Just diagnosed and feeling so very scared...

Sorry to hear about your husband's diagnosis, and I think the Oncologist's remark of "that's pushing it" was quite insensitive and adds to the anxiety. Sometimes I think the specialists forget we are human beings. Please keep us all updated on your husband's progress, and the very best of luck for him.

Thank you so much.  We wake each morning with a feeling of utter dread.  We are trying to stay in each moment and not catastrophize.....it helps a little....I agree re the specialists comment, as it wouldve been nicer to say something more uplifting    

Hi,

Sorry to read this, the bottom must have fallen out of your world especially just after beating that throat cancer.

A few tips for when your oncologist calls tomorrow...

You probably have some questions, so write them all down first so you don't get side tracked or they don't slip your mind. Get your answers and write them down too - otherwise it's hard to take it all in. In this situation there is no such thing as a silly question.

Ask what to do to improve his chances. Different people with an identical prognosis survive different times, and there are reasons for this, so do ask. (I did, I was told to exercise and eat more protein to increase the white blood cells that my immunotherapy was making. Your oncologist can be more specific for your case.)

About postponing treatment a couple of months: don't. I suspect it was the doctor not wanting to spoil your Christmas - like it isn't already. If there's a treatment on hand then get stuck in.

Ignore what was said about "not curable." That could just mean living with it - like we all live with conditions as we age. As for saying "that's pushing it" - disgraceful and inaccurate: the name of the game these days (myself included) is just to keep on surviving until the next best treatment comes along.

kind regards,
Steve

Hi Steve

Your message lifted me, and I thank you for that very much. Yes it was a real body blow to hear that it had spread. No one with cancer wants to hear that!  Sadly I didnt read your message before the Dr's call...I will ask about what we can do to improve his chances at the pre treatment meeting.  We start treatment on Monday so two weeks after finding out. 

Do you mind my asking what your diagnosis was and how long ago?  And what treatment have you had?

The Oncologist today said worst case scenario is 6-9 months but thats unlikely to happen and 25% of patients live for over two years.

weirdly he also said without treatment you could live for two years!! 

Hi,

No prob, I think it's mostly in my profile anyway.

My February 2018 diagnosis was T4 N2 M1c non-small cell adenocarcinoma in the right lung. Without treatment that would have finished me inside 6 months.

The 4th stage bit was a brain metastasis, surgically resected followed by radiotherapy. I officially now have a hole in my head

After that I just had Pembrolizumab every 3 weeks for 81 cycles (allowed to exceed the NHS 2 year limit because I went private.)

Then I had just one slow-growing lung tumour that didn't get mopped up by immunotherapy so that was managed surgically last January - right uni-portal VATS lower lobectomy.

I'm now on regular scans and crossing my fingers every few months like so many are on this site.

I hope all goes well on Monday and after.

kind regards
Steve

Thanks for coming back to me Steve.  Oh my I can only imagine your thoughts and fears with those diagnosis'.  And yet here you are, five years later! Do you mind my asking what kind of cost per treatment it was to go privately? 
what I would like to know is, do you ever get used to this feeling so that you can cope better with it? They say you can get used to anything...but I cant imagine ever feeling normal again.  Im going to get in touch with a local support group as they offer counselling.

thanks again Steve.

As Steve below said there are new things on the market..... I just read the blog on here by the Highlander and he is an inspiration.  Appears new things came on the market for him too.

What about a second opinion? Another consultant, another hospital?  I have recently been diagnosed with BC and have just started chemo.  I am prepared to go with what the consultants have suggested but I am also looking at natural things I can take alongside such as Melatonin; and the sort of foods / drinks I should or should not eat.... albeit that I ate fairly healthy to begin with, there were some reminders for me. 

All the very best x

Hi,

The cost of private treatment is somewhat eye-watering. What bumps it up is that once you start something on private it's ALL on private - you don't do the bed, meals and nurses on NHS and just the expensive bits on private. What also bumped it up for me was being on an expensive drug for a lot longer then usual. Keytruda is £7k a dose every 3 weeks - it mounts up. What brought it down a bit for me was I went for an NHS hospital (but still with my own room, meals, nurse, etc) rather than a private hospital. Somewhere like the Cromwell in west London is like a 5 star hotel, full of sheikhs and celebrities, best of the best of everything but out of my price range these days. Basically I've had NHS treatment but jumped the queue, had access to drugs the NHS won't pay for, and been treated nicer than usual by everyone. So far, my health insurance has been billed for over £650k.

When I started treatment Keytruda/Pembrolizumab wasn't available on the NHS - I would have been on chemo until the immunotherapy was approved. Then I would have had the immunotherapy withdrawn after the 2 year cut-off instead of keeping on it as for long as I could tolerate the side effects. On the NHS I doubt I would have reached being reassigned stage 1 and approved for the lobectomy.

As for coping, that's been weird. I've spent the past 5 years in denial about being close to death, and now it seems like I might actually end up okay it's all kind of caught up with me. I've cried twice on this journey - once when I was told I might have just 6 months, and again when the surgeon told me "cancer free".

kind regards
Steve

My God no way could we afford that, and we dont have private health care.  I hope the fact that my husband is going to be on Keytruda, is one positive? 
Im glad for you that you are so much better now Steve.  

Thanks Anji x