had rads & chemo & like your mum she has COPD. Shes doing well currently and has just returned from the lakes. 

She has a CT scan on Friday which I feel anxious about. 

The Dr should never of said that to your mam as theres loads of treatments available now xxx 

hope 

Hello Gina,

Thank you so much for taking the time to reply to my post and for the links you gave giving information on the Neuroendocrine.

The information you have given has set me in the right direction for a better understanding and also what questions to be asking when we see the Oncologist, the appointment has been confirmed for the 16th September.

I spoke with one of Mums appointed MacMillan nurses on Tuesday, she was very sad to hear the way in which the Doctor who proformed the biopsy gave confirmation of the Lung Cancer to my Mum and also a timeframe to how long my Mum has.

The nurse also explained that it will be for the Oncologist to give Mum more accurate information once all the test results are back and I will ask also them if Mum will be referred to a NET Specialist.

Thank you so much once again Gina, I’m not sure of your journey but hope that you are doing well xxx

Hello Hope,

Thank you so much for replying to my post.

We see the Oncologist on the 16th September and hope to have many questions answered then.

My Mum is so much stronger today and even felt hungry she hasn’t had a appetite since the Bronscosophy on the 13th of August, so this has given my Mum a very much needed boost. She has lost a fair bit of weight over the last few weeks due to the bruising and damage to her tooth because of the procedure.

I will be thinking of you and your Mum tomorrow and hope the CT scan brings you positive news xxx

Take care,

Tara xxx

I’m a NET patient and diagnosed in March 17. Mine had already spread from the Lungs to the Liver. I’m treatable not curable.

I’ve had Chemo with little success , had targeted therapy again it kept me stable for a year. We are exploring next options 

Its not an easy journey, waiting for the next scan, investigation, appointment. I have had to learn to have patience,

I cannot recommend netpatientfoundation.org highly enough. Fantastic support advice and experience to share. Don’t hesitate to get in touch with them 

It is also essential that your Mum is seen by  a NET Specialist team. Where do you live and I can advise you of your nearest Centre 

 I have a great quality of life and keep myself busy. I don’t think too far ahead and it’s one day at a time 

best wishes

Hello Christine,

Thank you so much for your reply.

My Mum has her Ongolgist appointment on the 16th September at Watford Hospital and been told her treatment will be at Mount Vernon.

Mum has also been told that hers is not curable but treatable.

We live in Hertfordshire, if you can advise of the nearest centre that would be very much appreciated

Thank you also for the recommendation for Netpatiant foundation.

Sending my very best wishes to you.

Take care, 

Tara xxx