Stress around check up... thanks for listening and help!

Public Archive
1

For those who have been reading the threads I regularly post on, you might have already read the bad times I’ve been having. But want to do a summary here and get a few suggestions.

Was planned to have a PET scan this week. - I saw onc on 5th Jan to arrange this. Last Wed (19th Jan), I thought that I should have heard something about the scan, but not a word. So I phoned the hospital and the lady at the reception told me they haven’t got a referral from my onc! I phoned my onc on Fri (21st Jan) and he was too busy to reply. Rang on Sat (22nd Jan) and he said he’ll do it on Mon (24th Jan) because he had a broken arm and running behind his work. On Mon (24th Jan), got a phone call saying that the referral has been sent and I AM EXPECTING A PHONE CALL FROM THE HOSPITAL FOR AN APPOINTMENT. Today (26th Jan), I RANG THE HOSPITAL to ask when is my appointment and was told that A LETTER is on the way to say that my appointment is next Tue (1st Feb). Now I have to change my appointment for result to 9th Feb.

For those of you who are with NHS, a month is probably quick or normal. But as a private patient, I expect better than this. Whether you are NHS or private, at least when they say they’ll book a scan, they should do it.

Mixed in with all that was a delayed prescription for IV Zometa and Arimidex tablets. I had to make an extra trip to my GP to get some emergency Arimidex tablets because they run out.

This is not the first time things like this has happened. With me planning (and also encouraged by my onc) to go back to work, I do not know how I can manage it with delays like this keeps on happening. I mean which day(s) should I ask for leave??

Changing onc would be my last option, his choices of chemo and hormonal tablets in the last 19 months has partly lead me to the stable condition today. So, I’d say he’s medically very qualified.

Going back to NHS?? Will the waiting be shorter??

This website has helped me hugely in not letting BC control my life and keep me positive. Now things are stable and looking more positive, and this…

Time around check ups / scans / scan results is the time that remind us that we are still sick, that we have BC. I am just so angry and upset about the events happened in the past few weeks and the silliness around it all. Poor communication, lack of compassion and the whatever else you want to add.

I thinking I’ve said enough now. Thanks for listening…

xxxx

2

Sorry you’ve been having such a rough time m1yu. I am NHS, don’t have any experience of private, though my cousin did it that way and said she felt left on her own a bit. Maybe it’s the wait for the scanner? Sorry I can’t help, just wanted to send hugs for you. P xxx

3

Hi, I guess, with the NHS it can vary from postcode to postcode but I’m an NHS patient and have never had longer than a 2 week wait for a scan with the results days later. Take Care…x

4

Thanks peachez & belinda.

I live in Bristol. If anyone is treated in Bristol and is with NHS, the waiting time and the availability of PET scan would be appreciated. Thank you.

xx

5

m1yu,

Hello, I’m a NHS patient and know PET/CT scans are not offered regularly but before Christmas my breast Consultant obviously got the wind beind a wet sail and put me forward for one, at Linton House in Cheltenham. I didn’t know anything about this but my scan in on the 7th Feb. So I’m thinking there may be a waiting time for patients from whatever source they come from, private or not. I don’t know about you but at least I feel once done and the results through I will be in the best position to get the most effective treatment as apparently these scans show up everything. Must remember not to have a curry the night before!!!

Much love.

Myfanwy x

6

Thanks Myfanwy,

That’s where I’m going to have my scan, too, even though I’m private.

The things is when I phoned the hospital on Wed (19th Jan), they told me that if my onc can fax the referral on the 19th or 20th, I can have the scan on the 24th or 25th. Obviously my onc didn’t bother to do it and only just managed to refer me when I was supposed to have my scan. My onc was expecting that they would give me a ring as soon as they received the referral to book me in, while the hospital was in no hurry and sent me a letter.

If it was one of their relatives, I wonder how long she has to wait…

Don’t get me wrong, this is the 2nd time I’m going for PET/CT scan and I know how wonderful they’re for diagnosis. And I’m very grateful I can have it.