Surveillance

Hi Coffeequick , it’s awful isn’t it? 

I was just talking about scan result waiting times with a friend on Friday. She has just had scans to revisit an anomaly found on her lung that was discovered by accident when she had a scan for something unrelated, she’s been told it’ll be approximately 8 weeks for the results! She emphasised the stress that’s attached to such a long wait & was told that’s just the way it is at present! What the heck is going on?? She has paid privately for several medical evaluations & a couple of procedures over the last couple of years but is now at the end of her financial tether & is having to rely on the NHS & their never ending waiting lists again. 

I’m really sorry that you’re experiencing this right now & empathise how distressing this situation is. 

Nicola 

Hi Coffeequick,

I can't believe you have to wait that long to get results and feel for you completely. I live in the US, where there is a law that requires that most test results are delivered to the patient without a doctor reviewing them first, so results come a lot quicker (usually 24 hours to a few days at most). This is a bit controversial, though, as some patients don't want to know, but for me, I'd rather know than live with uncertainty for weeks on end. I wonder if the UK would ever consider such a law?

I know that such musings don't help you in the moment, but please know that I'm wishing you a speedy few weeks until the end of April and that your results give you the all clear. Thinking of you. Xx

HelloCoffeequick Yes, this is a really stressful time and although you won't get any answers for sure until that appointment in April, I assume you have had some check ups in the meantime. Did you see the oncologist, and perhaps have a rectal examination, and if so did they give you any indication of how you were doing? 

If they felt all is going well, I think you can take some reassurance from that, and whenever you get the heebie-jeebies about those scan results, keep thinking back to your previous appointments and tell yourself you're doing fine so far. You've got through the treatment and are healing now.

These scans are important to make sure all is still on track, and to rectify things if not. But so far so good. I wish you all the best. xxx

Hello Coffeequick 

I am so sorry that you have this wait ahead of you.  The scanxiety is very real.  I can completely understand how this wait is unbearable before getting your results.  It is an ongoing subject on here about how some hospitals have these long delays and others get it just right and are outstanding.

I can only guess at the reason for the delay and am thinking of you as you wait and keeping everything crossed that you have a good result.

Irene xx

Thank you for your kind words.  I had the full body CT scan 1st March but no result until my appointment end of April.  I did undergo a EUA in December for a nodule remaining but a biopsy confirmed no disease present and it was scar tissue but the fear of reoccurrence never goes away despite what I try it remains in the background as I know that reoccurrence is at its highest within two years of treatment.

I will just try and keep strong and hope no news is good news.

Hello, I reacted to Fluracil 5 and they switched me to Raltitraxed - all going very well and juat as effective (with less side effects!). They use it less ad it is more expensive. May be worth asking? Xx

Hi Coffequick,

 I feel for you. The waiting can feel interminable. 
Like you, I also had 8 week waits for scan results and remember posting about it last year as couldn’t believe that this was normal. 

It seems that some wait longer than others and it’s purely down to the resources in the area you live. I would certainly hope that if there were any abnormalities picked up that you would be contacted sooner so hopefully no news is good news. 

I remember asking if I could get the results prior to the appointment and was firmly told that it was against policy to do that, which just made me more worried. 

It’s not great however and really prolongs the scanxiety for way too long. I don’t know what to suggest but could it be worth speaking to your team and asking if they can help? I think some forum members get a call from the specialist nurse prior to the appointment but this must be down to local protocols.

Sending hugs xx

 Coffeequick 

I don't know of anyone who had no symptoms at all during treatment but we all react differently; a few people carried on working throughout, some couldn't have, fatigue can often catch up.  But the important thing to remember is that the symptoms don't all come at once and are much more towards the end of the course.  

During treatment the team should be very much on the ball checking you (and your heart if you have a pre-existing condition) and we always stress to keep them informed if you need extra help in painkillers or creams.  They are normally very responsive and can prescribe the same day if needed.

@TheMont posted a very old link a couple of days ago but everything mentioned is just as relevant today 

 Collective info BUMLANDERS 

Please come back and let us know how you are getting on.

Irene xx

Same , I have my 1st scan on April 22nd after finishing treatment in January but don’t have my app with oncologist till May 22st , it’s going to be a long month …