Just a rant/offloading - no need to read or reply if you don't want to!

Well, I decided I wasn't going to accept a telephone appointment. I spent two long, painful, wasted years begging the GP to believe me that it was more than a frozen shoulder. If the NHS had done their job in the first place, I wouldn't be here now and I decided I wasn't sitting around for another two years waiting for them to do something about the pain. I phoned up, was politely insistent and I now have a face to face appointment. 

Well done, it was worth the effort!

If I was reading my life as a book, I would have scrapped it by now as being too unbelievable.

I walked into the onc's office today - now, the last time I spoke to him on the phone he told me it was good news and my bone mets were stable which was a shock as it was news to me I had had bone mets since the beginning. Anyway, I walked in today and he told me it wasn't bad news, the tumours in my lungs and liver were  something about being slightly increased but not enough to measure. 

LUNGS? I more or less lost it with him and told him that nobody had ever mentioned lungs to me before - in fact, a previous oncologist had pointed out that there were inflammatory nodules on my lungs - probably from a previous chest infection - and they were NOT cancer and I was NOT to worry. 

I told him that it is something new every single time I speak to him and at this point, I have no idea where the cancer is - I'm told something different every time I speak to anybody. 

He checked again and said "oh no, you don't have it in your lungs - those tumours are benign". I asked him if he was sure because at this point I have no idea what I have or where - he checked the previous three scans and there was nothing on my lungs in those. 

He said he would double check with the....now I heard him say "urology" and my husband heard him say "geology"... . team to make sure of this. Still confused about that.

So he asked how I was. Now - the last time I spoke to him, I asked if the surprise news of the bone mets were causing the random bone pains that my GP had blamed on Tamoxifen and Docetaxel. He had agreed this was the case.  So he asked how I was today and I told him "...the same. Still in pain.. He asked where - shoulder and hip - how long? "Shoulder, four years - this is the reason I got sent here in the first place - two years of my GP pretending I had frozen shoulder and the hip for about a year or so. The chemo helped the shoulder pain massively, but it's still not 100% pain free" 

Now, when I got the news about bone mets, and the onc told me I had them but he didn't know where, I requested and received my CT scans, GP letters and reports. 

So I know for a fact that the two places where I am in pain are two places where there are metastases. Guess what his next words were? Not anything to do with metastases - oh no. He asked if I had ever been diagnosed with arthritis!

I just...well. I had no words. 

Anyway - the upshot was that the bone and liver mets have increased very marginally - not even enough to measure. He wants me to stay on the Tamoxifen because he feels it's still doing its job AND I finally got the permission slip for Denusomab signed which was the reason I wanted a face to face in the first place.

I don't half have a headache after rehashing that lot on the way home! I just can't wait to see what the urologists and geologists say when he trots up asking them to look at my lungs! 

There are no words...

I really hope you get some satisfaction soon - actually I wish you had my team working for you...

You must Stay Strong

SiT

Hi MooCoo, I’m assuming the urologists/ geologists were actually radiology the department that interprets your scan results . I know my team when my lumps and bumps haven’t matched the scan report my oncologist has asked for a second opinion of the scans. It’s not nice when the faith in your team gets rocked. 

Not adding to the thread, just wanted to say nice to see your name again KTatHome.

This post is just a reminder to myself, really. A fortnight ago today, my first denosumab injection was cancelled because my vit d was too low. A fortnight of supplements has brought it back up and I have my first one today.

At the phone appointment today to get the blood test results, he told me had had gotten the multi-discilpinary team to review my scan and they can't decide if the bits in my lungs are mets or just inflammatory lesions. Too small to tell, apparently. The plan is to wait three months and do another scan to see if they've grown or not.

So, this hospital doesn't know where my bone lesions are, just that I have them - there's something in my lungs but they don't know what......I think it's seriously time to figure out how to go about changing hospitals or at least doctors. 

I feel such a numpty when friends and relatives ask  how things are - I have to tell them "I don't know. They won't/can't tell me."

Off for the denosumab now. 

Hello MooCoo, I don't know what you should be doing for the best but something needs to change. Some people have brilliant teams to look after them and some don't. Hopefully someone on here will suggest a course of action.

Good luck. X

 I can’t imagine what it’s like to go through all this without absolute faith in your team.

I’m all for informed consent but I sometimes wonder if we get too much information at times like this. My Consultant says our improved survival rates mean they’re dealing with more and more complex cases.I was admitted to hospital twice within 6 months with pneumonia & pleurisy and for several months afterwards it made the scans really difficult to interpret. Possibly lung mets, possibly consolidation from the infections, possibly a known side effect of the chemo I was on... nothing definitive. Like you I never expected anyone to say ‘I don’t know’

I’ve heard medical people say that bony mets don’t cause pain. That has certainly not been my experience. When I describe my pain it’s an almost perfect match of the bone scan. 
But the thing that leaps out here is your lack of confidence in your team. I would ask for a second opinion at the very least. 
Sending a virtual hug in the meantime xx

It is so hard to stand up for yourself when you are anxious about your diagnosis. 
sometimes we need to do that. I have had arguments in the past and asked for second opinions and it has worked well for me. I ask for the report to be sent to me and I view my own scans . There is a form I fill in when I have the scan and they send me a link on my e mail so I can view the scans. Another doctor can also access your scans and give you an option. It is important to us to know what is going on.