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

I cannot begin to imagine how you are feeling - I’m so sorry that you are being put thru this when it’s bad enough already!

 I think that I would be demanding a meeting with my lead onc to sort out exactly what’s going on and then agreeing a plan of action to be implemented ASAP to make up for everything that has or hasn’t happened to date.

Here’s hoping you get it sorted

Best

SiT

Bloody hell, MooCoo that is appalling. Can you even be sure that they just didn't tell you? Or did they somehow overlook the bond mets? Though if this oncologist has been there all along, and he clearly knew, it sounds like a communication issue. I hope.

You're probably way ahead if me on this, but for what it's  worth I think you should insist on an appointment to discuss what happened and how, and make your anger very clear to them. And then, at the same appointment  if possible, get a new treatment plan. Tell them in advance that you want both issues addressed at the same time.

I also think you should  complain formally, through PALS. 18 months of missed communication is simply unacceptable. 

Keep fuming. Don't let them off the hook.

Thank you - I do have another phone appointment with him next week, not sure why but at least it feels like he's paying attention. I won't be letting it go that easily. 

I never even thought of that - that they may have overlooked them.  That makes sense, actually. My GP told me the day after I was diagnosed that she had been told it was liver and lymph. That's what my treatment plan said. I've raised bone pain with her before and she's just put it down to tamoxifen. Therefore, I don't think the GP has been told.

I did receive one printout of one CT report last year - it was not mentioned on there. The only thing on there I wasn't expecting was a note about inflammatory nodules in my lung which were improving and which the onc said were probably from an infection. 

This is yet another new oncologist. I'm on my third now - haven't met this one but the last two left. I've seen two different oncologists and a few of their assistants and not one of them mentioned it. This one acted all surprised that I had no idea.. As soon as I asked if there was anything else I could be doing (I actually meant medically sanctioned overdose of cheese for the calcium!) he came up with a treatment idea. Why was I not offered this before, if they all knew about the bone mets?

I keep wondering - is it a) they just ALL forgot to tell me or my GP  (unlikely)

b) Have they appeared SINCE the initial diagnosis which explains why they weren't on my treatment plan but doesn't explain why I wasn't told at the time and also doesn't explain why the Tamoxifen is continuing to work - and would they appear anyway, given that I was on a medication that beats them?

c) Was he even looking at MY notes? It WAS a spur of the moment phone call from him after I whined to his secretary this morning. 

or d) this scan was done by a private company in a portable scanner because of Covid. I don't know if they reported on it or if it was the usual hospital radiographer who reported it - if it was the private company, maybe they were more efficient? It doesn't explain why the hospital missed it/failed to tell me about it on the other scans, though. 

Ah, the more I think, the more puzzled and confused I get. I've already had to slap myself because I started down the "what if...." road and thought about what could have happened if I'd plucked up the courage to to take my congenitally clumsy self on a zipline or paraglide and landed in a heap.

Thank you for the PALS idea - that is a very good one and something I am going to pursue. I don't want this to happen again - I want to be able to trust them to tell me everything and I can't do that now. I've also downloaded a permission/release form to send to them in order that I can see my CT scans, reports, and any relevant letters. 

I keep telling myself that the takeaway from this is that the treatment is working and all lesions are shrinking....but I'm just finding it so hard to enjoy that knowledge in the same way as I have after previous scans. 

I know exactly how you feel last year when I was first diagnosed with cancer and going through all the treatments etc with my consultant I was half way through my first chemo sessions when my best friend wanted to know and I did about why my cancer was rare as had never been explained to us we were only told it was ovarian cancer that's why I had to have a full hysterectomy operation was told after the scan afterwards that it had shown up that I had cancerous cells still and chemo would be the start amazingly and total shock and horror and every other emotion he casually dropped in the conversation that there was NO CURE FOR ME as the the cancer cells had spread to my other organs at no point in all the conversations we had had did he tell us that and my best friend takes notes at every meeting so nothing is missed we were devastated to say the least he thought we had been told right from the start of chemo but no there is a huge difference to believe you are having treatment for a cure to bring told incurable I get stressed at the best of time never mind this information we should of had at the beginning he did apologise but to be honest I didn't care the shock of the way we found out was just too much to handle and to be honest tipped me over the edge I didn't want to bother anymore with treatment and life itself and then I thought right you have always been a fighter fight this as long as you can and then I found this site which has been a lifeline to me with all the help and support everybody gives me on here and I always try to help others out so I know how angry and upset you are about unexpected shock news I hope you will get everything sorted out here is a big hug from me xxxx

Aw, thank you. What a horrid experience for you. I did know there was no cure for me and the best we could hope for was to keep it controlled but in those dark moments when you wake up worrying, my mantra has been "6 little bits. 6 little bits. That's nothing and they're shrinking anyway." Now I have no idea how many "bits" there are or where they are - he wouldn't tell me which bones they're in - only "multiple bones". That's not good enough for me - I want to know WHICH bones so I know what pains to put down to what. 

 They have only scanned from neck to pelvis - do I worry about the random pain in my arm or shin? Should I worry if I - and I frequently do - fall over the dog/my own feet/ an unspecified invisible something?  I am famous for being clumsy - people run screaming when I pick up a power tool or get the lawnmower out because they know blood will ensue - I keep wondering which  bones I have to treat as though wrapped in cotton wool and which are fine.....grrrr! 

Hugs back atcha!

I know it's an absolute roller coaster of a ride for us and you sound going frantic like me you start to think of every twinge of pain is this another bit the cancers are nibbling on or I also call it it's having another picnic on me and I shout back YOU HAVE HAD ENOUGH OF ME ALREADY!!!!!!I feel better when I have shouted at the cancers daft I know I but it helps and if I were you on your next conversation with your consultant go through everything and don't let go like a dog with a bone until you are clear about everything you need to know and you understand what is being said my best friend has writes down everything that is being said and also you write down what you need to know and say because your mind can go blank and get confused and you might miss important information I get so worked up and stressed when it's results day it takes all my senses to get out the front door all I can think of is bad news I am going to get on a lighter note I do have to giggle about power tools etc that's what happens to me xxxxx

Good tactic, shouting at it - I shall steal it and claim it as all my own work, I think!  I used to think the leg pains were down to Tamoxifen and proof that it was doing something  so I would tell them - in a Danny Dyer voice - '"ave it!" Worked with chemo side effects, too. I don't think it'll work now, so I'll try yours!

It just makes me so mad - I spent 18 months telling the doctors - "this pain in my shoulder/arm/chest is really bad - are you sure it's not cancer in my shoulder bone or the breast cancer come back?" and they were all like "you're a hypochondriac - sod off!" and today I said to the consultant "would these mets be the reason for the pain in my shoulder bone?" and he was like "well, duh! What did you THINK the pain was?!"

Good idea on the writing down. I usually take him with me and he remembers everything that's been said word for word - but of course that's hard to do on a telephone appointment. I could put him on speaker phone but the echo is awful haha! I will definitely make a list of questions though. I've meant to ask four times running how I would know the difference  between menopause and Tamoxifen antics and have forgotten each time! Now I have a whole load more questions to harass him with. 

I use 2 note pads one with all the questions on I want to know like a new pain I have experienced etc and the other one my best friend writes down the points the consultant is saying and then we both have a highlighter pen for items we want more information on or we are not sure what is being said that way nothing is missed the phone call one of you can both manage with an echo fine but if not still write everything down and highlight that way you are clear on your questions you wanted answering and consultants answers as well I am quite a celebrity on here for my weird ways of coping but that's just me anything to get you through the day ha ha 

Hi MooCoo

Hope it's OK to reply. I have bone mets from kidney cancer. I have a four weekly infusion of Zometa  / zoledronic acid which is a bone strengthener. I wonder if that's what you might be given? Initially the immediate side effects were flu like symptoms, so bone ache, where I didn't have mets! So a bit random. But after the fourth / 5th round I stopped having any effects and the difference in pain was fantastic almost from the first treatment. I've also just been started on 3000mg calcium tablets daily.

The infusions were stopped over lockdown and I really noticed a difference after a couple of months. I've had my first one again and I already feel so much better for it. I've been having them 4 years now.

Also, re your scans - I have a met in my skull - so always a head CT as well as chest / thorax / abdomen / pelvis.

I've been told that if I have pain in limbs that they will be checked when I note it.

You have a right to know exactly where your lesions are. I'd be seriously pissed if I was treated in the way you have been. Each CT you have will have a report associated with it. Ask to see every single one of them, so that you have the information that you need to ask the questions you want ask and make the decisions that you need to make. Oncologists often just look at the cancer whereas we need to look at our lives in the round. 
Hope you get some answers soon.

Jo x