Ill-defined opacity in right lung- what would YOU do?

I don’t know what to think or do, really. I have had so many problems since being diagnosed in 2007, that I am just so tired now.
So my history is…triple neg large tumour with heavy lymphovascular involvement and warned that it will probably return within 2 years, as histology was bad. Had mastectomy, FEC, Tax and Rads.
Last week I saw onc, and I insist on seeing scan results, as I am fed up with being lied to as I have been on many occasions. The CT scan showed an ‘ill-defined opacity’ in the right lung. Now I was a nurse in my past life, but even if I had not been, I would be fairly sure this would be of some concern.
Yet my Oncologist just said that he wanted me to have a plain chest x-ray before I see him…get this… in 6 months time!!!
Will somebody please tell me that I am right to be concerned? I am so fed up with fighting the system. I have long, long history of lost scan results, appointments promised but never booked, and consultants playing God with knowledge about my body. I now have my medical records from the past 5 years, and I always insist on having all my results in writing, even though this can sometimes take up to 3 months before I actually have them!
My general health is not good, and I am running out of fighting spirit, so what would you do? Should I insist on seeing him earlier, or be laid back about it, accept what he says, and try to forget about BC for 6 months?
Sorry about the long moan,
Best wishes,
Jax

Hi Jax, I think you have every right to rant. Yes, i would definately make a stance about your treatment. This is NOT acceptable. I know there are people or organisations you can complain to but not sur exactly who they are. Others on the site will certainly know. I know one of my bc friends complained to her MP and got everyone on bcc to e mail him about her terrible treatment. The MP had so many replies that his e mail box was full up !!! It must be so hard as you are feeling so unwell to carry one struggling against the system but try it. You may be surprised about how much you can achieve. If you want any help with this PM me Jax. I and others on this site are all behind you on this one and want to help in any way we can.

Rachy xx

Hi Jax,

I understand your frustration as well. Like you I am one of those who wants to know exactly what is going on. I don’t want that sort of protection, and unless I have indicated otherwise to my onc I want all the detail - it is my body. In your case I would start perhaps with a request to the onc or even the Consultant, either thru his secretary or thru the BCN for an appointment to discuss your situation with him, and take it from there.

Dawn
xx

Thanks Rach, I will e-mail you later, and thanks, Dawn. I know I should have it out with him, but he gets me screwed up before I even see him, cos I know it’s always a fight for info. Last time I had an appointment with BC nurse to try to make him understand when they have their meetings how important it is for me to have info. She admitted that he is one of old school. Last time (3 months ago) I had such a fight on my hands to get my CT, bone scan etc, and it did literally take such a huge effort and I am just not up to fighting at the moment.
Pehaps, if I just lay low for a while, collect my energy and resources together, and then try again. I have the x-ray form so I have a good mind to go and have that done in a couple of months, as they aren’t dated!!Then, if there is anything more showing, surely he will HAVE to talk to me?
When I was first diagnosed, the surgeon said I would have to see them every 3 months, but this guy always tries to get away with 6, unless I push. Weird isn’t it? Maybe he is on a low budget?!!!

Jax isn’t there another oncologist who you can ask to be transferred to in the same hospital. This all sounds so unsatisfactory for you.

Dawn
xx

I’m completely out of fight right now, Dawn. I just can’t face the hassle, so feel like curling up in a ball, and letting it all go on around me. I have fought so hard, and had such bad treatment from so many quarters, I don’t think I can be bothered any more.
Sorry to sound so negative. I asked you girls for help, and you have been so kind to reply. Thank you so much.
Jax