Update

Hello Nicky54 

I don't understand the difference in scans either but what I do know is that an area with cancer will invariably 'light up' on a PET scan, however, inflammation of the lymph nodes or any area also has this affect so it is not an exact science!  And it sounds as if your lymph nodes aren't lighting up at all.

And next Wednesday really isn't long to wait for your stoma op, it will make all the difference during treatment and afterwards.  Add to that once radiotherapy starts, many forum members were really surprised at how quickly their tumour shrank and had increasing relief during treatment, in spite of the side effects.

So pleased to hear you are feeling more positive, it will help you get through the next couple of months and hopefully you will be able to fully enjoy your daughter's wedding.

Good luck for next Wednesday, please leet us know how you get on.

Big hug

Irene xx

The stoma will make such a difference Nicky54 and once you get familiar with the process it will be second nature.

I am working all day in the garden, lifting, bending, no leaks or discomfort. I wear a support belt during the day and take it off for chilling and bed. Ask your surgeon about support belts and when you can start wearing them. In the early days after your operation, take care with your diet. I resumed normal eating after chemoradiation, smaller portions, lots of chewing and fluids and electrolytes.

I started my chemoradiation 10 days after the operation, so you won't have long to wait. Once it's healed and working I am sure they will get started.

Regarding your scans, Irene is 'spot on', not an 'exact science'. I had a lymph node removed that little up on the PET, but was not cancer. The CT showed a nodule in my lung, but the PET did not pick it up. Sometimes they are fibrotic and dead. I am sure the radiotherapy will be covering all bases and it's very effective at treating the main tumour and lymph nodes.

Also I was one of those people who got relief within 1week of treatment. Couldn't sit down, then a week later total relief. I hope it's the same for you.

Keep us updated and please ask if you need any stoma advice.

Ally 

Hi Nicky54

Good to hear that things are starting to move for you and it won’t be too long before you can start treatment.

On the scans a simple way of looking at it is the CT scan detects changes in size and shape and is usually used prior to diagnosis, and the PET scan detects metabolic activity and is usually used for staging.

I think nodes can become larger when inflamed or are fighting some sort of infection and so will be an area of concern on the CT scan if they are slightly enlarged or inflamed, the PET scan is very sensitive to picking up metabolic activity and cancer cells are very metabolically active but as Irene has pointed out they aren’t the only thing that is metabolically active (hence the strict regime when you have the scan) so not all that lights up is cancer.

In circumstances like yours the MDT will use their judgment and expertise to analyse what the scans mean for staging and treatment.

Also note you now have a number staging and your previous one was from the TNM system, according to both cancer research uk and Macmillan your stage would be 2b with the tumour size on the number system and that translates to T3N0M0 on the TNM system.

Hope you get some pain relief soon with the stoma op.

And fingers crossed that you get to dance at your daughter’s wedding.

Monty xx

Thankyou for sharing your experience and tips , very much appreciated x

Thankyou x I think I understand the terminology of the difference in scans a bit more now ! Appreciate your help x

Thanks Irene , I feel a lot more reassured now , happy now things are moving along 

will keep you updated xx

Hi Nicky54 , it’s great to hear things are moving quickly.

I completely understand your feelings regarding the stoma op but many people here that have had stomas pre treatment have escaped the painful process of bowel movements towards the end of treatment & the early stages of their recovery, you’ll get lots of support at your hospital with getting to grips with it. There’s also the Ileostomy, colostomy, urostomy and any other stoma support group here, if you’d like to join the way you have this forum just click on the link. 

It’s great to hear that you’ve a positive mindset, it really does make all of the difference going into treatment. 

Keep us updated on how you’re getting on, I hope all goes well on Wednesday.

Nicola 

Hi Nicola 

thankyou ! Yes I will be having my pre op appointment tmo so will be asking lots of questions, I might just join one of the stoma groups too for extra support and guidance,

Just keep telling myself Positive mental attitude!!! Can’t wait to see that light at the end of this long tunnel

thanks again x