6 months on...

Hi Liesle

Hopefully your Friday outcome will be positive....waiting for results is always stressful for patients.

Best of luck

Peter

Hi Liesle

Everything x for you  in Friday. My pet Ct scan wasn’t;until 18 weeks post treatment   The waiting’s the wors5 part sorry you're going through this. Wait and see what the mdt decides , I do know a few who have had neck dissection post pet Ct scan as activity was still showing. 

hugs Hazel 

Thanks Hazel.  I'm not too bad with the waiting... just thought I'd have a more definitive scan by now. Don't want to get ahead of myself but neck dissection at this stage feels like such a step backwards.  I'll obviously do whatever needs to be done.  Usually take these things in my stride but this has knocked my confidence a bit.  Will regroup after Friday and set myself some new goals but for now feel like I'm having a bit of a wobble! Lx

Liesle R said:

Had the PET scan last week (6 March) and the results show low level activity where the neck lump was. Said it is unlikely to be disease but not 100% certain

I had activity on my PET too. I had a proper biopsy under general six weeks afterwards and it was negative. Some trusts wait three months and re-PET. 
If the surgeon is simply going to remove that one lymph node I’d be tempted to go for that 

Thanks so much for this Dani. I'll see what they say but helpful to know about your biopsy under general and grateful to have your thoughts on removing that one node. Will update when I know more... 

Good luck 

I was really cheesed off. It's madness to think you've done all the treatment for nothing. I was told it's very common to have avid PETs but really rare for treatment to fail this early

Hi Liesle I have been given the all clear twice  only for a pet scan to pick up issues and unplanned  surgery to find 2 lymph nodes cancerous out of 33 after a neck dissection . They are the experts and are going for the best fix possible. All the Best Minmax We all have to go through the uncertainty of what are scans will show which is stressful to say the least.  

I am generally ok managing my worry/stress levels.  I tend to 'hope for the best, plan for the worst' but I just didn't expect to still not know after 6 months... (clearly an oversight on my part!). I'll wait to hear what comes from MDT tomorrow but still feeling a bit deflated.  

News from MDT is good. The radiologists came with comparisons of all scans and said the node has not only significantly reduced but we’re seeing continuing reduction. The ‘low level activity’ not classed as ‘avid’ so doesn’t need further investigation. So, a good response to treatment. I will have another scan in 3 months anyway + continue with regular monitoring. They said this is news to be celebrated… Such a relief. 

Liesle R said:

Such a relief. 

Great. That is wonderful news