Newbie & lost

Thanks Sarah 

I appreciate the feedback. Will definitely pursue this.

Sledge x 

Skj01 said:

I wasn't allowed to see the scans and she couldn't tell me how big they nodules were. She said she was an oncologist not a radiologist.

Oh!  I don't think I like your onco.  There's no reason to be secretive with your scans.  I've seen mine many times - my onco has to talk me through them, but so what?  It's part of building up trust and knowing what's going on with your body, which helps us manage the situation.   

The radiographer should record the size in the RT report which is sent to the onco so they can make informed decisions about subsequent treatment.  

You don't get appointments with radiographers,that's the onco's job . . . .   is she offering you one ?

Sometimes I read posts on here and I wonder why people became doctors.  

Salis said:

in order to see my scan results I'd have to do a SAR (subject access request)

Wow, that's ridiculous of them to use that process to see your scans!  

Hi Mmum 

I don't think she liked me. She made it a point to say the radiologist interprets the scans and she determines the treatment. She didn't like me asking questions either. Being a professional I tend to ask the hard questions. I don't take anything at face value, so that must of got her back up. 

I'm still going to push to see the scans though. Just to annoy her.

Sledge x 

Hi Sledge, Good for you!

However, I would also be requesting a new oncologist because I don’t ever see you having a trusting relationship with THIS one!

Hi Sledge,

I have just joined this forum and regretted to read your experience, Sledge, with the oncologist. As others have mentioned,  you are entitled in the NHS to a second opinion. It should not require a SAR to see your own scans! Do you really want to put your time and energy into annoying her? She does not sound as someone who would understand and change her ways. If you feel her behaviour was that inappropriate, it may be better to make a formal complaint.

I have worked in the NHS as  a clinician for 35 years and finding myself suddenly at the other side of the desk made me realise more than ever how essential feeling listened to, safe and having trust in you treating team is when your health and survival is at stake! There are many wonderful clinicians, but also some rotten ones, luckily the minority!

I am 66 years old and got diagnosed with stage IV lung cancer with lymphenodes and 2 brain mets out of the blue in mid january. With hindsight, the weakness in my left arm was probably the cause 2 weeks earlier for driving into a low wall owned by a local chest physician, who I subsequently had to see in his clinic. I think it was more his lack of patient understanding than revenge that he asked whether I wanted to know about palliative care by just looking at my chest scan without knowing the actual diagnosis (which he had wrong). I could have thumped him, but decided just to avoid him and find someone else. Via initial self funded private health care at the Royal Marsden Hospital ( I wanted to be able to tell myself on my death bed that I had given myself the best chance ( but all they do is take your money- loads of it)), I am now at an NHS hospital of my choice and super happy with my clinical team. 

My first reaction on hearing my diagnosis was to make the most of it in my time left and plan a “Summer of Madness”, starting with a 1960s hippy party, but yesterday, having chemo, reality hit me hard.  My prognosis is poor, except that I have high levels of PD and PD-L1 as targets for immunotherapy, but in NSCLC the majority of the cancers become treatment resistant sooner or later and there is no way of telling whether I will be in the lucky 20-30% or not.

I find that uncertainty very difficult to cope with: not daring to hope, but needing hope. So I decided to join this group as the people who truly understand and I wonder how you manage?

thanks for reading this,

Marlies

Hi Marlies, and a very warm welcome to our little forum, though I'm so sorry you find yourself here, but hope the wonderful people on here can help and support you, like we support each other.

We may have different diagnosees, but share the same prognosis, I myself have been on my journey for almost 3 years, and many much longer, despite being given just months in many instances, and we all know how difficult it is being told we aren't curable, but we find a way to live our lives, though not the one's any of us would want, it's still a life worth living.

My advice would be ignore your prognosis,"if you have one," they really don't help, always try to have something to look forward to, It's ok to take one day at a time, accept your going to have down days we all have them, make the most of the good ones, and don't bottle your emotions, if you feel like screaming or shouting, need to rant or moan, want someone who understands your feelings to talk too about them, or anything else, maybe even a chat or a laugh, the ladies and guys on here are here for you. 

As I said earlier I'm 3 years, post diagnosis, and today I'm at the Isles of Scilly for a family wedding, life does go on my friend, and I'm really pleased you've found a team your happy with after such an awful beginning, something else a few of us share as well, my cancer is also highly resistant to the,"only," treatment I can have, I hope you fare better.

Eddie xx 

E

Hi Marlies

Welcome to our group. Like Eddie, I'm sorry to see yourself here, but we all try and support each other, both on good and bad days.

I have already asked about what the process is to change my oncologist. I felt if I have to second guess ever conversation with here then she is not worth it. I've got better things to do with my life.

In answer to your last question, it's all a matter of perspective. Prognosis doesn't matter to me. Knowing won't make much of a difference to my life. A healthy person doesn't know when they are going to die either. The only difference is that we know it will either be the treatment or disease related. We still don't know when. I won't live my life worrying about the things I can't change, so I will just live it to the best of my ability. 

My only goals are out living my mum and seeing my son establish a career. If he finds a partner before I go then even better.

I'm just starting this journey and this is just another challenge I have to navigate.

So for now I'm sending all my love & support 

Just remember - you are not alone

Sledge x 

Hi Annette 

Already trying to replace her.

Sledge x 

Hi Sledge, Well that is the best news! As Marlies said, you don’t want to waste time and energy on someone who will never get better. She sounds to me like a dead loss, so move on and forget her there are a lot of good people out there.

Anyway, what are you doing up at this unearthly hour? I noticed you haven’t written on your Profile Page yet, so maybe like some here (not me, I’m a Night Owl) they are in a different time zone. Good luck in your search for a new oncologist, things can only get better!