Moving on from bowel cancer

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Jomo9

PET Scan False Positive

At the end of March I had a PET scan to see if I was able to have an ileostomy reversal. On the 1st April my GP told me that I was anaemic and so I emailed my Consultants to see if this was a cancer indicator as it had been when I was first diagnosed.

My Oncologist rang back later that day to say that the PET scan had shown up cancer activity in my anal passage, which was different to my colon tumour location, I obviously asked if he was certain and whether it could be anything else and he said no.

I waited impatiently for an MRI but in the mean time everything went through my head. Yesterday I was told that the MRI was clear and the cancer was a false positive, perhaps due to urine leakage.

In my head I am relieved but can’t believe that I have been put through this trauma for a third time. I was informed that I had cancer in July 2018, was told I was negative after a right hemi and 12 months chemo in March 2019 and then told I had stage 4 cancer six weeks later in May 2019. I then had 4 lots of chemo and then a year of Nivolumab Immuno until I started getting side effects in July 2020. I had been cancer free for almost two years.

=> Has a false positive PET scan happened to anyone else?!
=> Whilst I am asking questions… has anyone been measured for an ileostomy prior to a right hemi when it was only a risk and not a definite?

Hayleyc89

Hi. Sorry to hear you have been put through all of that but can I please ask what side effects you got from nivolumab? I'm asking as my husband has got ulcerative colitis after having a really good response to it for 8 months he's now been taken off treatment and is doing watch and wait and if anything happens he will have chemo again and targeted therapy.

Jomo9

Hi @Hayleyc89 I was only on Nivolumab for about a year (Sep 19 - Aug 20) as managed to get most of the side effects on the list. My last two were pneumonitis and then colitis. I had two stays of two weeks each time in the Christie for the latter. It really took a lot out of me and I had severe cramps in my hands, arms and legs. I had steroids for both illnesses, ended up with three courses in total due to getting severe headaches as the tapering took a while to get right. My treatment was then stopped.

Hayleyc89

My husband is currently on he's second hospital admission with colitis he's on iv steroids he had a dose of infliximab the 1st time and they want to give him it again but he has covid so they can't yet! My husband is on watch and wait for the time being and they have said they will do 3 monthly scans and if anything happens they will give chemo and panitumumab have they said anything like this to you?

annie50C

Good to hear you doing so well @Jomo9 .. what a relief ? :x::x::x::x:

louise28

hi @Jomo9 so am i right in thinking then that youre NED other than this blip which the MRI has shown not to be cancerous? That's great. I had a PET scan in March and was told that the PET scans do often throw up false positives as well as false negs. I've got v mild avidity in one spot where they arent sure if I've had an infection or inflammation, whereas the cancerous bits are close to original tumour and assumed (based on my history) to be cancerous. @kathyS also had some chest nodes show up on a PET. These were then biopsied andcame back negative, so it does happen. :x::x:

Jomo9

Yes, now awaiting my stoma reversal!

Bumblebeebum
Quote from @louise28:
hi @Jomo9 so am i right in thinking then that youre NED other than this blip which the MRI has shown not to be cancerous? That's great. I had a PET scan in March and was told that the PET scans do often throw up false positives as well as false negs. I've got v mild avidity in one spot where they arent sure if I've had an infection or inflammation, whereas the cancerous bits are close to original tumour and assumed (based on my history) to be cancerous. @kathyS also had some chest nodes show up on a PET. These were then biopsied andcame back negative, so it does happen.

@louise28 can I ask what you mean by 'mild avidity'?

I had my 1st 6 month surveillance CT 4 weeks ago and results were overall positive, but my stoma nurse said the consultant 'saw something that may be insignificant'
She mentioned that is was 'incidental' and probably something to do with my LAR surgery and temp ileostomy. She said that they got a 2nd opinion and that consultant doesn't think it's sister either, maybe inflammation....but to have another CT in August. I've requested an MRI instead, so just awaiting to hear if that will go ahead.

My prognosis was good in December, I needed no further treatment - I had radiotherapy and chemotherapy prior to LAR.

Thank you 🙏🏻 sorry @Jomo9 for jumping your thread

louise28

hi @Jomo9 fantastic you are NED but I do understand the worry..
@Bumblebeebum not at all. Mild avidity means a pet scan showed a little bit of uptake (glucose is injected and tends to show activity where there is cancer present). So if you'd had a CT scan you wont have a description of avidity.... CT scans are mainly good for looking at structures, so they may show some inflammation or some post op changes. If they dont think it is suspicious, then I would take that as good news and they will keep an eye on you. In my case I had enlarged nodes on a CT scan which triggerd pet and nodes were cancerous. :x:

Bumblebeebum

@louise28 I pray that it's nothing. Thank you for your reply :x::x:

belinda66

@Jomo9

I am sorry to hear you've had a false positive PET scan and the other trauma you've had with information that later turned out to be different. False positives are one of the rare (I think) unfortunate facts of diagnostics and the effect on the patient can be devastating. I've never had a false positive PET scan but I had a false positive mammogram and can't begin to describe the anxiety I went through after being told it was almost certainly cancer when it wasn't.

I experienced a false negative at the beginning of what was actually colon cancer and it was traumatic but was lucky in that it was relatively early. I hope you feel better about this and that all goes well.