Ct bone scan reporting

OK - just know that it is within your rights to ask for an appt at ANY TIME if you think things may be changing in between scans xxxx

@arpie I saw my oncologist in August when she ordered the repeat bone scan. Blood tests and mammogram. Go back this coming August for follow up. Going every 6mths now. Unless things change dramatically.  2scans now since the one that spotted it. and the size hasn’t changed so I just have to be a bit more patient. I’m just scared it’s suddenly going to take off or more pop up elsewhere.  
I suppose we all live with that fear. 
I,m not so stressie now that I,m saying the big NO more often and speaking up when someone has annoyed me. When I’m overtired and been in the car too long the niggling pain is worse otherwise it’s just like a pulled I’ve pulled a muscle in my but if that makes sense

@cranky_granny - you should have a direct line to your oncologist's office or the oncology ward at the hospital who would advise the Onc that you are wanting to make contact - and the Onc should get back to you in a timely manner. 

I hope your GP sends some skin scrapings off for analysis ..... if they haven't, maybe ask for it to be done.

Definitely do 2 copies of your questions & put one of them in front of them, on their desk ...... if they don't answer them voluntarily - ask them to!  ;)  Use the 2nd copy to write notes on.

How long since you’ve seen your actual Onc?  Do you take anyone with you as an extra set of ears?  If you are having difficulty following what is going on, can you get a Breast Care Nurse to sit in with you to explain it all in a way that you can understand?

I’m with @Lisa1407 on this one ... you should be having more regular check ups whilst the bone lesions are actively changing ... if you aren’t up to it yourself, maybe a breast care nurse or ask the BCNA team to intercede on your behalf? xx

take care xx

@cranky_granny isn't it amazing that despite us having cancer and lacking energy from the treatment, we don't get any extra help. I am single and have two teenagers, but my situation gets no consideration!! If we don't put ourselves first, no one else will!! Good luck!

@Lisa1407. That is not what i used to be like. I have just no energy at the moment 
1st aim is to offload the biggest problem so i will have time to put  myself as 1st priority again. 

@cranky_granny - no problems if you want to be a mud crab! Everyone is different. You do whatever you need to so that you can get through each day. xxx

@Lisa1407 i have done the naughty and googled the issue about the appearance of the thing on the back of my leg. Though not common it is known you can to get skin cancer mets.  my GP is watching it. 

Hi @cranky_granny, I note that you had a moderate increase in activity presumably in your bone lesion and are on tamoxifen. Are you happy to wait 6 months for your next scan? I have bone mets in my hip that are 'mildly' active at the moment and so my oncologist has said that I have to come off Xeloda and onto something else within the next 8 weeks or so. She would have already changed my treatment, but she says we have some time and she is trying to get her hands on another oral treatment that is currently in development that is targeted to the mutation I have. Apparently access to new drugs has slowed substantially due to COVID.  Despite her not being in a real hurry to move, I am having 6 weekly PET scans, having blood tests every 6 weeks to measure for the levels of my mutation and I have appointments with the oncologist every 3 weeks (mainly due to the cycle time of Xeloda). My next appointment is on the 15 March and my guess is she will make a definitive recommendation about a new treatment (likely to be IV chemotherapy). In your situation you have moderate activity and may need to be put on alternative treatment. Whilst it may not be urgent, I myself would be a little concerned about waiting 6 months. I don't want to alarm you, but given that you didn't get a great service from the Registrar and Resident (they need to be reprimanded for their lack of attention), you should think about asking to see your regular oncologist sooner. Or perhaps you could have a telephone call with either your oncologist or a breast care nurse if available. If you need to change treatments, it is important to change before your cancer spreads to other places in your body. The more spread the harder things are to control! I am just wanting you to get well looked after - you deserve it and your overall health depends on it!! Take care Lisa xx

My oncologist emailed me copy of my bone scan as I requested it.  

@arpie I’m not sure as I still don’t understand any of it.  
Maybe ignorance is bliss in this case. 
I had a list but never got to it. Afraid he left me feeling like an idiot
one question I didn’t put properly was if there is any link with skin cancer