FLUID ON HEART AND LUNGS / SPOT ON SPINE ANY ADVICE PLEASE?

Hi Everyone,
I am a new member to this community and I would like to say a big hello to everyone out there.
I came out of hospital last week. My GP referred me there, for pleural effusion. They found no fluid but referred me to their Oncology ward. They tested for clots etc. Nothing was found on scans apart from some fluid around heart, which they are monitoring. They could not find reason for breathlessness (I now have oxygen at home to relieve symptoms) and restricted voice/speech.
I saw the my oncology consultant briefly in hospital. He said it was the cancer spreading in the tissues, hence not showing up on scan. This was causing pressure on nerves of voice box and phrenic nerve from elevated diaphragm!
He said to put off chemotherapy if I can live with the symptoms ie breathlessness, not being able to walk very far, voice…
It all sounds a bit bitty with many variables.
Friends are surprised he has not suggested chemo to halt advancement to other organs eg .
The oncologist also confirmed that for me to request a chest specialist (previously) I have to go through my gp! ((there doesn’t seem to be a holistic approach - my care is so fragmented - but perhaps thats the way it is for everyone, but the feedback i get from other women in the same boat is that they have much better care eg. “I dont ever go to my gp because they have admitted they know very little about cancer, I go direct to my Oncologist”.
Oh, they threw in (I only saw junior drs in hosp) there is a small spot on my lower spine which could be cancer!
Wondered what all your thoughts are and what would be the ‘right’ questions to ask my GP and consultant oncologist ?
A rather frightened Gloria X

Hi Gloria

Bumping this up for you - Sorry I can’t help with your post but hope someone else can and will reply soon.

Love xxxx

Dear Swissmiss,
Many thanks,
Love Gloria X

Sorry can’t help either, nut bumping, hope someone comes along soon to help.Maybe you could ring helpline?
Julie xx

HI Gloria
sorry to hear you are going through all this. I have no specifc advice I’m afraid but agree with your hunch that you shouldn’t really be having to faff around going through your gp etc. In my case, I can phone onc’s secretaries, contact my breast clinic at any time + I have 3 bcn’s phone numbers and they are all available anytime. It is upto your onc/ surgeon/ consultant to refer you to whomever you need to see if it’s cancer related.
Also with regards to the s an not picking anything up, I’m assuming you’ve had ct scans? If so, maybe request a pet scan as these are more sensitive + informative? Just a suggestion.
I would speak to your bcn + see if she can try to sort things out for you.
Wishing you all the best
tina x

Hi Gloria
I can’t really help other than I personally would push for further investigations and definitely a follow up appointment to discuss what your oncologist and the junior doctors have said to you. It would be surprising that no treatment has currently been offered so I would be asking why.
I am also bumping this up so someone else can come along and offer a bit more practical advice.
Nicky