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

Hi MooCoo

Its good to rant. It is infuriating to have worked yourself up to get some results and then find out your Onc didnt even know you had a CT recently. I have to say, I have always waited a couple of weeks for results, the only time I got them in less was at the start of lockdown when the Onc rang me the day after (!) to tell me all was stable. I was a bit flabbergasted and asked him if he was mistakenly looking at the scan from 3 months ago. He wasnt. Had a CT in July and didnt get results till next review in August. Really hope you get your results soon and your OH and you can relax for the next few months. If relax is the right word!.

Thank you for the reply!  I don't know how you put up with a couple of weeks wait - it would drive me mad! My hospital always does it in two or three days. In fact, this appointment was one that should have been done three weeks ago but they had to delay it because they booked a results appointment but not a CT appointment (second time this has happened since covid began) and when I rang to query it, they told me they couldn't fit in a CT s they needed 48 hours to process and report it.

I just keep thinking that I haven't seen an oncologist since last year! I think we should all be classed as victims of covid too - it is certainly making some of us suffer!

Oh you rant all you want to that's what we are here for I am the same as you worrying over scan results is a nightmare like you say it's what we live for its really weird as for me when I feel ok that's when I get bad blood results etc and yet when i feel rough they are good results I can never work it out I hope everything works out for you in 2 weeks xxx

Thank you - I'm sure it will. I feel fine other than tamoxifen side effects and I'm sure I'd know if something was playing up..... Hope everything goes well for you too!

Hey MooCoo

Honestly I think one of the primary purposes of this community is to be able to let off steam when necessary so, You GO Girl!!!!

My next scan is late Sept so not too worried about the primary and mets, they'll do whatever they want to... MUCH more concerned about progression to the brain but we'll see...

Also, I have never waited longer than a couple of days for results and occasionally they've been delivered on the SAME day...

So let it all out as and when you need to........

Yes it is good to be able to say things that we don’t want to say to our family 

it is hard sometimes putting on a brave front. I try to keep positive for them and for me but sometimes it is hard.

i don’t talk about my cancer in detail with friends but feel I can say things here 

Ruth xxx

Umm MooCoo, you are reminding me of my late scan results. The first time a number of years ago I attended for results 2 weeks after my scan and when we entered the room the consultant was missing. She came in a few minutes later apologising that she had been chasing up the scan results for me and that they weren’t in but she would phone me at 9am the next morning to let me know the results. The second time A few years ago again after a 2 week wait I saw a registrar and a student and he said my results weren’t ready, and he skirted over it like it was nothing lack of specialist staff blah blah. I told him that last time they were late my consultant chased them up and phoned me and that I expected nothing less from him. A mistake had been made as I was expecting the results today and I wanted to know what he was going to do to rectify it, that was more important to me than knowing why. I felt angry and angry for feeling angry. He then popped out returned a long 5 mins later and told me what date they would be ready for and arranged a phone call to give me that info. I don’t mind waiting 2 weeks or a few days I just want them when they are expected, I can shelve any worry when I know the time scale but I can’t shelve the frustration when I’m let down. 

I have had results in a few days during covid when not many scans were happening but it’s normally 2 weeks for results. I have enjoyed the quiet of the hospitals during covid. I went in for a blood test on Thursday and unfortunately it seemed back to a semi normal business, which I understand but found a bit unnerving. Lots of people needing catch up appointments, few patients coming in but with less staff at reception due to distancing, and chairs taped for patients to distance but some people still standing too close or pacing back and forth presumably with anxiety.   I have a telephone appointment next week and I am now glad it is by telephone.

I hope you hear soon and that the results are as expected. 

I totally agree I don’t mind if it takes 2 weeks or 2 days to get the results I just want them when I am told to expect them.

i now ring the radiology and have an argument with them. I ask them to tell me if the scan has been reported on. They can look it up in 2 seconds I have to explain I don’t want them to tell me the results just whether they have been reported on .

then they will tell me and I can get the report from my oncologist either by phone or appointment and I ask for a copy of the report and the scans 

it is good to fight for your rights we are the patient after all who has the right to as much information As we want.

Ruth 

I think all of us want to know scan results asap and any sort of delay send the stress levels rocketing

Well, I am so VERY ANGRY. I've been effing and blinding for the last hour. I managed to get the oncologist to ring me today. Just to recap - I have been told (and I have just confirmed this with the treatment plan letter I received) that I have mets in the lymph nodes and liver and a couple of hot spots around the original scar.

So he began by saying it was good news - the scan shows that the BONE LESIONS are improving. Of course I queried this, thinking he had the wrong person's results but no,. Apparently I have  bone mets and have had since the beginning but no b*****d bothered telling me. I am so, so furious and upset. He was shocked that I had no idea and went back through the last three scans to ensure they were improving - said something about  it should have said on the letters but as I told him, I've received no letters since the original treatment plan.

I asked if this explained the random  bone pains I get which my GP claimed was down to Tamoxifen - he agreed they  could be and offered a monthly injection. Too much in shock to catch its name but going by him mentioning a risk to the jawbone, needing a dentist appointmwent first and four-weekly treatment, I think it might be denosumab,

Asked him which bones it was in but he just said multiple. Didn't mention the liver at all.

 I am so angry though. It took 18 months for me to persuade them something was wrong, 18 months for them to tell me it was also in my bones - I asked him what the risks were to it being in my bones but he didn't really answer. I know I've already said it but I am so f****ing angry - pardon my language. 

Did I step into a DeLorean by mistake and travel back to the 50's where our health is none of our business?!